Cervical Dystonia/Torticollis

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Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 9/10/2008 1:12 AM (GMT -7)   
I have been in severe pain for 6 years. Below you will see some of my diagnoses.
I remembered tonight that 4 years ago I was diagnosed with Cervical Dystonia also
called Torticollis. It's cured by a shot of Botox into the neck muscles. I don't think
my insurance will pay for this. The Botox has to be reinjected every three months.
In the past, I was too afraid to have the Botox shot into my neck, but now after
all these years of pain, I'm beginning to think of looking for a Neurologist to
look at my neck and see.
I look "almost" normal but there is a slight bend to my neck. I doubt that anyone has
this but I thought I'd try.
I'm very tired of pain.
Pam

10 Methadone a day and Neurontin don't do much at all to help me. That's a lot
of Methadone. It should work.
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome,.Prolapsed Bowel and Bladder, Attention Deficity Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety,


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 9/10/2008 8:15 AM (GMT -7)   
I've not been dx'd with that specific disorder, but I have had 3 botox injections. Actually, I just had them Friday! I have bulging discs in C4-6, straighting of the curve, OA, bones spurs & stenosis in the neck. I had the injections in my trigger points of the trapezius (bi-lateral) & the right scapula. The only one that really hurt is the scapula & it was nothing in comparison with my previous SI nerve blocks. The relief was instantanious! My neck & shoulder muscles relaxed immediately, which they've not done in years. I need them every 2 mths, and will not hesitiate. I also had 4 cortisone nerve blocks in the neck & occipital region the month before, which helped a great deal, but were very short term in terms of length of time.

I highly recommend botox. I don't know how long it will last, but my upper back pain level went from a 9 1/2 to a 3-4 instantly.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 9/10/2008 12:53 PM (GMT -7)   
Stephanie!!
OMG ... I didn't think anyone would respond.
I'd like to know if your insurance paid for the Botox.
I know that there is a place in Southern CA. where
a group of people supposidly will help you talk your
insurance into paying ... or help paying. We cannot
pay the high price.
What kind of doctor did your injections.
Also, I'm not totally sure I have it. But a Physical
Therapist said it didn't matter if you had the
Dx. Apparently, that's like like you.
Do you take pain medication along with your
Botox. Even if it worked, I'd probably have
to detox from Methadone.
So many questions... so much confusion ...
a glimmer of hope on the horizon?
Thank you.
Pamela Neckpain
I'm pretty much totally disabled. I can shower and
go to the store. But socially, I'm a real dud. I don't
even know how to act if there was no pain there! turn

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 9/10/2008 1:47 PM (GMT -7)   
Pam my neighbor had Botox injections for her neck and she did really well. Hers were done by her pain mgt dr and her ins did pay for it. Botox is being used alot these days so maybe your ins will pay. All you have to do is call them or if they are online you can find out. Good luck. Susie


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 9/15/2008 10:58 AM (GMT -7)   
Hi Pamela! Yes, my isnurance did pay for them. Unfortunately I am so disease ridden adn low income that I qualify for state medical. So I can get them, with prior approval. I go to a pain clinic. I am still on all my pain meds; Fentanyl patch, oxycodone for breakthrough, muscle relaxer. The pain still flares up, I found out on Saturday! My neck still hurts quite a bit. The trapezius muscles and the scapula are a huge improvement. A friend who works in the medical community said that every time you get a nother botox injection it lasts longer! WooHoo!

I am going to see if there is any help for the neck. Besides cortisone. When my last cort. injections stopped working, all the pain came back in one punch! It felt like whiplash or something.

So, yes. I'm on all my meds for the rest of my pain and the Crohn's. Seems I'll be on them forever. Sad.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


twisty
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/24/2009 12:16 PM (GMT -7)   
I've lived with this condition since the late 90's, and it became progressively worse. You don't have to live with the pain!! First off, you should see a neurologist for an official diagnosis of spasmodic torticollis. They will advise you from there, but yes, botox injections are the best relief known. I believe the sooner you get this treatment, the better. I delayed for a very long time, and allowed my condition to get much worse. It started with a barely noticeable pulling at first, but now it is constant. It became almost impossible for me to drive or function, till I got the botox injections. Your insurance should pay at least part of this expense. It's costly, but the relief is well worth it. I've also been getting acupuncture for years to help keep my pain levels down... it did help with the pain management but not the twisting and pulling. I think you'll find botox will bring great relief. And I'm not sure, but I think I've heard that the sooner you get treatment, you could slow down the progression of the condition... so don't wait like I did.

I realize you posted this months ago, so this may be a late response... but if you're still around, let us know how you're doing! Wish you the best.

ShayLang
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/29/2009 9:00 PM (GMT -7)   

Hello all...anyone?

I am 27 years old, healthy and active and was diagnosed with this disease/disorder/condition?? today, its still sort of a shock. I am being treated mainly for migraines but have had a "tick" in my neck for about 8 years that is uncomfortable and irritating and it seems to get worse. I was referred to a Movement Disorder Neurologist and she is pretty certain that this condition is at least a factor in the chronic migraines I began getting around 15 months ago. She prescribed me Klonopin? Has anyone heard of or tried this? The research I have done online seems to point to this being a drug to control seizures and panic disorders. SHe also is in the process of getting my insurance (United PPO) to approve the BOTOX injections...every thing Ive read below seems to point to the injections being the way to go. Anyone have any advise or recommendations? I am trying to take all this in and looking this up online seems to point to the unknown, and the fact that the UK has done the majority of the research on this disease. I'm not sure if I will get emails regarding a reply to my post so if anyone has ANYTHING regarding migraines and this condition please email me at shay.j.lang@erac.com. I am looking for answers and ideas. At this point I will try almost anything.

shay in texas

Kermit's Girl
New Member


Date Joined Mar 2011
Total Posts : 3
   Posted 3/11/2011 9:26 AM (GMT -7)   
I began having problems with muscle spasms- blepharospasms, hemi facial spasms, cervical dystonia and neck/ shoulder/ upper back pain.

I have had 2 rounds of botox, the last round was not beneficial at all. I got about 3.5 weeks partial relief. I am scheduled to have a third round in April with a neurologist instead of a pain doc. I have tried several different types of therapy, medication, injection, massage.... So far not much of anything has helped. I just began PT, my therapist was kind enough to advise me that I have mild- moderate bone spurs in c-4-5 and c-5-6. Those showed up on my MRI but the neuro didn't tell me about that, how nice... I have had a lot of mobility problems in my neck, shoulders dute to my trapezius muschle going numb, feeling like it's on fire, or burning like crazy. My shoulders have rounded forward to compensate and I have lost a tremendous amount of strength in my upper back. I have a tension headache for about 5 days out of the week. MS, Huntingtons, Wilsons were ruled out but I have some of the early signs of Parkinsons.... I am 27. Scary. I have been dealing with this now since I was 22. Aren't I a bit young for all of this?
I exercise regularly and eat well most of the time. I have a desk job which kills my upper back, but it's a pay check and health insurance.... can't get treatment without that.
Botox, baclofen (not much improvement), skelaxin (no improvement), klonopin (some improvement), Tegretol (ggreat improvement, highly allergic), Dilantin (still new, some imporvement), Celexa and Welbutrin.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 3/11/2011 8:35 PM (GMT -7)   
Hi Kermits Girl and welcome to Healing Wells chronic pain forum. I am glad that you found us but sorry that you have to be here.

I am going to ask you to start a new post here and do an intro of yourself so the other members will see it and be able to give you a proper welcome. Since this is such an old post it will get lost in the mix. All you have to do is click post new topic.

Take care and we look forward to hearing from you.
Moderator Chronic Pain Forum
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