Introduction

[Guest guest]

Hi Everyone,

My name's Noni and I just joined this group. I wanted to introduce myself and also ask a sort

of obvious question.

First things first.

I'm 47 and have been diagnosed with spinal stenosis since I was 34. I'd left it so long just ignoring or "dealing

with" the pain (then just in my neck) that by the time I presented for my

first evaluation, it was considered an emergency. Mind you, it took some doing to get the first

"orthopedics department" doctor, who was a physiatrist, to even let

me have an MRI. I guess she was pretty

"anti-surgery" (sort of like me, 3 failed procedures later). Anyway

the long and short of it is that I kept having to have revisions and in the

end, I've undergone "fusion" procedures both front and back from

level C2 to T1. My last surgery was in

2002 and due to the fact that there remained and remains at least one level of

"unfusedness" (i.e. pseudoarthrosis), and (not insignificantly) also because my overall chronic pain

level was never remedied or alleviated, ...these surgeries were all considered

"failures." (I'll admit that the initial surgery did relieve my "cord compression

symptoms" of numbness and tingling in my hands.)

Aside from the pain, what's been most disturbing about going

through this is that every surgeon I consulted with had a different idea about

what should be done. And they didn't

vary only slightly. Sometimes they varied wildly. I've had 3 different

surgeons for the 3 operations, and some of those had great reputations. An interventional radiologist I saw for a CT

scan (when my first surgery failed to provide relief) told me that with a neck

as problematic as mine, there were only 2 or 3 doctors in the whole S.E. United

States who were (according to him) "qualified" to operate on me.

Fast forward to present, and apparently I chose poorly when it came to deciding who to

let operate, in terms of what their "gameplan" was. After all those surgeries, I was told by

several other consultants that I'd "exhausted" the possibilities for

surgical intervention to help my neck.

They sent me home with meds and that was it. It doesn't seem to matter what the actual

medication is, they all quit working eventually, and the only relief I ever got

or get is when I self-apply an electro-acupuncture device (not TENS; much more

pinpoint-specific than that, and with a "point location" feature that

seems to measure galvanic resistance).

As with (statistically) 2/3 of neck stenosis patients, the

condition "migrated" to include the lower back and a couple years ago

I began consulting for surgical opinions about my lumbar spine. I live in a small town nowadays, where access

to "great surgeons" is limited but I'm willing to travel within

reason or if I had to, I'd make arrangements to go further.

This condition essentially robbed me of a life. I was a late-bloomer academically, but by the

date of my first neck evaluation in 1999, I was, myself, at the end of my third

year of M.D. medical school training, which I'd managed to successfully drag

myself through in spite of being in pain.

That first surgery disrupted all that and to be candid, I've never quite

"recovered" from that first procedure, in terms of getting my energy

back. True, it was an especially poorly

done operation, (despite being performed by my medical school's head of

neurosurgery). But the

"revisions" didn't manage to "jump start" my energy

either.

My PCP recently sent me for an evaluation with one of the

newer neurosurgeons in this town, and whereas he originally just ordered lumbar

imaging, I asked him to evaluate my neck as well, since nowadays that seems to

be bothering me most. So, I'm just past

my 2nd consultation with him, and his opinion is that I have up to 90%

compression at one level of the lumbar spine and am at risk for "cauda

equina syndrome" and he wants to do a "fusion surgery"

ASAP. I cannot schedule as expeditiously

as he'd probably prefer because nowadays I live alone and there are several

practical barriers that must be dealt with first in any scenario other than a

true "emergency." When I told

him that, his impression and belief is that I'm fearful of another surgery, given the (verbatim from his

consultation report) "horrendous experience she has undergone with regard

to her cervical spine over a decade."

As he was going over the cervical CT, MRI and X-rays he'd ordered, he

kept shaking his head, muttering to me "I wish I could see inside these

surgeon's heads to know what they

were thinking when they decided to do this"; and "WHY would he have used that there??"

It turns out I have "stabilization rods" that were too short to reach

the screws and they're coming out at the top.

His "fix" (actually his 'latest'

"fix," because at first he had something else in mind...) is to

"snip the rod" and remove the top part of it, and put a new rod with

thicker screws along with packed "stem cells" to try to effect a

better fusion at the top. The trouble

is, he's not actually sure this thing he's going to try to "fix" is

the true genesis of my ongoing shoulder blade/neck pain. He also pointed to flattened/degenerated

discs at the T2 and T3 level as being as likely implicated, whose potential

contribution is not planned to be

addressed by this procedure.

At this point, I have issues even with the very concept of fusion. I know it's sometimes phenomenally successful

when there has been an injury that's

the source of the back problem; I'm not so clear, however, in the case of disease like mine (i.e. someone who was

told in her early thirties that she has the neck of a 75-year-old).

Here's my question to anyone at all that might have

knowledge or an opinion on this… I've

been "out of the loop" in terms of looking for or considering surgeons for a

very long time. How does one research a

doctor (or try to find "a good one"), now that there are more options vis-à-vis

the internet than what was available a decade ago when I began this process? Someone recently told me that "if it

were my back, I'd find out who was

the best in the country, and I'd travel there for their evaluation and perhaps

even for surgery." Well, my resources

are not infinite and nowadays I'm a

Medicare patient, but I agree in principle,

and perhaps even in practice. I'm near

enough to travel by car to a hospital like Shands in N. FL or perhaps further,

if it was well-planned. But the fact is,

I've already allowed some of "the best" to have access to me, and to try

their strange ideas out on me, implanting cadaveric fibula bone, rods, screws,

etc. into my neck... and nowadays

another expert sits here in review, shaking his head, going "what were they thinking??" Obviously, I'm not anxious to have

"surgeon #5" (or 6) someday likewise review this guy's work, telling

me something similar: "What was he

thinking??" I've looked online and see

lots of promotional material from each hospital, credentials, year & place of

training, etc, about individual doctors.

But on a more personal level,

how would some of you go about researching a physician to make sure you have

the very best advice and that you're in the hands of the most capable

professional who's equipped to handle your problem? I know there aren't any

guarantees and certainly each of my previous surgeons has helped some patients during his career, so that

he may have a good cheering squad somewhere out there. But knowledge/information is power, so any

resources that others know about will be gratefully received. Thank you, and finally, I'll just add that I'm

glad to find this group.