Thursday, May 9, 2013

Back to Square One

So here we are.
Back to square one.
Or maybe square two?

I went to the doctor Tuesday.
I though I was going to be released and given a return to work date.
I've been off work for fifteen weeks. (The neurosurgeon estimated 5-8 weeks off)
However, after a lengthy and detail neurological assessment--

The Verdict:

Positive Hoffman's sign bilaterally, greater on the RIGHT.
Decreased abdominal reflexes
Positive finger escape sign on the LEFT

Physician's comment, "I don't know when you will be able to go back".
My comment can't be put into words because I merely sat there and cried.

The Plan:

Brain MRI
C-Spine MRI
Then my doc will call my NS, they will consult and will together order
Full Spine MRI

Possible Outcome: (in order of the likely outcome)

Syringomyelia (presence of syrinx)
Tethered Cord Syndrome
Recurrence of Arachnoid Cyst
Failed decompression surgery
Multiple Sclerosis
Tumor of Spinal Cord

OR-no outcome and my neuro system is just in shock still from regeneration of nerves.

Yes-I cried all day...
I will be terminated from my job soon due to my leave being so long. I am assured they will re-hire me when I'm deemed fit for my duties there..but that is little consolation when I will lose my insurance coverage.

The part that is most upsetting is that I asked for a full spine MRI initially and was not granted one by any of the neurosurgeons or neurologists I saw.  They typically look for a syrinx in the C-spine and if they don't see it there it's not further investigated.  I should have pushed harder for this test.
But my gosh--I'm tired of having to push for myself.
Why is it that the doctors don't take a comprehensive look initially.
I mean, if I have a cough, I'm now at the point I want them to rule out everything that it could be from upper respiratory infection to tuberculosis to lung cancer at the first visit.
Why is it that we have to claw, fight and bite our way to diagnosis and treatment?

I realize that I could have all negative MRI's and this could show I'm still just in the healing phase. That will be a blessing..and I will be grateful.
However, in my gut--I feel like something has been missed and I want it to be found.
I want to move forward.

Do you have any history of any of the above conditions or positive neuro results?  If so, please comment or message your story.

I wish you a symptom-free day.


  1. Hang in there Michele. It has to get better someday! Just like you I feel like I'm back to square one. My NS is sending me for MRI's of the head, neck and spine to find out why the back of my head is a swollen mess, why my legs are in constant pain, and why all of my Chiari symptoms are back. I'll keep praying for both of us that it's just part of the healing process.

  2. Dave--So sorry to hear this. I know you must feel defeated some days, however, your comments are always very encouraging to me. I feel like a total joke some today. I just want to curl up into a ball and stay there forever. My symptoms have returned like a ton of bricks hitting me...and a new one-today I was eating jalepeno peppers like they weren't hot at all and saying what great flavor they had--my sister in laws had burning mouths--so we all shared a few of the same peppers..and spicy carrots--I felt nothing..absolutely nothing...have you ever heard of this decreased sensation? I am praying for you..keep me posted.