Friday, December 10, 2010

Dysautonomia 自律神經失調?

This phrase called 自律神經失調 kept on coming up recently...

So I looked it up... in English.. perhaps... Dysautonomia? 8-O

Then, I came across this discussion forum where people spoke of dysautonomia and spine-related problems... and this posting by lady 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---------

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)

Applicable to me or not... though better not... and hopefully not...

No comments: