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Torticollis / Stiff Neck / Wryneck / Cervical Dystonia

Spasmodic torticollis is a chronic neurological movement disorder causing the neck to involuntarily turn to the left, right, upwards, and/or downwards. The condition is also referred to as "cervical dystonia".

 

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Torticollis / Stiff Neck / Wryneck / Cervical Dystonia

The word 'Torticollis' comes from the Latin, tortus meaning "Twisted" and Collum meaning "Neck".Torticollis refers to the neck in a twisted or bent position due to imbalance of neck muscles and leads to involuntary contractions of the neck muscle refers to presentation of the...Read More

Posted on : Thursday, April 15, 2010 12:00 AM
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ptennant
(Guest)
I am 42 years old and played the violin for about 30 years. I played 9 hours a week plus practice. I have had torticollis since I was 16 years old and after about 30 years old it has gotten much worse. Botox A and B do not work anymore, so my only option is to take a combination of Clonazapam [Klonopin] .5 mg and Wal-Act which you get at Walgreens in the pharmacy. These two work together to take away the symptoms of pulling to the side but Clonazapam has some long term side effects. I have never had any pain with my now spastic torticollis but my neck does pull to the side and it is very embarrasing without the medicine I cannot look at people for more than a few seconds but the medicine takes away the pulling to the side completely most of the time. I take these two together about two hours before I go out or have to do something like sing or speak in front of people. The effects last about 6 hours after taken and you will get a little drowsy with these so be careful. I hope this helps someone and if anyone knows any better treatment, please let me know. I have tried chiropractic and physical therapy many times and does not help at all or makes it worse.
Replied on Sunday, September 26, 2010 3:28 PM

qikcarz
(Guest)
I am a 52 year old male, and have had torticollis for about 11 years. Nothing has worked for me including botox injections, chiropractic, massage therapy, accupuncture, and all the typical drugs and even herbals. I still go to work everyday, but it is getting harder and harder to deal with. Recently I read about Microvascular decompression surgery, and it has really gave me hope. It seems to have a high cure rate, and I am going to ask my neurologist to have an MRI. I wonder why he has never told me of this? It seems to be that an artery is pushing tight up against the spinal accessory nerve, so they move it away and put a little cushion between them. This sounds promising to me, and seems to make sense. I wonder if the doctors have been looking at things from a "symptom" point of view all these years? What I mean is that, they say there is a chemical problem steming from the basil ganglia region of the brain. But maybe the chemical is being produced because of the nerve being irritated, and the brain is just doing it's normal thing not knowing the difference. It's kinda like a thyroid problem. Anyone out there had this opperation, or know of any other facts about this?
Thank you in advance for any help.
Replied on Sunday, October 3, 2010 8:21 AM

h1155
(Guest)
I am 46 now and I was born with it. I has been always suffering from it, but now is going to be worse than before and painful. I am just wondering if you went for surgery or not and if you did it works for you. It would be great help if I know how it works.
Replied on Saturday, June 2, 2012 1:39 AM

louise3
(Guest)
I am a 27 year old female and have been dignosed with wry neck today, my doctor isn't very interested in his patients and just shooed me out of his office with no pain killers or any information on this diagnosis. So i wanted to know is this a life long thing or can it be treated so it goes away???? does it gradualy get worse????
Replied on Friday, August 26, 2011 12:16 PM

bsky1
(Guest)
soo sorry to hear that..I went through the same thing.Pill after pill, they would all say oh shes young shes just overreacting. I asked my doctor to refer me to a neurologist and after mri and exams finally got the diagnosis...Yes it gets worse. I've been suffering for almost a yr before getting someone to care. Now my doc wants to do botox injections so i'm in the process of researching it. Ins.[atleast] mine will cover it after u have been through 2meds that didnt help. I will let u know what happens. I'm currently trying to decide if i should do injections or try chiropracter first.
Replied on Thursday, September 22, 2011 8:56 AM

Goodwin81
(Guest)
can I get an ICD-9 code for this disease and a cpt code as well
Replied on Wednesday, September 21, 2011 11:22 AM
I am 16 and have had wry neck for my entire life; I believe it is due to birth trauma, but the cause is no longer important to me. My head is noticeably tilted to one side and the muscle on the side of my neck is constantly taut. My face has also developed asymmetrically, and as a 16 year old, all of these symptoms bother me; I have only just started searching for ways to fix this, as I became more self conscious, and have received very vague answers, with most people only having experience with treating wry neck in young children, saying things like "see a chiropractor and hope for the best" or that surgery may most likely be required. I was wondering if anybody could tell me if this sort of surgery would be covered by health insurance, and also if surgery to fix the asymmetry of my face could be covered, as it's gotten to the point where I look in the mirror and my facial features look as if they have slid diagonally to accommodate my tilted head.
Replied on Monday, October 24, 2011 8:53 AM

shriner
(Guest)
Try contatcting Shriners Hospitals for Children. They treat children all over the country with this condition. There are 22 hospitals, so I am sure one is near you. All treatment is provided regardless of your ability to pay.
Replied on Tuesday, November 1, 2011 1:00 PM

K.Tess
(Guest)
Hi, I'm 15 I have the same problem and I am scheduled to have surgery in a week, it is covered by health insurance. My doctors have told me that after surgery, I will have to have rigorous physical therapy, to retrain my neck to hold it self upright. Im hoping that after surgery and therapy, my face will retain it's symmetry. I wish you luck. :]
Replied on Friday, November 11, 2011 9:22 PM
wow, good luck to you! Can I ask what the surgery is called, because after I posted this, I went to see someone about my neck at a hospital, and they basically told me I was stuck like this my entire life, the only surgical way of fixing it being a way that will result in straightness, but complete lack of mobility. I didn't really know enough to argue otherwise, so I've been told to just see a physio to keep my neck mobile
Replied on Sunday, November 13, 2011 3:28 AM

Neisha042
(Guest)
Hi Liza77s, reading your story, made me wish i had read this a year ago, I hope your still out there researching. I was you 25 yrs ago and my neck never stopped. It was hard all the time and twisted just like yours, I have had the surgery and years later know i would never have made it, without having made this very scary choice. I still go to chiropractors regularly, I will keep watching. you can contact me and i will give you all the info i have thinking of you _ Nat
Replied on Tuesday, May 15, 2012 8:33 PM
Hi Nat, thanks for your encouragement :] I have continued searching and found papers published overseas possibly that explored the treatment of neglected torticollis like mine through surgery, something like bipolar release of sternomastoid muscles, and the results included photos that showed that it was really effective, even in fully mature adults. The authors went so far as to recommend it for everyone, even if it will not be completely reversed, as it helps a lot. Is this what you underwent, because where I live I don't know where I should go for this kind of thing, or even if it would be recommended?
Replied on Thursday, September 20, 2012 5:40 AM
 




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