Yolanda's upcoming surgery: Unresolved issues

[Guest guest]

Hi, Yolanda --

Thanks for your nice post. I've changed the caption on this post to make it a

little more current and specific. I think many of us (and I am certainly a major

culprit) often forget to do this. If you are switching subjects even a little,

it's often a good idea to put an updated caption in the subject line of your

post. And now, despite all I've just said: In the case of the current post, the

old caption probably would have been fine, actually. But there were a

number of intervening posts under the " Back from hospital in Germany " heading

which actually related to Elaine's U.S. surgery. Since I am as likely as anyone

to miss this kind of thing, I hope everyone will help by checking the subject

line before sending a reply and by editing that caption as necessary to reflect

any shift in subject matter. Thanks, Feisty colleagues!

Yolands, I hope you will be sure to ask the surgeons about their inattention (so

far) to T12, where -- as I understand it -- you have had some kind of

pseudarthrosis or failure of an oseotomy. If I read your post correctly, you are

currently fused from L1 to S1, that is, from the beginning of your lumbar region

to the end of your spine at the sacrum. Your concern is that you should actually

be fused at least as high as T12, presumably with some skilled repair work at

the T12-L1 junction. This would be an important issue for me as well. Is it

possible that they can or will still address it in your follow-up surgery?

I get the sense that these surgeons still have not given you a clear surgical

plan for the next installment of your revision procedure when you go back to

Germany. It must be so frustrating to be left in the dark like this. I was sorry

to hear that you have not even been given a date as yet. I hope you will have

enough advance notice to make your travel and household arrangements without

still more excessive stress.

A couple thoughts:

(1) I know this may not be for everyone, but have you found it at all helpful to

try any relaxation or meditation tapes? (I find mindfulness meditation

especially helpful personally.) Not to evade the very real problems you are

facing or imply that you are the cause of them -- just to get your own reactions

to all this aggravation under the best control possible, so that you can be even

calmer and more effective when you confront the doctors and embark on the

additional surgery.

(2) Sometimes I have found, at least here in the US, that there is a sharp and

conscientious " people-person " somewhere in a surgeon's practice -- a

nurse-practitioner, or perhaps even an especially articulate fellow or senior

resident -- who can bridge the communications gap for me if the doctor himself

is a lost cause. I am wondering if the German doctors work with anyone like

this? Just a thought. I suppose if there were such a person, you would have met

her by now. It's bad enough to be a doc who lacks basic interpersonal and

communications skills with patients, but worse yet if you can not acknowledge

your own deficiency and hire capable staff to fill in for you in dealing with

patients as people -- someone to work with your patients on optimal scheduling

from their own as well as the doctor's perspective, to clarify prospective

surgical plans as well as recent operative and diagnostic findings, and so

forth.

Responding to your comments: Yes, I am very thankful for the many wonderful

experiences I have had with doctors over the years. Unfortunately the bad

experiences do tend to be awfully memorable, though! Like you, I had an

appalling consultation with one neurologist, but I have also seen several highly

capable and helpful neurologists as well. Oops, no, wait a minute -- the guy who

manhandled me (ignoring my report of severe spinal pain and wrenching my body

repeatedly while examining me) was actually a neurosurgeon, not a neurologist.

And I guess even he was not all bad, since he was the first person to tell me

about another neurosurgeon, Dr. Ondra, who is topnotch and a veritable

saint in my eyes -- the neurosurgeon who eventually did my five Chicago revision

procedures some years later, after a member of this group, Donna Durgin, did me

the great favor of persuading me to persist in pursuing an appointment with Dr.

Ondra.

Most of my neurologists have been decent. But that neurologist you saw, Yolanda

- oh, wow! How amazing that when he could not diagnose a serious neurological

symptom (temporary loss of function in both legs), he called in a psychiatrist

to check your mental status. It seems to me that " hysterical " paralysis may have

been more common in Freud's day, but I believe it is virtually unheard of these

days. I think I have met one person in my entire life, a wonderfully kindly and

lovable older nun, who had lost the use of her legs for ostensibly intrapsychic

reasons. That was back in the late 1960s, when I was doing volunteer work on a

university psych. unit. By the 1980s, when I was coverng national psychiatric

meetings (often including many international presentations) with the medical

press, this subject did not come up at all that I can remember (at least in

studies and case reports from contemporary industrialized societies). So I have

to think your neurologist was some kind of neo-n or something -- truly

out of touch with present-day medical epidemiology, not to mention being out of

touch with the need for accurate and precise diagnosis!

I sure hope someone made a point of informing the neurologist and the

psychiatrist of the surgical findings indicating malunion of osteotomies and

excessive scar tissue (as well as any related conclusions regarding motor nerve

damage or explanations as to why you had leg problems bilaterally). I also hope

someone informed the surgeon who apparently started the deteriorating process by

mistakenly removing an important ligament. What an extravaganza of medical

ineptitude!

As for your long-delayed and repeatedly overlooked flatback diagnosis: I am so

terribly sorry you had to endure this wearying ten-year ordeal at the hands of

supposed medical doctors. I know I am not alone in longing for the day when we

no longer hear this shocking story from anyone. Right now we are still hearing

it way too often. I don't know why. It is inexcusable in light of what spinal

specialists now know -- or should know -- about spinal mechanics in general and

the growing epidemic of iatrogenic flatback syndrome in particular.

Well, what more can I say? Keep the faith, Yolanda. You are a fighter, and that

is good. And you can be sure you have many friends and allies here at the Feisty

Forum. Please stay in touch with us!

Reciprocal Groetjes (hope I spelled that right!),

>

> Hi Elizabeh,

> What a story! It is indeed unbelevable that threre are doc's like this! The

way you describe your docter back then does sound very familiar. I think lots of

us have had doc's like this.It is good to know that I am not the only one. To be

honest it is not my first bad experience. The more docters you see the more

troubels you can get at the next. I noticed that they are usaually very frienly

when I tell my complaints and then the picturs do not show the problems as they

expect and they do not now how to help (or do not take me serious).It took at

least ten years before a docter realized I had flatback syndrome wich I and many

other docters had never heard of) Now my flatback was even worse than before the

first flatback was reparaird and was very clear.

> Neurologist are mostly the worst of the kind.