Living with syringomyelia

It has been a long time since I posted anything. I have been to so many doctors that I am losing count. I am in pain most of the time and I am very tired; sometimes too tired to do much of anything.

I was fired at the beginning of the month for missing too much work due to doctor appointments. This story should have it's own blog and maybe some day it will.

I have been going to P/T a few times a week and that does seem to help, however I know this is not a permanent fix.

I have had a pain injection to my tailbone which seemed to be pretty helpful up until last night. The burning pain in my behind is coming back. (yeah).
My arms are now going numb at least several times a day.

For those of you who do not know what syringomyelia is, it is a cyst in the spinal cord that takes up valuable space and compresses the nerves that run through the spinal cord disrupting nerve impulses and signals, causing a lot of pain. The cyst is called a syrinx and is caused by "something", the most common cause is Chiari malformation (in which case, your brain protrudes out of your skull into the top of the spinal column, disrupting spinal fluid flow.) It can also be caused by a tumor, trauma (fall, car accident)or very rarely maybe you were born with it.

I am having a problem with the doctors in my area telling me, "Not to worry about it" and "You are reading too much material and giving yourself these symptoms". "Your symptoms are not directly related to your syrinx"; etc, etc.

I had an x-ray last week showing a separation in my tailbone and I guess that pain is in my head, too?

I started out in August 2006 with severe neck pain, right arm pain and numbness and coldness. I was being treated by a chiropractor at that time who REFUSED to order an MRI for me after several MONTHS of treatment with NO IMPROVEMENT; stating that " I exercize too much and there is nothing wrong with me". **If any malpractice attorneys read this, please contact me. **

I have been in severe pain for years now and if that bonehead chiropractor had ordered an MRI for me of my neck, I would have been able to get treatment sooner and would not have spent so much time in pain! I would love to tell all of you not to go to her, but I don't want to get sued for slander.

I would love to recommend the best chiropractor however who practices out of Putnam, CT, Dr. Barks. He is fabulous and has helped me tremendously in getting my condition diagnosed by pushing for a cervical MRI. He is patient, caring, professional and an overall great physician. I wish there were more doctors like Dr. Barks!

I submitted paperwork to The Chiari Institute in New York for further work up and possible surgery. I KNOW something is wrong with me, it is not in my head (unless it is a brain malformation, then I would agree, it is all in my head) and I will post when my appointment is and any subsequent findings or recommendations.

I NEVER thought that my future would include a rare spinal disorder! How sucky is that!?

So, my ass really hurts so I will sign off for now; keep checking back for updates and more news.