Hi, Pbunn, and welcome to EmpowHer! Thanks so much for your question, and I'm sorry you've been through so much in the last year without getting any relief.
I guess my first question to you is this: Are you satisfied with your doctor's diagnosis? Do you believe she or he has done/did everything to try to diagnose you correctly? Have you ever gotten a second opinion? I am astonished (aren't you?) that you never heard the diagnosis of torticollis until you came upon it in your medical chart. That's awful! No doctor ever spoke with you about it or told you why she/he thought that that was what is causing these symptoms?
Did it start after an injury? Does anyone else in your family have this condition?
Honestly, there are so many things that can cause neck or back spasms that I sure would like you to be able to see a specialist. One of the reasons I feel this way is that it seems like all the information I found about torticollis includes that head tilt -- and you say you don't have that. Which makes me wonder if you have something else entirely, like a pinched nerve, a herniated disc, etc. Were these things checked out in the beginning? Did your doctor do x-rays?
EmpowHer has a great encyclopedia page on torticollis, which includes causes, symptoms and treatment possibilities:
And here are the treatment possibilities it outlines:
Acquired Torticollis
◦Identifying the cause
◦Physical therapy to help relax the muscle and reduce pain
◦In some situations, surgery to cut the nerve to the muscle that is in spasm
◦Oral medications:
■ Anticholinergic drugs, such as trihexyphenidyl (Artane) , benztropine (Cogentin) , and ethopropazine (Parsitan)
■ Dopaminergic drugs that increase dopamine levels, such as levodopa (Sinemet or Madopar) or bromocriptine (Parlodel) , or conversely, drugs that decrease dopamine levels such as, clozapine (Clozaril) and tetrabenazine (Nitoman)
■ Benzodiazepines that block Gaba-A receptors, such as diazepam (Valium) or clonazepam (Klonopin)
◦Injections
■ Injection of botulinum toxin may weaken or partially paralyze the muscle. This may help improve neck posture, but only if begun soon after torticollis begins. The drug's effect wears off after several months and treatment must be repeated.
■ Another treatment involves injection of alcohol or phenol to deaden the nerve that causes the muscle contraction.
And here's a page on treatments from the National Spasmodic Torticollis Association. They also mention injections:
In reading these pages, are you still certain that torticollis is indeed what you are dealing with? Are the medications they suggest some of the ones your doctor tried? And did anyone along the way speak with you about the possibility of injections to stop those spasms?
I hope this helps! You have been through a lot in the last year.
Comment Reply
Hi, Pbunn, and welcome to EmpowHer! Thanks so much for your question, and I'm sorry you've been through so much in the last year without getting any relief.
I guess my first question to you is this: Are you satisfied with your doctor's diagnosis? Do you believe she or he has done/did everything to try to diagnose you correctly? Have you ever gotten a second opinion? I am astonished (aren't you?) that you never heard the diagnosis of torticollis until you came upon it in your medical chart. That's awful! No doctor ever spoke with you about it or told you why she/he thought that that was what is causing these symptoms?
Did it start after an injury? Does anyone else in your family have this condition?
Honestly, there are so many things that can cause neck or back spasms that I sure would like you to be able to see a specialist. One of the reasons I feel this way is that it seems like all the information I found about torticollis includes that head tilt -- and you say you don't have that. Which makes me wonder if you have something else entirely, like a pinched nerve, a herniated disc, etc. Were these things checked out in the beginning? Did your doctor do x-rays?
EmpowHer has a great encyclopedia page on torticollis, which includes causes, symptoms and treatment possibilities:
https://www.empowher.com/media/reference/torticollis#definition
And here are the treatment possibilities it outlines:
Acquired Torticollis
◦Identifying the cause
◦Physical therapy to help relax the muscle and reduce pain
◦In some situations, surgery to cut the nerve to the muscle that is in spasm
◦Oral medications:
■ Anticholinergic drugs, such as trihexyphenidyl (Artane) , benztropine (Cogentin) , and ethopropazine (Parsitan)
■ Dopaminergic drugs that increase dopamine levels, such as levodopa (Sinemet or Madopar) or bromocriptine (Parlodel) , or conversely, drugs that decrease dopamine levels such as, clozapine (Clozaril) and tetrabenazine (Nitoman)
■ Benzodiazepines that block Gaba-A receptors, such as diazepam (Valium) or clonazepam (Klonopin)
◦Injections
■ Injection of botulinum toxin may weaken or partially paralyze the muscle. This may help improve neck posture, but only if begun soon after torticollis begins. The drug's effect wears off after several months and treatment must be repeated.
■ Another treatment involves injection of alcohol or phenol to deaden the nerve that causes the muscle contraction.
And here's a page on treatments from the National Spasmodic Torticollis Association. They also mention injections:
http://www.torticollis.org/
And here is a page on treatments from eMedicine:
http://emedicine.medscape.com/article/794191-treatment
In reading these pages, are you still certain that torticollis is indeed what you are dealing with? Are the medications they suggest some of the ones your doctor tried? And did anyone along the way speak with you about the possibility of injections to stop those spasms?
I hope this helps! You have been through a lot in the last year.
July 23, 2009 - 9:03amThis Comment
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