[ali12]

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

[dealingwithtos]

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.

[InHisHands]

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!

[wildberry2277]

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!

[wakegirl]

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

[frogga]

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

[jennyk38]

Hi,

Just finished reading your post about your daughter and let me first say how sorry I am that she is suffering the way that she is and at such a young age, I just can't even express enough sympathy for you and your family.

Unfortunately, I don't know very much about the type of block your daughter had but it doesn't sound like it helped her very much, if at all.

I used to work with people who had disabilities and one of the problems many of them had was hand contractures such as what your daughter seems to be experiencing. We used something called a cone-splint and inserted it into the palm of the hand to keep it open. I believe an occupational therapist or perhaps a physical therapist would be able to fit your daughter for one.

I also use tramadol for pain and it definitely could be masking pain in other areas of the body, such as the hand.

I'm sorry I don't have any more information for you at this time. I sincerely hope you find answers to all of the questions you have. I also hope your daughter is able to find some relief from all of her pain and suffering soon. I'm sure with a mom as concerned and intelligent as you, she has a good chance of finding the treatment that will work for her. jenny

[betsyherm]

I'm sorry to hear about Allison's worsening problems! I hope she feels better soon.

Unfortunately, your biggest problem right now is that you live in the UK, to be perfectly honest. For some reason, they seem to be a bit behind on treating RSD there, though I really couldn't tell you why. Guanethidine blocks are a type of bier block (using the medication Guanethidine, I believe). Bier blocks aren't really used in the US for treating RSD at all. I know that a lot of doctors believe that they can just make things worse. I've never had one, but the process I've read and heard about sounds very brutal. It's no wonder to me that it could worsen RSD instead of make it better.

Here, people usually start off with sympathetic nerve blocks, which don't involve cutting off the blood supply to the affected limb or anything horrible like that. That doesn't mean they necessarily work better (all people respond differently), but at least it's not as brutal a practice, and therefore has less potential for making things worse (although, there are cases when these blocks have made things worse too...nothing's absolute).

So...that's just my little bit of information for today. I'm not sure all of it is entirely accurate, but that's just what I've heard from other patients and from doctors. I hope it helps you find the treatment Allison needs.

-Betsy

[nikmcjo]

Hey,

I am very sorry to hear about what has happened to your daughter. I hope this straightens out soon.

I cant help too much with the nerve block but the same thing happened to my right hand for about a month. I was incapable of moving it (and it wasnt pain preventing me from moving it although there was a lot of pain bc already had rsd there) for about a month. My hand was forming a fist and I also was experiencing a severe loss of balance because of my right leg (not from a block though, they still really don't know why). The top half of my leg would jerk me one way while the bottom half jerked me the other way and I would violently be thrown to the floor eachtime (stupid leg). I went back to using crutches for a day until my pt took them away from me.

But anyways, what they did to help prevent my hand from staying in a fist was use a hand splint they use for stroke victims at the rehab center. It was a styrofoam splint. It was a big rectangle for the hand part and a small one coming out for the thumb. They duct taped it and used the softest material they had that velcroed on. It went over the hand to help keep it straight. It didnt help the function (immobility, but they only made me wear it an hour at a time until my doc said no). After a month, I got function back in my thumb and slowly back in my fingers (except index ).

The only thing that they could think of that happened was something called a conversion disorder/reaction (I forgot). But they never really went into finding out what happened. But ask if this is a possiblity.

I hope this helps. Keep us updated.

Nikki

[mollymcn]

Hi there - I help take care of my best friend who has advanced RSD. She recently & very suddently started having the same type of hand spasms your daughter has. There is a danger that her hand will stay locked in that position if you don't pull her fingers apart, I'm sorry to say.
So I agree with Frogga - you have to undo the spasm yourself, right away. I have tried everything on my friend, and have found a method that works, with my friend: massage. I use 2 types of massage strokes, one is long gentle strokes down the length of the outside surface of the hand, starting above the wrist bone all the way to the tip of the fingers. My thumb is on the middle of her palm. The idea is to warm and relax the muscles (mostly warm them and calm the person). I also verbally inform the hand muscles that 'they do not need to do this!'
The second massage technique is to gently search for muscle knots, and do a firmer circular massage in just that one spot. The muscle 'knots' are certain places that hold the most tension. I'm not a professional so I'm not quite sure how to describe this - I just imagine where I hurt the most when I'm in pain (I have fibromyalgia). Good spots to try for release are the base of the thumb muscles, and about two inches above the wrist bone, up the arm. If you google "pressure points massage" you might find a diagram of the body that illustrates these.
This massage can take a reeeeeeeeally long time before the hand lets go. Sometimes an hour or more. The basic idea is to generate an aura of calm reassurance that you are certain the hand can, and will, let go. Relaxation is key, both yours and hers. She must be very frightened, and your own hands' emotional messages can fill her hands with calm healing.
As soon as her hand lets go., or even a finger, or even just a knuckle!.. slide your hand inside it! Not as if you are holding hands, but as if she were molding her hand on top of yours. If you can't get your whole hand in, even just a finger is good. Anything to open up some space. Grit your teeth... her clamping hand is probably gonna hurt yours awful lot! [not as bad as childbirth did though] Having a tennis ball or smaller ball handy would be a good idea too...slip the ball inside her fist as soon as you can get it in.
In sum: don't wait till you get into a doctor's office. You can probably coax the hand open, or pry it open, with some patience and mom-type gentle firmness.
Good luck!
M