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My Battle with Cervical Dystonia and Klippel Feil Syndrome

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Old 05-30-2012, 06:15 PM   #1
Join Date: May 2012
Location: Cornelia, Georgia U.S.A.
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majacks HB User
My Battle with Cervical Dystonia and Klippel Feil Syndrome

Really dont know how to begin but I would love to find someone with new suggestions for pain relief. After suffering from headaches since I was about fifteen and being treated for Migraines for years I was finally diagnosed at 35 with Klippel Feil Syndrome which is coupled with Cervical Dystonia. For the past 5 years since, I have tried Botox injections, Steroid injections, several pain meds,Chiropractors, Massage therapy, you name it! All to which I receive only temporary pain relief from the headaches and muscles spasms in my neck and shoulders. However, some days are better than others and I do count each good day as a blessing. I have to stay very active as a Mom of two teenagers who participate in many different sports. So its Run, Run, Run.
I am currently taking Lyrica and Elavil daily in conjunction with Tramadol as needed. No narcotics because I work in Surgery. Yes, a Surgical Nurse with chronic pain! Heat seems to help with muscle pain but I often don't have access to it during the day. And Thank God for Excedrin which for some reason helps me more than anything else for the migraines! I usually end up taking it daily as well, which I know is not very good for my stomach and I usually follow it with a Zantac to protect my stomach! So... One issue seems to redirect to another. So frustrating! Which leads to stress, which leads to tension in my neck and shoulders and were back to the beginning. Just as I sit here typing I can feel it causing a pain in my neck and down my shoulder to my elbow. I saw this site and thought I would just read a few messages and it seems there are others out there after all! Please respond with any personal experiences, suggestions or just good humor!

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Old 05-31-2012, 01:36 PM   #2
Join Date: May 2006
Location: Phoenix, AZ
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jujuz HB User
Re: My Battle with Cervical Dystonia and Klippel Feil Syndrome

Hi, I'm Julie.
I had to look up Klippel-Feil Syndrome, and I'm sorry, it must cause you much pain. I have cervical dystonia with tonus. Mine is intermittent. I have systemic lupus and trigeminal neuralgia. When I have a tn attack with all 3 branches of the trigeminal nerve, I also experience cervical dystonia with tonus. Not only is it surreal and the most painful horrific condition I've ever endured, I've often thought my neck would become permanently paralyzed that way and it's terrifying.

To complicate things, perhaps it's the perfect storm of symptoms that caused the dystonia in the first place, my docs disagree, but I also have pretty severe osteoarthritis in my neck. Since I already experience cranial neuropathies, (TN, geniculate neuralgia, problems with distortions in taste and smell, Bells Palsy twice), I found information that cranial nerve 11 also called the auxilliary nerve controls the muscles in the cervical area that can cause cervical dystonia. I'll share my info/research with you if you like.

Now, on to what I do for the treatment. I take anti-seizure meds for the tn and it helps somewhat with the dystonia. Since my problem with the tonus is intermittent, the neck pain I have most of the time is from herniated discs and bony spurs (OA) cervical C2 to C4) My pain mgmt doc says its a mess back there. My rheumie says my peripheral neuropathy and cranial neuropathies likely come from inflammatory process of lupus attacking the myelin sheath on my nerves causing the neuropathies.

Anyway, my pain mgmt doc gives me rfa's and they are LIFESAVERS. I used to have cortisone shots back there. At one time the pain in my neck was so bad I had a radiculopathy with it all the way down my left arm and I was hunched over in pain. Yelling. I was laying on BURNING heat pads to keep from screaming. I get radio frequency ablations every 8 months on both sides. It gives me back quality and movement in my neck. I have other pain to worry about and a family and some work and there's no way I can handle everything. It's a huge help.

Here's a snippet I put together about cervical dystonia and cranial nerves: Accordingly, trigeminal neuralgia as a result of disc herniation, disc bulging, spondylolisthesis and spinal kyphosis or slippage, amongst other conditions, can be responsible for serious problems with the innervation of the face, jaw, and pharynx. Facial pain, jaw pain, neck pain, problems with chewing and swallowing, a sensation of a lump in the throat, and muscular spasms in the face, jaw, and neck can all result from compression of the cervical spinal nerves.
Cervical Spinal Nerves

The hypopharynx’s uppermost point is at the hyoid bone, which lies at approximately the same level as the 4th-6th cervical vertebrae. The pharynx is innervated by a number of nerves with their roots in the cervical spine. Damage to these nerve pathways can result in problems with the correct functioning of all three sections with ramifications for proper control of the separation of the larynx and oesophagus. Faults in innervation, both motor and sensory, in this area may prevent the two pathways functioning properly.

I hope that helps. btw I found your post because I have google looking for blogs on cervical dystonia for me. Theres hardly any of them and when I find someone like you I get excited! Much Love, Julie

Last edited by moderator2; 06-01-2012 at 04:46 AM.

Old 06-02-2012, 07:25 AM   #3
Join Date: Nov 2010
Location: Phila, Pa, USA
Posts: 1
neverendinglove HB User
Re: My Battle with Cervical Dystonia and Klippel Feil Syndrome

Anyone from the Chicago area?

Old 06-02-2012, 09:11 PM   #4
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dedwards HB User
Re: My Battle with Cervical Dystonia and Klippel Feil Syndrome

I know how it is to try everything possible to help relieve the spasms and the headaches as well. I been taking Soma 350 mg 3 times a day for the last 8 yrs. Also when the muscles get real tight in my neck and causes me to have a headache my husband comes to the rescue. He massages my neck until he finally gets the knot out. I don't know if this will help but maybe you'll find some relief.

Old 06-27-2012, 06:19 AM   #5
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powergrub HB Userpowergrub HB Userpowergrub HB Userpowergrub HB User
Re: My Battle with Cervical Dystonia and Klippel Feil Syndrome

I have found that a foam roller used correctly can alleviate a lot of pain.

I purchased my foam roller from my physical therapist - I asked to purchase it - it was not something that the PT was trying to sell - in fact the PT told me to go to Amazon and get the softest one to start with.

It looks like a log of hard styrofoam and it enables you to do myofacial muscle release to yourself - like giving yourself a massage -

You lie on the roller and move around (directions come with it) and when you hit a tight muscle you lean into it - more pressure for as long as you can stand it - and the muscle knot releases etc....

Same concepts as massage but you are able to do it to yourself - it is a miracle for me.

I know it will help you to some degree -

When I first started I would cry while I did it because my muscles were so tight - but I stuck with it - and now I have graduated to a harder foam roller with nubs - go slow - and do it daily -

Good luck!

Last edited by powergrub; 06-27-2012 at 06:21 AM.

Old 06-29-2012, 03:09 PM   #6
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dedwards HB User
Re: My Battle with Cervical Dystonia and Klippel Feil Syndrome

I'm lucky and my husband tries to massage the muscles that get real tight and start giving me a headache. There are also times they get so tight that I just have to give him to rub which seems like he has to massage them everyday.

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