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pots & scoliosis


sfr100
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It's related to Dysautonomia, but not necessarily POTS.

The nutrition oriented M.D. that I saw years ago, dx'd me with Autonomic Imbalance, and in his book he wrote that scoliosis and TMJ are autonomic imbalances. I have an 8? "S" curve, (and Dr. Grubb checked me for it) but it's transient with my symptoms and with chiropractic adjustments. When I'm doing better and getting regular adjustments, it goes away, my back is straight. BTW, in order to be diagnosed as scoliosis the curve must be 10? or greater.

In the book I just mentioned in the post about MVP, "The Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide," by James Durante et al., scoliosis is listed as a symptom of MVPS/Dysautonomia.

In Googling it just now, 90% of children with Familial Dysautonomia (mostly confined to one ethnic group) have scoliosis before age 13. I only found it connected with this and the MVPS.

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Now you had to bring that up! :) I wonder how many of us have a straight neck (or C-spine as you are calling it, cervical spine) or military neck as it is also called? I have a lot of pain from this condition!

I can't find oodles of information about it, but it can be caused by whiplash. Anybody out there know about spine stuff and Dysautonomia?

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That's weird- I didn't know there was any connection. I just found out I have mild scoliosis in my lumbar spine. Hmmm...

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hmmm-interesting topic/question.. I have scoliosis.. my entire spine is in the shape of an S.. I've wonder if they is a connection... I also have stuff going on with my cervical spine.. damage and things.. hmm I dontknow!

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I thought I was the only one!

I had a series of x-rays because of shoulder pain and nothing showed up for the shoulders but, it did show 'definite straightening of the C-spine possibly due to muscle spasms'

I looked this up on the net but really couldn't find anything that applied to me(or dysautonomia)

You think you are really unique and voila! ....you come to this forum to find out you are one of many :)

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Be Still....(or anyone)

Is there a connection between Dysautonomia and straightening of the C-spine? (not from an injury)

Could one cause the other?

Also, what (if anything) can be done for it?

I have tried chiroprators and physio-therapists but nothing seems to help. Would cortisone injections work for the shoulder pain or a nerve block? Has anyone tried these methods?

Any information would be greatfully appreciated!! :(

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The cause and treatment of straightened C-spines is very controversial in the chiropractic profession.

The orthopedically inclined docs say it is from injury to muscles and ligaments with the large muscles in the back of the neck going into spasms or contractures and pulling the spine straight.

The neurologically inclined docs say that when there is a decreased of functioning in the central nervous system from many causes the nerve supply to the tiny muscles between the vertebral is decreased or imbalanced and the curves are not maintained.

The nutrition and exercise oriented ones say the muscles get weak.....

The psychologically oriented ones say the posture is assumed as a compensation for....

And so on and so forth. I am sure that each person has his/her own mix of causes.

But it hurts and that is the important thing. Find things which help like adjustments, massages, exercises, nutrients to support muscle and ligament tone, neck supports while supine, etc.

OLL

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Please - someone - explaing what the c-spine thing is....I've never heard of it - what is it and what are the symptoms?

I had a hard hit to the back of the head as a teenager with whiplash type injury and it flared up for years. Now I have lots of pain on my spine in my neck and upper back. In fact I was thinking of talking to a PT about it.

Also, when I saw Dr. G in Jan, in his examination, he told me I had a slight scoliosis! I had NEVER been told about that before! He said it was slight and nothing to worry about.

Hmmmmm.... We love to grab at strings that might explain this don't we... but someday, one of our strings is going to lead to answers! :(

~Roselover

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I would suggest caution in attempting to draw any relationship between scoliosis and POTS. While there is clear medically based association between EDS and scoliosis, as well as FD & scoliosis, you have to keep in mind that scoliosis is a fairly common health issue so many, many people in the general population have some degree of curvature. In a study of 1000 healthy high school students, only 16 had a clinically straight and normal spine. That leaves 984 students with some degree of curvature...so it would seem that curvature is more than norm than the more perfect curve that's supposedly normal.

research report from Scoliosis.org

Personally, I have Hypermobile EDS and significant scoliosis--an S shaped curve that runs from my c-spine through my lumbar spine. One is about 18 degrees, and the other is about 20 degrees. My mother has classical EDS has severe scoliosis, with a c shaped curve that runs inward toward her chest and displaces organs, and causes her pain.

Nina

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Hi Rose Lover :)

My understanding is this:

Our spine (from the base of the head to the tailbone) has natural curves in it that curve inwards and outwards into the body. This is suppose to help with balance and as shock absorbers. Scoliosis I believe is an unnatural curvature of the spine that goes sideways. ( Is this correct Mighty Mouse?) My friend has scoliosis and that is how she explained it to me.

Straightening of the C-spine is an unnatural straightening of the natural curve in the neck area. This is what I have. Most information you read on it states it is caused by injury such as whip-lash. I don't get much neck pain, the worst for me is in my shoulders and upper back (severe pain) I would like to know if cortisone injections would work...... :)

When my back pain is at it's worst, it pushes my BP and tachy up and I feel worse overall.

Just before Christmas, my upper back pain was extreme...I had to go to the ER because my 'normal' tachycardia turned abnormal (diffuse ST's) and my BP was as the doctor said 'all over the map'. THEN the migraine kicked in :ph34r: The ER docs thought I was having an aortic dissection! :o After loading me up with morphine, my tachycardia went back to 'normal', my back pain lessened and the migraine went away but my BP was still quite elevated. They admitted me to the hospital but I checked out as soon as the pain was under control ( after about 3 hours) I had to sign waivers stating that I was responsible for my own demise. They don't understand that this is how I (and others) live on a regular basis. I work in this hospital (clerical) and when I see these docs in passing, I think I amaze them that I am still alive.

Rose Lover....read Mighty Mouse's message as she has scoliosis and her information is quite informative.

My problem is with the C-spine unrelated to injury.

Anymore information would be greatly appreciated.

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Guest Julia59

Dysautonomia can be connected with disorders of the spine when there is pressure on the spinal cord, or when there is blockage/partial blockage of CSF (cerebral spinal fluid) fluid, but from what I understand it's the upper spine---(cervical spine)---and also in the brain stem area. There is a condition known as chiari malformation.

"Chiari (kee-AR-ee) malformation (CM) includes a complex group of disorders characterized by herniation of the cerebellum through the large opening in the base of the skull (foramen magnum) into the spinal canal. The herniated tissue blocks the circulation of cerebrospinal fluid (CSF) in the brain and can lead to the formation of a cavity (syrinx) within the spinal cord. There are three main types of CM. CM1, the simplest and most prevalent form, is generally considered to be a congenital malformation, although acquired cases are recognized. It is rarely apparent at birth. CM2 and CM3 are more severe congenital malformations that are apparent at birth and associated with complex defects of the brain and spinal cord."

As you can see on my signature line I am diagnosed with chiari-0---or small posterior fossa----and retroflex odontoid in which the odontoid bone---(C-2) is tilted forward putting pressure on the anterior brain stem, and also partial blockage of CSF fluid posteriorly.

My POTS is not proven to be caused by my upper cervical spine/chiari related conditions----but most people who have this usually have some form of ANS dysfunction.

SURGERY IS NOT A CURE FOR POTS--------in oher words while the two conditions may have some connection---there is never a guarantee that surgery will make POTS symptoms or other ANS symptoms go away. AS someone who is familiar with both conditions, and has talked with many patients who have chiari, POTS or both, I have seen patients who have not had a complete resolution of ANS symptoms after surgery.

Some have even gotten worse.

There is always a chance that permanant damage can be done, and a person may only get partial relief of symptoms, and a few have gotten lucky and do very well after surgery------IT DEPENDS ON HOW EARLY IT IS CAUGHT----the earlier the better.

I also have scoliosis---my thoracic/lumbar junction curves inward too far----I don't think this relates to my dysautonomia, but it may be related to my EDS. It continues to get worse as time passes. The upper spine--(cervical)---and brain stem are have a lot to do with the ANS system.

One of the symptoms Dr. Bolognese---(with the chiari institute) told me to look for was more heart arrhythmia's------and since I have already existing brain stem compression, it could be a sign the brain stem compression/upper spine compression is getting worse.

I have met some Chiari patients that did not have any knowledge of POTS, but did complain of tachycardia/arrhythmia's, fatigue and other ANS symtoms, but were never officially diagnosed with POTS/dysautonomia. Chiari/ and upper spine conditions are chronic, and sometimes people need repeated surgeries-----especially if they have EDs. It is very important to go to neurosurgeons who are very expereinced with these conditions and have a long track record of sucessful surgeries.

I also have lordosis---------http://www.spineuniverse.com/displayarticle.php/article1438.html

I assume this is also part of EDS/scoliosis------

The only reason I may consider surgery is because of my worsening myelopathy----I don't want to lose my ability to walk. If I have improvement of my ANS symptoms---I'll consider it a bonus.

Julie :0)

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I have had scoliosis since I was a child. If I bend over at the waist, or am in a swimsuit or other backless attire, it is evident. I've even had people comment/ask -- can you imagine? but then, I grew up with kids who'd mimic my mother's polio limp.

All I have ever noticed is that sometimes my right shoulder blade will really hurt, but lying as flat as I can get on the floor and on top of a tennis ball (under the shoulder blade) relieves it. I notice the pain especially after prolonged sitting at a desk, or the sewing machine.

After years of abuse, I guess, I required back surgery for a herniated/ruptured disk at L4-5, S-1, and after about a year and a half, would never have known I had hurt my lower back (unless I do too much or something stupid, which is hardly likely these days).

I have been curious about the connection between polio and dysautonomias in the offspring of polio patients. My mother came down with polio when she was 8, and I was her first child. I can't help but wonder what genes got passed down that may have impacted the ANS.

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Scoliosis is any curve that's not supposed to be there: the curves can be sideways, inward (anterior) or outward (dorsal). Those with significant dorsal curves typically have an hump that one can see pretty easily.

My mother's curve is anterior, curving inward toward her breastbone in her thoracic area. Mine are right, then left, and slightly dorsal (so left and twists outward). I compensate quite well, but if you really look closely, my shoulders are not even with each other, and one rolls forward. Also, my hips are even, but my ribs nearly touch my on my left, and there's at least 5 inches between my hips and first rib on my right.

Chiari and scoliosis aren't necessarily related. You can have one without the other. I have scoliosis and not chiari.

Nina

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