NeuroTalk Support Groups - PT Making Things Worse?

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - PT Making Things Worse? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/67702-pt-worse.html)

Quote:

Originally Posted by frogga (Post 436167)

Hi Ali

for me, at first PT made me alot better and then as my RSD progressed it made me alot worse. In the end mum and I did our own exercise programs at home and would just see a private physio every couple of months. Have you considered botox? also, instead of casting why don't they put a boot on you? then if it really flares the RSD up then you can always have it taken off again. I've had botox in my ankles and feet to try and correct them about 4 years ago and had it done under general anaesthetic. Whilst I was under they also casted both my legs into the "walking boots". They also tried serial casting on my legs to straighten them. Neither of them was successful but my legs had been twisted for years and nobody had done anything to them at all (and I've been non weight bearing for 7 years or so which has worsened the deformities). You could always ask for entonox whilst they are casting you if you are not having a general anaesthetic..? I find it helped with the pain of casting. I know some RSDers who have serial casting who wear split casts which are held on by bandages as apparently this is less risky to flare the RSD (?). Have you been seen by orthotics?

i'm so sorry to hear about your grandad :hug::hug:

I'm really glad you're walking - how's getting back to school? how far can you walk now?

With physio... I think it's important to have some input even if they aren't doing any major work on your RSD arm and leg but work on strengthening your non RSD side and your core muscles.

Ok.. can't do any more but sending you loads of love and hugs and keep in touch

love

rosie xxxxxxxxx

Hi Rosie,

It is so good to hear from you and thank you soo much for taking the time and effort to read my thread and to reply - I really appreciate it!:hug:

It seems like lots of people have said that Physio works really well for them in the early-stages of RSD but after time, it stops working and I think that is the case for me. I just feel that I am doing better without the Physio and I am still trying to weight-bear through my leg and that is what I was told was the most important thing to do. My Physio's are forever telling me that if I don't have Physio, I don't stand any chance of getting better though ... whether that is true or not, I honestly don't know cos I know everyone is different and no two cases are the same!! The Physio's claim to know about RSD although they have admitted that they have never treated a case with other things happened like in mine (the Dystonia, Myoclonus, Athritis and Fibro etc) so I think that sometimes, they don't know what to do and do some exercises in hope that it will make things better without actually realising that it could potentially make me worse. I see my Physio's again at the end of January so will speak to them then and see what they say and what they think we should do.

Thank you so much for the info regarding the splinting and casting, I really appreciate it!:hug: The thought of having my leg put into a cast really scares me as I have had my leg casted in the early stages of RSD and it made the Dystonia and spasms worse and I have read so many stories on the internet about casting making RSD worse also. The Physio's at Great Ormond Street said that I have no other option but to have my leg casted however the Physio's at my local children's hospital (Sheffield) said that they shouldn't really be doing the casting as it could make me worse and potentially take me off my feet.

About 3 months ago, I went into hospital and the Physio's and Pain Management Doctor put me under General Anaesthetic and they casted my leg and then took the cast straight off and made a mould of a splint to the shape of my foot that I could remove as and when I needed to. It was hoped that over time, I would be able to wear the splint and it would hopefully try and correct the rotation in my foot but the Orthotics Doctor made the splint wrong so the Physio's decided that it wasn't suitable and that it was best not to try it and we were told just to leave it and not attempt to try and get my foot into it. After speaking to the Physio's at the local children's hospital about our concerns regarding the cast, they said that they wouldn't advice us to have it done and suggested them making me a cast but that could me seperated into 2 pieces so that it was easy to remove if I ever needed to. I'm going to speak to them about that again and see what they say and if that is the way forward. I just don't want to have my leg casted as it scares me soo much!!

Botox was suggested by the Doctors at GOSH but my Pain Management Doctor said that because the nerve block made me worse and made me lose all co-ordination over my RSD leg, the Botox probably wouldn't work that much either and could potentially make me worse so he said that he wouldn't advice it. He did say however that if I ever wanted to give it a try, he would write me a script and make me a referal to an Orthopaedic Doctor that specialises in it so it is something worth considering.

Thank you so much for all of your help and advice, I really appreciate it and I will definitely keep you updated!:hug:

Ali, I just wanted to give you a big HUGGGGGGGGGGG
I cant imagine what you are going thru at such a young age...hugss and love,sarah

Just a couple of quick things..

firstly.. the air casts/ walking boot - might be worth a try.. they do one which is just ankle length and they have air in them which can be adjusted for amount of support etc (like because my feet twist inwards and under they put much more air into the inside air pockets than the outside ones to put pressure on my feet to straighten out)..

This is a company I have used several times when I have needed orthotics and have given up on the NHS supploying me with something appropriate and something that I don't have to wait 8 years for!! LOL
http://www.chaneco.co.uk/products_ca...+Relieving+AFO

They have some interesting things that I thought might be able to work.. at one point we considered some splints which had elastic to pull rotated ankles back into straight (normal)

just a thought

tons of love as ever and keep going .. the most important thing to do is stay on your feet.

ro xxxxxxxxx

Quote:

Originally Posted by ali12 (Post 436175)

Thank you all so much for the help and advice and kind words, it is much appreciated!!:hug:

Rosie - Thank you ever so much for the link to the website that sells Orthotic items and splints, I will have my mum check that out!:hug: The Air Splints sound really good - one of those was suggested in the early stages of my RSD by a Doctor in A&E but they didn't give us a script for one - they just told us to go to a sports store and they would have some but they didn't have any and when we asked about one, they said that they didn't sell them! The splint that you have sounds really good - that is exactly what my Physio's wanted, a splint that would have more straps, air or something at one side to try and force my leg back into a normal position instead of being rotated out to the side! I shall check out the website with my mum and also mention it to my Physio's when I see them and see what they say.

Thank you all for your help, I truly appreciate it!:hug:

I didn't want to mention this before because therapy does help some people.

My hand gets furious with even subtle therapy or examination. Many insults aren't "felt" for a day or two.