[ali12]

Well, I finally finished the Intense Physical Therapy program - yay!! It is so nice to be home and in my own bed lol.

The program didn't go very well this time to say the very least. The leading Physical Therapist, Sue was away at an International Conference in San Fransisco about Pain Conditions so she couldn't do any hands on work at all. The Senior PT's didn't seem to know anything about RSD and Dystonia so they weren't much help - to be quite honest I think half of them were still at College or University.

We finally managed to see Sue (the leading PT) yesterday and she agreed that things didn't look any better. She did a bit of hands-on work with me yesterday, trying to manipulate my leg into a normal position etc but couldn't do hardly anything with it. She started shouting and I got upset and in tears because I thought she was saying that I wasn't trying my hardest but after the session she apologized and said that she wasn't shouting at me, she was shouting at my leg because she was angry that she was trying to get it to move and it wouldn't. We asked about the use of Botox in my leg to try and treat the Dystonia which is a complication of the RSD has we had heard that it can be very good at treating Dystonic features but she said that because of the reaction I had to the nerve block (it sent me off my balance) and because when I had the ingrown toenail removed it caused me to develop severe muscle spasms that basically it wasn't worth the risk although she did say that she had spoken to the Neurologis about it. Sue said that I have no choice but to have my leg casted in January for a few days as it is my only hope of trying to get my leg straight. The cast will be put on for about a week, then removed and I will then have 2-3 weeks intense Physical Therapy. I'm a bit nervous about having the cast put on as I know you shouldn't do it with RSD but the PT's basically said that we need to take the risk now.

Until January the PT's still want me to keep up with my exercises and have weekly PT at my local children's hospital but they said that they don't think that it will have much impact on the rotation in my foot and that it maybe will keep things from getting any worse.

My mom is going to ask the PT's at my local children's hospital whether it would be possible for them to put the cast on and then do some PT with me. They don't do the 2 week intense course like London do but they said that if needs be they would try and book me in for 2 days PT. I'm not sure if they will cast my leg as when we asked my PM doctor a few months ago, he said that he wouldn't recommend it.

I made a new friend on the program, there's a girl who is the same age as me and she is really nice and friendly - it does help having someone my age to talk to. Her mom and my mom made friends also and went out together whilst us girls were at PT. We have got her email address and are going to stay in touch. Some of her family live near us so she said when she goes to visit them she could come and see us also.

I think the only positive thing about going to London was that my grandad and his wife came to see us! We had a good time with them and went to see a few musicals with them including Joseph and His Technicolour Dream coat and the Sound of Music - they were REALLY good!! I haven't seen them for a year so it was nice to finally catch up with them.

My pain's really high today so I better go but I will keep you all updated.

Thanks for all of the support,
Alison

[jenno]

Hi Ali,

So sorry to hear that your program didn't go as you had hoped; but please remain optimistic as things really can turn around. I wanted to share something with you ... just in case it might be of help.

Just like you, my then 13-year-old daughter was diagnosed with RSD following an ankle sprain. Sarah had week-long epidurals, spinal blocks, took way too many meds, and also participated in an intense PT program. It was not until we discovered hyperbarics that she finally got better. We now have a mild chamber in our home ... and she is doing so well; but believe me, there were so many times that we had no idea which way to turn. As I suspect you well know, it is a really scary place to be.

Regarding the dystonia. We have a neighbor who was so concerned and always shared with us how she was praying for Sarah. This neighbor suffers from cervical dystonia (not rsd), which causes her head to turn sharply to the side. When we got our chamber, we told this neighbor that she could try hyperbarics if she had her doctors approval. Her response to treatments was remarkable. After the 3rd treatment, when she got out of the tube, she was able to straighten her head to a forward position (she was so happy that she sobbed). She had also suffered from pain at the sight of her mastectomy for 18 years, and that pain too resolved.

I know that you have considered hyperbarics in the past. Is this a treatment option that you all could revisit?

Please take care, honey. I know that you are brave, bright, and very sweet. Just like with my daughter, I am certain that great things await you.

Jeanne

[debbiehub]

Sorry it didn't go well for you- I will let you know how the Hyperbaric is going for me- as Jeanne said, maybe that would be a good option for you. Keep us posted on how you are doing...

Hugs

Debbie

[ali12]

Thank you both ever so much for replying - I really appreciate it.

Jenno - I am so very happy that your daughter had success from the HBO - I have heard that it can be really good. The beginning of this year, my mom took me to an HBO centre near where we live to see if they recommended HBO for RSD and they said that they had a few RSD patients on their books and that the HBO was helping them to varying degrees. If I remember correctly, I think 1 was almost pain-free, 2 were better than they were and another one wasn't getting any results. The Doctors at the HBO centre told us not to get our hopes set too high but in most cases, the RSD responds well to HBO after so long. We agreed to give the HBO a shot and I was all due to start the HBO and then I had an ingrown toenail removed which caused me to develop really bad muscle spasms and my PM Doctor decided that the HBO probably wouldn't help with the spasms and Dystonia and decided to try medications even though I was very reluctant. Thinking back, we should have tried the HBO then and there but my Doctor kept saying that the meds would help with the spasms better than the HBO but they didn't and then I was sent onto the intense Physical Therapy program.

Me and my mom are going to be looking into the HBO again as I am a bit reluctant at the moment to have my leg casted. To me, the HBO sounds like a much safer option.

Send your daughter my best wishes and thanks once again for replying! Alison

Debbie - Thank you so much for replying. I wish you the very best of luck with the HBO and am keeping my fingers crossed that you get some much needed relief. You will be in my thoughts and please keep us all updated when you can! Love, Alison

[GalenaFaolan]

I don't know if this will help much, I've had no first hand experience with casting and all, but I've seen quite a few people over the last 5 and a half years I've had rsd get their leg casted to try and straighten the foot out. It didn't work. As soon as the cast came off it went right back to the position it had been in. A few have even had surgery and needless to say that didn't do a darn thing to fix it either. The only thing it had done was set them back a bit because they were unable to move the ankle for awhile.

I don't know if you've seen RSDHope Keith's blog about his hbot journey. I think you'd find it very interesting. Here's the link: http://painisafourletterword.blogspo...2_archive.html

I set it to the first 2 posts for you.

Hugs,

Karen

[miss irie]

Hi, Ali.

I wish things had gone better. I understand your fear about the upcoming casting treatment but I had to respond and let you know that I've been through it. I had undergone 2 knee manipulations and the last one included casting for 10 days. Ali, this was the best thing that could have happened for me. I had physio afterwards in the pool and with time was finally able to use my leg properly -- it bends and straightens without and of the former problems. I wish you the best of luck.

[maryc]

Hello
I am sorry you werent so succesful this time at that program. i saw this message and wanted only to tell you this. i had dystonia of the foot, it was locked. rigid. would not move even a little. tried physical therapy. lots of exercises. manipulations. nothing working for me. then foot was casted as a last resort even though imobilising bad for rsd it was decided that the potential benefits would outweigh the risks and after i wore a cast just at night for while. and lots of physical therapy for the foot afterwards too. like the person above it was the best thing that ever happened to me. now foot is straight. i am so happy, this has made such a diference. i wanted to share with you this. i hope you do decide to go ahead with it and that it is a sucess like it was for me.

[ali12]

Thank you all so much for replying to my post - I really appreciate it. I'm sorry that I haven't been around much lately, I have just had so much going on and haven't been feeling too good but I hope to post more soon!!

Miss Irie - Thank you for replying - I can't tell you how happy I am that the casting and Physio helped you - you have brung me some hope that the Dystonia in my foot can get better. I am hoping to try and see my PM Doctor on Thursday to see what his opinion on the cast is. Thank you for replying and sharing your experience with me - I truly appreciate it and thank you for giving me hope. Love, Alison

MaryC - Thank you for replying and sharing your experience with the casting with me - I really apreciate it. I am so happy that the cast helped you so much - it really does bring me hope so thank you! Take care and Welcome to Neurotalk, Alison