Hi all,

I want to thank all of you who have replied to my posts giving well wishes and sharing your concerns.

I am having a very rough time right now and things aren't going too well. I've been going downhill and fast. My TOS has gotten better since the surgery but I'm falling a part everywhere else. The recovery and rehab from teh TOS surgery has been on hold which has everyone worried also.

Right now I can barely walk and I'm having trouble breathing. Also having bladder and bowel problems. This is all due to a major herniation in my thoracic spine which is pressing on teh spinal cord. I have significant spinal cord compression and need surgery ASAP. I have been busy interviewing Neurosurgeons from all over. What I have is EXTREMELY RARE! I have been to all the BIG University Hospitals and none of the surgeons have seen more than a handful of these in 20+ yearsof practice. A herniation at this level (T10 T11) is unheard of unless due to a major trauma. The typical way of doing surgery for this is through the chest which is major stuff -like having open heart surgery which nobody wants to do INCLUDING ME!

I have found a surgeon who has some experience and can approach this from the back. He said its still very risky and I will never be the same again. "He can't fix me". The surgery will decompress my spine and help me walk and have bladder and bowel function again but I will always be in pain and have back problems. THe surgeon will be removing the disc and I will be left with nothing at T10 T11. He has to cut part of the bone in my back to get to it then remove the disc. I will be at great risk after! I will not be able to lift, stand for long, sit for long, etc. THings will be quite tough for me and I will most likely never work again. They feel this is a disease of the spine and my whole spine is curving and I may need future surgeries.

I am trying to absorb all this but it's hard. I just don't get it! I am scared to death! I am more scared than I was with the TOS surgery. I hate this! I hate every part of it! I don't know how I can do this. It's killing me! I feel so crappy right now though and if I don't have the surgery, I will become paralyzed in a short period of time. None of my options are good. I think I'll go with the surgery though. It's just going to be tough.

I have to get going..need to go shopping for a cane. I need to get used to walking with one. At 35, this sucks!

My surgery is scheduled for June 9th. THey wanted to do it next Tuesday but I couldn't. I needed time to absorb it.

I sure hope this goes well! It just never ends for me!

Take care all