Hi...I understand ur frustration with drs and the chiari, stinosis dx......I was told my symptoms were not the chiari....I have finally been evaluated by a chiari specialist and found I also have EDS.....which brings me to this forum looking for others.
I was also dx with tethered cord...I would venture if u had a chiari related condition ur surgeon would have checked u for other conditions.The MVA could have caused a syrinx to form...was the accident after ur decompression?
I do know now that the EDS is a main supplier of my pain.
Selma, I never had a syrinx and after the accident was when the symptoms started. This was 15 months before the decompression by Dr. Oro. I'm pretty sure I don't have EDS or tethered cord. Thanks for the reply.
I may be wrong but I believe that autonomic dysregulation can occur after a multitude of injuries (chest, head, spine) etc. so you unfortunatley have a double whammy of both the injury and the resulting Dysautonomia.
I do know that pain is playing a big part in this as when the pain is really bad so are the symptoms of AD. The problem is that pain medicines make me feel much much worse with twitching, panic, and sleep is non-existent.
I have decided to go ahead with a prodisc-c artificial disc replacement. If I can get through a 4 hour procedure of them cutting a piece of my skull out, I can get through a one hour discectomy.
Some milder forms of dysautonomia can be triggered by trauma/injuries in general. Most of what I have read seems to indicate that this refers to trauma itself and not a specific type of injury. This applies, for example, to POTS ... though the explanations of the causes of POTS are largely anecdotal at this point.
More severe dysautonomia, as I understand it, can occur from traumatic spinal cord injury.
From the symptoms you described, it sounds like you are experiencing something more on the milder end of the spectrum. (Which is not to minimize your symptoms, this is a relative scale where the most severe forms of dysfunction can present life-threatening symptoms, whereas the bulk of us are rather facing something that is life-altering.) Have your doctors given you a specific diagnosis, or just dysautonomia? What type of specialist is overseeing the autonomic aspects of your care? What tests or treatments have they tried so far?
I searched for cervical stenosis/dysautonomia on PubMed and turned up 4 medical journal articles, none of which seemed to actually be related to your question. If there is a link, I don't think anyone has researched it or done a case study on it yet. Sorry I couldn't find anything more helpful. :-/
Thanks H for the reply. I may have some kind of autonomic dysfunction but there is def. something more to it. I get no relief. I have this intense electrical pain in my neck, chest, and arms. Sometimes it is in my legs, but it is constant in the other areas. When the pain is really bad my heart rate will shoot up to 130 when I stand, but when it is not that bad (not often), I can stand up with little increase.
I am constantly dizzy and nausiated, no matter if I am laying down or standing up. It is worse when standing up. I don't know maybe the amount of pain I'm in has something to do with it.
I do have gastroparesis, but I also read in an article that even though it is a common symptom of it, chronic nausea can actually cause gastroparesis.
Well I know that the disc is causing at least some problems, I guess I'll see what improvement I get when it comes out.
I hope your symptoms improve dramatically or even resolve! When dysautonomia is secondary to another condition, treating or resolving the primary condition can reverse the dysautonomia, so that's definitely a possibility. Definitely keep us posted; we'll be rooting for you!
Hello everyone, I wanted to come back by and give you an update on my progress. On 5-28-09 I had an artificial disc put in at C5-6. While the surgery did not alleviate my worst pains, it did two things.
1. It completely alleviated the pain in my upper neck and head. After being told by over 7 neurologists and neurosurgeons that it was not causing pain.
2. It convinced me that the remainder of my pain and problems are coming from the other herniated discs that over 25 doctors (including those at the Mayo Clinic) said was not causing pain. The pain that was relieved is the exact same pain that is in my chest and is causing the autonomic dysfunction symptoms.
I have nothing but contemp and disgust for the entire medical profession now. I have spent two years in agony that is too horrible for the english language to describe. These doctors have not just grossly misdiagnosed me, but have ingored or discounted me when all along I have been providing them with the diagnosis. I have had to sell my house, move into low income apartments with a roomate, I am on the verge of bankruptcy because of medical bills, and am about to lose my job and with it my medical insurance. That doesn't even include the lack of proper medical treatment. All because I was ignored.
The very first test run when my symptoms started showed the herniation at C5-6, T3-4, and T6-7. Those areas of the thoracic spine control the sympathetic nervous system. The heart, lungs, bronchial tubes, stomach, and pluera all recieve sympathetic (fight or flight) innervention from the level of thoracic nerves that I have herniations at. I have constantly questioned doctors about the connection and have always been put off. There is no doubt in my mind that this is and has been the root of my problems.
I guess the point of this post is to never accept that there is no cause to be found. Too often doctors do not try and find a cause because it is easier for them to try and treat symptoms. These are the people whose job is to take care of us when we cannot take care of ourselves.
I am by no means at the end of my journey and I still have a long uphill battle to fight, but I will no longer let these people take everything I have worked for while they continue to ignore me.
I wish everyone the best of luck your journeys.
I am one of taht scurilous breed of medical professionals . I also have autonomic dysfunction probably secondary to cervical spinal cord surgery. I am sorry to hear of your plight. did the disc replacement help the dysautonmia.
My specialist have suggested that I have my C5 vertabra replaced . I have klippel feil and have fused sections above and below the C5 .
so far I am deciding against the operation mainly due to fear . the last operation was 10 hours and I am not sure I can face either the replacement op or the alternative which would be fusion of the unstable C5 veertabra in a two stage procedure each approx 6 hrs long.
I think that in these cases there is no real "textbook"and that each case has to be considered on on individual basis. I would love to hear how you are doing re the dysautonomia becasue appart from the pain it is the symptom that is causing me the most problems.
http://video.google.com/videoplay?docid=-8942646995775175252# go to minute 31
Dr. Andrew Holman, who studies and treats people with fibromyalgia, has found a connection between spinal stenosis and dysautonomia.
Good luck to everyone who comes across this old thread looking for help. Thank you JSkrill for posting your story. Hope you are okay.
Thank you so much for posting this!!!! It puts so many things into perspective regarding my med mystery symptoms. Last Dec.my Autonomic System started going haywire. I am atypical atypical according to the Neuro specialists I've seen, and no one has a clue what is wrong except for that it is a CNS/higher brain origin. I also have Congenital Cervical Spinal Stenosis along with my unknown progressive degenerative neurological disorder AKA we don't have a clue what is wrong with you. I've had Orthostatic Hypotension for years and Mitral Valve Prolapse since I was 18, Then my pupils started not constricting right, issues with focusing at times, GI dysfunction, bladder issues and other autonomic dysfunction symptoms began increasing in severity. I am moving to Oregon and hope that OHSU might have some answers for all these neuro symptoms I now have. Thanks again!
Thank you so much for posting your story!! I too had an auto accident last year and the next thing I know I am constantly being rushed to the hospital with my blood pressure and heart rate bottoming out. One simply cannot function any where near a normal level with BP 70/30 and pulse 38..trust me. I was diagnosed with POTS but I have been unable to find a doctor who will properly treat it and especially tie it into the auto accident. I was completely normal and having an awesome summer when this happened to me. That was my third accident in 2 years where someone else hit me. The first two times I was diagnosed with whip lash, went thru some rehab and moved on. This last time my whole life changed. I have pretty much been flat on my back for the past 18 mths. I have TONS of medical bills, I am being ruined financially and the damn doctors won't commit because it's an auto accident case therefore I continue to suffer. The good thing is that I am slowly improving and now have weened off the midodrine but I still feel like crap and have to lay down constantly. I have all of the symptoms that you have experienced and often wonder if this is going to be a lifetime sentence. All because a gas truck clobbered me from behind! I have gone from doctor to doctor seeking relief as well as documentation that this was from the accident. The minute they hear "auto accident", they shut down and tell me they can't say what caused it and who knows what my prognosis is. I am so FRUSTRATED! I want to get better and have my life back! I wish they would understand that it's not about money! YES...I have medical bills and I will most likely continue to have them for God knows how long...but I'd trade trillions of dollars to have my health back! I am so m miserable! Can anyone recommend a doctor who knows what the hell they are doing and isn't afraid to call a spade a spade????
I've heard these stories too often unfortunately.
I'm a physio in australia and we are starting to look at this stuff and get some good results. Fortunately for you guys in the US, this guy also seems to have a really good handle on it and applies similar techniques to us. Nice to see a way forward
Here's the link
Hi. I too have been given the run around for years. Yes spine issues can cause issues dysautonomia, especially POTS. It's hard enough proving that you have it involuntarily as a symptom even before you find a cause. Many doctors flat out refuse to believe that muscular skeletal innervated the sympathetic system and putting your system into a constant fright mode. This would normally be accompanied by excessive urination but also constipation. Im only 37 and all I got was that it was anxiety. Then they blamed lung surgeries I've had even though my spine had heart beats of it's own. It's highly debilitating and NOBODY will understand unless they have it. Dizzy, fullness in head, wooshes of adrenaline upon standing, supine bradycardia but upright tackycardia. Fine one minute, then the next bang! I have degenerative spine. I'm 37 AND IT'S RUINING MY LIFE. I am pretty sure most issues stem from stenosis or nerve compression from T1 to t5 and lesser extent c6 to c8. Better off to listen to people who have it on a forum that doctors I'm afraid. Problem with long term slow degeneration disease is that nerves desensitize, pain threshold increases and there can be minimal pain but lots of muscle tension. So the hyper pots that people get diagnosed with is often an underlying thoracic spine compression. The reason it's so rare is due to doctors being ignorant regarding muscular skeletal health in general.
Please see www.PositionalCordCompression.com for information and supportive papers. There is a wealth of knowledge about autonomic dysfunction, the cervical spinal cord, hypermobility syndromes, POTS and pain/fatigue. Or Google my name for two lectures. Happy to speak to your doctors if that may help.
Andrew J Holman MD
This is a fascinating thread for me. I am a physician, but share the frustration of several here at being misdiagnosed originally when I had a herniated C6-7 disc. My surgery went well - but several years later I was diagnosed with fibromyalgia because of constant muscle aches in shoulders and thighs. I had no classic "tender points" seen with FM. So I am intrigued by Dr. Holman's work showing that some people diagnosed with FM actually have spinal stenosis. I long suspected that I was developing spinal stenosis - now it has reached a critical point and has become obvious and the MRI reveals that I will soon need to have my neck rebuilt.
But I am also interested in the possible link between this and autonomic dysfunction - as some here have raised. In the past year I have developed "cough syncope" - a series of deep coughs will make me almost pass out. This doesn't happen often, but has happened twice while driving and is very scary. I suspect a relationship, but cannot find anything in the literature.
Thanks so much!
Dr. Rosner is my NS, & he performed an extensive cervical laminectomy on me in 2000; he performed a Posterior Fossa Decompression on me for Chiari malformation in 2012.
I don't consider myself as having FMS, because I know the cause.
I am SO much better that I get into trouble when I overdo (like now, packing up a household). I am still troubled by dysautonomia, which is very wearying--it can be nausea, gastroparesis, sweating--but always insomnia.
I was fascinated to hear about Benign Hypermobility, because that red flag is rampant in my family, and also I have had bruxism my whole adult life.
I look forward to reading your research!
I am so sorry to hear of yet another that suffers from these symptoms. I have been treating at OHSU for years and have had NO LUCK. For a teaching hospital you would think they have "some knowledge" but alas, they dont. I have been brushed off and referred to so many "specialists" all with the same answer....dont know, cant explain, therefore it must be in your head and see a shrink!
It is easier for them to say its a perplexing multitude of symptoms with no clear diagnosis therefore its must be mainly caused by a psychological condition. OHSU has nothing to offer but a dead-end and empty pockets. I have searched the States looking for a DR that is at least willing to investigate and help with the management of the symptoms. I have seen every department specialist for each area affected from GI, Spine Center, Cardiology, Psych, Physical Therapy......nothing. They arent willing to touch me because they dont want to invest the time and energy. Lets be real here, the combined symptoms are overwhelming to the medical community as they are to us and many physicians do not want to take it on.
If you have had any luck, I would love to know which physicians you have seen. (I have most likely come across them during the past 5yrs I have been advocating for myself, my life).
There are some speculations that cervical issues could cause both chiari and AD. This is definitely not accepted yet in the medical community though.
What about chiropractic manouvers or cranio-sacral therapy etc? Do you think something like that can help?
I found this site purely by chance. I have developed symptoms which are very concerning to me. I was injured on 5/5/11, moving a patient. I knew immediately something was wrong. Immediate shoulder and neck pain. Initially the employee physician thought my neck pain was coming from my shoulder. During physical therapy for my shoulder, the therapist recognized my neck was worsening. It was almost 11 months after the injury before an Mri was done. I ruptured a disc at C5-6 and it was deforming my spinal cord. I had my first ant. Cervical decompression and fusion one month later. My symptoms continued to worsen. Now my neck symptoms were attributed to my shoulder. 6 months later my shoulder was surgically repaired. My symptoms continued to worsen (severe pain, numbness, tingling, hot poker like burning, lightening bolt like pains down my neck to both arms/fingertips. 16 months postop acdf, I had no fusion and had to have a posterior fusion.
Since then, my symptoms have continued to increase in severity. In November 2013, a syrinx was found on my Mri. I was told there was no cure, they could only treat the symptoms with medication. The meds lessen the symptoms a little, but I am now having nee symptoms (rapid heartrate, hypertension, nausea and diarrhea whenever I eat, and symptoms into my left thigh. I also have developed urinary incontinence over this past year but this is being attributed to the weight gain from inactivity. I was a very active 44 year old workaholic when this started and now I am an almost sedentary obese 47 year old....all because of this injury. I try to talk to my doctor and my caseworker about this but they are "underwhelmed". I am so misserable from the pain, insomnia and other symptoms that now I am severely depressed. After the injury, I continued to do my regular job until I couldn't take the pain anymore and they did my first neck surgery a few days later. I have worked a modified job until my last neck surgery 7/28/13. Now I can barely shower because of the symptoms. I hurt so bad, I don't know how much longer I can do this? I'm trying to find someone with similar symptoms so I don't feel like I'm losing my mind. I will be having a Ct scan of my neck in 2 weeks. The last Mri, you couldn't see anything because of the 360° hardware in my neck causing artfact...I don't know if a ct scan without contrast will show much? I would give anything to go back to work and get my body and health back but there is no way I can in the shape I'm in. I don't know what to do. I am limited with my options because this is workers comp. I have to do what they say. Is there anyone out there that has gone thru this or has some knowledge about it?
Can you get to one of the "big name" teaching hospital/diagnostic centers like Mayo Clinic or Cleveland Clinic? If the doctors you have now aren't helping, the best thing you can do for yourself is move 'up the food chain' of doctors to more highly skilled practitioners. There is all kinds of testing and technology available at these big name hospitals that just doesn't exist elsewhere. It is worth the trouble, in my experience. I go to Cleveland Clinic every few years to consult with the specialists there and it's been EXTREMELY beneficial to me.
Short of that, I would say at least get a second (or third or fourth) opinion locally. People are often wary of "doctor hopping" but sometimes it's the best thing you can do for yourself.
Thank you. I don't have health insurance right now. With this being workers comp, I have to go where they tell me. If I can get some money put back, I would love to go to the Cleveland clinic just to get their opinion. I appreciate your advice.
I completely understand. It's difficult when we're limited by insurance!
I would call the worker's comp people and ask if you're covered to get a second opinion and how to go about doing that (whether you need a referral from them or your who). You might get lucky getting a second opinion locally, and if not, you're certainly no worse off than you are at present. Have you consulted with an EP cardiologist yet (an "electrophysiologist" cardiologist, that is)? With the rapid heartrate and high blood pressure that you've had since this injury/surgery, an EP cardio should evaluate you thoroughly for dysautonomia. This will likely include a holter monitor test (which often shows nothing of consequence in dysautonomia), an EKG, an echocardiogram (possibly a stress echo), and a tilt table test, in addition to routine blood labs. The tilt table test is the most crucial of these in terms of assessing autonomic function, and unfortunately also the most frequently misinterpreted. Another test that can be particularly helpful in some cases is a cardiopulmonary stress test.
Please let me know what other questions you have, or if there's anything else I can help you with. Feel free to vent here as well. I know it's stressful feeling sick and not having answers!
I am glad to have found your post. I suffered a blunt force sternum injury a few years ago. I was perfectly healthy prior, and have suffered with Dysautonomia/PoTS ever since, and have been very debilitated. I also have some C5/6 issues, but they are not offering surgery. I also have seen doctor after doctor, and am looking for suggestions on who can help.