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