Thursday, October 29, 2009

MRI Results

I went to my appointment yesterday for an MRI of my thoracic spine. I had imaging done in New York for The Chiari Institute in August but due to a "scheduling mistake" my thoracic spine was not scanned. Dr. Insigna at TCI recommended that I have an MRI of my thoracic spine in my local area and send them the results since my syrinx ran along most of my spinal cord in my thoracic area. He wanted to have new images to compare with the last ones I had taken.

Some of you may remember that after my tethered cord surgery my syrinx had shrunk considerably. I was in hopes that it would be completely gone. I was not that lucky.

My syrinx is huge. It has at least doubled in width from the size it was before I had my surgery. Those of us with syringomyelia/syrinxes know that the width of the syrinx is what causes the most damage. Syringomyelia damages the spinal cord from the inside out.

Now I am wondering what has caused my syrinx to grow so large. Wondering if I'm re-tethered? I was told the tethering is what most likely caused my syrinx to begin with. After my tethered cord surgery it began to shrink so it seemed that was the cause. I am again very worried about this growing of my syrinx hoping the docs can tell me what is causing it. Worried that it will continue to grow and do more damage to my spinal cord. I have had an increase in my back pain, neuropathic pain, and a return of my urinary problems for months now. That is what took me back The Chiari Institute in August. Since August my symptoms have continued to worsen.

So I am wondering what it is going to take to stop this growth of my syrinx. Wondering what damage it is doing to my spinal cord and just how much it may do in the future. Wondering will I need another surgery, surgery that I never want to go through again.

6 comments:

Anonymous said...

Laurie,
Since going through the tethered cord surgery again in June I think of you often. I pray they find another cause for the syrinx to be growing and it will be easier to repair than having to go through that hell again. :(

Barb

Anonymous said...

Hi Laurie...so sorry to hear ur syrinx grew. Do u have anappointment for u to discuss this?Call me if u want to talk : )

Mrs Snurd

FridaWrites said...

I'm sorry to hear that! That is a really terrible thing to happen after an already complicated surgery.

shalunya said...

Laurie, Thank you so much for sharing your journey. I myself have Chiari Malformation, degenerative disc disease, dysequalibrium (75% is broken) and other conditions. I am four years post decompression and would love to say I'm doing great but it would be a lie. I so wish I had started blogging years ago when I was going through surgery, etc. I am so grateful that you have shared your story so beautifully on your blog. These conditions can be so frustrating. It's comforting to find others going through the same struggles. Thank you for sharing. Renee' "Shalunya"
http://gypsyshalunya.blogspot.com

Anonymous said...

I've been through a similar ordeal, read a lot of research, and come to the conclusion that the tethered cord business is way overhyped and, by certain people, over-treated with surgery.

In my case, there was no CM, just SM. I was told 95% chance it would solve my problems, shrink my syrinx, etc.. I asked about some literature where detethering surgery was followed by rapid expansion of syringes, and my concerns were dismissed.

Since then I've heard of it happening to a handful of people.

In your case, since it looked fine immediately after, I'm guessing you'll be fairly stable. However, I would take this to be good evidence that detethering is not the cure it has been made out to be.

Take care! -AJ

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