First of all let me say a huge thank you to everyone that replied to my last post about the second anniversary of developing RSD!!! It means a lot when I recieve posts from others and I am SO lucky to have you all as my friends!! Thank you for taking the time out to read my blog - I truly appreciate it!!!
Last week, I had an appointment with my Physiotherapists. I hadn't seen them for a while due to my grandad passing away, Christmas break, school and mums work etc so it was nice to catch up with them!!!
I asked the Physio's to look at my left arm as I have been having quite a lot of pain in it and it goes red a lot sometimes and is very tender in some areas. The Physio's asked me to change so that they could examine my arm and they asked what I did. I told them that I fell on some ice going out to the taxi and knocked my arm. They got me to do lots of movements and said that there didn't appear to be any fractures there and that they suspect that it is a spread of the RSD. They didn't so it in so many words but said that it was a 'Pain Response' and that I need to see my Pain Management Doctor to diagnose and treat it.
I'm so upset that I might be dealing with another spread as that is the last thing I need right now!!!! Hopefully, we will be able to "manage" it though and if it is caught soon enough, it will go into some form of remission. I have been given some exercises to do and I try and do them on a daily basis - they are really painful but I know that it is either use it or lose it and I don't want to risk things getting any worse!!!!
After the Physio's examined my arm and shoulder, they went and checked my foot out. I have pretty bad Dystonia in my leg as well as the RSD and the first thing the physio said when she saw my leg was, "It looks worse than when I last saw you"!!
My Physio examined my leg and tried her darn hardest to move it but it wouldn't move even a tiny bit!!!!! It took them half an hour and a lot of strength to get my leg to move a little bit!!! The Physio said that they need to try and re-think their options now as it is obvious that Physio alone isn't helping in my case. I have been having weekly Physio (and sometimes more than that) for 2 years now and it hasn't helped with the Dystonia at all.
The options that the Physio's gave us was to try either Botox, Electrical Stimulation to try and stimulate to muscles into working or casting my leg. The casting has alreaady been mentioned and I wasn't very happy about that at all as I have read so many horror stories and know that you should neve cast an RSD limb anyhow.
The Physio's told us to go home but that they wanted to see me a week later (this week) and that they were going to arrange for me to try and see a Neuro Physio if at all possible as they should have some more ideas as to what might help and what wont.
I went to Physio again yesterday and we met up with the Neuro Physio. She is really nice and friendly and my Physio's told them what they had been working on and how I was responding etc. The Neuro Physio examined my leg and said that I have a pretty severe case of fixed Dystonia and she agreed that they needed to seek other options.
It took the Neuro Physio over 30 minutes to move my leg yesterday so it was pretty obvious that things just aren't getting any better. The Neuro seems to think that I have a 'fatigue' in my muscles and that you basically have to try and tier them out before you can even try and do anything with them.
The Physio's were discussing things whilst we were there and the neuro physio suggested trying a splint with more pressure applied at one side to see if that would try and get my leg back into the correct position. After discussing my case though, they decided that they didn't think it would work as the spasms in my leg are just too strong. They also mentioned casting my leg but thought that would be a bad idea because of the risk of even more muscle wasting and lesions etc - I was pretty relieved that they didn't want to try that as I don't think it is something I would be willing to try really.
The last option available was to try Botox and I think that is probably the route they will decide to go down if anything. The Neuro Physio was really nice and explained how Botox worked so that we were as informed as possible. My mum asked if the botox could make me worse as both of the nerve blocks I have had done did (the first one put me in a wheelchair for 13 months and the second caused really bad myoclonic spasms) and she said that she honestly didn't know but that they would have to be real careful as if they hit the wrong nerve, it could cause more harm than good and that it isn't a decision to take lightly really.
The Physio's are going to discuss the Botox with my Pain Management Doctor and we should hopefully have an answer for when we go to physio again (the end of April). The Physio's said that the Botox would probably make my pain worse in the short term so if they were going to try it, they would suggest doing an epidural or something to try and put any pain flares to an halt.
They also suggested that if we chose to go ahead with the Botox, it would be really useful if I was admitted into hospital a week after I had the procedure done so that they could do some intense physiotherapy with me to try and give me the best chance of regaining any function in my foot. I thought it was a good idea and so did my mum - I would also be allowed home should I wish on a night so at least I wouldn't have to sleep in the hospital.
So now, we are playing the waiting game!!! I really wish that the Physio's could have given us an answer yesterday as to what they were going to do but I know they need to discuss it with my doctor first and give us time to research it at home ourselves. The NHS wont do any procedures also without getting confirmation from all of the doctors involved so I think that is making things a bit more difficult also. Hopefully when we go next, we will have some answers!!!! The Physios also want me to try and go to Physio more often so are going to try and arrange a medicar for me so that my mum doesn't have to go all the time and my nanan could come with me (I think that would probably be helpful as she still doesn't understand RSD!!). They also suggested trying to get Physio at my GPs office but said that we would have to be careful and make sure the Physio knew about RSD and what he/she was doing!!
In more positive news!!: I have started going back to mainstream school on a Friday now. I come home for dinner as the teachers thought it would be too hard on me to stand for such a long period of time. It's hard at times but I seem to be coping OK and my friends seem to be a little better than they were last time - I think the teachers must have had a word with them about that and told them that we weren't happy!!!
Me and my mum are also going to see Dancing on Ice today at an arena near where we live. Dancing on Ice is a TV Program where they take celebs and try and get them to dance on ice like professions but they are doing a tour also!! We have been to see them before and they were really good so i'm looking forward to seeing it again!!
Thanks for reading my blog and I will keep you all updated when I hear anything else from my Physio's!!!!!
Tailing Trout at Little Pine Lagoon this morning.
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Only a light northerly blowing as I fished Tailers Shore.
Trout were tailing but illusive. Two other anglers landed fish, one a good
21/2lb. The rest of us...
11 years ago
6 comments:
This post is full of so much hope and 'happy hormone' stuff. Despite the fact you have to wait for an answer, the physio's are clearly thinking deeply whether whatever they try will have benefits outweighing any possible complications.
My fingers are double crossed for you that you will get an answer and the treatment soon, so you dont have to wait and wait too long and start feeling anxious about it.
Starting back at mainstream school is such a great step for you, I'm so proud of you for trying again despite the last time. You are such a fighter and I'm truly proud to be able to call you my friend.
Enjoy the ice show (sorry forgot to put that in my email), I love skating (used to be one myself) and wish I was there so I could come with you!
Take care always sweetie!
If you remember I had tried an electric stimulator called and Alpha-Stim. There are all different "brands", but that is probably the first thing I would try out of the three (it seems the easiest), for some it does wonders, for others it doesn't help.
I'm glad that you have started back at your school! I remember this was a goal you were trying to accomplish, and believe me I know its hard.
I hope you enjoyed the ice show!
Hi Lauren,
I looked into the Alpha-Stim but it isn't used for RSD Dystonia's so I dont think we will be trying that. My PT's didn't seem to think that it would work as they said that the spasms in my leg are way too strong.
I think if anything, they will try Botox as that is what seems to have more positive results and they think that I need some more 'surgical intervention' now.
We should find something out when I go on the 21st April hopefully!!
Hi-
My name is Rosemary and I have had RSD for a couple mounths now (well offically, but have been having foot/ankle problems for 2 years).
I found your blog a couple days and have really enjoyed reading it...
if you ever get a chance and want to read the blog that I started writing a couple mounths ago it is
http://justpluggingalong.blogspot.com/
good luck with everything
-Rosemary
Hey, good thing I came back - looks like my comment got 'eaten' or something... :(
It sounds like a lot is going on for you, but like Alessea said, it sounds like there are some very hopeful parts in there, so I'm very pleased for you!
Good for you for giving your old school another shot! You're a brave, strong young woman and I know you can do whatever you set your mind to! AND those jerks need some serious education and manners, plain and simple!
I'll look forward to updates and I hope you had tons of fun at the show!
hugs!
going back to school, well done!!!!
sorry to hear about the extra pain and difficult physio, you keep that clever mind and positive attitude focused and I know that you will get through it xoxo
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