Nicholascsi
01-24-2008, 11:17 AM
My father has been diagnosed with an affliction called cervical dystonia. Quite suddenly, his neck muscles have become rigid and generally unresponsive to his attempts to hold his head upright. Now, his head is almost fixed in a downward gaze with his chin pressed against his chest. He can with great difficulty move his chin away from his chest and look forward, but he pretty much has to hold his chin up with his hand or it returns to its chest position. Other cervical dystonia cases reviewed on the net seem to involve head/neck tilted down but to the right or left, rather than the straight down position my father is experiencing. He has visited medical experts in the Chicago area who suggested and then attempted injections of Botox inside the neck, which has helped some other patients. This had no positive effect on my father, and resulted in a temporary condition where it was difficult and painful to swallow. No further Botox treatment is planned. He has begun acupuncture but it is too early to determine whether this will offer any temporary or lasting relief.
He has several complicating or possibly related conditions that should be mentioned when considering his cervical dystonia treatment. He has been diagnosed with Parkinson's Disease. The original diagnosis was about 9 years ago. The progression of the disease has been slow and medications, including STALEVO by Novartis, have been pretty effective, though a vast host of side effects have been experienced. The disease has, however, progressed to the point where new symptoms have developed and new medications have been prescribed. He began taking Alizect a little over a month before the sudden onset of the neck issue diagnosed as cervical dystonia. The Azilect website notes rigidity as a possible side effect but dystonia is not mentioned. It is possibly worthwhile to note that the initial onset of the dystonia symptoms occurred after an over-strain during exercising, though the situation has remained the same or become more severe in the seven months since the initial onset. Shortly after the emergence of the neck-related issues, he began to experience of tremors in his legs (or rocking of knees) but this could be a Parkinson's related coincidence. Prior to this, there were no Parkinson's related tremors of any kind, just stiffness and posture/gait issues.
One last point. He was operated on nearly ten years ago for a brain tumor (front-left temple) which may be irrelevant to the current condition, but was a significant neurological event and therefore is mentioned.
Any thoughts or suggestions to address or improve this condition would be appreciated.
He has several complicating or possibly related conditions that should be mentioned when considering his cervical dystonia treatment. He has been diagnosed with Parkinson's Disease. The original diagnosis was about 9 years ago. The progression of the disease has been slow and medications, including STALEVO by Novartis, have been pretty effective, though a vast host of side effects have been experienced. The disease has, however, progressed to the point where new symptoms have developed and new medications have been prescribed. He began taking Alizect a little over a month before the sudden onset of the neck issue diagnosed as cervical dystonia. The Azilect website notes rigidity as a possible side effect but dystonia is not mentioned. It is possibly worthwhile to note that the initial onset of the dystonia symptoms occurred after an over-strain during exercising, though the situation has remained the same or become more severe in the seven months since the initial onset. Shortly after the emergence of the neck-related issues, he began to experience of tremors in his legs (or rocking of knees) but this could be a Parkinson's related coincidence. Prior to this, there were no Parkinson's related tremors of any kind, just stiffness and posture/gait issues.
One last point. He was operated on nearly ten years ago for a brain tumor (front-left temple) which may be irrelevant to the current condition, but was a significant neurological event and therefore is mentioned.
Any thoughts or suggestions to address or improve this condition would be appreciated.
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rayefaye
01-24-2008, 12:56 PM
Hi Nicholas, my heart goes out to your father because I know how bad this condition is. Mine too, turns my head to the left side and my shoulder will draw all the way up to my ear. At times, it can be like this for hours especially when we have any weather changes. Overusage of my right arm or trying to left up anything over my head also brings these on. My left sholder is permanently raised higher than my right and my left arm is locked in a position where my hand touches my shoulder. All the muscles in my neck on both sides are harder than bricks and I tried everything to fix it. I have Botox shots which did nothing for me at all. So now I take Soma 350 mg 4 x a day which pretty much keeps them under control. But when we have bad weather or strong fronts move through then they start again. I can always tell when I going to get the real bad ones that turn my head to the left and my shoulder draws up to my ear. My shoulder will always hurt so bad for about a hour and then here it comes. These spasms have spread over to the other side of my neck and down my back. Then when it gets that bad I have to go to the ER and get a Stradol shot which is like a prednisone shot. I have had them so bad in my back that it has left me bent over and cannot stand straight up. I have heard of people being treated with Alizect but I don't know how well it works. I hope your father can find something that will help him because this is a painful condition. Also Cervical Dystonia is thought to be a type of nerve damage in the muscle. I also read that Soma is a type of muscle relaxant that targets nerve related muscle spasms.
NerveEnding
02-05-2008, 02:43 PM
Cervical dystonia where the patient head goes straight down is known, and it is more difficult to treat than other cervical dystonias because of what you saw, namely that there is a higher chance of difficulty swallowing from the botox.
If he has not received botox from a movement disorders specialist, I would first recommend that.
One of the emerging treatments for cervical dystonia is deep brain stimulation. This may also be helpful for his Parkinson's disease. The targets for the two conditions are usually a little different, but he should get benefit from both. Again, this should be discussed with a movement disorders specialist, since doing the surgery for cervical dystonia is not completely widespread.
If he has not received botox from a movement disorders specialist, I would first recommend that.
One of the emerging treatments for cervical dystonia is deep brain stimulation. This may also be helpful for his Parkinson's disease. The targets for the two conditions are usually a little different, but he should get benefit from both. Again, this should be discussed with a movement disorders specialist, since doing the surgery for cervical dystonia is not completely widespread.