Hi there - sorry for not replying - things have been a bit hectic here
Alison has been off baclofen for 5 days now with no noticable difference in either the spasms or swelling
The physio did a home visit on Wednesday and said to try to keep the leg elevated as much as possible when rested but nothings changed at the moment - suppose its just one of thise flares we sometimes see
Had a meeting with school mid-week to discuss Alison going back to school on a part-time (afternoon) basis after half term (so returning the first full week in Novemeber). Not too sure what the outcome will be as they are really worried about the risks of her leg getting knocked in corridors, classes, labs etc etc etc. They are thinking of letting Alison do her lessons in the "Learning Zone" (a Library / IT Suite) but there are problems in that there will be no actual tuition or socialisation - the main problem is that for Education Department to provide a support assistant,escort, scribe etc she will need to have a "Statement of Educational Needs" in place and that won't be through till the end of this year - so its a bit of a mess at the moment
On a more positive note I managed to get Alison to open her thumb just enough to instert a really thick highlighting pen into her fist and she managed to write a little by herself for the first time in weeks - she was so thilled as were we all !!!!
I also showed the Physio how I handle her around the house by supporting her on crutches as it keeps some form of weight-bearing through the good leg and also minimal weight-bearing through the heel of the bad leg
She saw the balance / coordination problem I was talking about and told Alison to take smaller steps but try as she might, she could not make each step the same - even with intense concentration - she was willing the steps to be the same but every other step the legs shot out and did their own thing
the physio did say that she now knew what she was up against and will try and look at ways to combat this when Alison is readmitted to hospital next week for three days of intensive physio
Both Alison and myslef would be quite happy to settle for how she was when she was first diagnosed with RSD, as an intermediate step - to have the pain but be independant would be an improvement - though we can't help wondering of things would have ever got this bad if the pain team had not intervened with the nerve block and meds - none of which were successful in any way.
Hopefully things will start to improve more soon !!!!

Hi Andrea,

It will be great for Alison to get back to school to her friends and although there will obviously some obstacles for her I think the postives will outweigh the negatives.
Her friends will rally I am sure to help protect her in the corridors and school grounds.

I notice you were wondering if her nerve block was the start of her problems, did she only have one block? Usually failure of the first block would lead to trying another as it is often a series of blocks rather than none isolated one that helps.
Was this an option for her?
I do hope things will get better for her soon.(fantastic about using the pen)
Love Tayla

Hi Tayla
No - she only had the one block - a guanethidine block
I've read somewhere that these types of blocks (with the tourniquet) are not used widely in the States as it has been shown that to inject directly into an already sesnitive nerve can cause real problems
I can't help but wonder if people here are not being straight with us - as the block was ineffective we were told there was no point in doing another block but the balance and coordination problems were never widely discussed - to be told this is a confidence problem is really annoying as none of us can think of a trigger to the start of these problems other than the block !!!! Alison walked to theatre on her crutches but has not walked since - just a coincidence - I seem to think not !!!!
Similarly this persistant claim by her physios that the arm is a tension response to a sprained wrist and not RSD - even though Alison has the same burning pain / spasms and I have written notification form her PM Consultant that the RSD affects the arm (but not hypersensitivity as we keep up with regular desensitisation) - is to distract us from the real facts - that the dosage of amitrypteline was increased very quickly and the severe side effects caused the fall that lead to the spread to the arm
I almost feel like the staff at the hospital are so guilty about the spread to the arm that they are purely concentrating on this at the expense of the leg at the moment
I have tried to gain a referral to another large hospital with a specialist Pain Management Unit but they have written back to say that as Alison is under 16 she would have to be referred on to the unit we are at in any case
Alison is back in hospital for three days next week so I hope that finally they will take on-board our concerns and begin to concentrate on getting Alison mobile again. Even though they have not been able to find a drug to effectively control the pain, to have Alison mobile and independant to some degree would be wonderful at the moment !!!
I'll keep you posted on how things go
Love, Andrea

Andrea,

It was guanethedine, sorry, I thought she had a lumber sympathetic block The guanethidine is injected into a vein in the leg and there is a chance that perhaps the vein may have been damaged at the time of injection which could cause some local haematoma formation.This does resolve but can cause lots of pain if it happens and of course make it a very negative painful experience for Alison.
I have had one and one only guanethidine block. After needing 100mgs of Pethidine IV to get me through it and then a 3 week hospital stay after to "mend" the extra pain I had, I decided it was NO for anymore.
Whilst I have heard of some people having some luck with them, I wonder how many of us can tolerate the tourniquet well enough to make it worthwhile.
I wonder if an entirely new approach is what she needs--hopefully her stay in hospital coming up will steer things in the right direction for her.
Sending you lots of good wishes
Tayla

I loved the guanethidine blocks! I was part of the trial studies here in the U.S. about 12 years ago. They give you the med. through an IV into a vein, not directly into the nerve. The only blocks I had that were into the nerve were awful. They were 13 years ago, and I ended up with a permanently twitching toe. The nerve in that toe has been causing me extra grief that I just didn't need, thanks doc!

The guanethidine trial involved more blocks than they allow these days, from what I've heard. I got 2 blocks a week for 6 weeks to start, then 1 a week for another six weeks, then 1 every 2 weeks, etc. This went on for over six months. All totaled up, I got around 30 blocks done.

It was awesome. I had warmth in my leg for the first time in several years, and the pain level dropped enough for me to quit wearing the ROM boot for the duration of the treatment... but about 2 months after the blocks stopped, all the bad stuff came right back. I ended up back in the brace for another 5 years, and the atrophy was awful. But I will never forget that time, I look back on it with longing.

I didn't get any real relief from the first two blocks. But once it kicked in with the third, I was in heaven... I sure hope your daughter can try again. I hate to hear of Alison being in so much pain.