Sunday, 8 November 2009
Tuesday, 3 November 2009
MRI Scan tomorrow!
Well finally have had a bit more confirmation - I have an MRI scan tomorrow at 5pm, and then I have to ring the ward on Monday morning to find out the time to come in. Hopefully there will not be any argument about beds.
I hate MRI scans. I'd almost rather have the operation twice!! I think I just focus all my nerves to that one thing that is unpleasant in the first place. I know it has to be done, and all that, but its a simple thing to hate without getting totally overwhelmed by it all. I won't allow myself to feel nerves or fear about the other stuff. It all goes in the very big dark cupboard in my mind - not a place to investigate!!
But I have found one, solitary, small pill of valium in the bottom of my drug draw, so that will help! Rescue remedy will not cut the mustard.
I am a bit concerned that its a normal brain MRI though - not a functional one - I guess they know what they are doing but I wonder how they can find the motor cortex parts for my face without anything lighting up or moving? Hey ho.
I have a dog client coming on Friday morning which will be lovely, he's called Barney and he's a special dog.
Niki x
I hate MRI scans. I'd almost rather have the operation twice!! I think I just focus all my nerves to that one thing that is unpleasant in the first place. I know it has to be done, and all that, but its a simple thing to hate without getting totally overwhelmed by it all. I won't allow myself to feel nerves or fear about the other stuff. It all goes in the very big dark cupboard in my mind - not a place to investigate!!
But I have found one, solitary, small pill of valium in the bottom of my drug draw, so that will help! Rescue remedy will not cut the mustard.
I am a bit concerned that its a normal brain MRI though - not a functional one - I guess they know what they are doing but I wonder how they can find the motor cortex parts for my face without anything lighting up or moving? Hey ho.
I have a dog client coming on Friday morning which will be lovely, he's called Barney and he's a special dog.
Niki x
Sunday, 1 November 2009
a week and a bit to go....
allegedly anyway!
Things are ok, head been bad some days, and good others. Have done quite a lot in the last few weeks, regardless.
Cirrus has had his full clip and looks smart but holey where he has sores from a bad attack of Sweet itch. Poor man. He's also worrying me with several patches of white line sepparation on his feet which could be a source for an abcsess. He's not been quite sound in front for a week. Beautiful timing of course.
Been going to church which has been interesting. Not sure on the religious stuff, but really enjoy the sense of community, and everyone is so welcoming and sweet. I don't like the Holy Communion thing though, apart from the fact I can't drink the wine, the whole idea is slightly distasteful to me. The idea of sharing a meal with people is nice however, so am ambiguious.
Am nervous. Am nervous that it won't go ahead. Am nervous about the fMRI. Am nervous about the operation. Am nervous about how much things could change in the next 2 weeks. Despite all, I'd rather not die! I wish I could really get on board with the hope, but I'm way to scared to get on that train again - I've been thrown off it so many times by now.
Niki x
Things are ok, head been bad some days, and good others. Have done quite a lot in the last few weeks, regardless.
Cirrus has had his full clip and looks smart but holey where he has sores from a bad attack of Sweet itch. Poor man. He's also worrying me with several patches of white line sepparation on his feet which could be a source for an abcsess. He's not been quite sound in front for a week. Beautiful timing of course.
Been going to church which has been interesting. Not sure on the religious stuff, but really enjoy the sense of community, and everyone is so welcoming and sweet. I don't like the Holy Communion thing though, apart from the fact I can't drink the wine, the whole idea is slightly distasteful to me. The idea of sharing a meal with people is nice however, so am ambiguious.
Am nervous. Am nervous that it won't go ahead. Am nervous about the fMRI. Am nervous about the operation. Am nervous about how much things could change in the next 2 weeks. Despite all, I'd rather not die! I wish I could really get on board with the hope, but I'm way to scared to get on that train again - I've been thrown off it so many times by now.
Niki x
Saturday, 3 October 2009
A date!!
FINALLY got a date for the MCS operation - 10th November.
Its later than we thought, but the surgeon wants the right team, and to be around afterwards as it is such a rare operation. But it's brilliant having a date to focus on and to stop feeling like a crazy person never knowing if today is the day!
Today I treated a horse in the next village - he has muscular stiffness so Bowen is brilliant for him - although he is a cob and black, he reminded me a lot of Fizz, so that was happysad. I've lent the owner my libra trek saddle, as I think his own saddle is causing problems with his back. Its great treating this horse as I get my aromatherapy massages in return!!
Head has been rotten today - but the wind always jazzes it up.
Ben came back from the US with lots of chocolate - so I've discovered peanutbutter cups - OMG they are lovely, though even I can only eat 2 at a time!
So I feel as if I have a spare month now - a clear birthday, and can get Cirrus clipped a bit later - and even ride him a bit!!
Niki x
Its later than we thought, but the surgeon wants the right team, and to be around afterwards as it is such a rare operation. But it's brilliant having a date to focus on and to stop feeling like a crazy person never knowing if today is the day!
Today I treated a horse in the next village - he has muscular stiffness so Bowen is brilliant for him - although he is a cob and black, he reminded me a lot of Fizz, so that was happysad. I've lent the owner my libra trek saddle, as I think his own saddle is causing problems with his back. Its great treating this horse as I get my aromatherapy massages in return!!
Head has been rotten today - but the wind always jazzes it up.
Ben came back from the US with lots of chocolate - so I've discovered peanutbutter cups - OMG they are lovely, though even I can only eat 2 at a time!
So I feel as if I have a spare month now - a clear birthday, and can get Cirrus clipped a bit later - and even ride him a bit!!
Niki x
Tuesday, 29 September 2009
circling the drain....
STILL no date......
Went to the GP today, saw a crappy locum. Since I started the cyclizine and ondancetron (anti-emetics) I've had ulcers in my nose, and then about a month ago I started getting painful spots in my nose that took ages to heal. When the two last ones healed, and I started getting another one straight away I was persuaded to go to the GP to get cream and a swab to check for a staph infection - don't really want that when you are about to get brain surgery!
Locum was a pain, saying they'd do that in the hospital if they were worried, but I can't risk them sending me home! So he capitulated, after he talked me down from the ceiling. Suprised myself at how hysterical I came very quickly!
Cirrus has rubbed his legs, face and shoulder raw, not happy at all poor boy. I've clipped the places out and potioned them. I hope they recover really quickly.
Went to church on Sunday again - I asked a neighbour for a lift. It was lovely service, a harvest one. It's about the only place I feel peaceful and less in pain, in church, which is one massive shock for me! I was given the definate message several months ago that I had to start going to church, which is strange for a non-believer, but I don't tend to argue for too long with such a dictate from my guides!
Am going out on Sunday evening with some friends - a rare and fun thing to do!
Niki x
Went to the GP today, saw a crappy locum. Since I started the cyclizine and ondancetron (anti-emetics) I've had ulcers in my nose, and then about a month ago I started getting painful spots in my nose that took ages to heal. When the two last ones healed, and I started getting another one straight away I was persuaded to go to the GP to get cream and a swab to check for a staph infection - don't really want that when you are about to get brain surgery!
Locum was a pain, saying they'd do that in the hospital if they were worried, but I can't risk them sending me home! So he capitulated, after he talked me down from the ceiling. Suprised myself at how hysterical I came very quickly!
Cirrus has rubbed his legs, face and shoulder raw, not happy at all poor boy. I've clipped the places out and potioned them. I hope they recover really quickly.
Went to church on Sunday again - I asked a neighbour for a lift. It was lovely service, a harvest one. It's about the only place I feel peaceful and less in pain, in church, which is one massive shock for me! I was given the definate message several months ago that I had to start going to church, which is strange for a non-believer, but I don't tend to argue for too long with such a dictate from my guides!
Am going out on Sunday evening with some friends - a rare and fun thing to do!
Niki x
Wednesday, 23 September 2009
teetering on the brink...
STILL no date!! Its driving me slowly mad, the not knowing. Hey ho.
Otherwise things are ok - my sister went off to Uni which is great for her, but I miss her! My brother is on a business trip in the US.
My life is revolving around the date for the op - the closer any surgery gets for me, the more introspective and insular I get - I guess its just a reaction to the fear, the pain and the concept of your mortality. I even went to church this week!
Niki x
Otherwise things are ok - my sister went off to Uni which is great for her, but I miss her! My brother is on a business trip in the US.
My life is revolving around the date for the op - the closer any surgery gets for me, the more introspective and insular I get - I guess its just a reaction to the fear, the pain and the concept of your mortality. I even went to church this week!
Niki x
Thursday, 17 September 2009
Bad 48hours
Have had an awful 48 hours - usually bad do's don't last that long,but I'm struggling to throw this one off. The morphine and fent combo did bring it down to an 8, but if I'd known it was going to last that long I may have been better off looking at a hospital visit...
The news from the hospital is still that they are trying to get me in in the last week in September, or first week in October - notice we are creeping Christmas-ward. They know I'm having a rough time though and I am a priority case.
Not that the operation is necessarily going to address the pain straight away - I could end up in a worse place for a while, but I'm trying not to think about that.
So not a lot has been happening, not been riding, last time I brought the horses in they ran off with a herd of sheep!! It was a bit of a nightmare, but I discovered my priorities as I saw my mum disappear under a boucing shetland pony followed by a herd of bouncing sheep! Thankfully she was ok, though scrapped up, and I was able to belt off after the horses, whose appearance shocked the farmer, but he did stop them going further along the lane. All well in the end.
Niki x
The news from the hospital is still that they are trying to get me in in the last week in September, or first week in October - notice we are creeping Christmas-ward. They know I'm having a rough time though and I am a priority case.
Not that the operation is necessarily going to address the pain straight away - I could end up in a worse place for a while, but I'm trying not to think about that.
So not a lot has been happening, not been riding, last time I brought the horses in they ran off with a herd of sheep!! It was a bit of a nightmare, but I discovered my priorities as I saw my mum disappear under a boucing shetland pony followed by a herd of bouncing sheep! Thankfully she was ok, though scrapped up, and I was able to belt off after the horses, whose appearance shocked the farmer, but he did stop them going further along the lane. All well in the end.
Niki x
Saturday, 29 August 2009
No news is good news?
Have no further movement on the op front - hey ho.
Have had a pretty poor week, and am finding increasingly that the addition of morphine to my regime is very detrimental to my memory, concentration and composure! I get very confused very easily, especially if a few things are going on at the same time. I forget things and things I have been told (allegedly!). But it does seem to help the pain, so there we go.
Cirrus did have an abscess by the way!
Alfie is fabulous. Ellie is cool, and Murphy is great! We are taking them to another dog show tomorrow so hopefully they will be on form.
In some ways its hard to have a blog, as every day is so mind numbingly the same, tedious and painful its hard to document it. I'm struggling to be upbeat and not to get into a depression though I'm pretty darn good at not thinking about negative things! At least I have a structure to the day so I don't stay in bed. I'm really existing in a limbo until the operation. I know it may not work, or may take a long time to find the right stimulation parameters to work, but I have to be hopeful. However every other procedure has been a failure eventually and I have coped, and the drugs have always been pretty useless as well, so the last 7 years have taught me how to deal with disapointment I guess. But I still have hope, and while I have that, I will fight.
Anyway, just found a film about MSC on line - here:
http://www.medicalvideos.us/videos-941-Motor-cortex-stimulation-for-Chronic-pain
Niki x
Have had a pretty poor week, and am finding increasingly that the addition of morphine to my regime is very detrimental to my memory, concentration and composure! I get very confused very easily, especially if a few things are going on at the same time. I forget things and things I have been told (allegedly!). But it does seem to help the pain, so there we go.
Cirrus did have an abscess by the way!
Alfie is fabulous. Ellie is cool, and Murphy is great! We are taking them to another dog show tomorrow so hopefully they will be on form.
In some ways its hard to have a blog, as every day is so mind numbingly the same, tedious and painful its hard to document it. I'm struggling to be upbeat and not to get into a depression though I'm pretty darn good at not thinking about negative things! At least I have a structure to the day so I don't stay in bed. I'm really existing in a limbo until the operation. I know it may not work, or may take a long time to find the right stimulation parameters to work, but I have to be hopeful. However every other procedure has been a failure eventually and I have coped, and the drugs have always been pretty useless as well, so the last 7 years have taught me how to deal with disapointment I guess. But I still have hope, and while I have that, I will fight.
Anyway, just found a film about MSC on line - here:
http://www.medicalvideos.us/videos-941-Motor-cortex-stimulation-for-Chronic-pain
Niki x
Tuesday, 4 August 2009
Nearer a surgery date..
Well apparently I'm in the place on the list which should be done before end of August, BUT, they are running a month behind - which means I *should* be done before end of September.
So movement of a kind. Oh and the notice could be a day! Like, come in tomorrow. Yikes.
Bit spooked about it today to be honest - mainly the MRI again! The tests will all be done in the hospital the day before the op, so no trekking up and down to and back from Cardiff.
Morphine and fentanyl combo is ok, better than singley. Pain is not great, at a level where its hard to do more than the basics, plus the drugs make me somewhat apathetic. Added to that Cirrus had a mystery lameness recently so he's not been right to ride. I AM bringing them in tomorrow to trot him up on a hard surface and check, plus trim his feet. And dectomax him. And cuddle him.
Got a Seth Lakeman gig on Friday, and even better, my friend Helen (Helen from Evesham not Windsor) is coming as well! Very much looking forward to seeing her again.
Alfie is doing really well - he's huuuuuuge now - and very clever. I've mislaid the lead that connects my phone to the PC, actually, make that not sure where the lead is and can't be bothered to look as yet.... so no pictures as yet.
Ben took some fantastic pictures of Cirrus - looking very good for once, other than his sore face - but one is particularly good - here it is!
Niki x
So movement of a kind. Oh and the notice could be a day! Like, come in tomorrow. Yikes.
Bit spooked about it today to be honest - mainly the MRI again! The tests will all be done in the hospital the day before the op, so no trekking up and down to and back from Cardiff.
Morphine and fentanyl combo is ok, better than singley. Pain is not great, at a level where its hard to do more than the basics, plus the drugs make me somewhat apathetic. Added to that Cirrus had a mystery lameness recently so he's not been right to ride. I AM bringing them in tomorrow to trot him up on a hard surface and check, plus trim his feet. And dectomax him. And cuddle him.
Got a Seth Lakeman gig on Friday, and even better, my friend Helen (Helen from Evesham not Windsor) is coming as well! Very much looking forward to seeing her again.
Alfie is doing really well - he's huuuuuuge now - and very clever. I've mislaid the lead that connects my phone to the PC, actually, make that not sure where the lead is and can't be bothered to look as yet.... so no pictures as yet.
Ben took some fantastic pictures of Cirrus - looking very good for once, other than his sore face - but one is particularly good - here it is!
Niki x
Tuesday, 14 July 2009
Morphine not so hot
Well its not going to make a dent in the bad pain. Which is pants. On Sunday I had a bad day - not a really bad day, more a 7. I took several doses of 10mls of oramorph and then had a couple of fentanyl lollipops. The anti-emetics worked. The pain wasn't decreased much at all. No really bad side effects, just sleepy and stoned a bit.
Antonia (one of my oldest and bestest friends) came over with her dad and her son Morgan - so that was lovely - I don't see her as much as I would like as she lives in North Wales. She's special people to me. Anyhow I was able to cope through her visit, and showed her Doughnuts tricks and Cirrus' practical CT applications. Then I slept through most of the rest of the day.
So this shows me that on a really bad do, the fent/oramorph combo is NOT going to work. This still leaves me with the transport issue.
Otherwise things are ok. Alfie is growing apace, and is so smart. He's totally lovely. Murphy is a little more accepting of him, and Ellie really likes him now, unless he steals her bone. He is happy to share it with her, but she's not that happy with it!
Horses are fab, and I'm doing a great new cross stitch. Buying them from someone on ebay who must think I'm a total freak for buying so many!! Thank the gods that they are cheap.
Niki x
Antonia (one of my oldest and bestest friends) came over with her dad and her son Morgan - so that was lovely - I don't see her as much as I would like as she lives in North Wales. She's special people to me. Anyhow I was able to cope through her visit, and showed her Doughnuts tricks and Cirrus' practical CT applications. Then I slept through most of the rest of the day.
So this shows me that on a really bad do, the fent/oramorph combo is NOT going to work. This still leaves me with the transport issue.
Otherwise things are ok. Alfie is growing apace, and is so smart. He's totally lovely. Murphy is a little more accepting of him, and Ellie really likes him now, unless he steals her bone. He is happy to share it with her, but she's not that happy with it!
Horses are fab, and I'm doing a great new cross stitch. Buying them from someone on ebay who must think I'm a total freak for buying so many!! Thank the gods that they are cheap.
Niki x
Saturday, 11 July 2009
Morphine....
doesn't seem to be any better than fentanyl - though I have taken a smaller dose. Just thought I'd try it and see. It is making me a bit more stoned though.
Alfie went for his first walk today - and discoved sheep poo! oh joy (for him...). He fell asleep on Ellie today which was very sweet - I did take pics, will put them up soon.
Actually, I had the last dose of morphine at 8.40 and right now at 9.15 I'm not in much pain at all - maybe it does work!
Niki xxx
Alfie went for his first walk today - and discoved sheep poo! oh joy (for him...). He fell asleep on Ellie today which was very sweet - I did take pics, will put them up soon.
Actually, I had the last dose of morphine at 8.40 and right now at 9.15 I'm not in much pain at all - maybe it does work!
Niki xxx
Friday, 10 July 2009
Got the drugs....
The GP came up trumps and RX'd me the oramorph and a shed load of anti-emetics to allow me to take the oramorph or more lollipops - without them two is my max. Some confusion as to whether the oramorph is for the big do's or if its for the worse day to day pain. I thought it was the latter and the ketamine etc was for the baddies. Still I guess I'll figure it out.
Alfie is ace! He's learning at the speed of light - he's SO clever. He's beautiful as well.
Doughnut had got "bow" down pat - he's doing it all on his own on command now. I'm so proud of him! Cirrus is as wonderful as ever, and is doing fabulously with his sweet itch - the cavelesse cream/gel is miraculous and its a darn shame that it only comes with the feed supplement, so you are let with this weeny tube! Some stupid licencing issue.
Am working hard on a cross stitch at the moment - for a friend's birthday pressie. Its challenging and fun!
Niki x
Alfie is ace! He's learning at the speed of light - he's SO clever. He's beautiful as well.
Doughnut had got "bow" down pat - he's doing it all on his own on command now. I'm so proud of him! Cirrus is as wonderful as ever, and is doing fabulously with his sweet itch - the cavelesse cream/gel is miraculous and its a darn shame that it only comes with the feed supplement, so you are let with this weeny tube! Some stupid licencing issue.
Am working hard on a cross stitch at the moment - for a friend's birthday pressie. Its challenging and fun!
Niki x
Tuesday, 7 July 2009
Response from Mr Simpson
Well I e-mailed Mr Simpson asking what to do when I have my major attacks, and he responded very quickly with the suggestion or pethedine or ketamine. Now I would just have to figure out how to get to the hospital to have those jabs!!
He also suggested oramorph for the day to day worse pain - so will see if GP will dish it up on Thurs. Its a pain having to ramp up the drugs, but the fent isn'ttouching it at the moment and I really just want to be able to sit on my horse occassionally, play with the puppy and not have to waste so much energy just sitting up.
I had a rotten day yesterday, with pain and incredible exhaustion - turned out I'd missed my tramadol SR dose at 7 am!! Not good.
Alfie the puppy is doing grand - he's learnt sit, down and leave it, and getting there with roll over. His toilet training is a bit hit and miss still - we are still having to take him out all the time - but he sits by the door if he needs to poo, so it will only be a matter of time before he does that for wees as well. He's got his second jab on Thursday, after which we can hit the road with him and get him out and about.
Horses are fine. Really really want to ride though, stamp stamp.
Niki xxx
He also suggested oramorph for the day to day worse pain - so will see if GP will dish it up on Thurs. Its a pain having to ramp up the drugs, but the fent isn'ttouching it at the moment and I really just want to be able to sit on my horse occassionally, play with the puppy and not have to waste so much energy just sitting up.
I had a rotten day yesterday, with pain and incredible exhaustion - turned out I'd missed my tramadol SR dose at 7 am!! Not good.
Alfie the puppy is doing grand - he's learnt sit, down and leave it, and getting there with roll over. His toilet training is a bit hit and miss still - we are still having to take him out all the time - but he sits by the door if he needs to poo, so it will only be a matter of time before he does that for wees as well. He's got his second jab on Thursday, after which we can hit the road with him and get him out and about.
Horses are fine. Really really want to ride though, stamp stamp.
Niki xxx
Sunday, 21 June 2009
New Puppy!!!
We found ourselves a new puppy today!! He's gorgeous, lovely, wonderful. It took us a while to make the choice, we were hard pressed to not bring two or three with us! But the last boy was chosen in the end.
He's beautiful. Names are in debate, but Luka/Luqa/Lucca is favourite at the moment.
SO exciting!!!
Niki xxx
He's beautiful. Names are in debate, but Luka/Luqa/Lucca is favourite at the moment.
SO exciting!!!
Niki xxx
Wednesday, 17 June 2009
Sigh
Sorry for the silence again!
Things have been a little frustrating. Suddenly after god knows how many years I seem to have a problem with codeine! Its always been a good drug for me, but I started having a dull aching pain, with one stabbing pain, on my right temple - needless to say this freaked me out as I worried I was becoming bilateral. So having read about re-bound headaches from codeine, I cut out the co-codamol.
So no withdrawal which was nice - but very much increased pain - so at least it was doing something! I went to a new GP (for me, my other one ran away :( ) and as per usual he got bogged down with the whole meds thing and got glassy eyed and freaked. As I was less than my best I ended up coming away with a DX for tramadol 50mg so I can take these rather than the 200mg SR, hoping that the higher profile peaks of this will help. I suspect I'll be back next week. I wish they could just DX me hydrocodone or similar - even methadone, but I think I need a pain expert for that. I'd come off it before the op, but I have to survive the summer first.
Anyway on Monday night I had another really bad do - the one where pure ice on my face hardly interferes with the pain, the 9 1/2 out of 10 pain. It is really intolerable, makes me throw up, and the next day gave me the runs as well. All I can do is survive, even when I don't want to, when I would welcome a knife in my skull. My mum did a bit of Reiki that did help, and I tried to will it away. If you relax it does help a little, but its bloody hard to do that when it hurts so much.
When a similar pain happened to me in the Heath, they kept me in HDU and were frantic trying to get it to go. It responded to something in the end but I can't really remember what it was. I do wonder if calling an ambulance may be an option if it happened again, though I would never cope with a journey. But I always feel that I'm dying for some oxygen when this happens!
All I can be grateful of, is that it NEVER lasts more than 6-8 hours.
Otherwise boys are good, life trundles on, and I had some wonderful friends over for a weekend and it was great (other than another bad do on the Sat pm!). I value my friends and love having them visit, and I'm so grateful for them. They are wonderfully understanding as well.
Niki x
Things have been a little frustrating. Suddenly after god knows how many years I seem to have a problem with codeine! Its always been a good drug for me, but I started having a dull aching pain, with one stabbing pain, on my right temple - needless to say this freaked me out as I worried I was becoming bilateral. So having read about re-bound headaches from codeine, I cut out the co-codamol.
So no withdrawal which was nice - but very much increased pain - so at least it was doing something! I went to a new GP (for me, my other one ran away :( ) and as per usual he got bogged down with the whole meds thing and got glassy eyed and freaked. As I was less than my best I ended up coming away with a DX for tramadol 50mg so I can take these rather than the 200mg SR, hoping that the higher profile peaks of this will help. I suspect I'll be back next week. I wish they could just DX me hydrocodone or similar - even methadone, but I think I need a pain expert for that. I'd come off it before the op, but I have to survive the summer first.
Anyway on Monday night I had another really bad do - the one where pure ice on my face hardly interferes with the pain, the 9 1/2 out of 10 pain. It is really intolerable, makes me throw up, and the next day gave me the runs as well. All I can do is survive, even when I don't want to, when I would welcome a knife in my skull. My mum did a bit of Reiki that did help, and I tried to will it away. If you relax it does help a little, but its bloody hard to do that when it hurts so much.
When a similar pain happened to me in the Heath, they kept me in HDU and were frantic trying to get it to go. It responded to something in the end but I can't really remember what it was. I do wonder if calling an ambulance may be an option if it happened again, though I would never cope with a journey. But I always feel that I'm dying for some oxygen when this happens!
All I can be grateful of, is that it NEVER lasts more than 6-8 hours.
Otherwise boys are good, life trundles on, and I had some wonderful friends over for a weekend and it was great (other than another bad do on the Sat pm!). I value my friends and love having them visit, and I'm so grateful for them. They are wonderfully understanding as well.
Niki x
Sunday, 17 May 2009
Great news!
I'm getting my op after all!! Ok so its not DBS, its Motor Cortex Stimulation instead, but it going to be sooner than waiting and fighting for years to get DBS!
I went to see my Welsh Consultant, Brian Simpson. He's been treating me on and off for years and is always very supportive of my treatment choices. I was hoping he would offer me MCS, but I'd not said that to anyone so it was a bit of a shock for my parents who came along. The stats aren't as good for MCS, but they are not bad, and its a less invasive operation as the electrodes are placed on the dura of the brain not inside it. Its a bigger op as they have to take out a flap of skull rather than use bore holes like DBS, but the chances of being woken up during surgery are lower.
So I'm delighted, scared and happy all at the same time. This op will address the constant pain I have around my eye, temple and bridge of my nose, and is not likely to affect the stabbing pain I have. But I hope that reducing the constant pain will make day to day life more bearable and I will be able to come off some of the drugs and increase my activities, even get a part time job!!
So great news - the waiting list is quite long for these kind of specialist treatments - so it would be minimum 14 weeks and more likely to be over 22 weeks. Whats the betting it'll be either on the weekend of the EE conference, or on my Birthday!
Niki xxx
I went to see my Welsh Consultant, Brian Simpson. He's been treating me on and off for years and is always very supportive of my treatment choices. I was hoping he would offer me MCS, but I'd not said that to anyone so it was a bit of a shock for my parents who came along. The stats aren't as good for MCS, but they are not bad, and its a less invasive operation as the electrodes are placed on the dura of the brain not inside it. Its a bigger op as they have to take out a flap of skull rather than use bore holes like DBS, but the chances of being woken up during surgery are lower.
So I'm delighted, scared and happy all at the same time. This op will address the constant pain I have around my eye, temple and bridge of my nose, and is not likely to affect the stabbing pain I have. But I hope that reducing the constant pain will make day to day life more bearable and I will be able to come off some of the drugs and increase my activities, even get a part time job!!
So great news - the waiting list is quite long for these kind of specialist treatments - so it would be minimum 14 weeks and more likely to be over 22 weeks. Whats the betting it'll be either on the weekend of the EE conference, or on my Birthday!
Niki xxx
Saturday, 16 May 2009
So Sorry!
I've been very lax at posting here, and I'm sorry.
It has been a strange period of time, with Cirrus finally getting over his pneumonia and sorting all my gran's things out. My face has been pretty bad which never helps.
I did manage a short ride on Cirrus which felt amazing, but have not since, I'm really unmotivated at the moment, I guess its all got a bit too much in a way and I'm naval gazing and dealing with each moment as it comes.
On the plus side I've done a whole load of cross stitch!! Hey ho.
Anyway I have momentous news, which I'll deal with in another post in a bit....
Niki xxx
It has been a strange period of time, with Cirrus finally getting over his pneumonia and sorting all my gran's things out. My face has been pretty bad which never helps.
I did manage a short ride on Cirrus which felt amazing, but have not since, I'm really unmotivated at the moment, I guess its all got a bit too much in a way and I'm naval gazing and dealing with each moment as it comes.
On the plus side I've done a whole load of cross stitch!! Hey ho.
Anyway I have momentous news, which I'll deal with in another post in a bit....
Niki xxx
Wednesday, 1 April 2009
By the way...
The funeral and celebration went fine - it was sad, but it was lovely at the same time.
Neither of my cousins came which was very sad - one has a good excuse, the other not one. Hey ho - their loss not knowing their grandmother, she was a wonderful person and a fantastic gran. I, and my siblings are far richer from knowing her.
The vicar was fantastic - not too goddy, and with a real human touch - he read the last bit of Watership Down at the committal, which was very touching. I'm no Christian, though spiritual, and I would be happy to go to his church services!
My face was not brilliant - both the crem and the church were very cold, although I kept my hat on. I was hurting quite bad by the time of the waky bit later - ran home to get more drugs and the dog (Ellie loved Gran, so I felt she should come). In all I had 3 doses of tramadol ON TOP of my usual tramadol, plus 3 lollipops. Yikes. By the evening I was really rough, throwing up and trembling with the pain, very boring. Once I had emptied my stomach and taken a sleeping pill I did get to sleep which did settle my face down. So today I'm exhausted as a result.
Now we have the daunting task of clearing Gran's house - but this is also a fun adventure, as she hid all kinds of things hidden in all kinds of places!!
Niki x
Neither of my cousins came which was very sad - one has a good excuse, the other not one. Hey ho - their loss not knowing their grandmother, she was a wonderful person and a fantastic gran. I, and my siblings are far richer from knowing her.
The vicar was fantastic - not too goddy, and with a real human touch - he read the last bit of Watership Down at the committal, which was very touching. I'm no Christian, though spiritual, and I would be happy to go to his church services!
My face was not brilliant - both the crem and the church were very cold, although I kept my hat on. I was hurting quite bad by the time of the waky bit later - ran home to get more drugs and the dog (Ellie loved Gran, so I felt she should come). In all I had 3 doses of tramadol ON TOP of my usual tramadol, plus 3 lollipops. Yikes. By the evening I was really rough, throwing up and trembling with the pain, very boring. Once I had emptied my stomach and taken a sleeping pill I did get to sleep which did settle my face down. So today I'm exhausted as a result.
Now we have the daunting task of clearing Gran's house - but this is also a fun adventure, as she hid all kinds of things hidden in all kinds of places!!
Niki x
Poorly Cirrus and Fab Doughnut!
Today a day of two halves - Cirrus had the vet to see what was going on in his lungs - answer, definately pnuemonia. Not good. He took a tracheal wash, despite Cirrus constantly coughing, which can make it hard - they don't usually cough constanly while the endoscope is down, so it shows how senstitve his trachea is. There was some blood as well. He's got quite a bit of mucus down there as well despite not ever having a runny nose. Though I read that horses with a productive cough often look as if they are chewing and swallowing after a cough (ick!) which he has been doing.
So when the vet has the results of the cultures and analysis we'll be able to give him the correct antibiotics - kinda hope they are injectable as he's much easier to do that to than try and get him to eat them!! Poor baby seems to be feeling well enough in himself though. I took the opportunity of him still being somewhat sedated to do his feet!!
And the other half of the day was much better - I'd found a cheap shetland bridle on ebay, and found that they also sold mini magic bits, so I got both. I took them out to Doughnut and he was so laid back I ended up bitting him for the first time! He was fab - put the bridle on in bits and he accepted it very well, then I led him (on the headcollar) up to the house to show everyone how grown up he was - and back. He was mouthing it as you would expect but not fighting it or disturbed by it - happily thinking he should be allowed to eat the grass! This is him:
So proud of him! I'll leave it a day or two, then do it again in an equally casual way - seems to be the way to do things with Do, just assume he's going to be fine (while keeping a weather eye out of course). His owner was worried that he would be afraid of big blokes, but he's been totally happy with my dad and Alex, my BIL - though both have nice friendly aura's even though they are big men. I can imagine he'd be different with someone less approachable.
So good day in its ways - at least we know more about what is wrong with Cirrus (and I'm glad I did call the vet back in, not that anybody really could ignore such a persistant cough, and Doughnut made it special with his achievement.
So when the vet has the results of the cultures and analysis we'll be able to give him the correct antibiotics - kinda hope they are injectable as he's much easier to do that to than try and get him to eat them!! Poor baby seems to be feeling well enough in himself though. I took the opportunity of him still being somewhat sedated to do his feet!!
And the other half of the day was much better - I'd found a cheap shetland bridle on ebay, and found that they also sold mini magic bits, so I got both. I took them out to Doughnut and he was so laid back I ended up bitting him for the first time! He was fab - put the bridle on in bits and he accepted it very well, then I led him (on the headcollar) up to the house to show everyone how grown up he was - and back. He was mouthing it as you would expect but not fighting it or disturbed by it - happily thinking he should be allowed to eat the grass! This is him:
So proud of him! I'll leave it a day or two, then do it again in an equally casual way - seems to be the way to do things with Do, just assume he's going to be fine (while keeping a weather eye out of course). His owner was worried that he would be afraid of big blokes, but he's been totally happy with my dad and Alex, my BIL - though both have nice friendly aura's even though they are big men. I can imagine he'd be different with someone less approachable.
So good day in its ways - at least we know more about what is wrong with Cirrus (and I'm glad I did call the vet back in, not that anybody really could ignore such a persistant cough, and Doughnut made it special with his achievement.
Monday, 30 March 2009
Tick tock
Waiting for the funeral and celebration of my gran's life to be over tomorrow. I bought some lovely tops today to wear - one is bright purple with fawn and beige stripes, and a green and pink floral top with pink sequins on it - nicer than it sounds honest! Gran liked bright colours and would hate everyone to be in unrelieved black.
Poor Cirrus is coughing still - he did improve almost entirely then got worse again - as a result David the vet is coming on Wednesday to do a tracheal wash on him to see if we can figure out once and for all what the heck is going on with him!
Physio is very pleased with my leg this morning - so much stronger - I can do nearly 30 one legged tiptoe manoeuvres in a row now! It still looks pretty ghastly - weak and still discoloured - I'll get some recent pics and blog the whole story soon, for posterity like!!
Anyhow that's all for today, just checking in.
Hugs
Niki xxx
Poor Cirrus is coughing still - he did improve almost entirely then got worse again - as a result David the vet is coming on Wednesday to do a tracheal wash on him to see if we can figure out once and for all what the heck is going on with him!
Physio is very pleased with my leg this morning - so much stronger - I can do nearly 30 one legged tiptoe manoeuvres in a row now! It still looks pretty ghastly - weak and still discoloured - I'll get some recent pics and blog the whole story soon, for posterity like!!
Anyhow that's all for today, just checking in.
Hugs
Niki xxx
Thursday, 26 March 2009
Night and God Bless
Peggy wasn’t a glaring inspiration,
nor a loud explosion of greatness,
She was an everyday hero,
Comfortable and safe.
A hot bath after a cold day in the rain,
Freshly baked bread.
She was a good sport, a special smile,
A guaranteed cuddle.
She was an open fire when the frost draws in,
A hot pudding when the craving sets in.
She was an exemplary Grandmother,
Loving and comfort,
A safe haven from the perils of life.
Gran was coming home for Christmas.
She was a wonderful Mom, much treasured,
much loved.
We all carry her loving everyday, in every way.
Much missed, always loved,
Our memories will never rest.
Always in our hearts.
Night and God Bless.
Funeral on Tuesday - kinda life on hold til that is over. My head has been horrendous, stress does that, and its gutting as I haven't been able to be as supportive and helpful as I would like. This is when I hate the TN most, when it impacts on other peoples lives in a negative way. It hurts.
I miss Gran, but in a way I can pretend she's still around, just not here, I guess Tuesday will put paid to that. I have talked to her as well, so I know full well she's not here physically. She sounded happy and relaxed, though she was definite that the hearses wheels had to be clean - so picture me running round with rags polishing on Tuesday! I hope the weather is good - she was so obsessed with the weather!!
Niki x
nor a loud explosion of greatness,
She was an everyday hero,
Comfortable and safe.
A hot bath after a cold day in the rain,
Freshly baked bread.
She was a good sport, a special smile,
A guaranteed cuddle.
She was an open fire when the frost draws in,
A hot pudding when the craving sets in.
She was an exemplary Grandmother,
Loving and comfort,
A safe haven from the perils of life.
Gran was coming home for Christmas.
She was a wonderful Mom, much treasured,
much loved.
We all carry her loving everyday, in every way.
Much missed, always loved,
Our memories will never rest.
Always in our hearts.
Night and God Bless.
Funeral on Tuesday - kinda life on hold til that is over. My head has been horrendous, stress does that, and its gutting as I haven't been able to be as supportive and helpful as I would like. This is when I hate the TN most, when it impacts on other peoples lives in a negative way. It hurts.
I miss Gran, but in a way I can pretend she's still around, just not here, I guess Tuesday will put paid to that. I have talked to her as well, so I know full well she's not here physically. She sounded happy and relaxed, though she was definite that the hearses wheels had to be clean - so picture me running round with rags polishing on Tuesday! I hope the weather is good - she was so obsessed with the weather!!
Niki x
Monday, 23 March 2009
Sunday, 22 March 2009
More on my Gran
She's not doing so well today - the Dr's say that it is all stuff that can happen after a gut op, but its depressing and distressing to see. She is vomiting a lot, and as the gut isn't working its basically poo that is coming up. Which is grim for her poor girl. She is so thin and frail and obviously feeling terrible.
I did manage to give her a good dose of Reiki today, which made me feel better, and hopefully her as well.
My face has not been great today - had a busy day yesterday with the horse dentist, so it was hard work for me as there is a lot of interaction, holding noses in place!! Both were very good though. I slept this morning, had some really odd dreams again, I think I need to listen to the nice dreams CD again!!
The travelling to the hospital and then the visit is always tough on my face, but there you go - but I'm back home and pretty sore now, had two lollipops today. I have physio class for my leg tomorrow at 9.00 a.m.
Must go, its Lost now!
Niki xxx
I did manage to give her a good dose of Reiki today, which made me feel better, and hopefully her as well.
My face has not been great today - had a busy day yesterday with the horse dentist, so it was hard work for me as there is a lot of interaction, holding noses in place!! Both were very good though. I slept this morning, had some really odd dreams again, I think I need to listen to the nice dreams CD again!!
The travelling to the hospital and then the visit is always tough on my face, but there you go - but I'm back home and pretty sore now, had two lollipops today. I have physio class for my leg tomorrow at 9.00 a.m.
Must go, its Lost now!
Niki xxx
Saturday, 21 March 2009
DBS stuff
Here are some extracts of the correspondence.
Extracts from a letter from HCW to Oxford:
“The reasons for this (decision to refuse funding) are listed below:
the panel took into account the clinical and treatment history of the patient, the current clinical evidence for the use of DBS to treat this indication, and HCW’s new technologies policy (*NB/ need to get a copy of this).
From the information you submitted (Oxford), we understand that Oxford is one of only 3 centres in Europe undertaking DBS for pain, and has treated about 64 patients over the last 10 years, 18 of which were for face/head pain. …HCW’s view is that the application of DBS to treat neuropathic facial pain is experimental and as such constitutes research. GMC (what is this?) guidance states that “before starting any research you must ensure that ethical approval has been obtained from a properly constituted and relevant research ethics committee”.
Unfortunately, despite our best endeavours, we have not received confirmation from you that this procedure for this patient is adequately covered by research ethics approval. In the absence of this information, the Panel were unable to approve funding.
If you believe you have any exceptional circumstances or additional information to support this funding request, you may request a copy of the Review Policy which explains the review procedure should you wish to request one.”
Extracts from an e-mail from Edwina Hart, Minister for Health and Social Services:
explains the process of HCW looking at my funding via an Individual Patient Commissioning Panel. She states that she has asked her officials at HCW write directly to me to explain the reasons for turning down the request for funding and outline the process for requesting a review of the original decision. (waiting for letter)
Extracts of a letter from Prof Aziz to HCW:
“you state that DBS for neuropathic pain is experimental. This is not the stance the Body of Neurosurgeons internationally would take. DBS for pain is one of the oldest indications but the numbers remain small as very few patients are referred for this to specialist centres. … the ethics I have are for understanding the physiology and research into the cognitive aspects of DBS for neuropathic pain – the procedure itself is fairly standard.
He concludes with a pithy statement on the track record of Wales’ funding for patients such as myself.
Extracts from e-mail from Professor Aziz’s DBS Pain Specialist nurse Liz Moir (in response to an e-mail from my father)
“With regard to HCW there is nothing further we can do this end to overturn their decision not to fund. We have previously been through the appeal process and failed. The issue of moving to England is obviously a drastic measure, and I have to advise you that even if Nicola moved and registered with a GP in any area, we would still have to apply for funding and there is a chance this would be turned down. DBS for pain is almost always funded in England on an ‘exceptional case’ basis and this involves a panel from the patients local Primary Care Trust meeting and discussing each individuals case. If it is felt that the patient being considered for treatment is not exceptional over and above any other person with the same condition then treatment is not funded. Proving exceptionality is difficult, particularly for those of us who care for patients in chronic pain as we deem all of our patients to be exceptional cases given the chronic nature of their condition.”
She notes that Oxfordshire PCT is not good at funding DBS, and no PCT “routinely” funds for it. They are occasionally successful in their appeals.
Plans:
See Neurologist – to a) get advice on treatments available, and whether they agree with the idea of DBS and b) to be under a physician’s care for med adjustment and care as at the moment I have slipped between the cracks somewhat and have no way of adjusting my meds, as the GP has no authority. This has to be a Welsh consultant as HCW will not take advice readily from another English Doctor.
See Mr Simpson – my Welsh Neurosurgeon – for advice on other surgical treatments available, other stimulators etc. And his advice on who to see above.
See AM Kirsty Williams again
See PM Roger Williams
Talk to Liz Moir – get reassurance over potential effectiveness of DBS, any other ideas, get stats about DBS for pain, and any contacts if possible, case studies.
Any other ideas gratefully received as ever!
Its all rather depressing, and a lot rests on whatever a neurologist says, and of course I can't predict that - though all I know and have tried, certainly strongly indicates that there is nothing else to be done, that wouldn't be very likely to make me worse off (for instance any other ablative procedure) but while I know a lot, I'm not a Dr!! ;) It is all very boring though, and I am very tired at the moment, what I would give for a rest. Hey ho....at least the sun shines!
Niki xxx
Extracts from a letter from HCW to Oxford:
“The reasons for this (decision to refuse funding) are listed below:
the panel took into account the clinical and treatment history of the patient, the current clinical evidence for the use of DBS to treat this indication, and HCW’s new technologies policy (*NB/ need to get a copy of this).
From the information you submitted (Oxford), we understand that Oxford is one of only 3 centres in Europe undertaking DBS for pain, and has treated about 64 patients over the last 10 years, 18 of which were for face/head pain. …HCW’s view is that the application of DBS to treat neuropathic facial pain is experimental and as such constitutes research. GMC (what is this?) guidance states that “before starting any research you must ensure that ethical approval has been obtained from a properly constituted and relevant research ethics committee”.
Unfortunately, despite our best endeavours, we have not received confirmation from you that this procedure for this patient is adequately covered by research ethics approval. In the absence of this information, the Panel were unable to approve funding.
If you believe you have any exceptional circumstances or additional information to support this funding request, you may request a copy of the Review Policy which explains the review procedure should you wish to request one.”
Extracts from an e-mail from Edwina Hart, Minister for Health and Social Services:
explains the process of HCW looking at my funding via an Individual Patient Commissioning Panel. She states that she has asked her officials at HCW write directly to me to explain the reasons for turning down the request for funding and outline the process for requesting a review of the original decision. (waiting for letter)
Extracts of a letter from Prof Aziz to HCW:
“you state that DBS for neuropathic pain is experimental. This is not the stance the Body of Neurosurgeons internationally would take. DBS for pain is one of the oldest indications but the numbers remain small as very few patients are referred for this to specialist centres. … the ethics I have are for understanding the physiology and research into the cognitive aspects of DBS for neuropathic pain – the procedure itself is fairly standard.
He concludes with a pithy statement on the track record of Wales’ funding for patients such as myself.
Extracts from e-mail from Professor Aziz’s DBS Pain Specialist nurse Liz Moir (in response to an e-mail from my father)
“With regard to HCW there is nothing further we can do this end to overturn their decision not to fund. We have previously been through the appeal process and failed. The issue of moving to England is obviously a drastic measure, and I have to advise you that even if Nicola moved and registered with a GP in any area, we would still have to apply for funding and there is a chance this would be turned down. DBS for pain is almost always funded in England on an ‘exceptional case’ basis and this involves a panel from the patients local Primary Care Trust meeting and discussing each individuals case. If it is felt that the patient being considered for treatment is not exceptional over and above any other person with the same condition then treatment is not funded. Proving exceptionality is difficult, particularly for those of us who care for patients in chronic pain as we deem all of our patients to be exceptional cases given the chronic nature of their condition.”
She notes that Oxfordshire PCT is not good at funding DBS, and no PCT “routinely” funds for it. They are occasionally successful in their appeals.
Plans:
See Neurologist – to a) get advice on treatments available, and whether they agree with the idea of DBS and b) to be under a physician’s care for med adjustment and care as at the moment I have slipped between the cracks somewhat and have no way of adjusting my meds, as the GP has no authority. This has to be a Welsh consultant as HCW will not take advice readily from another English Doctor.
See Mr Simpson – my Welsh Neurosurgeon – for advice on other surgical treatments available, other stimulators etc. And his advice on who to see above.
See AM Kirsty Williams again
See PM Roger Williams
Talk to Liz Moir – get reassurance over potential effectiveness of DBS, any other ideas, get stats about DBS for pain, and any contacts if possible, case studies.
Any other ideas gratefully received as ever!
Its all rather depressing, and a lot rests on whatever a neurologist says, and of course I can't predict that - though all I know and have tried, certainly strongly indicates that there is nothing else to be done, that wouldn't be very likely to make me worse off (for instance any other ablative procedure) but while I know a lot, I'm not a Dr!! ;) It is all very boring though, and I am very tired at the moment, what I would give for a rest. Hey ho....at least the sun shines!
Niki xxx
Friday, 20 March 2009
Clickering
Today we had another lesson - Cirrus was working on standing with me moving to different positions around him and then with me moving away from him - he found me moving at 90 degrees ok, and I could stand by his tail with him maintaining his position. He found me moving off at 45 degrees a bit harder, but got the idea very quickly. We did this on both sides. This is an important part of our training so we concentrated on this - I got a few things wrong on occassion, as did he, but we both did it right more often. I'm getting better at making quick decisions on how to react if he moves or does something not what I want, and he is getting better at figuring out what I really want him to do. I'm very very pleased with him.
He seemed to feel much more like himself today, and coughed only twice despite being in, so fingers crossed its over now. He'll be in tomorrow as well as we have the dentist. My good friend Liz was here as usual and took a few pictures - they are a bit in the shade as I was sticking to the shade so the sun didn't trigger my TN.
Very attentive - me working with him - I've told him to stand here - very early on in the routine.
Doughnut had a good session as well - he's been a bit over attentive in the field so we are going to work on not doing stuff with him till WE want, not when he offers the behaviour! Today we started teaching him about moving into the lead rope pressure - tiny bit of pressure on the lead rope, and then a treat when he moved his head towards it - this was relatively easy for him. Then we did some backing up - here a combination of the word "back" followed by a small pull backwards on the rope with the hand into his chest and the treat in the hand, all leading to him taking a backwards step to get the treat - I have to be careful to stay in a neutral position until after I've said "back". Once he is starting to back up on the cue word I can start thinking about the quality and quantity of steps.
Then we did an emergency stop with him - he follows the target very nicely now, and we got him walking forward and then suddenly stop and step back slightly - thus the target disappears, and he then stops and turns to find it - reward. This means if he ran off in front due to a scare or something, he would then realise the target/person has disappeared and will know that they are likely to be behind him - and turn to look!
It was very funny this morning when I brought them into the yard - the target I use is a yellow reflective boot for legs - when we walked into the yard there was a round head of a stuffed toy giraffe (dog toy) and he stopped and touched it!! Later he did the same during the session - so is def the [i]colour [/i]he is seeing, not the shape etc.
Here are some pics of Jenni working with Doughnut:
Thanks Liz for the pics!
I have some news about the DBS, I'm going to copy the letters received here, but probably tomorrow as it is late now, and I'm pretty disappointed about it all. Not looking good. My Gran is still doing ok, hopefully we get a day off visiting her tomorrow (its a 45 min journey to the hospital) as my Uncle is back from ski-ing.
Niki xxx
He seemed to feel much more like himself today, and coughed only twice despite being in, so fingers crossed its over now. He'll be in tomorrow as well as we have the dentist. My good friend Liz was here as usual and took a few pictures - they are a bit in the shade as I was sticking to the shade so the sun didn't trigger my TN.
Very attentive - me working with him - I've told him to stand here - very early on in the routine.
Doughnut had a good session as well - he's been a bit over attentive in the field so we are going to work on not doing stuff with him till WE want, not when he offers the behaviour! Today we started teaching him about moving into the lead rope pressure - tiny bit of pressure on the lead rope, and then a treat when he moved his head towards it - this was relatively easy for him. Then we did some backing up - here a combination of the word "back" followed by a small pull backwards on the rope with the hand into his chest and the treat in the hand, all leading to him taking a backwards step to get the treat - I have to be careful to stay in a neutral position until after I've said "back". Once he is starting to back up on the cue word I can start thinking about the quality and quantity of steps.
Then we did an emergency stop with him - he follows the target very nicely now, and we got him walking forward and then suddenly stop and step back slightly - thus the target disappears, and he then stops and turns to find it - reward. This means if he ran off in front due to a scare or something, he would then realise the target/person has disappeared and will know that they are likely to be behind him - and turn to look!
It was very funny this morning when I brought them into the yard - the target I use is a yellow reflective boot for legs - when we walked into the yard there was a round head of a stuffed toy giraffe (dog toy) and he stopped and touched it!! Later he did the same during the session - so is def the [i]colour [/i]he is seeing, not the shape etc.
Here are some pics of Jenni working with Doughnut:
Thanks Liz for the pics!
I have some news about the DBS, I'm going to copy the letters received here, but probably tomorrow as it is late now, and I'm pretty disappointed about it all. Not looking good. My Gran is still doing ok, hopefully we get a day off visiting her tomorrow (its a 45 min journey to the hospital) as my Uncle is back from ski-ing.
Niki xxx
Wednesday, 18 March 2009
Good news of my gran
Went to see my Gran this afternoon - she looks so well, despite the surgery - I guess the three units of blood worked the oracle!
Her tumour was about the size of a football!!! Madness...
She was moved from ITU back to her room in the private ward while we were there. She is rather doped up, and being a bit confused at times - but that is only to be expected. She still has the epidural in (which doesn't make her legs numb!) She has an ileostomy rather than a colostomy, but she's relieved that there will be no more rushing to the toilet!
I won't go to see her tomorrow, I was feeling rather ill by the end of today, combo of the stress and the lights in the hospital, but I'm so relieved to have seen her and how well she is doing.
My Dad got a letter from the Welsh Health secretary today, saying she would write to me to explain why they had refused my funding - its pretty uninformative, again re-iterating that there was insufficient information from Oxford for them to make a decision. I'm thinking that getting a consultation with a Neurologist wouldn't be a bad thing to do now, but has to be a Welsh one as it is pointless seeing someone outside of the country as HCW won't take their recommendations seriously if they approve the DBS treatment, or fund any treatment that they suggest given they are outside the country! Heyho. I think the thing to do is write to Brian Simpson again and ask who he recommends.
Niki x
Her tumour was about the size of a football!!! Madness...
She was moved from ITU back to her room in the private ward while we were there. She is rather doped up, and being a bit confused at times - but that is only to be expected. She still has the epidural in (which doesn't make her legs numb!) She has an ileostomy rather than a colostomy, but she's relieved that there will be no more rushing to the toilet!
I won't go to see her tomorrow, I was feeling rather ill by the end of today, combo of the stress and the lights in the hospital, but I'm so relieved to have seen her and how well she is doing.
My Dad got a letter from the Welsh Health secretary today, saying she would write to me to explain why they had refused my funding - its pretty uninformative, again re-iterating that there was insufficient information from Oxford for them to make a decision. I'm thinking that getting a consultation with a Neurologist wouldn't be a bad thing to do now, but has to be a Welsh one as it is pointless seeing someone outside of the country as HCW won't take their recommendations seriously if they approve the DBS treatment, or fund any treatment that they suggest given they are outside the country! Heyho. I think the thing to do is write to Brian Simpson again and ask who he recommends.
Niki x
Tuesday, 17 March 2009
Good news
My gran pulled through the surgery - now we have to wait and see how she does. She is in ITU, and apparently happy - drugged up to her eyeballs and in no pain as she has an epidural!
So big relief. First hurdle over.
Niki xxx
So big relief. First hurdle over.
Niki xxx
Kauto the Star
Well what a Gold Cup!! Kauto was awesome! It was a great day and I was delighted with the result - and what a race My Will ran for 5th - no wonder he is now favourite for the Grand National!!
My friend Val came over to watch Thursday and Friday's racing with me which was lovely.
Cirrus was still coughing and refusing to eat his antibiotics and so the vet suggested mixing it with fruit yogurt and squirting it down his throat in a syringe - which I have duly done and the cough did get better-er - so I then got a few more doses to make up for the ones not eaten. He seems to like the Vanilla and Rhubarb yogurt!! It does get all over me though - trouble is I can't fit it all in one syringe-full so have to have a hiatus while I re-fill it, which is when he takes advantage and runs off! He will also refuse to be caught if he sees the syringe and pot so you also have to be sneaky about that. I'm taking someone with me....
As we speak my Gran is in surgery - according to the text messages sent by my Mum and sister who are there with her, the surgeons were reluctant to do the surgery as they felt the risk of her not coming through were too high - but what is the alternative - a guaranteed horrid death?? I was amazed at how happy and perky my Gran was this morning, knowing that the op had arrived and the cancer was going to be taken out - and that says it all to me. I'm thinking of her very hard and waiting on the phone...
It is incredibly frustrating to me that I can't be there waiting with my mum - I'm good at that kind of thing (not to say Caitlin isn't, shes wonderful and very good as well) but my TN makes me more of a liability now for long waits in places with strip lighting. It makes me feel even more useless and disenfranchised.
But at least I could talk my Gran through the whole operation procedure!!
Niki xxx
My friend Val came over to watch Thursday and Friday's racing with me which was lovely.
Cirrus was still coughing and refusing to eat his antibiotics and so the vet suggested mixing it with fruit yogurt and squirting it down his throat in a syringe - which I have duly done and the cough did get better-er - so I then got a few more doses to make up for the ones not eaten. He seems to like the Vanilla and Rhubarb yogurt!! It does get all over me though - trouble is I can't fit it all in one syringe-full so have to have a hiatus while I re-fill it, which is when he takes advantage and runs off! He will also refuse to be caught if he sees the syringe and pot so you also have to be sneaky about that. I'm taking someone with me....
As we speak my Gran is in surgery - according to the text messages sent by my Mum and sister who are there with her, the surgeons were reluctant to do the surgery as they felt the risk of her not coming through were too high - but what is the alternative - a guaranteed horrid death?? I was amazed at how happy and perky my Gran was this morning, knowing that the op had arrived and the cancer was going to be taken out - and that says it all to me. I'm thinking of her very hard and waiting on the phone...
It is incredibly frustrating to me that I can't be there waiting with my mum - I'm good at that kind of thing (not to say Caitlin isn't, shes wonderful and very good as well) but my TN makes me more of a liability now for long waits in places with strip lighting. It makes me feel even more useless and disenfranchised.
But at least I could talk my Gran through the whole operation procedure!!
Niki xxx
Thursday, 12 March 2009
CHELTENHAM!!!
I wait all year with bated breath for the Cheltenham Festival - so am totally immersed in it at the moment - its been a great year so far, and am eagerly awaiting the Gold Cup tomorrow.
Jump racing is so visceral - you can feel every emotion, the whole gamut, from anticipation to delight, to despair to devestation, in the space of 10 minutes - and you are allowed to feel them, no pretending, no covering up, no being brave, no slippery slope.
It's bad for my TN, the reading the paper as a PDF, the excitement, the talking, the watching the TV with squinted eyes because you've taken so many drugs to try and damp the pain down so you can concentrate 100%. My concentration is shot at the moment and any extraneous noise totally distracts me and ruins the whole thing - so my poor gran has been persuaded to stay awake and then to go to bed after lunch rather than lie on her chair and snore!!! Poor lady, but god she is loud!
I was so excited and scared when Master Minded ran in the Queen Mother - you want the legend to come good - and he did, even though he was obviously not at his extreme best. Ruby rode him beautifully and it was a great race. Its a shame Voy Por didn't take his chance as well as I felt 2 1/2 in the Ryanair today was a bit far for him - but I don't think he'd have beaten the Master! I loved Simon Holts comment last year during commentary "He's making Voy Por Ustedes look ordinary, and he's NOT ordinary!"
Didn't have a lot of luck with the betting today, but more than covered my bets yesterday - I don't bet big, and never more than I can afford to loose, and only at the Festival and Aintree - but it adds a bit of fun to it all, though sentiment will trump any bets I have made in a finish!!
I have a mouth ulcer - right on an occasional trigger point - so very annoying! Its stupid how something so inconsequential can have such an impact!
Cirrus is still coughing and I'm struggling to get him to eat all his antibiotics in the evening - breakfast he yumm's up....sigh. He seems to have gone off the speedibeet as well which is typical of him. Hey ho.
Hugs
Niki xxxx
Jump racing is so visceral - you can feel every emotion, the whole gamut, from anticipation to delight, to despair to devestation, in the space of 10 minutes - and you are allowed to feel them, no pretending, no covering up, no being brave, no slippery slope.
It's bad for my TN, the reading the paper as a PDF, the excitement, the talking, the watching the TV with squinted eyes because you've taken so many drugs to try and damp the pain down so you can concentrate 100%. My concentration is shot at the moment and any extraneous noise totally distracts me and ruins the whole thing - so my poor gran has been persuaded to stay awake and then to go to bed after lunch rather than lie on her chair and snore!!! Poor lady, but god she is loud!
I was so excited and scared when Master Minded ran in the Queen Mother - you want the legend to come good - and he did, even though he was obviously not at his extreme best. Ruby rode him beautifully and it was a great race. Its a shame Voy Por didn't take his chance as well as I felt 2 1/2 in the Ryanair today was a bit far for him - but I don't think he'd have beaten the Master! I loved Simon Holts comment last year during commentary "He's making Voy Por Ustedes look ordinary, and he's NOT ordinary!"
Didn't have a lot of luck with the betting today, but more than covered my bets yesterday - I don't bet big, and never more than I can afford to loose, and only at the Festival and Aintree - but it adds a bit of fun to it all, though sentiment will trump any bets I have made in a finish!!
I have a mouth ulcer - right on an occasional trigger point - so very annoying! Its stupid how something so inconsequential can have such an impact!
Cirrus is still coughing and I'm struggling to get him to eat all his antibiotics in the evening - breakfast he yumm's up....sigh. He seems to have gone off the speedibeet as well which is typical of him. Hey ho.
Hugs
Niki xxxx
Sunday, 1 March 2009
Great link!
This is a great link for information about TN in all its forms, the treatment options and drugs.
http://www.brainandspine.org.uk/information/publications/brain_and_spine_booklets/face_pain/trigeminal.html
Niki x
http://www.brainandspine.org.uk/information/publications/brain_and_spine_booklets/face_pain/trigeminal.html
Niki x
Friday, 27 February 2009
Sort of Progress
So the situation is that we have the letter HCW sent to Prof Aziz. Their seemingly sole reason for refusing funding is that the procedure is deemed experimental (not seemingly a reason for refusal directly) and that Ethics approval does not seem to have been granted for this procedure. They imply that Oxford had not provided them with this information when requested.
Prof Aziz, we are told, has responded to this letter, presumably saying that ethics approval HAS been granted.....
You can see we are all in the dark somewhat, and back to waiting for letters that may or may not work their way to us! The Prof is on holiday/away for the next few weeks, so I think we have a hiatus now.
In other news, stress levels in the house are high as my Gran is suffering from bowel cancer at the moment and is living with us while she awaits an operation hopefully to cure it. She is nearly 90 so it is not an easy time for her, and the operation is not scheduled until 17th March - that is going privately, but NHS was no faster. Unless she obstructs and is dragged in as an emergence. It is VERY frustrating and sad watching her deteriorate when realistically she needn't. Its tough on us all. She has been better the last few days after I gave her a talking to about using "Please" and "Thank you" as she has driven us all potty "ordering" us around constantly.
I feel for my parents who also have the worry and difficulties I pose for them. I try very hard to be as good as I can, and do as much as I can, but although I hope I have it right with not whinging and not being irritated (the trimiprimine helps with that!) I get it very wrong with my inability to be tidy!!! Sometimes it feels as if my head is so cluttered and untidy its impossible for it not to spill out into life - but that is probably an excuse as I have never been Mrs Tidy!!
Had another Clicker Training lesson today - both boys were brilliant. I was having a feeble day, so didn't do the whole session. Caitlin did Doughnut and they are both coming on leaps and bounds, and I'm so proud of Caitlin working with Do, and how good she is, and how lovely it is having her around to talk horse - or wee pony - to! Cirrus was good and we got on top of his over-emotional reaction to the treats a bit more. He is SO clever.
Poor Cirrus has a lung infection - he's on anti-biotics for it, so hopefully it will clear up really soon. He is not acting ill in anyway!!!
I've been having a good week as far as pain is concerned - have had two days when I didn't have any lollipop at all - which is a big whoppy do! I had a bit today, but pre-emptively as much as anything before the lesson, and then more when we were talking after, which always sparks things off. No nap today either. Have been having a lot of burning pain in my nose which is boring, and had a really odd sleepy-dream-awakeness thing when my nose itched when I was asleep and I scratched it and got whacked for my trouble, fell asleep and did it all over again, even though I was yelling at myself inside not to scratch!!! Madness....
Niki x
Prof Aziz, we are told, has responded to this letter, presumably saying that ethics approval HAS been granted.....
You can see we are all in the dark somewhat, and back to waiting for letters that may or may not work their way to us! The Prof is on holiday/away for the next few weeks, so I think we have a hiatus now.
In other news, stress levels in the house are high as my Gran is suffering from bowel cancer at the moment and is living with us while she awaits an operation hopefully to cure it. She is nearly 90 so it is not an easy time for her, and the operation is not scheduled until 17th March - that is going privately, but NHS was no faster. Unless she obstructs and is dragged in as an emergence. It is VERY frustrating and sad watching her deteriorate when realistically she needn't. Its tough on us all. She has been better the last few days after I gave her a talking to about using "Please" and "Thank you" as she has driven us all potty "ordering" us around constantly.
I feel for my parents who also have the worry and difficulties I pose for them. I try very hard to be as good as I can, and do as much as I can, but although I hope I have it right with not whinging and not being irritated (the trimiprimine helps with that!) I get it very wrong with my inability to be tidy!!! Sometimes it feels as if my head is so cluttered and untidy its impossible for it not to spill out into life - but that is probably an excuse as I have never been Mrs Tidy!!
Had another Clicker Training lesson today - both boys were brilliant. I was having a feeble day, so didn't do the whole session. Caitlin did Doughnut and they are both coming on leaps and bounds, and I'm so proud of Caitlin working with Do, and how good she is, and how lovely it is having her around to talk horse - or wee pony - to! Cirrus was good and we got on top of his over-emotional reaction to the treats a bit more. He is SO clever.
Poor Cirrus has a lung infection - he's on anti-biotics for it, so hopefully it will clear up really soon. He is not acting ill in anyway!!!
I've been having a good week as far as pain is concerned - have had two days when I didn't have any lollipop at all - which is a big whoppy do! I had a bit today, but pre-emptively as much as anything before the lesson, and then more when we were talking after, which always sparks things off. No nap today either. Have been having a lot of burning pain in my nose which is boring, and had a really odd sleepy-dream-awakeness thing when my nose itched when I was asleep and I scratched it and got whacked for my trouble, fell asleep and did it all over again, even though I was yelling at myself inside not to scratch!!! Madness....
Niki x
Friday, 20 February 2009
Visitors
Today a friend came to visit me with her young son in tow. It was wonderful seeing her. Also the trimmer girls came to do the ponies feet - I usually keep them in trim myself but with my leg being bad thanks to Jasper stomping on me, and my TN not being great, I'd let it slip. Doughnut needed his feet properly set up as well. They were good and it was a lovely sociable day.
I get so tired by socialising though I find it a fair payoff - chances are I'll be sore tomorrow, and I'm bloomin sore now, but I don't care.
I am so frustrated with the fatigue and muscle weakness though - the pain is bad enough on its own, but added to the fatigue it makes it that much harder to bear. Having been a strong active person all my life, I find such physical constraint very hard to come to terms with. My overwhelming fear is that this feebleness with result in my having to re-home the ponies. Horses are sine qua non as far as my life is concerned, and I can't imagine carrying on, or living a functional life without them. The chance that it will take 3 years to fight for the DBS is frustrating and sad, as if I carry on getting worse at the rate I am now, I'll be too feeble to handle them at all, even wee little Doughnut.
But hey - we are all learning clicker training together - I want to work now while I can to make Cirrus as handlible as possible, both for me and other people (he has a habit of dis-respecting other people who are not me - he's a bugger!) So I'm not just wringing my hands over the possibilities.
I am determined to find the good stuff in every moment - sometimes it is so very hard, and I would like to just have a holiday from the pain and the mental hard work, but I steer those thoughts away from the front of my mind, and look at nice things.
Like the Cheltenham Festival in 3 weeks! Yey. Tomorrow I'm spending the day with a good friend at her house and we are going to watch last year's Cheltenham that she has had on her Sky+ all year, waiting for us to watch it! I find it hard going to other people's houses and feel very vulnerable, but my good friends are very sympathetic and I don't feel silly or rude if I have to have a break, sleep or rush home. Of course I can't drive being on stupid amount of drugs, and this friend is coming all the way to pick me up.
I'm a very lucky person as I have some wonderful beautiful friends, and I am very grateful for them every day.
Niki xxx
I get so tired by socialising though I find it a fair payoff - chances are I'll be sore tomorrow, and I'm bloomin sore now, but I don't care.
I am so frustrated with the fatigue and muscle weakness though - the pain is bad enough on its own, but added to the fatigue it makes it that much harder to bear. Having been a strong active person all my life, I find such physical constraint very hard to come to terms with. My overwhelming fear is that this feebleness with result in my having to re-home the ponies. Horses are sine qua non as far as my life is concerned, and I can't imagine carrying on, or living a functional life without them. The chance that it will take 3 years to fight for the DBS is frustrating and sad, as if I carry on getting worse at the rate I am now, I'll be too feeble to handle them at all, even wee little Doughnut.
But hey - we are all learning clicker training together - I want to work now while I can to make Cirrus as handlible as possible, both for me and other people (he has a habit of dis-respecting other people who are not me - he's a bugger!) So I'm not just wringing my hands over the possibilities.
I am determined to find the good stuff in every moment - sometimes it is so very hard, and I would like to just have a holiday from the pain and the mental hard work, but I steer those thoughts away from the front of my mind, and look at nice things.
Like the Cheltenham Festival in 3 weeks! Yey. Tomorrow I'm spending the day with a good friend at her house and we are going to watch last year's Cheltenham that she has had on her Sky+ all year, waiting for us to watch it! I find it hard going to other people's houses and feel very vulnerable, but my good friends are very sympathetic and I don't feel silly or rude if I have to have a break, sleep or rush home. Of course I can't drive being on stupid amount of drugs, and this friend is coming all the way to pick me up.
I'm a very lucky person as I have some wonderful beautiful friends, and I am very grateful for them every day.
Niki xxx
Thursday, 19 February 2009
E-mail help
Today I got a great e-mail from a lady in Wales who had a similar procedure done for cluster headaches. It took her three years to fight HCW and get the funding, and she is full of very useful advice. I'm very grateful to her.
Took the form into the GP's to get copies of the letters and we have a meeting with our AM on Monday. We need to clear up the issue of the ethics approval prior to that I would imagine.
Today I also had physio on my leg, which was badly trodden on by a horse in December - I've been enrolled on the lower limb exersise class to help strengthen the ankle which was affected when the shock wave from the impact swept down the leg. They say it is going to be a bad scar on the inside of the leg above the ankle, despite nearly 2 months of physio. I'm pretty unbothered, though I do hope that it doesn't prove painful to ride. It sound sick, but it was a novel and twistedly nice thing to have such a graphic injury for people to ooh and ahhh over - its hard with TN as you look perfectly ok, although I do go a very strange colour when I am really bad, so its hard for people to appreciate the pain or assess how you are feeling.
Niki
Took the form into the GP's to get copies of the letters and we have a meeting with our AM on Monday. We need to clear up the issue of the ethics approval prior to that I would imagine.
Today I also had physio on my leg, which was badly trodden on by a horse in December - I've been enrolled on the lower limb exersise class to help strengthen the ankle which was affected when the shock wave from the impact swept down the leg. They say it is going to be a bad scar on the inside of the leg above the ankle, despite nearly 2 months of physio. I'm pretty unbothered, though I do hope that it doesn't prove painful to ride. It sound sick, but it was a novel and twistedly nice thing to have such a graphic injury for people to ooh and ahhh over - its hard with TN as you look perfectly ok, although I do go a very strange colour when I am really bad, so its hard for people to appreciate the pain or assess how you are feeling.
Niki
Tuesday, 17 February 2009
Been to the GP
I went to see my GP today - he thought I had come in in response to a call about the letter, so was all geared up to give me bad news - but I hadn't had any call from my GP surgery, so would have been in blissful ignorance if my Dad hadn't called HCW to ask. Letter went out on 11th. The nasty GP is nominally in charge of my notes, so should have let me know.
Anyway I have asked for copies of the letter from HCW, and the letter that nasty GP wrote to HCW. The letter from HCW actually says that it is refusing the funding based on the fact that this is experimental surgery and hasn't been approved by an ethics committee - something that I need to check with Oxford as if this is the reason the ball is totally in their court and any amount of press etc is useless. I think that there is basis to argue that it isn't an experimental treatment however.
I've also decided I need to write to Prof Aziz and get him to write me a statement/letter reiterating what he said back in August, that he was very confident that DBS would help me. I need this to keep my fight going inside me, as naturally doubts creep in, especially when someone says you are just chasing surgery after surgery, wanting a miracle cure. I'm more intelligent and realistic than that. After my 3rd op I had a good year of 50% pain reduction - it was wonderful, and I would be happy with that now.
I've also asked for a blood test to check my blood in all areas, just to check that I've not got a problem that is exacerbating my fatigue, as with all the analegsics I'm taking I can't nessessarily feel an ear infection or UTI.
Niki x
Anyway I have asked for copies of the letter from HCW, and the letter that nasty GP wrote to HCW. The letter from HCW actually says that it is refusing the funding based on the fact that this is experimental surgery and hasn't been approved by an ethics committee - something that I need to check with Oxford as if this is the reason the ball is totally in their court and any amount of press etc is useless. I think that there is basis to argue that it isn't an experimental treatment however.
I've also decided I need to write to Prof Aziz and get him to write me a statement/letter reiterating what he said back in August, that he was very confident that DBS would help me. I need this to keep my fight going inside me, as naturally doubts creep in, especially when someone says you are just chasing surgery after surgery, wanting a miracle cure. I'm more intelligent and realistic than that. After my 3rd op I had a good year of 50% pain reduction - it was wonderful, and I would be happy with that now.
I've also asked for a blood test to check my blood in all areas, just to check that I've not got a problem that is exacerbating my fatigue, as with all the analegsics I'm taking I can't nessessarily feel an ear infection or UTI.
Niki x
Monday, 16 February 2009
Poem
TN-Face
This is my face,
My beautiful face.
Serene, whole, silently smiling.
Where are the lighting bolts, the arrows?
Why no bleeding, weeping sores?
No broken, shattered bones?
This is my face,
My mutilated nerves, my agony.
No peace here, no quiet moments.
Where is the comfort,
The visible badge? Pain so insubstantial,
All in my head.
This is my dis-ease, my life in dis-repair,
This subtle horror, indescribable torture.
Suffer onwards, cut, burn, excise.
Where is the cure, the beacon of hope?
When young is the new old,
More lives are destroyed.
These are our faces,
Our beautiful faces.
Pain endured, together we battle on.
Niki R Jones 2007
This is my face,
My beautiful face.
Serene, whole, silently smiling.
Where are the lighting bolts, the arrows?
Why no bleeding, weeping sores?
No broken, shattered bones?
This is my face,
My mutilated nerves, my agony.
No peace here, no quiet moments.
Where is the comfort,
The visible badge? Pain so insubstantial,
All in my head.
This is my dis-ease, my life in dis-repair,
This subtle horror, indescribable torture.
Suffer onwards, cut, burn, excise.
Where is the cure, the beacon of hope?
When young is the new old,
More lives are destroyed.
These are our faces,
Our beautiful faces.
Pain endured, together we battle on.
Niki R Jones 2007
Background and information on TN
http://www.tna.org.uk/
http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trigeminal_neuralgia.htm
http://en.wikipedia.org/wiki/Trigeminal_neuralgia
These links explain what TN is.
My TN started on 24th December 2002. I was watching TV and it was as if someone stuck a cattle prod to the side of my face - knocked me to the ground.
After the pains kept coming and having physio and valium from the GP I was refered to a neurologist, who diagnosed TN.
In 2003 I had an operation called a Micro vascular decompression to remove a blood vessel compressing the nerve root as it leaves the brain stem. This op worked for about 6 months at which point the pain returned with avengence. I then had another MVD that had no effect, and left me with constant shape, migraine like pain over the bridge of my nose and around my left eye. Later I had a third MVD during which the teflon padding placed inside my skull in the previous operations was removed. This gave me a good year of reduced pain, and life was getting back on track. However, the condition got worse again, and in searching for further treatment I made contact with Prof Tipu Aziz, who is confident that his Deep Brain Stimulation procedure will leave me pain-free. Wonderful!
No - I live in Wales. Health Commission Wales, who have the say in who gets funding for what treatment outside of Wales, have denied me funding.
So that is where I am today. I have hope of a pain-free life, but thanks to a postcode lottery, the lack of £40k of money, that hope is not to be realised.
So we fight!!
Niki x
http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trigeminal_neuralgia.htm
http://en.wikipedia.org/wiki/Trigeminal_neuralgia
These links explain what TN is.
My TN started on 24th December 2002. I was watching TV and it was as if someone stuck a cattle prod to the side of my face - knocked me to the ground.
After the pains kept coming and having physio and valium from the GP I was refered to a neurologist, who diagnosed TN.
In 2003 I had an operation called a Micro vascular decompression to remove a blood vessel compressing the nerve root as it leaves the brain stem. This op worked for about 6 months at which point the pain returned with avengence. I then had another MVD that had no effect, and left me with constant shape, migraine like pain over the bridge of my nose and around my left eye. Later I had a third MVD during which the teflon padding placed inside my skull in the previous operations was removed. This gave me a good year of reduced pain, and life was getting back on track. However, the condition got worse again, and in searching for further treatment I made contact with Prof Tipu Aziz, who is confident that his Deep Brain Stimulation procedure will leave me pain-free. Wonderful!
No - I live in Wales. Health Commission Wales, who have the say in who gets funding for what treatment outside of Wales, have denied me funding.
So that is where I am today. I have hope of a pain-free life, but thanks to a postcode lottery, the lack of £40k of money, that hope is not to be realised.
So we fight!!
Niki x
Greetings!
I didn't want to start this blog, believing that life was more than TN, and that it wasn't going to define me.
Sadly it does.
Sadly it does.
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