Hi there
As you know, my 12 year old daugter Ali was recently diagnosed with RSD
I have quite a few concerns about her treatment so far and I'm hoping someone may be able to tell me their experiences before I see her Consultant next week
Alison was admitted to hospital at the end of June this year. During all the tests, assessments and therapy, Alison was able to walk around the hospital on crutches, albeit very slowly.
She had a guanethidine nerve block to her lower leg in early July and from the moment she came out of theatre has been unable to balance herself on her crutches. Consequently she is now in a wheelchair unless someone can support her on her crutches. The physios tried to get her to hop on one leg but she is so tired that the most she can string together unaided is about 5 steps which doesn't allow her freedom to move around herself
My first concern is has anyone experienced something similar after a nerve block as I can only assume that the block has something to do with the loss of balance as she walked to theatre but had no balance after the block. It seems too much of a coincidence to me !!!!
If the block has caused the balance problems will this be a temporary problem which will resolve itself once the drugs are out of her system...? Is it possible that the block went into the wrong area and blocked motor nerves rather than sympathetic nerves...?
I understand that RSD has two types of pain - sympathetically controlled pain which can be reduced by the use of blocks and independantly controlled pain which is not responsive to blocks. Does this mean my daughter has independantly controlled pain and does the type of pain have any bearing on recovery or remission rates...?
My second concern is that Alison now has lost the use of her right hand after a fall early last week and a resultant wrist sprain.
Over the weekend, as the swelling and bruising subsided, her hand began to clench into a fist and there is now no-way to open it. It is really difficult to prise her thumb and fingers apart to get them to fit the crutches. The wrist seems to have developed the same type of dystonia she has in her ankle but slightly more quickly. The hospital seem to think that this is a spread in her RSD and want us to go and see them next week. Could this be a spread and if so would it happen so quickly after an injury...?
Alison does have some pain in the arm but not as much as her leg - could it be that the Tramadol she takes is reducing pain in the arm at the moment...?
My biggest fear is how quickly things are getting worse at the moment .... Is this usual and should we see a stabilisation in her condition soon...? It there a "cut off point" at which things progress too far to improve fully...?
I am sorry to ask so many questions but need to have some advice before I see Alisons consultant next week

Hi Andrea,

Most of what you ask, I don't know. I can say what happened with a nerve block with me. Because my RSD is in my arms, it was done in a different place than your daughter. But, I can say, I did not have any relief from the nerve block. There was no response from my arm at all. I was not able to return to work after the block. It was done on a Friday so on Saturday I was still not feeling well. I had the normal side effects of the block, but went away in about 6 hours. Note: I had lidocaine, not what your daughter had.
It was thought that I had RSD for about 3 years before it was diagnosed or treated. So, that might have something to do with it.

Frogga (another member here on the board) may be able to help with some of the other questions that you have.

My RSD has not progressed like your daughter, but I do believe that it could spread fast with an injury.

Good luck at your appointment. Please let us know how you and Alison are doing.

Yes, please do PM Frogga. She is away right now, but will be home soon. I am sure she'd be glad to help, once the trip pain wears down. She knows more about the dystonia and since she lives in the UK she'd be better at answering some of your questions.

HTH! Give Ali a ((pain free hug)) for me. Poor dear!

So i had a block on tuesday... Since the block i have been in a flare... And started having leg pain... my balance has been also off and i took a stumble down the stairs.... Now in more pain of course... I can only assume it was from the blocks... No flare before and now in intense pain and very dizzy! Ali12 if you want pm me... I would like to talk to you about it!


Pain free hugs to all!

i had my first rsd dx when i was 13 (r lower leg) now it has spread from my lower body to my upper body. i had a similiar flare of dystonia into my hand following a surgery. a couple of things helped that you might want to ask about. 1) a stellet block...it is in your neck. 2) botox injections into the muscles of the problem area...it is not a very comfortable procedure but it relaxed my muscles and i was able to function...the process needed to be repeated every 6 weeks. 3) a cervicle spinal cord stimulator. i would say that the order in which those suggestions were made is probably the order to progress if it doesnt resolve. however i would suggest trying an iv prior to any inections to make sure it doesnt flare throughout the body. a non invasive procedure that helped me was to go into a hyperbaric chamber...it took a few times to notice any change but on a positive it doesnt hurt to give it a try.
lauren

Heya

This will have to be a quickie.

Arm dystonia - happens with RSD sometimes. Is she using gutter crutches? or a gutter frame. Both will help with wider stability and will enable weight bearing through the forearm instead of the wrist. Wider base means less falls and better stability.

Can she stand with crutches without someone helping with balance?

We found it is imperative to pull the spasm out and it hurts like hell. But with me anyway (I have full body RSD after developing it when I was 16 and also have generalised dystonia etc etc) if my spasms aren't pulled out then my nails grow into my palms etc and the longer you leave a joint in spasm the more difficult it is to get out. (I have very bad contractures from the RSD). With hand/ wrist it helps to put the hand in hot water and then go for each finger individually and put something like a rolled up bandage in the hand, it stays in if you tie the bandage over the top of the hand. Botox can sometimes help if Nottingham will do it. Try and encourage her to use the hand as much as possible.. and sometimes disctraction helps - like getting Ali to close her eyes and count backwards from 100 in 7s might help release the spasms abit.

The alternative spasm reduction thing is to push the joint as far into the spasm as possible - as the muscle then lets go if you push hard enough into the spasm.

Some people are affected by blocks like that. Does Ali go swimming?

Also have you looked at Bath pain management program for young people? I have never been but it is apparently very good.

ok that's all for now. Feel free to PM me if you want to.

Take care

Love

Frogga xxxxx

Hi Frogga
Thanks for posting - I thought you were on holiday!!!!
In your post you asked a number of questions which I'll try my best to answer
Crutches - Alison uses normal crutches, not the gutter type. I suppose this was because she had full use of her hands when they were issued. There has always been a problem in that Alisons hand become sore and her arms become tired basically because much of ther weight has been transferred through her hands for months !!! Do you think a gutter crutch would help...? I'm sure it would be a safer option as I often have to prise her thumb and forefinger apart to get some sort of grip on the crutch
That leads to your Second Suggestion - Getting the hand out of spasm. In the first few days after the injury this was possible. My grandma had a similar problem in her hand and was made a resting splint which we managed to use for a few days. Unfortunately each time we took her hand out of the splint to use the crutches it was harder to get it back on there until it became impossible. I have tried numerous methods to pull the hand out of spasm but without sucess. The hospital mentioned splintng it under general anaesthetic couls be the way to go ...so we'll see
Next Balance Problems - I have noticed that Alison can balance on her crutches for quite a while (a minute or so) but that the minute she attempts any form of movement her balance is completely lost and she stumbles. Luckily she hasn't fallen on her crutches yet as I am there to catch her !!!!
Her left leg seems to have lost all sense of coordination
Swimming - Alison used to love going swimming but we can't manage this anymore as getting her into and out of the pool is impossible without specialist equipment. I am aware that swimming would be excellent therapy but need advice on any centres in our area which have such facilities
Bath Pain Management Unit - I have looked at this an will be drafting a letter to my GP to ask for a referral here. I shall also be asking Alisons Pain Management Consultant if her can provide a referral here as well as providing me with a referral for a second opinion !!! Frogga - I understand you live in the North of England - have you any recommendations as to who may be the best Consultant / Hospital to see to get this as I'm seriously worried that Sheffield Childrens Hospital do not have enough experience of treating children with RSD (They have about 4-5 children on their books at the moment)
If I appear to be coping well with this illness its mainly because I was a carer from the age of 12 for my mum who had progressive MS. She died in 2001 but many of the problems Alison faces I have experience of dealing with on a daily basis as both present similarly.
I was aware that Baclofen would help to relax the muscle spasms and requested this on several occassions in the early days but was told Alison did not need it. Amazingly it was the first drug she was prescribed once there was a suggestion that she had RSD and it is the only drug she is still on from those originally prescribed - strangely enough it has never been increased although the spasms have worsened over the past couple of months. I am aware that Baclofen will help me to work "with" the spasms to gain movement as my mum was one of the first people with MS in the UK to be fitted with a Baclofen Infusion Pump which worked wonders for her for a number of years
Can anyone advise of their experiences using Baclofen for spasm and whether the dosage of 5mg 3 times daily is adequate...?
Many Thanks
Andrea

Hiya

Sounds like you are in a similar position to my mum. She cared for her mother from the age of 13 or so after Granny had her spine broken after a quadraplegic she was dressing fell on her (I know. My family is infamous for stupid accidents..). So mum has also been through this lot before... and in many ways it does mean that she a) knows how hard and mean she has to be for instance with desense (I'm a quad with almost no voluntary movement) or pulling the spasms out (more on that later) or any of the rest of the stuff! and it means that she doesn I know with mum I do feel very guilty that she is having to go through all of this again... but I suppose it's real life and life just is not fair. I don't know if it makes it easier for mum or not but it seems unfair that some people end up having to take over the carer role... and sometimes it feels like mum is cursed by it! However.. I don't know if you find this, but I know that mum doesn't panic particulary anymore and things that might seem huge obstacles to others aren't to us anymore. If that makes any sort of sense?

Crutches - gutter crutches would probaly be useful also as they have a wider surface area there will be less pressure overall and almost none (none?) through the wrist. It could actually be the crutches causing some of the issue - long term use of the UK NHS ones can cause nerve damage etc.. so trying them could be worth a try. You can also get gutter walking frames which are taller and more supportive than the normal frames. (Can you tell most of my family are nurses?). Also it could be worth looking at arthritis crutches as well - far thicker handles so would also act as a form of cone splint.. just a thought.
I had a pair similarish to these http://www.sportstek.net/rgc.htm
but heavily padded. by physios/ OTs. I can't find the picture of the frame - but it's just the same idea just on a walking frame thing.

Swimming - two things I have found. 1) I think there is a law which means that swimming pools must be accessible through the use of a poolside chair hoist. 2) Lifeguards are normally awesome. At the pool at home they will spinal board lift me in and out and the pool I use when I'm at uni has just had a sling adaption placed so they can chuck me in and out of the pool using my sling which is alot simpler than boards! (though both pool have seat hoists as well) However I have NEVER had a problem with lifeguards helping me in or out. And when I wasn't as bad as I am now they used to be awesome using the chair lift thing. I have also found that almost all the lifeguards will lift me as well if needs must. You might be able to find a special school with a heated pool that is open in the evenings or just ring round the local pools they are bound to have access.

Spasms. 5mg of baclofen tds is a tiny tiny dose. You can take up to 110mg a day (what I am on) and I also take Benzhexol (Trihexyphenidryl) and diazipam as well as my other RSD meds. I have found Benzhexol works well for me, if I don't take it then my dystonia really goes mad I think it works better than baclofen.. but I have ended up on a very high dose of it as the low/ normal doses just didn't touch the dystonia. Also... I was wondering whether Sinnimet plus has been suggested? If the spasms are dystonic then maybe increasing the amount of dopamine might help?

What about botox? It has really helped my thumbs - (the contractures have dislocated them over the backs of my hands etc and it has helped with it so could be worth a try). I do know how hard they are to break... even with 30 stone bouncing on my knee we can't straighten it, or bend my elbows etc... my best mates at uni are mostly all huge broad shouldered (male) rugby players and they find the spasms almost impossible to get out.. so I can DEFINETLY empathise!!!

Hospitals. I'm actually from Suffolk but have been treated under Hope, Bath, Addenbrookes, West Suffolk, Colchester, Kings London... probaly more if I could be bothered to think about it... (made the mistake of searching for a magic cure.. and believing a doctor somewhere would have the magic potion that would clear it all up instantly..). I'm now treated under Colchester, Kings and Bath and am waiting for a referral about a ketamine/ baclofen spinal pump to Basildon somewhere. Pumps... they are NOT keen on giving them out because of surgery and RSD. They are only just suggesting one to me 5 1/2 years into RSD and about 5 years since the dystonia started taking over.

In my personal opinion Bath PMP may be a good place to go.. they won't cure the RSD but they can make it alot easier to deal with - I never went on the program but that's what I have heard from others. Nottingham children hospital (I think?) is supposed to be very good, there is a great neuro at AlderHey in Liverpool who deals with RSD/dystonia in paeds also apparently Bristol childrens hospital (I'm on a UK site for teenagers with RSD). From what I have heard I would avoid Great Ormond street with a passion I really really would!!! They appear to be very keen to focus on the psychaitric causes (!?!?!) of RSD. If you are interested I can email/ PM you more info on them. You might be interested in SKIPS (though this website is very good for support/ information on RSD it is primarily American patients whereas SKIPS has the UK paediatric patients and parents who may be more helpful than I can be as they have actually been under Alderhey etc).

Oh yes. Have you tried HBOT?

Ok take care... I am in a haze of utter tiredness and pain at the moment so I hope this hasn't come out as gobblygook...

Love and gentle hugs to you all.

Frogga xxxxxxxx

Andrea,
Iam so sorry for what your daughter is going through. She is just too young. God Bless her. When I first got the rsd from a hip replacement my siatic nerve was damaged during the operation. Right away I had right foot drop. My foot would curl right up almost in half. The pain was nothing I had ever felt before. My family would have to slowly massage it out. Leaving it curled up was not an option.The pain had me screaming until they fixed it. It will be hard for her to have this done, but it must be done. I've noticed in the past 6 months that my balance is very bad. Even with the crutches i've been falling. I havn't had any blocks for 2yrs now. Iam hoping its not the rsd.
Please tell your daughter I think she is amazing. To be that young and to have to put up with what she does. I'll be praying for her and you.

Sue K.