Hi everyone,
Just wanted to update you all on how my Orthopaedic and Physical Therapy Appointment went on Tuesday. So sorry it has taken me so long to update you all - things have been so hectic here lately as I have had 2 meetings at college spaced out over 2 days (which I will write about in a bit) and have been away for the weekend visiting my grandad and his wife.
The Physical Therapy appointment on Wednesday was OK although it was extremely painful for me. My PT's are now working with a Neuro PT to try and get my Dystonia under control and look at new approaches etc. In October, I had a splint made for my leg to try and get my foot to go into the normal position instead of being rotated out to the side. The PTs wanted to put my leg into the cast and it was really painful and took ages. They literally had to bandage my leg and hold it with both their hands to get my foot into position but then the knee started rotating. The PT's said that I have lots of muscles that are working and creating the Dystonia, not just the 2 that was originally thought.
The PT's want me to try Botox as a last resort so my Pain Management Doctor has been speaking to other doctors in the UK to see what their opinion is. All of them have said that it isn't worth the risk because of my past medical history. It is felt that as I had awful reactions to the nerve blocks (one put me in a wheelchair for 13 months and the other caused severe, myoclonic spasms), the botox would react in a similar way. My PM Dr said that he agrees with the PT's that we need to start looking at other options and is going to speak to other drs to see what they suggest. I really don't know what to do as most doctors wont take the risk of doing the botox and feel that it isn't worth the risk but my leg has been like this for over 2 years now and we need to do something else. I spoke to my grandad this weekend about it and he practically begged me not to try it as he has spoken to a nurse friend of theirs and she too feels that it isn't worth the risk and will only make me worse. The nurse told my grandad that because of my past experience, it isn't worth it and when my grandad told her about the reactions I had to the nerve block, she said that she hasn't heard of anyone that one has worked for - yes, I didn't agree with that as I know that they work for some people.
I really don't know what to do about the Botox route. No doctors are willing to take the risk although my PM Dr is going to speak to some other dr's to see what they think. I have an appointment on the 5th May with my Neurologist so hopefully we will be able to discuss things further with him then. My PT's want me to have weekly PT now as they are hoping to try and do more one on one work with me and it is hoped that the neuro PT will be able to come up with some different alternatives as to what will help and what wont.
After my PT appointment, I had an appointment with the Orthopaedic Dr about my arm and a suspected fracture/RSD flare up. The dr re-xrayed my arm and took a good look at the results and said that there was no fracture there!!! I was in total shock as I honestly thought that it was broken and so did everyone else because it looked so bad. The Dr said that the xray showed that my tissues were really swollen but she thinks that is just from the RSD.
When I heard that my arm wasn't broken, I didn't know whether to be happy or upset. I was happy that it wasn't broken but also really upset as I knew it was the RSD again. At least with a fracture, the break would be healed within 4-6 weeks and better, with RSD there are no guarantees unfortunately.
My Doctor explained that this is the worse RSD flare up he has ever seen. He has never seen bruising in RSD before but the Orthopaedic Dr explained that my nerves are telling my blood vessels to dilate and allow blood to go out into my arm ... a bit like minor internal bleeding I suppose.
I'm a bit confused as to how the first x-ray showed 3 suspected fractures and the second one didn't but the Dr did show us the x-ray and there didn't appear to be any lines where as there was before. My arm is still REALLY painful and bruised but the swelling is going down now - i'm just hoping that the pain will go away soon as it's really hard tlo type and affects my school work a lot. I'm having to take more Ketamine to try and combat flares and lower the pain as it is so high lately.
I don't have to see the Orthopaedic Dr again now thankfully unless I have any other injuries. She said that I am best seeing my PM Dr and PT's as they are more experienced in dealing with RSD. I have to rest my arm for a bit but also move it as much as possible to try and get rid of the swelling and also do some gentle exercises that I have been given. I'm just hoping that things will start improving soon - I guess i'm in a bit of denial at the moment as I don't want it to be RSD in my arm and want it to go away real soon even though I know that isn't the case unfortunately.
In a more positive note, we have been away for the weekend! We went down to the South of England to see my grandad and his wife. They live in Spain and we only usually see them twice a year at the most so it was nice to spend some time with them. I have never been to the south of England before but they have lots of cute little craft shops and lovely scenery with cattle etc. We went to a zoo yesterday called Monkey World and it was really good and had all types of monkies. It was nice as my grandad recognised when I needed to rest so I didn't feel pressured into having to carry on further. I'm paying for the trip now and am extremly tired but it was worth it to spend some time with my grandad!!!!
Thank you all again for the support - it is much appreciated and I will keep you all updated!!!
