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
Friday, 27 February 2009
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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