Cervical Dystonia/Torticollis
 

I have a theory I want to run by you guys but before I do that I wanted to ask has anyone been diagnosed with cervical dystonia or torticollis with their TOS?

Shelley,
I was diagnosed with cervical dystonia back in 2003.

I had to look up torticollis, do you think you have that Shell?

[Torticollis is one of a broader category of disorders that exhibit flexion, extension, or twisting of muscles of the neck beyond their normal position. In torticollis your neck tends to twist to one side. The condition can either develop slowly if you have a family history of the disorder, acutely from trauma, or as an adverse reaction to medications.

When the disorder occurs in people with a family history, it is referred to as spasmodic torticollis. The characteristic twisting of the neck is initially spasmodic and begins between ages 31-50 years. If you leave the condition untreated, it likely will become permanent.]
more -
http://www.emedicinehealth.com/torti...article_em.htm

have had the adverse reaction
 

i did not know the name of it, but in the 1980s i took compazine for vomiting and had this as a 3 day long side effect. i had no control of where my neck went and it decided to bend sideways toward my shoulder. i now list compazine as one of my "allergies" so they don't ever give it to me again.

i have also had charlie horses in my chin occasionally. this is very painful.

I thought a couple of people with TOS have this dx as well.

I am working on my long explanation and hopefully will post it tomorrow. Its just a theory but i found something to back it up and wanted to pass it along.

I remember towelhorse always mentioned "wry neck", I saw that is another name for torticollis on some of the sites I looked at.

Ok so where do I start on my latest theory….It will take me a while to get to my point so bear with me.

So about a year and a half ago I came down with a frozen left shoulder (the non TOS operated side even those I am bilateral TOS). And boy did I get frozen. And as you all know frozen shoulder is very painful. At about a year into it I was making progress and had about ½ my range back and then fell and went back to ground zero. (this is a set up part of my theory).

The interesting part of my frozen shoulder is that sure the capsule was frozen and frozen freaking solid and I had no range to lift or rotate inside or outside. But oops the interesting thing is that sometimes in PT we worked on the shoulder and sometimes we worked of c5/c6 and t1 and I got more range than just working the shoulder capsule. Which meant it was connected.

Fast forward to end of January of this year and Dr Jordan advised me to see his ortho guy because my range was still very poor and not improving. I went to his ortho and he examined me and said I see 500 cases of frozen shoulder a year and only operate on two cases and you might be my first of 2009. He said he would have to do an arthroscopic shoulder capsule release. But first he said let’s try one last cortisone shot into your left shoulder to see if we get any range improvement. Seemed reasonable but in hindsight bad thing to do. And that freaking ortho refused to see me until I said yes to surgery. At first Dr J disagreed with my theory but when he saw the blood tests and that the virus keeps coming back because of its severity from the cortisone shot he was like intersting.

Well, 24 hours after that shot my world turned upside down. I developed a severe severe headache for a week. So severe they did a brain MRI (came back normal). I also developed flu like symptoms and severe neck spasms up my neck. And no improvement in the shoulder. As a couple of weeks went by I also developed a sensation of paralysis in my left shoulder and chest. And that headache kept coming back and that the neck spasms where horrible, so bad that the pain and spasms created an occipital and trigeminal neuralgia because the muscle where spasming and crushing the nerves. And the nerve tremors were frightning, the burning unbearable. The neuropathic pain progressed down my entire left side. I could not lay on the back of my head and it has progressed somewhat that I cannot lay on left side either. And some facial droopiness all on the left side. There was also a random lesion in my left year.

The last two symptoms led me to the ENT who was like ah you have a zoster infection. Varicella zoster or Herpes zoster or the chicken pox which I had a very bad case of during my childhood. And the interesting part was my chicken pox was all over my scalp and ears and neck when I was a child. Oh and let me also say that in my 20’s I got a case of shingles …um in that left shoulder.

So essentially it was a virus that was causing a lot of this. So the ENT kind of put together the theory that I was in the midst of a viral infection because of the facial droopiness and ear sore which preceded the cortisone shot and worsened after it. I will explain how I got the viral infection in a moment. The cortisone shot apparently amplified the herpes zoster and it attacked my left side face and head and upper body/left shoulder /chest and thoracic region. Oh and the flu like symptoms and fatigue were bad, very bad.

So the ENT prescribed me Valtrex for 10 days and by day 3 I was like WOW! I feel so much better. And surprise surprise but I got some pretty significant improvement (80%) in the left frozen shoulder. My PT was amazed and started researching viral/neuro issues. And that TOS shoulder best its ever been. Its amazing the damage this virus does to nerves and especially motor neurons. Muscles that have not worked are working again. My PT said that she had often heard that some neuro issue are actually caused by viruses. They even suspect the HSV 1 virus causes PD and Alzheimers.

I finished the valtrex and went down to a maintainence dose and bam the symptoms increased again. So the thought was the cortisone shot really amped up this virus and it might take a while to go away. Each time I go to the higher dose of Valtrex I am better as I the shoulder and the headaches and the muscle spasms and neck and head spasms and pain. I will now be on the valtrex for a year to help bring the virus dormant.

But the docs were worried that perhaps something underlying was wrong that I kept relapsing so we checked out every possible scenario and all is fine.
I even was sent to an infectious disease doc as herpes zoster falls under the domain of infectious diseases. So she did blood work and hmmmm the herpes zoster came back elevated but not crazy. But my herpes simplex 1 antibody titres were off the chart showing a recent infection. And I tested negative and no exposure to HSV2.

I was like what? HSV1 is a cold sore virus. And I have never had a cold sore in my life seriously. And since this wrong saga started I still have not had a freaking cold sore. But the tests said HSV1

So I started reading and researching and freaking googling to learn all I could.
Apparently at some point I was exposed to it. 80% of the US tests positive for the virus.

At some point you get exposed most likey through the mucus membranes (nose) and the virus travel to some dormant nerve in your body. For many it lives in your trigeminal nerve or 5ht cranial nerve the one that innervates your jaw and forehead (hence the trigeminal nerve I affected for me…and c2 is also affected which apparently comes off the trigeminal nerve and hence is causing my occipital neuralgia) Apparently they think mine came from some dental work which stressed my trigeminal nerve in my jaw and the cortisone shot blew it up.

Did you know that the HSV1 virus can live in your cervical spine and mimic cervical radiculopathy…ie my c5/c6 issues and shoulder issues.
So how does this relate to cervical dystonia or spasmodic torticollis. I remembered those words the other day as I was reading because I am beyond frustrated with my occipital and neck spasms and nerve pain.
And I came across this article…which made sense because the herpes virus lives dormant in your nerves and when reactivates damages the nerve ganglion. And it keeps redamaging it with each occurrence. And it creates neuropathic pain or post herpetic neuralgia which hurts like the dickens. And the damaged nerves irritates the muscles and the muscle spasm and it’s a vicious circle.

Then yesterday I came across this article which mentions the connection of the herpes simplex virus to torticollis and cervical dystonia. And what muscles do both of those affect…the scalene and the SCM etc.
So food for thought. Feel free to share my story with your docs and ask to try an antiviral med. Anyway that’s whats been up with me the last 4 months and it has sucked but I have such a better handle on it now.

Anyway here is an excerpt from the article and the link…..(its and old article but relevant)

http://www.patentstorm.us/patents/56...scription.html

In conducting examinations of spasmodic torticollis patients, the inventor observed that several of the patients experienced recurrent episodes of herpes simplex stomatitis affecting the hard palate, a very unusual place for recurrent oral labial herpes. Through further investigations it became evident that the administration of oral valacyclovir to treat the herpetic ulcerative lesions of the hard palate also resulted in a noticeable disappearance of the neck pain and associated internal posturing of the arm and hand, classic ST symptoms. As a result of the administration of oral valacyclovir, further tests were conducted to determine what, if any, relationship exists between spasmodic torticollis and the herpes simplex virus (HSV). Moreover, clinical trials were conducted to determine whether spasmodic torticollis is a persistent infection due to the herpes simplex virus.

Research and clinical efforts led to the surprising and singular conclusion, that spasmodic torticollis constitutes a persistent infection caused in most instances by the herpes simplex virus, probably herpes simplex virus type one. Research also assisted in uncovering the mechanism through which the herpes virus is believed to attack the specific muscles afflicted with spasmodic torticollis. Clinical trials then confirmed the efficacy of antiviral agents in the treatment of the disorder.

Anyway I thought it was all very intertersting. Not saying it caused my TOS but it cetainly has some implication for me personally. And I will say that some of the symptoms I have now I had 4 years ago when I was first dx with TOS on the right side. As a matter of fact my right side TOS started with similar symptoms. It may or may not be applicable to anyone else but thought I would share food for thought. My primary has said that Valtrex is a very safe drug one of the safest out there and will be keeping me on it for a while.

Happy to discuss anymore with anyone interested.

Wow that is amazing info!
You might have found out something that will really help others if they consider trying it.
Especially if they have or had shingles, herpes, cold sores, or mysterious outbreaks like those.

fabulous info
 

i too had chicken pox. keep us posted. i hate steroids. i always get fat. have had a rash ever since the coritsone & penicillin shots in jan 09, will try valtrex.

My gosh, Shelley....This is really interesting! And stunning to think that that might be at the bottom of some of our problems. I had a bad case of chicken pox when I was 5 yrs. old. I'm going to try to remember to bring this up with my neurologist the next time I see him.

Fascinating stuff here Shelly - thank you for your detailed research!!!

Anne

Interesting theory...
 

I was diagnosed in '06 by Dr. J with cervical dystonia and TOS. You have piqued my interest, now i have to do more research on this. I'll share whatever i can find.

Omg
 

HOLY **** SHELLEY!
First of all...I am so, so sorry you went through this sad physical demanding horror. However, I look at it as putting the docs on the spot having to actually listen, bow to you & cooperate.

Second... your tenacity, intelligence, research & incredible breakthrough you may have found as a contributing factor to TOS is AMAZING.

Your a forensic researcher dear one.
xxoo cyn

I was diagnosed with cervical dystonia by a neurologist a month ago

Hi shelly,

this is very interesting and sorry you are going thru all this now. I too see Dr. J and he gave me a diagnosis of Cervical Dystonia (which is basically when your neck is stuck to one side or you have spasms )and TOS because CV the diagnosis code that is approved for botox by the FDA. TOS is not so thats how they get around it.I know because I dont have CV symptoms and I asked dr. j about it. Later I had to fight with my insurance to get the botox covered, and I won because of the CV diag.

I have looked into Valtrex for nerve pain before-I have herpes and take valtrex for outbreaks and it helps the nerve pain that goes down my leg .I have mentioned it to some dr's as maybe helping with the nerve pain from TOs but never got any response.I will mention to Dr. j next time I see him My primary has suggested taking one a day to prevent outbreaks. (500 mg) .I think I will try taking it regularly to see if it helps the nerve pain in my neck and shoulder. I saw another article that I will try to find that relates Valtrex for Shingles with TOS. I will try to post it.

Whats also interesting is that there is a theory that Breast Cancer is caused by a virus. I have BC and also sinus issues, so in my mind I feel it could all be connected to a virus and/or inflammation. I would really like to find an integrative health Dr. who can help me with all of these things.

Questions:

How much is a high dose?
Who is your PT that is interested in the virus connection? Are you happy with him/her? I cant remember if you are still in S.M. I am in Westside too.

Thanks, JKL

Shelley hasn't logged in for awhile (2011), you might try to PM her - perhaps her email is still the same.
I don't remember if she moved or not.

Oh I hadnt realized this was an old thread. A good thing to look into though, i will still try to find the article I mantioned,

Sub-clinical viruses can cause inflammation. I've read of cases in which Valtrex made a difference. I had some cold sores prior to my last set of surgeries and my primary wrote me an Rx but the Valtrex had no effect on my neuropathic pain. It was worth a try.

Dr. Jordan Dx me with Cervical Dystonia but I saw a movement disorder specialist who said I do not have true dystonia, but myofacial tension.

I was diagnosed cervical dystonia in June 2013.

After 20 years, I think it's a label. The neck spasms pull the cervical spine into a reverse lordosis, or head is pulled to the side and down from cervical spine short bands to the collar bone.

I met a few people with dystonia, I don't know if it is degrees or misdiax, but they are severally twisted and spastic, not just what I have seen with traditional TOS lordosis.

I realize you can find a PT or a chiropractor hat ill say TOS....the doctors only familiar with the brachial entrapment, non vascular, don't want to give a TOS diagx. You will hear lots of labels.

A detailed pain diary, meds, pain levels/activity, body area affected kept is you're best friend. Keep copies of all test, MRI, ex rays, blood work etc.
especially the first symptoms, what happened, how treated.

WOW-great info
 

I was initially diagnosed with torticollis at age 19, intermittant occurrences of it that lasted several days. Twenty-six years later I've had rib resection-diagnosed with TOS, which has not resolved my ear/head/neck pain...so this is very interesting info for me-thank you for taking the time to post it!!!!!

A tos specialist diagnosed me with this but I thought it was the part of same thing...How many people with tos have cervical dystonia too?
The scalene removal would resolve it right...no muscles to spasm?

Many doctors will use the term dystonia but the spasms we often have w/TOS is not true dystonia. Dystonia/Torticollis is a movement disorder and generally results in a tilt to one side and possibly uncontrollable jerks. This is treated often with ultrasound guided Botox to specific muscles. I don't know if the scalenes are often (or ever) implicated with dystonia, so scalenectomy is not a treatment for it.

Peripherally-induced dystonia
 

Misdiagnosed for cervical dystonia left side in 2007 and had Botox injections for that. It was a catastrophe. Things gradually got worse. Maybe this was also the blessing since I then really had to fight hard and figure out, what was wrong. As it now turned out, it was Arterial TOS and thus a secondary dystonia (so called peripherally-induced). After surgery, the symptoms are mostly gone. This is for sure a rare constellation but make sure to get the right clinical tests and appropriate treatment. Always question hard your neurolgists diagnosis.

Check this out: Spasmodic torticollis due to neurovascular compression of the spinal accessory nerve by the anteroinferior cerebellar artery: case report.
http://www.ncbi.nlm.nih.gov/pubmed/10981767

scalene removed not help my tos or torticillis
 

when i had first rib resection in '08, I also had scalene removal and it did not help my tos or torticolis long term. Hmmm...? I do wonder how many tosers also have wry neck or torticollis??

Shelley - I just ran across your thread and am very interested in hearing more about this. I hope you are still on this site (I see where this post is about four years old) and you will contact me! I recently visited a MD who does integrative medicine and he thinks my Spasmodic Torticollis is caused from a virus. I also see a naturopath and through process of elimination in looking at the viruses that show up on her Orion Bioscan machine, we think that if my ST/CD is caused from a virus that it's the chicken pox virus. I had a very bad case of chicken pox when I as a teenager.