Rem Murray - Not a pain in the neck

Nil d · Guru

Rem Murray - Not a pain in the neck

Muller93 · Guru

Hey Nil'd. You don't have to tell me obviously, but how was your wife diagnosed? Cerebrospinal fluid, blood testing(ESR), EMG, biopsies, CT scan? Or was it through a simple neurological scan by a neurologist?

Nil d · Guru

Muller93 wrote:

Hey Nil'd. You don't have to tell me obviously, but how was your wife diagnosed? Cerebrospinal fluid, blood testing(ESR), EMG, biopsies, CT scan? Or was it through a simple neurological scan by a neurologist?

I don't mind the question. In fact, thanks for asking, Muller. She first had the symptoms (head pulling and tilting, and a lot of pain) in the fall of 2003. The first doctor she saw called it a "wry neck" which is a muscle ailment that goes away - this was an obvious misdiagnosis. She then saw a neurologist, who called it what it was (cervical dystonia) by examining the involuntary movements, but had the bedside manner of a slug.

She now has her Botox injections administered by a movement disorder specialist (an MD), even though it's a neurological disorder. It's a very rare disorder; most doctors have never heard of it. Many neurologists, even, are not that familiar with it.

Here's a link to a site, if you're interested. I'm happy to help raise awareness.

http://www.torticollis.org/

My wife's movement type would label hers "laterocollis".

-- Edited by Nil d at 12:12, 2006-03-16

Muller93 · Guru

Interesting. Has your wife been seen by a rehabilitative specialist? Specifically a Physiotherapist with "manual therapy" certification? In any case, I am sure this is not hockey related stuff but I figured worthy of discussion for a moment. Neck pain is not very nice.

Nil d · Guru

Muller93 wrote:

Interesting. Has your wife been seen by a rehabilitative specialist? Specifically a Physiotherapist with "manual therapy" certification? In any case, I am sure this is not hockey related stuff but I figured worthy of discussion for a moment. Neck pain is not very nice.

She has physiotherapy twice a week with a physio who has some experience with dystonia. He gives her special therapy and works with her on "Super Slow" weight training.

Key Lime · Guru

Hey Nilsey...while I was reading your post, I began to get very anxious. I have been suffering from shoulder/neck pain for 4 years now. Some doctors diagnosed it as "permanent nerve damage" caused by a body check, others will not confirm that disgnoses. To make it short, know one knows what the heck I have. It's a living hell sometimes but I'm pleased that I'm a tough MF. Can you please help me by letting me know if there is a web-site I can consult with...

Nil d · Guru

Key Lime wrote:

Hey Nilsey...while I was reading your post, I began to get very anxious. I have been suffering from shoulder/neck pain for 4 years now. Some doctors diagnosed it as "permanent nerve damage" caused by a body check, others will not confirm that disgnoses. To make it short, know one knows what the heck I have. It's a living hell sometimes but I'm pleased that I'm a tough MF. Can you please help me by letting me know if there is a web-site I can consult with...

I truly hope that's not what you have, Lime. If you have no muscle spasms or involuntary head movements, you're probably OK. The best web site we have found on the subject is this one:

http://www.torticollis.org/

You should go see a reputable neurologist.

Key Lime · Guru

Nil d wrote:

Key Lime wrote: Hey Nilsey...while I was reading your post, I began to get very anxious. I have been suffering from shoulder/neck pain for 4 years now. Some doctors diagnosed it as "permanent nerve damage" caused by a body check, others will not confirm that disgnoses. To make it short, know one knows what the heck I have. It's a living hell sometimes but I'm pleased that I'm a tough MF. Can you please help me by letting me know if there is a web-site I can consult with... I truly hope that's not what you have, Lime. If you have no muscle spasms or involuntary head movements, you're probably OK. The best web site we have found on the subject is this one:http://www.torticollis.org/You should go see a reputable neurologist.

Thanks for your help Nilsey...I've been to see the head of Neuro at the Montreal's Royal Victoria.

Muller93 · Guru

Physiotherapy in Halifax is it? Curious to know where? Oten times cervical spine pain can be attributed to over active muscle groups in the neck secondary to underlying muscle imbalances or specific joints in the neck.

Sometimes the best Physiotherapists in this area are "credentialed" through a very intensive program of post graduate studies. Of course it would depend on the accurate diagnosis of the torticollis. Where is the Physiotherapy taking place if you don't mind? it sounds like the Physiotherapist is involved with neurological conditions...VG(or is it Camp hill now)?

Nil d · Guru

Muller93 wrote:

Physiotherapy in Halifax is it? Curious to know where? Oten times cervical spine pain can be attributed to over active muscle groups in the neck secondary to underlying muscle imbalances or specific joints in the neck. Sometimes the best Physiotherapists in this area are "credentialed" through a very intensive program of post graduate studies. Of course it would depend on the accurate diagnosis of the torticollis. Where is the Physiotherapy taking place if you don't mind? it sounds like the Physiotherapist is involved with neurological conditions...VG(or is it Camp hill now)?

Actually, it's at a private clinic/gym called Super Slow Zone & Physio Fitness. My wife has a healthy disdain of physiotherapists, and this is the first one she's ever been to that actually seems to help with the pain (by strengthening the affected muscles).

I don't think the dystonia diagnosis is in dispute. We have read extensively on it, and she fits the bill perfectly. The neurologist we saw is an expert in the field and has treated many cases before, and said she had a classic case. The problem with this guy was his bedside manner left much to be desired (he flew in a rage one time when I had the nerve to ask a simple question) and my wife tensed up every time she went to see him for her Botox shots. Being a neurological disorder, her anxious mental state just made it worse.

Her pain is strictly related to spasming muscles. Physiotherapy can only help with the symptoms. The cause is not in the muscles, but in the brain.

Muller, you're into sports rehab, right? Have you dealt with dystonia patients before? Any leads you might give us on this would be greatly appreciated. (Where do you live, BTW; your profile doesn't say?)

Muller93 · Guru

Hey Nil'd, Crappy game tonight eh?

One of the things that gives me pause is the diagnosis seems to have been made with little "hard" evidence other than a simple neurological "opinion". Often times these conditions can be confirmed through diagnostic tests which I had mentioned above.

You are correct however if it is in the "brain" then Physiotherapy is more symptom management rather than curative.

I happen to treat a great deal of neck pain in my practice.Torticollis is common and is often a result of sensitized nerves within the cervical spine itself. Very complex anatomy which I will not bore you with but the treatment typically involves either specific stabilization or cervical mobilization( kinda like "cracking" the neck but without the risks).

Why the disdain for Physiotherapists I wonder? It is like any profession I suppose in that there are very good ones and those that have focused a little less on their careers...bad experince with one or two?

I just moved back from working in the US a few years ago and now work in New Brunswick by the way.

Nil'd, pretty tough really to get a snapshot of what is going on there but when I read your post, I could understand the frustration you guys must be going through as I see pain in clinic on a daily basis. I do know some pretty spectacular Physiotherapists in Halifax if you would like some names. Some of these Physiotherapists are scary with the anatomical and clinical knowledge they have.

Nil d · Guru

I had no idea you were in New Brunswick, Muller. We're practically neighbours.

Feel free to send some names of good physios. Maybe send me a private post.

Thanks!

Nil d