Spinalcord is to long??

[onebluehaze]

When getting a second opinion for my ADR surgery (you MUST get more than one opinion folks, what you do is perminant!) I was told my spinal cord was about an inch to long. This was not mentioned when seeing my surgeon. I was being told so many things I never thought to ask what that meant.

Seeing as I have killed the money tree I was just wondering if anyone here has heard of this before?

I float between a few support sights right now, I have an undifferentiated connective tissue disease too but even after going the May Clinic for over a week, doctors could not figure out what I had, and I was sent home with more questions than I had when I got there!

Anywho, if you have ever heard of this can you enlighten me?

[Harrison]

I can't say that I've ever heard of the spinal cord being too long before, but I have heard of the connective tissue disease. Here's one of many reference links:

Undifferentiated Connective Tissue Disease - In-Depth Overview - HSS.edu - HSS

Have you had thorough blood tests by any chance? If so, are there any abnormalities? If you have not had thorough blood labs, you might consider Klongen Labs, Fry Labs et al.

Whatever the case, more conservative spine docs would possibly exclude you from disc replacement surgery, since this disease is generally considered to be an autoimmune disease.

Where is your PCP in your journey? Is he/she guiding you?

[onebluehaze]

I did have very expensive blood work done over a year ago. It was one of those genetic tests where 40% come back as false negatives and those that test positive my not really be positive. That was a fibrillin test. My neurosurgeon knew about the connective tissue issue (that rhymed... cute).

My primary care doctor has done blood work, he sent me to see a cardiologist once a year (1mm shy of having Marfan's). I have every skeletal feature, but no one on this Earth can tell me what is wrong. My primary doctor is very good to me. I have had some doctors talk down to me. One geneticist at the Mayo Clinic had me down to the boxers and started pointing at me saying, "you get a point for this, and a point for that, that's mild so you don't get one for that, I guess you get a point for this..." and sums it up by saying, by just looking at me, not my chart, not my history, "There's nothing wrong with you". The next morning I changed my flight and went home.

Thank you for the link. I know you do more than just this support group, I just wish I could find out why all this stuff is happening. I saw the eye Dr on Tuesday and I told her I have a connective tissue disease and have to have my lens checked every year. She does the exam and says, "I'm afraid I'm going to have to add to your weirdness. You have lesions in your eye."

My ADR I feel was just a part of something bigger, something that's building momentum. Maybe one day I will know. Sad part, my 2 year old nephew is already showing skeletal signs. The question remains, signs of what??

There just aren't enough support groups. :~)