[ali12]

Hi all
Just brought Ali back from hospital and thought I'd take the opportunity to post
Ali is not happy with me at the moment, she feels I have let her down in todays meeting with the Consultant but she was asked to stay in Physio so has her own take on how things panned out. She is still adamant that she want to go elsewhere
I asked the Consultant about the problems following on from the nerve block and he said he had never experienced problems before with this block. I mentioned Alisons friend who had complications after a similar block but he didn't remember it and said he needed to look into what type of block she had. He did mention that sometimes people have wierd reactions to blocks without any apparent reason and that was why he was decided to hold off doing any more at the moment
I had a long conversation about the terminology used with regard to Alisons condition - eg Confidence issue, protecting herself. I said it made Alison think that what was happening was in her control. He did say the words were not meant to reflect this and that what was happening was the nervous systems reaction to events and was not under Alisons control which I asked him to tell Alison directly as no matter how many times I try to explain this she cannot grasp the concept.
With regard to the pain, he has suggested that we increase the Lyrica as Alison seems quite OK with that and she does have a lot of side effects with some other meds we have tried. If this doesn't work he will try ketomine and possibly Methodone but is worried that Alison body may not be able to tolerate them in the dosages she requires so we have to keep our fingers crossed that the Lyrica works
With regard to a second opinion he said it would be difficult to sort out as UK Pain Management Clinic do not usually take children into their care, especially when there are specialist paedeatric units. That said he will be asking some of his fellow Pain Council members if they will talk to us and it looks most likely that this will be in either London of Glasgow, both a four hour drive away.
The Consultant did say that the treatment regimes offered at each of these Centres were fairly standardised but I think Alisons whish to move is governed more by her not liking the staff at our current hospital and having had bad experiences with the block and medications administered thus far. My big worry is that this may also continue elsewhere and the reaction is actually aimed at the intensive PT which she finds so hard due to the inability to reduce her pain levels, would we find ourselves in a similar situation in a few months time
Once again it was stressed that actively researching Alisons condition and her memories of her grandmas nurological condition (MS) may not have helped and that it was possible that when the block failed to control her pain the body went into a protective mechanism which made if extremely difficult for her to walk. Personally I find all this a little hard to shake off the coincidence that all of this coincided with the block and that is one of the overriding reasons why I so desperately need to seek another opinion.
With regard to remission and recovery, the Consultant did say that it was his believe that PT and a return to normal levels of activity played a major role. He believes that some children are in the right mindset at onset to be able to follow the PT and push through the pain barrier to recover quite quickly whilst others find this extremely difficult. Of the patients he has treated over the past few years only one was passed into the care of an adult unit unable to walk, and she is now walking again. He did say that he may have come accross as too optimistic at the time the diagnosis was made but that the majority of young people find it hard to cope with the demans the treatment regime places on them until they are mature enough to cope and understand what is expected of them
Just wondered what anyone else thought of this - does it ring true or is Alison right to still have concerns
Many thanks
Andrea

[dreambeliever128]

My thought is that even if this Dr. didn't mean what he said before he may still not be doing enough to help Alison get better.

As far as PT. I think that they are wrong about making a person do some of the exercises they are making them do. These PTers. might say they know about RSD but saying it and proving it is two different things.

If you went to a new place, I think that you might come out with different answers. They can also be a part of each others group but it doesn't mean that they all use the same techniques to take care of a person with RSD.

A lot of us on here have had horrid experiences with Drs. and had to move on. I question too about the block. Why does he keep saying it didn't mess her up. Why would he not try one with other meds if that were the case? I do believe the right blocks might help to put Ali into remission. I'm not saying it will but I believe it is worth a try to have more blocks with different meds.

As far as the medications. I am on Methadone but with Ali being so young I wouldn't know about her taking it. A low dosage might be ok for her but why would he not try to help her in other ways besides the meds.

I went to a Physical Therapist that said that I may get worse before I got better and my Dr. called them up and said no. You may get worse and not get better. There are just a lot of things RSDers can't do.

If Ali goes in and talks to him, who's to say it's just not his way of trying to smooth things over so he can keep making money?

It's worth phone calls to clinics to ask if they will take on Ali even though she is younger. They would tell you yes or no on the phone if they take children.

With RSD the longer they wait to attack it the more it spreads. I don't believe like they do that the kind of PT they are doing is going to help her the most. It comes with other medical treatments. Blocks, meds, warm water therapy, myofasial release, massages, triggerpoint injections. There are a lot of things out there to help with RSD besides just the PT.

I am just giving my opinion and I know others will come back with more. I just believe in finding a Dr. that cares and that will listen and even work with the patient on using some of their ideals.

Hi Ali,

Sorry that you are having such a hard time with this. I would meet with this Dr. and listen to him and see how he explains things and if they are to your liking. If not then maybe you and your Mom can find you another Dr.

Ada

PS, I hope I am not coming off too strong but I do believe that we have to choose the right Drs. with RSD.

[kittysmom]

Hi Andrea,

My name is Linda and I am new to this forum. I saw your post about Ali and felt compelled to reply. My daughter Kirsten is 11 and has been battling rsd since she was 8 years old. Kirsten did not have any blocks done so I really can't help with that but it does appear that things went somewhat haywire when that was done. We don't know what started the rsd in Kirstens wrist but it spread into her hands and fingers and up her arm to her elbow and shoulder. It was 2 1/2 months until she was diagnosed with rsd and put on amitriptyline and started physio. We also went the intensive physio route--4 or 5 times a week and when we weren't at the hospital we did it at home so she had 3-4 sessions a day. After about 2 months Kirsten was able to move her wrist--just a twitch--and from there she continually improved. Today all she deals with is wrist pain that is about 1 out of 10 on the pain scale. I understand that the physio is not the right way to go for everyone. Kirsten worked through the pain and came out okay at the end of it. It was the hardest thing she has ever done in her life and will probably ever do. Kirsten loves to find new email friends so if Ali would like to chat with her please send me a pm and I will pass on Kirstens email address. Sometimes when kids connect with someone in the same situation it helps to make them feel not quite so alone in all this. I wish you the best of luck and hope that you are able to find some solutions for Ali.

Linda

[Kyzyl363]

I really don't know what to say here, other than I can understand your position and wanting another opinion. Please don't misinterpret or inference anything in my questions, I merely want to understand things better to maybe help or be more supportive.

I know you are looking for answers as to why the imbalance happened and want them to take some responsibility for it but did they happen to even offer a possible solution for it or a way to maybe counteract it? Did he ask if there were any more side effects or other issues arising because of this imbalance, I mean other than the obvious with the crutches, walking, inconvenience, etc of it all, but physiological changes because of it like it is affecting her progress with her arm or affecting her wrists, how is this affecting her progress with physio or whatever? I usually take a list with me of the questions I want to ask. A list helps me ask all the questions plus any new ones without getting 'blurred vision' by new things that annoying me about talking to this person. Please, don't misunderstand me, I am just trying to help.....

I would definately seek a second opinion and follow up with him about the other patient you had referred to. I am really against things like methadone treatment, I mean if it is an absolute last resource, maybe, but I would think that is more for someone who is not responding at all to treatment, I mean a good treatment program. I would rethink my physio before trying something like the meth cocktail. Sorry, I am also not crazy about ketamine but I have not progressed to the point that Ali has nor to the degree many others here have. I am sure that if I were to a greater extent I would be thinking anything, as long as it works to take away the pain.

Ali's not responding to the staff well maybe good enough of a reason to seek other resources. A person's state of mind can really determine their outcome and I would think more so for a child. I would try to differentiate between the treatment being given versus the staff giving it with Ali to really see if she can distinguish between the two. If she can then she should be able to continue where she is and have success there. On the other hand, if she receives the same treatment with people she connects with she may progress more quickly or with less ups and downs. I hate the place I am at. I am fine with doing the exercises they have given me and will do all that they ask me to but I am often flairing up because I don't like going there and being around them. That's just me. I am an adult and can distinguish between the two and know that to some degree I have improved some but still want to be elsewhere and am thinking all the time I could be getting so much better elsewhere. I would be more receptive to various types of treatments if it was being offered by people I can connect with. I think you know what I mean.

I really hope I haven't said anything to offend anyone. I want to be supportive and here for you both. Let me know if there is anything I can actually do to be helpful. Until then TTL J

[miss irie]

I'm sorry to hear that things have been really difficult for your daughter (and yourself, I'm sure). I wanted to share a bit of my story with you as I too had a very difficult time in the early stages. I have CRPS in my left leg, which started after knee surgery in Sept '03.

My ortho surgeon became very concerned as I was still using crutches after 8 weeks (Sep-Dec). The suspicion that I had CRPS was voiced for the first time. Despite physio sessions 2-3/week I was unable to fully extend my left leg and remained incapable of walking without crutches. The exercises I was performing in physio were of little benefit as pain was a very real obstacle for me. Frustrated by my lack of progress, my ortho surgeon performed a knee manipulation under general anesthetic. We hoped that his bending my knee would improve my range of motion (ROM). The procedure was performed just before the Christmas holiday — it certainly did help.

My physio sessions began again in January. The majority of my exercises were now conducted in the hospital pool (minimum water temp 90F). This was the best thing that had happened as I was finally able to begin weight bearing and exercising my leg. Also, I was seen by a pain management specialist who confirmed that I had CRPS. I began receiving a lumbar sympathetic block (under fluoroscopy) every 2nd week (January thru July). I found the blocks to be painful but I strongly believe they were beneficial to me.

Over the next few months I was finally able to bend my knee but, unbelievably, my leg would no longer fully extend. In May a 2nd knee manipulation was performed under general anesthetic. I wore a cast for the following 10 days. Then for the next 4 weeks I wore a removable full-length leg brace/cast during the night. This would forcefully hold my leg straight while I slept. I continued physio sessions in the pool and was finally able to ditch the crutches and walk with a cane.

As you know each person responds differently to treatment plans and I thought it might be of some help to you if I included the medications I was taking at that time. I was prescribed Gabapentine but I was not able tolerate this medication. I took Tylenol 4 for break-through pain, Effexor XR 1/day, and Codeine Contin 2/day. I also began taking Prednisone 5mg/twice daily for 5 weeks. The combination of blocks and medications significantly decreased the swelling, redness and burning pain. Pool therapy was critical factor in my progress.

As of today, I attend a local Community Centre and use the pool there. It is critical that the water temperature be very warm so I had to check around first to be sure that the facility would work for me. I try to take a short walk each day. I am not in remission and my condition has continued to deteriorate over the last 4 years — I hate to think what condition I might be in had I not had these treatments early on in my illness.

I wish you the very best. I'll keep you both in my prayers.

Catherine (Miss Irie)

P.S. Many drugs can cause severe constipation. I take a stool softener every night and also a Senna laxative a couple of times each week. The dosage can be adjusted as required. These are non habit forming.

[ali12]

HI,
Thanks for all your replies I really appriciate them. I will get my mom to reply when she comes in from work. If you want to see a photo of my leg then please click on this link:

http://neurotalk.psychcentral.com/sh...t=31970&page=2

The photo doesn't show the muscle spasms. I have colour changes too but you can't see them on the photo properly. My leg goes blue,black,yellow and red However you can see the swelling.
Thanks
Alison

[tommie]

Originally Posted by miss irie

I'm sorry to hear that things have been really difficult for your daughter (and yourself, I'm sure). I wanted to share a bit of my story with you as I too had a very difficult time in the early stages. I have CRPS in my left leg, which started after knee surgery in Sept '03.

My ortho surgeon became very concerned as I was still using crutches after 8 weeks (Sep-Dec). The suspicion that I had CRPS was voiced for the first time. Despite physio sessions 2-3/week I was unable to fully extend my left leg and remained incapable of walking without crutches. The exercises I was performing in physio were of little benefit as pain was a very real obstacle for me. Frustrated by my lack of progress, my ortho surgeon performed a knee manipulation under general anesthetic. We hoped that his bending my knee would improve my range of motion (ROM). The procedure was performed just before the Christmas holiday — it certainly did help.

My physio sessions began again in January. The majority of my exercises were now conducted in the hospital pool (minimum water temp 90F). This was the best thing that had happened as I was finally able to begin weight bearing and exercising my leg. Also, I was seen by a pain management specialist who confirmed that I had CRPS. I began receiving a lumbar sympathetic block (under fluoroscopy) every 2nd week (January thru July). I found the blocks to be painful but I strongly believe they were beneficial to me.

Over the next few months I was finally able to bend my knee but, unbelievably, my leg would no longer fully extend. In May a 2nd knee manipulation was performed under general anesthetic. I wore a cast for the following 10 days. Then for the next 4 weeks I wore a removable full-length leg brace/cast during the night. This would forcefully hold my leg straight while I slept. I continued physio sessions in the pool and was finally able to ditch the crutches and walk with a cane.

As you know each person responds differently to treatment plans and I thought it might be of some help to you if I included the medications I was taking at that time. I was prescribed Gabapentine but I was not able tolerate this medication. I took Tylenol 4 for break-through pain, Effexor XR 1/day, and Codeine Contin 2/day. I also began taking Prednisone 5mg/twice daily for 5 weeks. The combination of blocks and medications significantly decreased the swelling, redness and burning pain. Pool therapy was critical factor in my progress.

As of today, I attend a local Community Centre and use the pool there. It is critical that the water temperature be very warm so I had to check around first to be sure that the facility would work for me. I try to take a short walk each day. I am not in remission and my condition has continued to deteriorate over the last 4 years — I hate to think what condition I might be in had I not had these treatments early on in my illness.

I wish you the very best. I'll keep you both in my prayers.

Catherine (Miss Irie)

P.S. Many drugs can cause severe constipation. I take a stool softener every night and also a Senna laxative a couple of times each week. The dosage can be adjusted as required. These are non habit forming.

I still think my RSD is spreading from my Rt. hand, arm etc. to my Rt. leg especially in the knee area--actually into both feet, but, my Dr. and the WC-insurers do not want to acknowledge this because it would then be labled "full body" and more costly yo them, but, I have been looking for treatment on my own, and I was really glad to come acorss your advice. I have had RSD 10 years, and it had been in "semi-remission" but started up again with a very bad spurt in my knee-it just has to be confirmed before I can get any treatment besides the meds. I am on for my hand--thanks again- I'm a little new on "talking" but, the info. I have obtained here is a blessing. Tommie/Nanette