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Unstable neck?
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Unstable neck?

I would be forever grateful for any insight.

ME:
I am a 43-year-old female with lots of neck and head pain, very stressful life (self-employed, single mom/no support of any kind, **** HMO)

RELEVANT MEDICAL BACKGROUND:
*  Car accident 26 years ago (age 17) that I learned 1 year ago apparently left a fairly sharp "westward V" (pointing to my right) in my spine around T-1 and T-8 (logical to me as it could correspond to point of impact); doc thinks scoliosis. Disc height looks OK, no ruptures; cervical curve is reversed. (Did not have back or neck pain/problems following the accident; have never had a back problem)

*  Lots of dental work related to accident knocking out several teeth (root canals, crowns; now redoing much of it)

*  Neck stiffness (attributed to stress) that started about 10 years ago; occasionally my neck would go "out" (at 1st occurrence, went to internists who prescribed 3 kinds of pills and heat; got worse; then started seeing a DC)

*  C-section with spinal 4 years ago (no complications)

*  Whiplash injury 3 years ago that exacerbated neck pain (1st neck X-ray taken at this point; trouble spot noted at C-5, but no rupture)

*  Successful sinus endoscopy 2-1/2 years ago (alleviated much of the facial pain due to 100% blockage on right side)

*  Had gone to a DC for 10 years who mainly does 30 minutes of trigger point massage, and adjusts only occasionally when neck vertebrae were obviously out

*  14 months ago, started seeing a 2nd DC who found the spine bend on X-ray; he thought that is a major cause of my neck pain, and said he needed to first create more flexibility in my neck, before working on strengthening it.  Since then, until recently, twice a week, he has adjusted my back and neck (in 2-3 spots). He did teach me several good exercises to do for stretching and strengthening, but because my neck started going out more and more frequently (became pretty much a daily experience at the slightest movement), it was painful and somewhat scary for me to do them.

*  1 year ago, lots of pain from TMJ. Gatekeeper doc refused to refer for an MRI because I hadn't had the pain long enough -- even after a TMJ specialist took X-rays that showed a problem. I charged the MRI, which showed degeneration and disk displacement on both sides, and so bad on the right side that surgery probably won't help. Wearing an appliance at night which is helping; still wake with some pain from the TMJ problem, but not nearly as frequently as before. Started taking a mild muscle relaxant (from the TMJ doc) at night a month or so ago.

*  10 months ago, started having what I first thought were severe migraines, and by June, sometimes 2 a week. Gatekeeper thought they were migraines from my description, even though he asked me no questions about time of month they occurred or food triggers, and even after I said I always wake up with them, which I understand is rare for a migraine. My symptoms often include reflex vomiting literally for hours (I suspect displacement of the vagus nerve); severe pain and disorientation; unsteady, slow gait; labored-sounding breathing; light sensitivity; lightheadedness; inability to do simple tasks like comb my daughter's hair. Every time this has happened, my C-1 has been out, and I feel better after a DC sets it. I think it must shift when I sleep.  No episodes for a couple of months (an no C-1 displacement), thank god. (Could this be due to the muscle relaxant?)

*  4 months ago, saw the gatekeeper internist for neck pain; brought X-ray. He said I had to learn to live with pain and suggested Advil. (Am I living a sitcom or the Twilight Zone?) Would not refer to a neurologist. Badmouthed DCs.

*  3 months ago, went to a pain specialist who said I had early-stage fibromyalgia and thought my scalene muscles were too tight, contributing to my neck going out so frequently. A few weeks ago he deeply anesthetized those muscles on the most painful side (right) and a PT did exercises that I normally could not do. Further PT was recommended; I hope to do so later (insurance problems getting a referral), and I am trying to do some exercises regularly on my own. The procedure seems to have helped, but I think hypermobility in some cervical vertebrae may be the bigger problem. He also put me on high-dose guaifenisen, partly for digestion problems (long story), along with digestive enzymes. Digestion has definitely improved. I have had less pain since taking the guaifenisen which some theorize may break up lymph congestion near trigger points (separate long story). Seems harmless to try, in any case, and chiro #1 often mentioned, during massage, that he felt swollen lymph nodes in my neck (and I wasn't sick). Could try targeted botulinum injections to further relax overly tight muscles.

*  For the past 10 months or so, I hear lots of gurgling sounds at the base of my head every day. And when I go up stairs, upon landing on my right foot, I always hear strong swishing sounds. Gatekeeper discounted that; said people with neck problems hear weird sounds. (When I said I've also started hearing ringing in my ears, he said, "Everyone has ringing in their ears.") My neck makes cracking sounds fairly often, too -- sometimes, it means something has shifted, sometimes not.

*  Last week, I was diagnosed with bicipital tendinitis (w/ sprained and strained tendons and ligaments) in my right shoulder -- had incredibly intense, burning pain in my right shoulder overnight; used ice packs to try to numb it. The extreme pain came on suddenly, but I have noticed progressive weakness in that shoulder (drop bowls frequently, last time I did a hand-grip strength test, I could not hold the grip instrument without help). DC suggested ice as needed and regular self-massage in that shoulder; said injection by an MD would promote calcification. Also said sleeping on that side for another 40 years might not be such a good idea! (Is that a clue to neck problems on that side?)

TODAY + MY DIAGNOSIS:
The first 6-7 months of this year were the worst for pain that I've ever had, including the first-time-ever migraine-type pain, and neck instability.  Past couple of months have been somewhat better. I always wake up with the level of pain I will have for the day. Have tried various cervical and other pillows and prefer the Sobakawa kind that I can shape.

I think I have a mix of excessively tight muscles and some joint capsules in my neck that are "too loose." Sometimes picking up a pen off the floor, reaching, or even taking off a jacket can pop out neck vertebrae. I am absolutely petrified of moving my C-1.

PLEASE HELP:
I don't know what to do or who to see. Doctors tend to hate chiropractors, so I can't imagine finding one open to my C-1 theory, for starters. At least chiropractors give me temporary relief, but I know I need to see a competent MD who can pull all this together.

This is seriously impeding my ability to work and be a parent, let alone have a life outside of that. I wake up each day in absolute fear to learn what kind of pain I will have, whether I need to cancel client appointments, find a way to be a parent or just get through the day. Some of my basic ADLs are extremely restricted and this whole experience is changing my personality. The pain can be horrible and no over-the-counter pills even make a dent (not even Advil!).

Can being overweight over-stretch neck muscles and cause problems like these? Problems (sinus, TMJ, neck and shoulder) have been worse on my right side. Seems significant, but how do you separate cause and effect? How do I find the right practitioner -- knowledgeable in all these areas and open to new treatments, plus does not call every practitioner outside his own specialty a quack? I am trying to pull best practices and good ideas from various professions and practitioners, but I need help, at least in execution.

Many, many, many thanks. If you can figure this one out, or point me in the right direction, I'm nominating you for the Nobel.
Related Discussions
Avatar_n_tn
Dear Pained:

I am not sure I will be too helpful.  Sorry that your current state of health isn't optimal and all the pain and suffering you are going through.  One point, since they did the MRI for the TMJ, did they get a view of your C-spine?  Laxity in C1/C2 can occur in things like rheumatoid arthritis.  The C1/C2 joint is not the typical vertebral synovial joint but is like a ball and socket where C1 rides ontop of C2.  I am not sure how one manipulates this since it if more or less free flowing to allow the head to turn.  I think I would push to see a neurologist who will be able to try and fit the picture together.  Changes in the C-spine, whether degeneration or trauma induced can be related to headache, extremity pain and numbness, weakness, etc.  You should be able to use the fact that you have curvature of the spine, or scolosis and the pain you have may be related to the scolosis (especially if it is getting worse). At least you should be able to get a MRI of the spine.  Also maybe some starting labs such as B12, folate, CBC, sedimentation rate, ANA etc.

There are some things that you can do.  First is to continue with the pain specialist and PT.  The chiropractor you will continue with anyway.  I would also recommend loosing some weight, you made it sound like your overweight.  A better diet and structured sleep might help your state of mind alittle.  Exercise, even if it is minimal will also help your overall outlook on things.  

I hope that things can begin to get sorted out for you.

Sincerely,

CCF Neuro MD
14 Comments
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Avatar_n_tn
Thank you for taking the time to respond. Do you think I truly am having migraines?
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Avatar_n_tn
You sound like you are describing me!!  I have had the same problems (migraine-type headaches when I wake up, TMJ, severe pain in the right shoulder and down my back...my neck's a mess.  The tightness in my face & neck muscles is also causing blurred vision.  Started when I fell down a flight of basement steps 10 yrs ago, neck has been aggravated by 2 rear-enders; I've also had fibromyalgia for 15 years (I'm 44 now).  I'm my sole support, have to work full-time, the headaches are driving me crazy, and I have no life outside work!  Stress makes the headaches worse...it's a vicious circle, isn't it?
Sometimes fluorboprofen helps (presc. anti-inflam.) and sometimes chiropractors help...I'm seeing a neurolgist finally late Nov.If you want to keep in touch, I'll let you know what if I find something that helps, if you could do the same!  Good luck!!!
(By the way, who is the gatekeeper you refer to?)
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Avatar_n_tn
Thanks for replying. I was hoping someone would. While I wish this pain onto no one, it is comforting to know that I am not the only one with this conglomeration of symptoms. When I say "gatekeeper," it's the internist I must see according to my HMO. The gatekeeper, a member of the HMO's network, is supposed to coordinate all of a patient's care, and is the person who decides if a patient can see a specialist (a way to save $); an official referral is needed. I have yet to get a referral to a neurologist but will plead my case again in a couple of weeks when I go back.

I would love to stay in touch somehow. Not sure if the site administrator could relay an e-mail address from one of us to the other.

I did have a weird experience today. A tooth crown fell off Saturday (of course on the weekend). Went to the dentist today. Needed 4 shots of novacaine to numb it sufficiently, including one down thru the hole in the tooth because the drill hit close to the nerve several times and I felt it. When I drove home, I realized I didn't have any pain, and before I went and while I was there (as every day), I had a headache, facial pain and neck pain. Even after the Novacaine has worn off, I feel pretty darn good. I'm sure I'll wake up with it again in the morning, but that was bizarre. I wonder if that deep cavity under the crown -- on the right side, as with everything -- played a part. It is so frustrating trying to figure this out. No doctor seems to take an interest or looks at it holistically. I even wondered if all the fillings in my mouth has an impact. My dentist says we are exposed to more mercury in a can of tuna than from having a filling.

Hope you feel better. Thanks for responding.

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Avatar_n_tn
Hi again.  I would also like if we could correspond outside of this venue.  How do we find out?  
You must be from the states, as it sound like you have a different medical system than we have in Canada.  
Let me know more about whether the pain continues to subside...maybe the novacaine is still in your system?  
By the way, have you ever tried accupuncture or biofeedback? It's all so expensive!  Do you have the added frustration that no one believes your condition?
Take care...Karen
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Avatar_n_tn
One of you leave your e-mail address at the site so the other can get in touch with you.  It's just that simple.
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Avatar_n_tn
Hello --

I sent an e-mail to the site administrators Monday evening with my e-mail address and asked if they could forward it to you.    I'd prefer not to post it here, but I'd sure like to talk with you about this some way or another. Sounds like you could really understand what I am going through.

To answer your question, I tried acupuncture once with no success. Granted, I should try it more than once. Haven't tried biofeedback. Everything I do I must pay for out of pocket, so I've been keeping it to the basics as much as I can. Yes, my main doctor (who I refuse to see again) either doubts what I tell him or he is so uninformed that he's embarrassed to hazard a guess or simply doesn't know what to do. Yet no referral to a neurologist. He just said I have to learn to live with pain, and do so without any pain pills. If he had one hour of the pain I experience regularly, I think he'd be waiting for the pharmacy to open.

Have you been diagnosed with migraines? What did the doctor say about the fact that you wake up with them? Do you know if your neck vertebrae have shifted when you wake up with them? Does any medication help? Until recently, I didn't have anything. After a month of pleading, I finally have a prescription for Imitrex (I said I was willing to try **anything""). Fortunately, I haven't had one of the episodes since I got the prescription, but if it is spine related (vs. vascular in origin), I don't think Imitrex will do anything. But I'll try anything.

I'll check back here regularly; the whole site is great. Take care.
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Avatar_n_tn
Yes, I'd like to get your e-mail confidentially and correspond.  I may be off work next week for awhile, though, as I may be getting into the hospital for Physical Rehab. (a last desperate measure!), and I only have a computer at work.
My doctors does call the headaches Migraines...no speculation as to why I wake up with them, but I think that poor sleep (due to fibromyalgia) contributes to my waking up with tense muscles; I may be clenching my jaw, for example.  The things that sometimes help (in the early headache stages) are prescription Flurboprofen or Fiorinal or Clonazapam, but you can't take this stuff very often.  I would like to know if Imitrex helps.
Talk to you soon, hopefully!
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Avatar_n_tn
HELLO SOUNDS LIKE YOU ARE GETTING WHAT I GOT FOR 17 YEARS ALOT OF QUACKS THAT LIKE THERE BANK TO ROLL!!!!!!!  FOR REAL LOOK UP QUACKWATCH.COM,  THE DOCTORS NOT ALL ARE OUT THERE TO CONFUSS US MORE AND MORE YOU SHOULD HAVE GOTTEN THIS **** STRAIGHTENED OUT!!!!!  I LOST MY BUISNESS,CARS,LIFE,HOUSE BECAUSE I RAN AROUND TRYING TO FIND ONE WAY TO RELIEVE THE PAIN SO I COULD WORK OR JUST WALK MOVE I WISH I WOULD HAVE FOUND THIS DOCTOR WHEN I OWNED MY BUISNESS TRY THIS DOC HE WILL FIND OUT THE PROBLEM 1-410-653-2403!!!!!!  I KNOW HAVE SCOILOSIS,SCLEROSIS OF THE SPINE,HERN C34,56&7,HERN L34,56 AND COLLAPSED L34,56, LESIONS AT T12,L12, FORAMINAlL STENOSIS,SPURS THAT ARE HYDROTROPHIC IN MY NECK & BACK& DEGENERATIVE BONE DISEAse
that should have been takes care of on my fifth doc& know on my 250, i am finally finally getting somewhere .  my queistions are getting answered with polite person to person no doc terms that are blown out or up and he desribes what how when where,  and he believes you about  pain if scans,mris,,  show something he will listen.tey him email me ***@****
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Avatar_n_tn
Karen:

Sounds very familar.  Since you have fibromyalgia you probably have what is called "myofascial pain syndrome" as well.  It started at the back of the head, a knot next to your spine and the pain radiates to your shoulder, up your head to the front, to behind your eyes, forehead, jaw, and facial bones.  You always feel like you have a sinus infection and even your ears and scalp hurt.  Ask your doctor about getting Liodcaine shots in the knots--you'll need to see a Neurologist for that.  The headaches are 20 times worse than a migrain.  It will only get worse--mornings can be awful when you awaken with a headache.  They simply happen.  See about PT as well.  Good luck.
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Avatar_n_tn
I too have had these same symptoms for approx. 11 years. Have had 2 car accidents, one w/severe facial trauma, other whiplash. MD's now suspect that's the cause. For 8 years it was blamed on sinus disease. Had to sinus surgeries, 1 in '94, another in '99.  No relief from headaches, etc.  Have been diagnosed with fybromyalgia as well as TMJ.  Oral surgeon wants me to wear mouth splint  24 hrs/day (I clench my jaw 24-7 from headaches/muscle tension), however, insurance doesn't pay and just getting the splint, excluding follow-up appt's is $2000.  Between 2 sinus surgeries, 8 mos. to pain clinic for trigger point injections in temples, back of head, neck, shoulders, back, which did not help at all, and physical therapy for 9 mos. 3x/week (which I have recently started again), I'm pretty much frantic over my financial situation (single parent).  For past several months have been seeing a D.O. who does painless(never had anything done that was painless) manipulations which helped for a couple of days at 1st, but have now stopped alleviating any pain.  I wake in the nite with severe pain in neck, shoulders, temples, eye sockets, and it lasts all day. For over a year I took extra strength (750mg) Vicodin up to 8x a day along with Demerol.  Got worried about all that and requesteed something else (had severe withdrawals).  Was on Neurontin, Flexeril, Prozac and Fioricet at same time, still had severe pain, was just all drugged out and "floaty" feeling from what I finally determined was the Neurontin.  Now I just take Fioricent, Allegra and Celexa lose dose to help me sleep and allegedly help me "manage the pain"  HAHA!  In going to physical therapy again 2x in last 7 days, I realize the most severe pain I feel (other than eye sockets/temples) is at the base of my skull.  All I get at PT is deep massages to try to relax my muscles which are like bands and balls of steel.  I didn't realize until the PT started deep massaging the base of my skull how badly that area hurts.  Maybe I should request xray of spine/neck???  Or would that be just another waste of $$$ I do not have???  Any suggestions/ideas and information about how you are progressing would be greatly appreciated.  I too am so very exhausted just trying to work - forget about a social life.  I feel so bad that about the only thing my daughter sees me do is lay in my recliner immediately after work.  Very depressing indeed.  I hope you've found some solutions:)
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Avatar_n_tn
We seem to have a lot in common.  I would love to exchange e-mails and talk more about our situation, what has worked, what hasn't, etc.  I will be able to access messages through ***@****.  I hope you send me an e-mail address where I can reach you.  Thank you very much!
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Avatar_n_tn
For the past 4 months I have had severe pressure behind my eyes and pain upon movement. It's there all the time and is causing me to lose hope in treatment. I went to an OPTHO and he said I had possible glaucoma and my optic nerve is swollen behind right eye.And Ihave very bad blurry eyes at times.
At any rate I was sent away and set up to see him again in 4 months. I had a CT scan done and came up negative.
This is really bothering me and most of all ppl around my do not believe me. I am tired of this pressure that is present from sun-up til sun down. I am only 19 and have no health insurance and am having to pay out of pocket fees for everything.

I clench my teeth all day I have noticed and my jaws ache and pop. I have no clue but could this be related? Everything is exacerbated by my in-front-of computer job.

No pain medications take any of it away!


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Avatar_n_tn
Hi, Kendrea.  Don't know about the optic nerve problem, but the clenching and jaw aching and popping are most likely TMJ related. Most dentists should be able to fit you with an occlusal guard to help keep you from clenching your teeth, which should help relax those muscle and therefore, relieve some of the aching and popping.  As with all areas of medicine, choose your dentist carefully, and if you are not comfortable with what you hear, get another opinion.  I speak from personal experience with the TMJ problems and I work in the dental field.
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Avatar_m_tn
A related discussion, Unstable Neck? was started.
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