Dr. Heffez called today w/my CT scan results

[Guest guest]

Hello friends, loved ones, and family of choice:

I just wanted to give a brief update on my visit to Dr. Heffez in Chicago, where

I had a CT scan on my c-spine a week ago with a double dose of dye (images taken

in 1/4-1/2 inch increments). Dr. Heffez called me today and told me that he

most definitely saw congenital narrowing of my spinal column from approx. c-3

through t-1, and spinal stenosis in that same area (including the area

previously fused in 1999) as well. He plainly feels that a cervical laminectomy

with posterior incision would be the only viable surgical option to stabilize my

c-spine. He now wants me to have a diagnostic test done to see if my bladder

functioning is being impaired by my spinal cord impingement (which would, in

turn, tell him if other organs are being effected as well), and then a cervical

myleogram. He He wrote Rx's for both those procedures while I was there, and

said I could have them done at Baylor in Dallas, and the results sent to him.

He understands my intense horror of the myleogram due to my two prior

experiences. It is such a risky and invasive, not to mention horrifically

painful, procedure within itself. He told me that I should wait until he has the

results of the bladder test before having the myleogram, as he is gathering

information methodically and conservatively....and no one has a myleogram done

unless they are committed to a radical surgery such as the one I must now face

the inevitability of. Dr. Heffez said, " It is a big surgery, and there will be

considerable post operative pain. You will be in a hard cervical collar for

several months, but may not need to wear a soft one permanently if all goes well

and we achieve the desired results. " He said that he would be happy to fax all

progress notes and test results to my orthopedic surgeon in Dallas (who did my

1999 fusion in collaboration with a Dallas neurosurgeon who decompressed my

spinal cord), so that both he and my ortho would be " of the same mind and on the

same page " , as any surgery Dr. Heffez performs will need to be followed up with

care my long term Dallas ortho. Dr. Heffez did say that he is very, very

certain that while I do not have Chairi (sp?) malformation so often associated

with many EDSers, the congenital narrowing of my spinal column is a very real

contributing factor to my Post Orthostatic Tachycardia Syndrome, and may explain

the increased frequency of my syncope and lack of pre-syncope in recent months

as my spinal cord has become slightly more and more pinched. He cannot, nor can

any dr, widen my spinal cord. I was born with it too narrow. But he can

stabilize the vertebrae, interlocking his hardware with my current existing

anterior hardware (like webbing your fingers together). He does have some

concern about my slow healing, defective connective tissue, and historical low

bone turnover and low bone density. Those are very valid concerns, and I shall

take them up with my specialist on mineral metabolism later this month. I feel

that it is imperative that ALL my drs communicate openly with each other prior

to me submitting myself to this sobering ordeal. Dr. Heffez is a very

reasonable man, and possibly one of the best for this task. I just hate to have

to endure it, and dread having to have it done so far from home. If Dr. Heffez

feels it can wait until summer when school is out, that would be best for me.

Until then, I will be extra careful and wear rhinestones in my soft cervical

collar. I so deeply appreciate you for " listening " to me, and for all prayers

and good thoughts.

Love,

~LoneStarRose~

(~~)