Orthopaedic/PT Appointment
 

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!!!:hug:

Hey Ali,

Do they offer Lidocaine or Ketamine infusions in the UK? Or in a country nearby? By any chance are those treatments covered by your country's insurance?

Take care, Sandy

I agree with the docs and such on the botox issue. Reading what you have written for so long now, I fear because of your past experiences that going through with it could possibly mean your life. I'll add my 2 cents in saying, asking, please put the idea aside and don't even consider it. It really isn't worth it when the reaction could turn out to be much worse than just a flare or dystonia.

I'm happy to hear the arm isn't broken! At least you don't have to deal with that on top of it all. :-) Did you save the links I put in your other thread about it? Print them out for the doc.

That's terrific you got to see another part of England you've never seen. Sounds like it was a fun trip for you and the family.

Hugs,

Karen

Thank you for keeping us updated,Ali. You have been on my mind and in my meditation prayers everyday.
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:hug:,Dew

I know you were thinking of this aka why I told you about that lady but have heard very mixed things on this and I think it is good your doctors are not rushing into this. I hope they come up with a plan though. I am sorry as I have not followed your condition though I do know how bad it is but anyhow have you thought of other treatments like scs etc or that is not for you. I think I told you about this girl who is 17 so young anyhow she was in a wheelchair,unable to eat,out of school from the pain where her mom home schooled her. She went under every type of treatment and still was like this with some ups and downs of course of better times. Anyhow now she has a scs and she is back in school and out of the wheel chair etc. I am not saying this is for you but that things can get better but it is true about the long process of right treatment and trust me as I am making these choices about what is right and what is wrong for you. Hang in there

Thank you all for the support - I really appreciate it!:hug:

SandyRI - I am currently on Oral Ketamine for the pain. It used to bring my pain from an 8 out of 10 on the pain scale to around a 6 but we are now finding that since I have been in the flare, it isn't helping as much. My PM Doctor told me to increase the dose and take it 3 times a day but that still doesn't seem to help that much. I think we need to speak to him more and ask if he can increase the dose any more if things don't start improving. They don't do Ketamine infusions over here in the UK as they haven't been approved unfortunately. I really wish that they were so that I could speak to my doctor about them and see if he thinks they would work - especially seeing as the Oral Ketamine helps a little. I think we would have to go to the USA for the Ketamine infusions as no where else seems to do them either. Thank you for the support and advice!

Karen - Thank you for the input. I honestly don't know what to do about the Botox, it is such a hard decision. My PT's seem to think that it is worth the risk now seeing as though nothing else has helped with the Dystonia at all but it is so difficult trying to find someone to do it and i'm not sure if I am prepared to take the risk. We need to do something to try and get the dystonia under control as it is getting worse and worse but I just wish there were other options available. My PT's said that the Botox is the only route available really other than casting my leg. I was supposed to go onto the Intense PT Program yesterday again and they were going to cast my leg but didn't go as I feared that it would make things worse. I am working with a Neuro PT now who deals with Dystonia so i'm hoping that she will be able to come up with something to help. I also see my Neuro on the 5th May (a week today?) so am going to speak to him and see what he thinks we should do. Thanks again for your advice!

Dew - Thank you for the mediation prayers for me - they are much appreciated! :hug:

Daniella - Thank you for the advice and for putting me in touch with the lady that had the Botox, I greatly appreciate it! I honestly don't know what to do about the Botox like I have previously said. I have read soo many research articles saying that it really helps in some people but when a doctor thinks it will make things worse, it's hard to know what to do. I certainly don't want things to get any worse! I guess it's one of those things where everyone reacts differently. I'm glad my PTs aren't rushing things and are being sensible and speaking to others about what to do. We have looked into the SCS with my PM Doctor but the UK NHS service wont do it until I am at least 16 as it isn't approved over here for children. My Doctor also thinks that it could make the RSD spread because my body can't tolerate needles and injections really. Thanks again!

Thanks again everyone for your help and support - it is much appreciated and I will keep you all updated!!!:hug:

In Belgium they tend to first use Calcitonin injections (typically first stage RSD) and for later stage RSD they tend to use Bisphosphonates. This is the non pain specialist route, though. Pain specialists will give medications a go and later will start talking about nerve blocks, they sort of go the US route.

Maybe you could research it, and ask your doctors about it. I don't know whether they are familiar with these types of treatment; in the US it's not often talked about, if at all.