Many years ago it was found that I had congenital birth defects (wore casts and braces for most of my childhood). I'm now 75 yrs. old, so you can imagine that weren't the lightweight models of today.
I had surgery for another illness, Syringomyelia (cysts form inside the spinal cord) and contracted two separate viruses during my healing time. Miserable, extremely painful years....but I was young, in good shape and had a wonderful husband and two teenage daughters. So, in spite of my frozen body, I had to return.
This was prior to or just at the beginning of the Lake Tahoe outbreak. Later a new neurosurgeon discovered that I had ACM (Arnold Chiari Malformation)....well, my neurologist had known about it, had actually diagnosed it, but at that time nothing could be done. Besides, who knew that it caused trouble in this way? MRI's were an invaluable contribution to the diagnosis of our illnesses, but I strongly feel that each Dr. we encounter should do his/her own reading....it's often missed by radiologists, although things are better known about today.
I had ACM Repair surgery (which controlled the SM) probably 30 or more years ago. It was an easy surgery compared to the first....uncomfortable and painful in the beginning, but healed quickly and I did improve significantly. Never perfect, but I was able to travel and we lead ordinary lives.
Doctors who have worked in Third World Country (often volunteered) are a great source of this knowledge...the conditions are more prevalent in these places and many are caused by a shortage of folic acid while the embryo/fetus is developing. Birth difficulties could also add another reason for such an injury.
I had seen my symptoms improve, get worse and always, always I have pain. I cannot use the items (although lyrica helps immensely) presently available for control....but most of you will benefit from implants alone (right now they only last a year or less, my cord forms a lot of scar tissue, so it's out until a longer time date has been found....and it will).
You'll do well. I've fought many battles during my recovery, some genetic and others simply old-age related. Osteoporosis has been the worst, so please watch out for that carefully. I had full blown osteoporosis from the time it was found in my early 40's. Diet alone didn't help, nor have the many vitamins and minerals....I'm not saying they didn't provide some protection, but they certainly didn't prevent it.
@SWAlexander.....I'm glad that you've found a helpful dermatologist. Sometimes we just have to keep looking, but a helpful doctor (even if they can't cure us) is worth his/her weight in gold. Good luck.
People seriously underestimate the dangers of things like out of the ordinary roller coaster rides, too much weight lifting, hormone problems, accidents (even if long ago) and yes, in many cases, viruses. I feel we'll never have just one answer, but many which may not cure the illness(es) but will aid in the control of symptoms. These are closer than ever. I believe that with all of my heart. Good luck with your recovery. Yours, Lenora.
