Here's a short little article from the NIH about muscle dystonia and scoliosis:
http://www.ncbi.nlm.nih.gov/pubmed/12654970
The reason I'm posting here is because I was diagnosed with cervical muscle dystonia yesterday. There is a Dystonia Medical Research Foundation that I haven't checked out, yet. According to this small study cited above, people with scoliosis are more succeptible to having it. I feel like I'm finally getting somewhere. It seems that in us scolis, the fix for the dystonia can be fixing the scoliosis. I tried continuing this discussion on my own thread, "I have some imaging CD's", but because the topics seem to change on personal threads, no one has responded to the topic of dystonia.
It seems interesting, though, that I have had tics in my left shoulder/neck/head for quite a while now (I even have them in my hands which affects my fine motor coordination). I never mentioned it to the doctor because they are very mild and not very bothersome when compared to the bigger issues that I face. After looking up dystonia, as instructed to do by my physician, I found out that these tics are related to the dystonia. So now, I'll have to mention them. This is where most of my pain is coming from, also (not the tics but the SEVERE muscle spasms caused by the dystonia).
The "treatments", there is no cure, are Botox injections, deep brain stimulation, and nerve severing. I've wanted to try Botox all along, as Jrnyc has had such success with it. Well, it seems I'm going to get to try the Botox injections after all. This will decrease my exposure to steroids (we all know what happened to Jrnyc from chronic steroid use). Botox can cause flulike symptoms in some people and I stand the risk of not being able to lift my left arm until it wears off, a risk I'm willing to take.
I thought someone in the Research Section may know more about this disease than me. The only two ways to come down with this disease that I have found so far are: #1) inheritance, and #2) injury. I don't quite know where I would fit in there. I'm really wondering if it is an inherited part of a type of scoliosis, like a double inheritance or something. This might be the explanation why scoliosis is painful in some people and not in others. There could be a subgroup of dystonic scoliotics that have pain, while the majority do not, thus leading the majority of scoli surgeons to say the angering statement (to those of us who hurt), "Scoliosis doesn't hurt." I'm just thinking out loud here.
I'm also wondering if this will give my surgeon something more to think about in terms of correcting my "high and tight" curve. I've been pondering over whether or not to go back to him just yet. It's been two full years and he initially told me to come back in 18 - 24 months (I have his notes where he states that). But then he sent my doctor a note that said five years. So I don't know whether I should wait the five years or not. They are monitoring my scoliosis at the hospital where I'm going. Even though they measure the curves MUCH smaller, the radiologists report said of last years x-ray that there was progression noted in the lower (compensatory in my case) curve. I just don't know if this new Dx would change the way my scoli doc looks at my condition or not.
Because of my recent surgery, my deductible and yearly out-of-pocket maximum have been reached. So finacially, this would be a good time to have surgery. I have a $2 million dollar lifetime policy that is getting eaten up rather quickly. Right now I have good doctors that are working with me and if I use this insurance up I'm done. I just don't want to use up my insurance on these very expensive shots that are for life and end up with not enough money to cover the scoli surgery that my scoli doc says I will eventually need. My only hope then would be if my hubby's employer switches to a different insurance company. But then I will not be able to see all of the specialists that I am currently seeing for this and other conditions (I have a lifetime female problem, too, and I really love my doctor). I would hate to start over with all new docs. Sorry the insurance thing is off topic, but Botox is very expensive. I need to sit down and figure out how quickly this will eat up my insurance. This is something I definitely NEED to talk to my doctor about.
Any input or experiences with Dystonia are certainly wanted and more than welcome.
Rohrer01
http://www.ncbi.nlm.nih.gov/pubmed/12654970
The reason I'm posting here is because I was diagnosed with cervical muscle dystonia yesterday. There is a Dystonia Medical Research Foundation that I haven't checked out, yet. According to this small study cited above, people with scoliosis are more succeptible to having it. I feel like I'm finally getting somewhere. It seems that in us scolis, the fix for the dystonia can be fixing the scoliosis. I tried continuing this discussion on my own thread, "I have some imaging CD's", but because the topics seem to change on personal threads, no one has responded to the topic of dystonia.
It seems interesting, though, that I have had tics in my left shoulder/neck/head for quite a while now (I even have them in my hands which affects my fine motor coordination). I never mentioned it to the doctor because they are very mild and not very bothersome when compared to the bigger issues that I face. After looking up dystonia, as instructed to do by my physician, I found out that these tics are related to the dystonia. So now, I'll have to mention them. This is where most of my pain is coming from, also (not the tics but the SEVERE muscle spasms caused by the dystonia).
The "treatments", there is no cure, are Botox injections, deep brain stimulation, and nerve severing. I've wanted to try Botox all along, as Jrnyc has had such success with it. Well, it seems I'm going to get to try the Botox injections after all. This will decrease my exposure to steroids (we all know what happened to Jrnyc from chronic steroid use). Botox can cause flulike symptoms in some people and I stand the risk of not being able to lift my left arm until it wears off, a risk I'm willing to take.
I thought someone in the Research Section may know more about this disease than me. The only two ways to come down with this disease that I have found so far are: #1) inheritance, and #2) injury. I don't quite know where I would fit in there. I'm really wondering if it is an inherited part of a type of scoliosis, like a double inheritance or something. This might be the explanation why scoliosis is painful in some people and not in others. There could be a subgroup of dystonic scoliotics that have pain, while the majority do not, thus leading the majority of scoli surgeons to say the angering statement (to those of us who hurt), "Scoliosis doesn't hurt." I'm just thinking out loud here.
I'm also wondering if this will give my surgeon something more to think about in terms of correcting my "high and tight" curve. I've been pondering over whether or not to go back to him just yet. It's been two full years and he initially told me to come back in 18 - 24 months (I have his notes where he states that). But then he sent my doctor a note that said five years. So I don't know whether I should wait the five years or not. They are monitoring my scoliosis at the hospital where I'm going. Even though they measure the curves MUCH smaller, the radiologists report said of last years x-ray that there was progression noted in the lower (compensatory in my case) curve. I just don't know if this new Dx would change the way my scoli doc looks at my condition or not.
Because of my recent surgery, my deductible and yearly out-of-pocket maximum have been reached. So finacially, this would be a good time to have surgery. I have a $2 million dollar lifetime policy that is getting eaten up rather quickly. Right now I have good doctors that are working with me and if I use this insurance up I'm done. I just don't want to use up my insurance on these very expensive shots that are for life and end up with not enough money to cover the scoli surgery that my scoli doc says I will eventually need. My only hope then would be if my hubby's employer switches to a different insurance company. But then I will not be able to see all of the specialists that I am currently seeing for this and other conditions (I have a lifetime female problem, too, and I really love my doctor). I would hate to start over with all new docs. Sorry the insurance thing is off topic, but Botox is very expensive. I need to sit down and figure out how quickly this will eat up my insurance. This is something I definitely NEED to talk to my doctor about.
Any input or experiences with Dystonia are certainly wanted and more than welcome.
Rohrer01
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