Wednesday, December 23, 2009

New Diagnosis

I saw the super-duper fancy-pants neuro-surgeon today and he was awesome. He looked at all the evidence and said that I'm a "fringe case" meaning that all the facts don't add up very well. He said in these circumstances he looks for something more rare. He guessed I may have Tethered Spinal Cord Syndrome. He then flipped through the layers of my MRI and low and behold - there it was. My spinal cord extends a good four inches beyond where normal cords stop. It's a deformity closely linked to Spina Bifida and nowadays it's the sort of thing an OB would look for in an ultrasound.

Since it wasn't treated at birth I have adult-onset symptoms. Typically a person rapidly goes from having some pain to completely debilitating pain. The next stage is even worse, you lose bowel and bladder control and then you have total loss of feeling and paralysis. Fortunately I'm not there yet. The other symptoms are things I've dealt with my whole life. It's funny to think back to health problems I had in third grade in light of this rare disorder. It's odd to have lived with poor health as long as I can remember and now see how TSCS was the cause of a lot of it.

On January 22, 2010 (Friday) I'll be admitted and the doctor will perform a laminotomy in my mid-back. Here's a picture of a vertebrae - he's cutting off the front triangle piece (the lamina). Then he'll dig a trench down along the spinal cord cover, cut through it at the appropriate part and insert a microscope in my spinal cord. At some point he'll inject a powerful coagulant hardening that spot on my spinal cord and then he'll sever it. That will "untether" my spinal cord and should resolve my issues.

I have to lie perfectly flat for 36-48 hours and then I'll have two more days in the hospital getting back on my feet. After that I can come home on Tuesday and I'll have to rest for two weeks. Then I'll have no doctor directed restrictions - basically I can do whatever I feel up to doing.

This is a wildly different recovery than the year of healing with the coccygectomy. It's also a much scarier "bigger" procedure. Dr. Awesome has done fifteen in the last three years and has been asked to write a paper on it. He's definitely the guy to go to. He's very comfortable with this surgery and was glad to find this rare disorder that puts all the puzzle pieces together.

As for my two broken bones - both are old breaks and they have healed reasonably well with no spurs or arthritis. He thinks removing the coccyx would be a poor choice and may have made things worse.

Thanks everyone for the prayers. I am excited and terrified about going forward with this. Severing my spinal cord sounds like something you avoid, not something you make an appointment for *grin*

Wishing you all a very Merry Christmas :-)


Tiff said...

I am so glad you have a bad-ass surgeon! YAYYYY! Big giant hugs and high fives! Keep us posted!

Melyssa R said...

He sounds like an amazing doctor. I wish you all the best with the procedure and recovery. Big hugs!

Kathi said...

Wow! It's great that you got a diagnosis that seems to give credible reason for all/most of your health problems since you were small.

The surgery, while scary, has a much better recovery time, which is phenomenal!

Can or should you get a second opinion just to be sure before proceeding with your surgery?

It's nice that you have a surgery date now. Did he give you anything to help you with the pain til then?

Your positive attitude and "can do" philosophy will see you through this!

Jenna Bayley-Burke said...

That was on Mystery Diagnosis on the Discovery Health Channel! It happened to a teenaged boy, and things went rapidly downhill for him - he walked in the hospital with pain and the next day was paralyzed. BUT...he was fine after the surgery. I think they showed him playing basketball, so you might want to study up on your hook shot. :)

And...OMIGAWSH, you're going to be fine by Valentine's Day!

Godelieve said...

Wishing you all the best with this Nicole!
Merry Christmas to you and your family.

Alyssa S said...

Yay! I'm so glad to see that you went to a dr that looked beyond what others had settled on. Sounds like you got the best Christmas present ever - a dr that listened! Looking forward to no pain for you! Merry Christmas!!

Laura O'Donnell said...

I'm glad you found this doctor!

Elizabeth said...


Hoping this diagnosis pans out -- and yes, it definitely sounds like if this is the procedure to be done, this is the surgeon to do it.

And also... Merry Christmas!

Carmen said...

OMG - what amazing news. So pleased to read this today of all days. What a gift to get, just the news in itself.

Very Merry Christmas Nicole. ***Hugs***

MaryEllen said...

Haven't been online since the 20th so I just saw this - oh, Nicole, wow. What great news!

SarahLP said...

Sending you lots of love and huge hugs to help get you through the surgery and recovery. You are so positive and so brave.. a real inspiration!!
Very best wishes,
Sarah xxx

Amy Wing said...

So many feelings after reading this, Nicole! So glad there's an answer and it involves a shorter recovery period if more radical surgical procedure. That must be so scary for you to think about. I had not heard of tethered spinal cord syndrome, so I looked it up. All good to have more info as I'm prepare to recert this year. ;)

Not sure if they explained or not, but when you're born, your spinal cord is much lower in your vertebral column than it is in adulthood. As you grow, the space at the bottom is composed of what's called the "cauda equina" (horse's tail), which is basically a bunch of hair-like nerve extensions off the bottom of the spinal cord. But the actual CORD is at the level of about L1 or L2. When I spinal tap is performed on someone, it's below the level of the spinal cord... which in a baby or child is more nervewracking compared to an adult because they have less "free space" there.

Except, poor you. Your spinal cord has just been stretching and stretching all this time, as it has been tethered to its original spot. OUCH!

Just out of curiosity, did you ever get "cauda equina" symptoms? Stuff like saddle anesthesia (numb/tingling where your body would normally touch when sitting in a saddle)... you said you hadn't gotten to the bowel/bladder incontinence yet (which is another cauda equina symptom)... wow. Just wow.

I am so happy that there's now an answer and yet so sad that you've had to live with this your whole life. Out of curiosity, what have they been saying it is all these years? I know it was some kind of autoimmune spinal disorder, but now I can't remember... also makes me mad for you that you had to take all those damn toxic drugs that didn't do a darn thing for you! Plllpththth!

Shutting up now.

Mima said...

What a miracle to find a diagnosis that makes sense of everything, it's like one of those things that you dream of but never really happens.