Hi everyone,

I just wondered whether any of you have tried Botox to try and help with Dystonia's (movement disorders) in RSD.

I had an appointment today with my Physical Therapist's and they basically said that the Dystonia in my foot was a lot worse than what it was before Christmas and that they needed to do something about it. I have been having PT for 2 years now and it hasn't impacted on the Dystonia what so ever.

The PT's gave me and my mum 3 options. One is that I have the leg casted for a long period of time to see if that would help, another is to try electrical stimulation to try and stimulate the muscles or Botox to "freeze" the muscle that is working overtime. All of the above options carry risks and I don't really know what to do. I had a nerve block done when I was first diagnosed with RSD and it made me SO much worse (I was left wheelchair bound for 13 long months) so am afraid that the above could make things worse.

I see my PT's again next Wednesday and they are going to discuss my case in the Pain Management Meeting. The PT's are also making an appointment for me to see a Neuro PT as hopefully they should have some more ideas.

It has also been confirmed that the pain in my shoulder is probably RSD - the PT's didn't say it in so many words but said it was a pain response so I guess that is very similar to RSD, although I would have to see my PM Doctor to diagnose it.

If any of you have tried Botox or casting for Dystonia's in RSD, please let me know as we could really do with some input!

Thanks ever so much and i'll keep you all updated!!

I use botox for dystonia in my right shoulder. I have RSD and when I started having difficulty moving my shoulder it was thought it was due to the RSD and rotator cuff problems. When physical therapy made it worse, the more I tried to do, the less I could do, my doc realized it was dystonia. The botox is wonderful! My "frozen shoulder" had complete range of motion within 24 hours after administration. The only side effects that I have had is bruising after administration, but I am also on Plavix.

It's odd to think that you paralyze the muscles to be able to use them more, but it works! Also, it removes A LOT of pain. Mine last for about 4 or 5 months. Hope this helps.

Brandy

Hi Ali, How are you I just read your 2 year anniversary. What a trooper you are. You are amazing! I am going for botox treatment on Thursday 26th. Long thought out and mostly positive feedback about it. My hand and arm go into spasm so fiercely I can't straighten using the force of my good hand. The pain makes me drop to my knees no warning just sudden, violent. The Dr. said if we don't do this it could stay in that dreadful position permanently. Much worse bring out the other RSD we have been able to quiet. I will let you know how it goes. Brandy penn is one of the opinions that helped me to decide. My PM doc said It is not widely used but when it is used it can have remarkable results. I hope this helps you. Take Care. You are a most beautiful young person!

Debbie

Ali

I have had RSD since 2001, when I broke my right foot. In 2004, I was injured during a physical therapy evaluation, and it became very active in my left shoulder. One of the symptoms was, I had the worst problems with searing electrical shocks in my upper back and shoulder and arm. They would just double me over. After a few months, my shoulder was almost all the way frozen from muscle spasm. PT did nothing but push me to hard and make it much worse, as they didn't know the best way to work with RSD... I was their first RSD case.

My PM suggested going to a Neuro for botox.

Unfortunately, my PM went out of the PM business a couple years ago, and back to just anesthesia, so I don't have a PM, but now I see the neuro for some of my RSD care. He's a good guy, and well known Neuro, so that is good. He tells me that there is a new type of botox out there, and has asked me to consider trying it again. HUGE decision for me.

My experience last time was not the best, but it did help me.

The first round was done with EMG guidance - and that may have been what I had a reaction to. I had a regular EMG done on my foot and leg in 2002, and it made me so much worse, and I was worse for a month after it. For a week after, I could barely walk. So keep that in mind. The Neuro says that "could not" have been what caused the reaction, but I wonder. I had an entire vial of botox injected in and around my left shoulder, arm, neck, upper left back. It was bad getting the injections, but not much worse than trigger point injections. I am not one of those people who can't stand needles.. thank goodness! Within an hour, I was in the worst pain of my life. It got worse over the next week. I lost all strength in my hand and arm. I could not hold an empty soda can in my hand. It was horrible for about a month, then got better bit by bit. Somewhere during the 5-6th week, the botox sort of let go, and my arm loosened up. It had been very stiff since the injections - hardly able to move it at all. I was so scared that I had made it much worse. When it "let go" I was able to move my arm more than I had been able to in months. With some additional PT (this time at Cleveland Clinic where I learned the right way to do PT with RSD) I gained more range of motion and strength. Its been the same for the last 3 years or so now, though. I probably have about 30% range of motion and about 50% strength of my other arm.

The Neuro said he had never had anyone react this way.

The thing is... the electric shock pains did stop after a while - I don't remember now if it was right away or within a couple weeks - but they just abruptly stopped. I remember them as being the absolutely worst thing about the RSD. The botox had to be the reason they stopped.

I have talked to the Neuro about botox again over the years... and he's been unwilling to do it. He is considered the expert in botox in my area - so I went by what he said. I will say, out of all the things I have tried over all the years -- botox was the one thing that has really made an actual long term difference. Stopping PT at places that didn't know what they were doing made a difference - but it didn't help, it just stopped making me worse.

So, now the Neuro brings it up to me again. I am scared - it was SO painful for me last time. But, if I could gain more use of my arm - which might allow me to do more PT (I do my own here at home, I have learned all the exercises) and more range of motion exercises, get more strength in it.... It could be worth 6 weeks of pain.

My problem is that I am so scared that the RSD will get so riled up, that the increased level of pain won't ever go away. The amount I live in day to day can't be touched by any pain med I have tried - I don't want to live in any more pain.

My Neuro says he has seen people's "claw hands" that have been in a claw for years be opened up by a single treatment of botox. You can tell he believes in it. He said it's an amazing feeling to give people back the use of a hand, or free up a muscle with the botox. He is one of my favorite doctors that I have seen.

I don't know what to tell you Ali--- But, I think I am going to go for it. I will probably do it right before my scheduled week off the end of May, though, so I can spend a week in bed if I want, instead of going to work. Last time, I cried so much, it was embarrassing. This way, if I do need to go back on pain meds, which I don't take now, I would have a week to get ramped up without needing to drive. They didn't help much last time, but over all, I tolerate my pain better now, so they may help this time.

Remember, my reaction was not normal... and I am still thinking of doing it - it helped that much.

You hang in there.

Jules

Thank you all so much for your replies - I really appreciate it and it has given us some hope that the Botox, should we try it can work and relieve some of the pain and spasms from the Dystonia!

I still honestly don't know what to do really. It is SO hard trying to make my mind up on what to do as it is always in the back of my mind that the Botox could make me worse - I think what's making it worse is the fact that I had such a severe reaction to the nerve block. It has given me hope though after reading all of your posts that things could get better - I know it's different for everyone but it's always nice to read positive stories for a change and to get other peoples feedback!!

I see my PTs on Wednesday so am hoping that by then, they will have some answers. I should also be seeing a Neuro PT then so hope she will be able to help me and have some ideas as to what to do. I think it's getting to the point now where we need to try something more agressive ... I have been having PT for 2 years now and it hasn't impacted on the Dystonia whatsoever and I just want a few days to be "normal" and do all of the things that I want to do!!

Info Hungry - Good Luck with the Botox today!!! I really hope it helps you and that you get some much-needed relief! You are in my thoughts and please let me know how you get on when you feel up to it!!

Brandy - I am SO glad to hear that you have gotten some positive results from the Botox! That is great and it gives me some hope that things can get better! Thank you for posting and letting me know - it is much appreciated!!

Jules - I'm sorry that you had so much pain from the botox but am SO glad to hear that it helped you! I wish you the best of luck if you decide to try the Botox again and hope you get even more relief! Please keep us updated and you are in my thoughts!!

Thanks again everyone and I will keep you all updated as to how my appts next week go!

Alison.

PS: For those of you that have had Botox, did you have it done under local or general anaesthetic?? I know it might be different with me being a child but just wondered how they did it for you? Thanks!

Hi everyone,

Ali today I had Botox. It was not as bad as I thought it could be. They used a baby sized needle. He injected into many muscles on L hand and arm. 13 or more (lost count) spots but only about 3 areas were quite painful while injecting. He told me I would not see results for 1.5 to 2 weeks. At that time I am supposed to call him to let him know my progress. He also informed me that I would have weakness in my left arm temporarily and strength would return as the botox wears off. I have a follow up end of April if needed. The injections hurt no where near as much as my RSD symptoms that I have had in the past. Nor the dystonia/spasm pain. I hope it works because the dystonia is my worst remaining symptom and hoping it will clear it up. Everyone is different we all know that first hand. I did ask him if botox would cure the Dystonia he said its the best shot (no pun) I have. I have now been released in 2 weeks to work as much as I can tolerate but he told me to be careful because of the nature of my work. I wanted to put all this down for you while fresh in my mind.

My hand/arm does feel sore like bruised. But nothing unbearable. Take care

DebbieXX

Thank you all for your feedback - I really appreciate it!!

I had a Physical Therapy appointment today. The PT's arranged for me to see the Neuro PT and she is really nice. She examined my leg and said that I have a pretty bad case of fixed Dystonia and that there are lots of muscles in my foot that are spasming - not just one like we originally thought!!! It took the PT's half an hour just to get my leg to move a tiny bit!!

We didn't really get that many answers today. The PT's were both throwing ideas to eachother as to what might help and what wont. They suggested trying a splint with more pressure on one side to try and move my leg back into position but they didn't think that would help. They also mentioned castin my leg for a long time but said that they thought that would just make me worse as it would up my pain a lot and put me at risk of muscle damage and lesions (my skin is VERY thin so I break out in lesions pretty easily on my RSD legs).

The PT's mentioned Botox and I really think that is the route they will go down. My mum asked if the botox could potentially make me worse because both nerve blocks did and they said that they honestly didn't know but that it is really important that they do it correctly and that they dont hit a wrong muscle as it could just make me worse and I could end up with some pretty severe complications. They explained that it isn't a decision to take carefully and that we need to do a lot of thinking into it before we decide to go ahead with the procedure. They have only performed botox on upper body RSD dystonia's so they dont really know how I will react etc.

The PT's are going to talk to my Pain Management Doctor and we should hopefully have an answer when we go next as to whether they are going to try it or not. The PT's said that if they try the botox, they will probably admit me for 2 weeks to try and do lots of PT with me and that I would probably also need a Ketamine infusion as it will probably make my pain worse in the short term.

They also want me to try and get to PT more often so that they can try and do more work with me. It's really hard as my mums boss is being funny with her about time off so they are going to try and arrange for a medi-car for me and that way, my nanan can take me so my mum doesn't have to go all the time. They also suggested me getting PT at my GP's office but said that they would have to be real careful as its extremeley important that they know about RSD so that they dont create any more damage.

Debbie - I'm SO glad to hear that the Botox went well for you!! How are you doing now??? I really hope that you are getting some relief from the spasms and you are in my thoughts! Thanks for writing and letting me know how you got on!!!

Thanks again everyone and I will let you all know when we find anything else out!!

I hope you got the PM I sent you yesterday about the lady on Oprah. She showed a lot of improvement with the botox. I hope it does the same for you.

Ada

Ali--- just in caase you didn't see it, I bumped up a post for you few a few days ago another post about botox and dystonia/RSD that was orginally posted a few weeks ago.....

And just to re iterate what I mentioned on that post, if you do decide on Botox (I've had it 3x with decent sucess ) , make sure you get a Neurologist or PM who has some experience in performing Botox. In addition to CRPS, I also have Sensory Processing Disorder (and one of my huge SPD areas is tactile defensiveness), allodynia, epilepsy and a few other issues, thanks to good neurologist I was able to handle the Botox process fine (no anesthesia is usually given...painful during the procedure ? yes ... tolerable ? yes and side effects subside within a few days)

Good Luck in whatever you decide !

L2L

Hi. Do you have facebook Ali? I ask because I have been chatting with this lady who started botox for this and is finding relief and maybe you could chat with her. I thought she posts on here but I could be getting people mixed up. If not and you want to email me or pm me I can give it to her and ask her to tell you her experience. She is really kind and helpful to me. I know it is a hard choice when we are all different in how we respond. Hang in there