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Does anyone have Scoliosis? I believe it's contributing to this illness. Im also closely looking into neck instability as I have many symptoms of it.


Senior Member
I've had severe scoliosis since the age of 4. Meaning that I couldn't hold myself up & it was treated with the old-fashioned heavy casts & brances. I also had to do a lot of walking in those days and, believe it or not, I credit it being able to the handle my diseases today. I'm not the type of the women or girl who wanted pity, so I'll tell you that those years saw me in and out of orphanages probably 7times. Not long stays, but a few months here and there.

Since rod surgery was available for widespread use, my Dr. here told me that whatever they did betweent the two places was good for me and made it hard to detect my severe kyphosis. I have kyphosis, lordosis and one other (I can't remember). At about age 40 I was preppping for a ski trip with my husband and daughters and sneezed with my l. arm in the air. It hurt so much that I burst out crying. And it was off and on that way the entire trip. Upon my return home, I saw my gynecologist who found that I had a pituitary tumor, an orthopedic man (b/c I thought it was all tied up with my ancient scoliosis), and finally, I was referred to a neurlogist who found the underlying condition...Syringomyelia, with another diagnosis of Arnold-Chiari Malformation.

Now if you have SM alone, the chances are good that you may have it as a result of an accident of some sort or another, but if it's accompanied my ACM chances are good that you were born with both conditions. At that time surgery was still in its infancy and few places were helping patients. Besides, most of the shunts inserted didn't hold for long and finally, Arnold-Chair Malformation Repair Surgery came along...it attacked both illnesses from the brainstem and was a blessing. A lot of the surgeons who recognized it came from poverty stricken countries as it's considered one of the neural tube defects, meaning a lack of B vitamins during pregnancy. The shunt surgery was horrendous (back in the '70's) and it blocked within 3 mos. The ACM Repair Surgery was much, much easier, held well and actually did take care of both problems. I believe that it's holding until this very day.

Still, I didn't recover and, if anything, things just continued to slide downhill. My neurologist went through this bag looking for everything and finally, ME was diagnosed. We had come to that conclusion ourselves