Cervical instability

I've been having neck issues for over a year. It hurts all the time and I get pretty frequent headaches. But occasionally there are severe episodes where I'm screaming in pain and it feels like a knife turning at the base of my skull. My face goes numb, I can't see and talking becomes difficult. The last episode lasted over 10 hrs long. They're sure its not migraines. They think it's instability of c1 and c2, and it's possible I could need those fused. I have an appt in 2 wks with a neuro surgeon...but I'm nervous because I've heard that the instability can be dangerous because that's where your spinal cord and nerves are that control breathing, movement etc... Oh and since the last episode my arms have been really heavy feeling and achy. I can actually feel the bones shift in my neck if moved quickly. Anyone dealt with this??? or had c1-c2 fused???

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Plenty of zebras around who are fused. Search for threads on chiari too and you'll find mentions of fusion surgery.

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Dr/ geneticist is sure it is not CHIARI, so not even gonna go down that road, but thanks.....

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Just curious how the doc's came to the instability conclusion? I think a flexion and extension CT of the neck can show instability .... Is that how the doc's think you have it?

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It is a theory and it will need to be tested by tests. But given the symptoms and history and how common this is in eds it is probably the situation. The dr who suggested it is my geneticist who sees primarily eds patients and he's one of the ones who's really good with eds so I would trust him......

Plus being that I can feel the shifting and sliding.....even the PT agrees.

In my experience I'm better diagnosed hands on and by them doing manual tests. Most of my x-rays, MRI , and cat scans don't show much. ( ie: hand xrays , bone scans, MRI with fluoroscopy of hand showed nothing had surgery and I had a very bad tfcc tear with instability...

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I'm so sorry to hear you're going through this. I suffer from instability in C-2 and -3 and while I was told I'll probably need a fusion in the next 5+ years by my geneticist, my physiatrist agreed I needn't jump the gun. That being said, my symptoms don't cause the loss of vision. My heart goes out to you in hopes that you find the answers and relief you're looking for. Cervical fusions, like many other spinal surgeries, are potentially dangerous; however, any surgeon operating on you is going to be prepared for a smooth, problem free surgery. I would worry more about perhaps finding a second opinion before worrying about the dangers of surgery. Good luck!

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Thx Ellie....we won't just jump and have surgery but we want to be aware of what the true problem is. Previously I've been a martial artist, went on water slides and rolle coasters. We need to make sure I'm not doing further damage to my neck by participating in such activities.....

The surgeon were seeing is a good friend and we've saw his "work" first hand my uncle had a tumor no one could operate on and this guy saved his life or spared it for 2 yrs...

We will be getting second opinions, but when these episodes occur it scares the he$& out of me!!! The pain is worse than anything I've ever felt and not being able to see is very scary along with my arms aching constantly...ugh.....

Thanks again , I will keep you posted on what's decided...

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I have weird neuro symptoms and my Drs think I might have instability also - but not quite as serious as yours sounds!

There is a group on FB called EDS Neck Surgery Group - almost everyone in it has had a fusion surgery or has a family member who has... its a closed group, so you have to be added by the admin, but it might be a good resource for you

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I have a lot of instability in my neck, and have had fusion C5-C7 a couple of years ago.
Had the surgery due to severe stenosis, pressing on cord.
I'm still quite unstable, and have had episodes where I feel my eyes are affected. Recently, my right eye was watering. At the same time, there's usually so much pain that I can't think very clearly, and don't know how to describe the effects on my vision, just I feel that I can't see. When my spine untwists, I begin to get relief, and this subsides. It is awful.

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And, I should also say, my hands are beginning to be affected. My right hand has been quite painful most of the time in recent weeks. The pain corresponds with shoulder and neck symptoms. I think this is what scares me most of all. But I'm not going near a surgeon again anytime soon. I wish I did have a doctor who knew what is happening, however.

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I have similar symptoms with absolutely no pain. I feel my neck clicking around and my balance is completely thrown off by it. I
can barley hold my head up. The feeling in both my arms is off....its weird but it just feels like something vitally important is missing.

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Check out the recent post "electric shocks". I just replied to it. It almost sounds like you are getting a LONG version of what we have. I have "stabbing" pain at the base of my scull that's makes me screech out in pain.... Feels like a knife stabbing. Mine are short-lived (thank GOD), because it is absolutely debilitating when it happens. I'm so sorry, it is simply agonizing....

Unhinged

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I have dealt with this for the last twenty years. I managed it with chiropractic (I recommend a female because they are gentle and listen. Also on that can do manual traction- that is amazing! No cracking side to side that irritates it!) Massage and acupuncture help a lot too. BUT the only way to actually heal cervical instability is with prolotherapy- it strengthens the ligaments that are causing the instabili
ty. Fusion will cause more issues and pain. I work on people all the time with fusions- try prolotherapy first!! You may have to do 3-6 rounds but its amazing the difference. I don't think I've ever been this stable in my life!! Go to getprolo.com to find a doctor in your area and to find articles about cervical instability and prolotherapy. Go to someone from this site or a doctor that does this treatment All the time - itmakes a huge difference who you go to. Some docs do the treatment but it isn't their specialty and so the results aren't good and its more painful than it needs to be! Good luck! Try anything before surgery. People with EDS DON'T heal well from surgery and sometimes get much worse- I know all about it first hand!

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Thanks for your comment. I dont believe I'm prolotherapy, I'm actually very against it but im glad you've found something that works for you. I'm also not a believer in chiropractic care because resetting bones and then doing nothing to strengthen the muscles that hold the bones in is pointless in my opinion.

I've done acupuncture and it worked short term, also done massage, PT, and traction. As I said earlier we won't be jumping into surgery but Im 28 yrs old and don't want to have to walk around not being able to " live" my life and have fun and constantly be in fear that I could injure my neck and do permanent damage or worse become paralyzed.

I've had about 10-14 orthopedic surgeries that have bern successful! Recovery sometimes has been longer but I'm very glad I hammy shoulder tightened, knees reconstructed, etc... I think sometimes EDS patients are mis informed about surgery. You need a skillful surgeon who understands Eds and hypermobility. (ie: my surgeon always sews inside and leaves me in a brace longer to allow things to heal)

We aren't going to rush into anything but I want to be able to live life and not spend the rest of it worrying or in a neck brace. I've had many eds friends whos fusions were very successful and they would do it again.

Thanks for your comment I'm glad things are helping you improve quality of life. :)

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Sorry I haven't answered sooner as II have been in the hospital with bil. pulmonary embolisms. It has been rough. I am fused over all, occiput to C7 and L1 To S2. These weren't all don't at once but, as you know, the levels around the fused ones tend to blow out too and need another fusion and so on.... The ultimate answer is when you can't stand what it does to your ADL anymore, then it's time to get the surgery done. The process repeats itself so put it off as long as you can and then announce your decision and get it done.

Peace be with you!
Lexie

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Edsers can get cranial instability from the ocipitalatlantoaxial ligament being unstable.
My daughter gets the severe neck pain, and headaches, and has a slight c-1 shift, and mild scoliosis.
It progresses from instability, to settling, then eventually Chiari. Can also lead to dysautonomia POTS.
Which in my daughter's case it did. She is at the cranial settling, Chiari "0" stage. (not really a medically accepted term yet)
The pressure can cause many symptoms. I wish you well. Good Luck, Jess

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Saying you don't believe in Prolotherapy or Chiropractic is like saying you don't believe in the sun rising.... it's science. period.
If you don't want to try a treatment, I understand that. Many people are not educated about Prolotherapy (or chiropractic); most Orthopedics are not. It isn't something they are taught in school, but requires training after they are already doctors. They don't make nearly as much money doing Prolotherapy treatments as they do surgery.... so you can see how many doctors would choose the money of surgery over continuing education that costs more, makes less, but is the better option for many patients.
That is why top athletes in the country are finally beginning to use it when surgery isn't necessary.

http://getprolo.com/prolotherapy_newspapers_magazines_radio_tv.htm

http://www.prolotherapynashville.com/downloadables/Prolotherapy_and_the_Ath lete_%28Article%20written%20by%20Dr_Johnson%29.pdf


You are correct that Chiropractic doesn't strengthen the muscles (though it isn't the muscles that need the strengthening when it is the ligaments that are overstretched and damaged. Strengthening muscle is good, but does not fix the underlying problem, which is the lax ligaments). When you have lax ligaments, that allows for the bones to shift into unnatural positions and cause pain. So with laxity in the cervical spine, as an example, the bones have moved out of place because the ligaments can't keep them where they should be. By getting an adjustment it relieves the strain on the tendons and muscles that are being overstretched because the ligaments can't do their job, thus helping to relieve the pain. No it does not fix the laxity- that is what Prolotherapy and PRP do.

http://www.prolonews.com/ehlers-danlos_syndorme_fibromyalgia.htm

http://www.medicalzebras.com/cranialsettling.htm


Massage, Acupuncture, Chiropractic, PT.... all are management tools. NONE fix the underlying laxity in our ligaments. But I will take whatever pain management tools there are that don't include pills and surgery.

"Massage certainly will not reprogram defective genes so connective tissue becomes stronger. However, if it is carefully applied and limitations in range of motion and skin health are respected, it can be a wonderful additional strategy to deal with the chronic joint pain and muscle spasm that frequently accompany this disorder (EDS)"
http://www.massagetoday.com/mpacms/mt/article.php?id=13874

"Im 28 yrs old and don't want to have to walk around not being able to " live" my life and have fun and constantly be in fear that I could injure my neck and do permanent damage or worse become paralyzed."

At your age I had already had four surgeries, but I didn't know I had EDS or I wouldn't have.
Trust me when I tell you by the time you are my age- 42- you will feel every one of them. I used to be a personal trainer, competitive athlete. I used to ski, snowboard, rollerblade, mountain bike, hike, rock climb, ride motorcycles and four wheelers... pretty much anything that was an extreme sport or challenging, I did. Surgery or not, this disease progresses and the more injuries, the more surgeries you have, the more you will struggle as you grow older with this. I know no one wants to say or hear that but it's true. As I aged, I got hurt more and more easily. Every injury became easier to re-injure. A couple of the surgeries helped (some definitely made it worse) for a limited amount of time. Surgery is more trauma to the body, especially to one that already has a harder time recovering than a "normal" person. You may not "believe" in Prolotherapy but i implore you to open your mind to treatments that may be "out side your box" right now because they not only have scientific merit, they are much easier on the body than any surgery. I also had the BEST surgeons in the country- the Hospital for Joint Disease and Special Surgery in Manhattan.

Leaving you in a brace longer just lets the muscles atrophy more???? That's better? It's proven that the sooner you begin movement the faster you heal. Ligaments have poor blood supply so the less you move it- the longer it takes to heal. Sounds like your doc is in the dark ages. Water therapy is always a good way to get moving faster. Check out an aquajogger for deep water running- no impact- it rocks.

http://www.prolonews.com/ligament_injury.htm



I'm not misinformed about surgery and EDS. It is something that I spend a ton of time researching because of how the last two surgeries at 25 and 26 crippled more than healed me. It is actually how I came across Prolotherapy treatments and the power to heal what the Orthopedics could not.

"Difficulty with surgical wounds — stitches may tear out, or healing may be incomplete"
http://www.mayoclinic.com/health/ehlers-danlos-syndrome/DS00706/DSECTION=co mplications

EDS surgery-related complications Likelihood: Hight Timeframe: Variable

https://online.epocrates.com/u/2952570/Ehlers-Danlos+syndrome/FollowUp/Comp lications

http://www.arthritisinsight.com/medical/surgery/eds.html

"We aren't going to rush into anything but I want to be able to live life and not spend the rest of it worrying or in a neck brace. I've had many eds friends whos fusions were very successful and they would do it again."
That is great because I work on spinal fusions all the time and it's a 50/50 chance of better or worse from what I've experienced in the last decade. There are no guarantees with surgery and the damage that COULD be done is way greater than any from trying Prolotherapy or PRP.

http://www.livestrong.com/article/216847-complications-from-cervical-fusion /

http://www.medhelp.org/posts/Neurology/post-op-cervical-fusion-complication s/show/11544

Truly the list is long, but the most common I've seen is increased pain, nerve damage (numbness, tingling, inability to lift things or turn head), non union (which requires more surgery)

"Surgery is much more difficult due to stiff deformity and is connected with significant risk of serious complications [5,6]. That is why individual approach to the treatment of these patients may be advisable. However, there are limited number of studies describing late results of operative treatment in patients with Ehlers Danlos syndrome."
http://www.scoliosisjournal.com/content/5/1/26

Surgical treatment should not be undertaken in Ehlers-Danlos syndrome unless symptoms are severe.
http://www.orthopaedicclinic.com.sg/dictionary/ehlers-danlos-syndrome/

In rare cases, surgery is recommended to repair joints damaged by repeated dislocations. However, healing from any surgery is difficult when you have EDS.
http://www.mayoclinic.com/health/ehlers-danlos-syndrome/DS00706/DSECTION=tr eatments-and-drugs

Good luck to you and whatever you decide. Education is the key. Don't just trust what your doctors tell you: research it. That is my advice to my clients Always.

Deborah Marasco, LMT, PT

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Wow!!! I didn't ask the question to be attacked or told that my beliefs are wrong. Call it you want but I don't believe in prolotherapy.
I've had numerous orthopedic surgeries that were all successful and I don't regret any of them.

And from the bottom of your name your credentials aren't that of an orthopedic surgeon and yes leaving the joint in a brace longer allows it to heal and for the surgery to be more successful, the muscles are already atrophied from surgery..

I research everything as well as have a medical background myself I don't need you to quote several sites that may or may not be correct. Even my geneticist who is well known and one of the ones who get eds commented on how phenomenal my shoulder surgery was and that surgery isn't always bad. Again I believe your misinformed- just because you read it on the internet doesn't make it true.

And at my age you'd had four surgeries well I've had about 10-15 already. I get this eds thing and my surgeons and whole dr team get the eds thing. I'm well informed about my decisions and have spent hours researching my decisions and talking to other eds patients who've had surgery.

This site is meant to ask questions and get other people's experiences and opinions not to tell them do this or do that and then to lecture me about my beliefs. If you love prolotherapy great, I don't and nor do I believe in it!! Yes I said I don't believe in it.

I feel I was very polite in my response and told you if what you're doing is working for you- great!!! Please respect my opinions and don't come back at me attacking or telling me 6 different articles to read about this or that.

The thing about eds is it effects each of us differently and we all respond differently to different treatments.

Again, thanks for sharing and I'm glad your quality of life is improving!!!

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Sorry it seemed like an attack.

I just think it's lack of education about Prolotherapy; that is why surgery is done so often. Orthopedics are NOT educated about it and it is a threat to what they do, so they don't inform patients correctly. I know more about than most doctors do because they aren't taught ANY of that information in school. I'm glad that surgery has worked for you. But it is an extreme answer to many injuries and they aren't necessary. And I may not be a doctor but I have worked with people for the last two decades that have not healed from surgeries correctly. They end up on my table all the time. It's sad, but true. You are very lucky if you have had that many surgeries and done well with them all because that is rare.

If you read my links they are mostly from medical websites and reputable news sources. I've been researching for the last decade about Prolotherapy. I've been my own guinea pig to prove the doctors wrong. And it does work. Very well. I'm sorry to see people passing on misinformation about it, especially on here. Since so many of EDS patients do have negative results with surgery. You read about it over and over again. And the medical journals back that up. So I guess I am pretty serious about speaking up for a treatment that could save people from surgeries that cost 10x more than treatments do and the recovery is less painful and time consuming with MUCH smaller risks.

http://www.caringmedical.com/media_blog/Alternative_to_Surgery_for_the_Self -Employed.htm

It has strengthened both my ankles and kept me from surgeries, repaired my knees from injuries and past surgeries, kept me from having surgery on my shoulder and wrist, it's healing my hip from the surgery that hurt it more, and it's strengthening my cervical spine better than it's been in 20 years. You may not believe, but I am living proof and I truly hope some that read this research it and give it try instead of believing surgery is their only option.

good luck with whatever you do.

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I've put up with cervical instability for over 40 years now. I'm talking cracking and crunching through the whole set of cervical vertebrae and beyond. I do know what those stabbing, blinding headaches can be like. And they are scary - can't see, can't think, maybe not even move well enough to pick up a phone.

FWIW (and not to invite further debate), and choose not to do prolotherapy and I choose not to do chiropractic - not for lack of education, but because these things don't do well for everyone and can do harm to some.

For me, the issue is a herniated disk at C-3/C-4 and monster osteophytes at C-5/C-6. Another option was facet blocks, which I did a few times until I finally met a level of incompetence that sent me in another direction. They did offer some extended relief, but of course do nothing for strengthening muscles. (The very best day was the day the facet blocks were done, because of the lidocaine they inject, btw. Then a week for the 'roids to take full effect, then a gradual slide back to where I started.) The times between one procedure and the next? Just like it was before I had anything done. Those muscles were weak before, and are weak now. I haven't got the strength or the hormones to do what those no-neck weightlifter guys do with neck muscles. If only!

My ultimate preference would be disk replacement, which has been done for years in Europe now and is making headway in the US now. But here's the thing of it - whether disks get replaced or fusion is done, it's always with the near certainty that whatever is above and below will pay the price with collateral damage eventually. Last I saw, the numbers on the success of fusion in EDS III people was not great. And when disks are replaced, that is done with a kind of metal cap on the adjoining vertebrae - not so very different from trying to put rods in those bones, but with a whole lot less historical data to look at so far, but that should improve in the near future.

I will still go in the direction of disk replacement given half a chance. I'm entirely willing to take the risk because the alternative of not taking the risk has reached a point that isn't really much of an improvement on a bad day. Meanwhile, I avoid needles by seeing a first-rate osteopath who can get the same results without a needle. He knows that the ultimate solution has to be surgery, and is bent on keeping me as comfortable and functional as possible until we get there. I've got some nasty nerve impingements in my shoulders now, so my general plan is to work it out one thing at a time. When joints are this unstable, each thing affects the next very easily. I'll start with the shoulders because of the lower risks and greater probability that I can at least compensate partially for the neck if my arms at least work. Although, there's no escaping the fact that they are all connected and will affect one another no matter how I proceed.

Anyway - you still have to roll with what is best for you given YOUR situation. There IS no hat trick here. We're gonna have EDS no matter what therapies or corrective surgeries we choose. I don't intend to be negative about it, just realistic. We reach points where we simply have to do whatever it takes in order to have a shot at anything approaching the happy and functional lives we want.

I don't know your age, but a lot of this stuff was not even available when I first started having trouble, even had I been taken seriously at the time. (I wasn't, of course.) Do whatever you have to do to get some immediate relief, but think about the future once you get your brain working again. In that sense, it's no different than most major decision in life. If you can attain the luxury of being able to do some serious reading and making a thoughful decision instead of having to take an emergency action, go for it! I know that may seem impossible at times, but that's the pain talking.

If you can get even temporary success with a method that stops short of taking the heavier risks, give it a shot. Picking a practitioner can sometimes be a whole lot like deciding whether to marry someone. That person and their actions can affect the rest of your life. It's bound to be more than a little nerve-wracking at times. But you can probably trust your own instincts IF you aren't being driven by pain and fear when you do it. That situation makes for something more approaching a shotgun wedding, and those don't usually turn out well.

Best to you!

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