oops, should have gone straight to Deb Re Hip surgery -surgeon - LIZA DEB

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In a message dated 8/23/2004 9:33:15 PM Eastern Daylight Time,

jetskideb@... writes:

But anyway, my symptoms are obvious it is just that I have not found a

surgeon who will admit to cutting on the hip of an EDS patient. You are near

me so the drive would not be too bad for a good surgeon.

Debbi

Deb,

Take a vacation, come to me for a vacation, you'll stay here after the

surgery & you'll go to my guy in NYC. Don't go to a " good surgeon " , go the a

magician. I never recommend a Dr., everyone knows we're not allowed to, but Dr.

Fred Jaffe is literally world renowned. He has DEFINITELY done EDS patients &

lots of 'em. He just does knees & hips. The only thing I tell him is that he

never could have been an OB-GYN. The guy is like an oak tree! He says he's

6'7 " , but I think he's bigger. For those of you that know average glove sizes

that people wear in the O.R., it's usually @ a 6 1/2-7 1/2, depending on

male/female, etc. On rare occasion I've seen someone wear an 8. Dr. Jaffe

wears a

size 9 1/2! So, now you know why I tell him he could never have been an OB!

~~~~~~~~~~~~~~~~~~~

When I needed my knees, 11 years ago, there had never been a documented case

of anyone with EDS, that had a successful joint replacement. And at that

time, I had already been to several conferences & had personally met numerous

people that had tried to do it, but they were never successful. I met people

that

had as many as 2-3 revisions, but with no success. They either lived in

their wheelchairs or had them fused, but they were never able to be stabilized.

When I knew for sure that my only option was TKR's, I saw a few guys who

treated me like I had the plague (they wouldn't touch me) & then I saved Dr.

Jaffe

for last. He spent over 3 HOURS with Mark & I on our first visit. There must

have been @ 10 people, backed up in his waiting room when we came out, after

those 3 hours. I wanted to run the other way & jump out a back window, as it

was obvious that it was us, that kept him for 3 hours, or that he kept us for 3

hours..... But there was no back way! So, I just walked, looking straight

ahead & didn't stop for a second!!!

~~~~~~~~~~~~~~~~~~~

He wanted to be sure that we were sure & that we understood absolutely

everything involved, every risk & the prior history & a major issue was that I

was

only 38 at the time. Also, though he had worked on many people with EDS, this,

obviously was going to be the first replacement attempt. But he wasn't

concerned & neither was I. My feeling, honestly from the moment I met him, that

if

anyone could do it, it was him. And if I left the O.R. with my knee fused,

that was OK with me. I had to take the chance. I simply could not live with

the horrible, nonstop, " I'm gonna jump off a bridge " , chronic severe pain that

I had been living with. And, the only thing I knew, was that it would get

worse everyday if I did nothing. And, if we did it & it was successful, then &

had a chance of at maybe, at least some of the pain stopping. Actually, I told

him that even if the pain stopped for 10 seconds & I had a chance to " catch

my breath " or that if the pain was lessened by 1 %, the surgery would have been

worth it. He wouldn't promise me any type of success for even 2 seconds post

op, but I knew that anyway & I didn't care. I only knew one thing absolutely

for sure. And that was, that I couldn't live the way I was living anymore.

I couldn't live with the constant pain that I had, that only worsened everyday

& grew like a cancer & was destroying not only me, but my husband, my

marriage, my children & anyone & everyone around me. There was no choice for

me.

~~~~~~~~~~~~~~~~~~~

He did his research & preparation & we did ours. He anticipated I'd be out

of work 6+ months. The end, as you know, is that it is now 11, almost 12 years

later & I still have, just about 0 pain. I went back to work 5 weeks after

the first one & 7 weeks after the 2nd. They were done 9 months apart. The

first one in March of '93 & the second in December of '93. I went back to work,

because the pain was gone, I had my own office & they were willing to pick me

up & bring me home, whenever I wanted to. The only rules were that I to move

around from time to time, so that I didn't throw a clot. He said if I did

(throw a clot & die), he'd kill me (LOL, LOL). You've seen me walk, as have

many

of you have. Would you ever have known that I had bilateral TKR's over 11

years ago? The only thing he did differently, was that he had 6 units of blood

ready to go, instead of his usual 3-4. I believe I only had 3 each time or

thereabout. He also said that the main reason he was able to do it as he did &

that we were as successful as we were, was all of the excellent work that had

been done to preserve my joints by my prior surgeon (who didn't do TKR's). He

had done an excellent job of preserving whatever cartilage he could for as

long as he could, which eventually was completely gone & sever arthritis, had

long since set in. But, Dr. Jaffe insisted that the years that the previous

surgeon had done over a period of about 15 years, had given him the ability to

perform the replacements as he did.

~~~~~~~~~~~~~~~~~~~

So, there 'ya go. And I'm serious & you know it. Should you want to even

come out for a consult, you can surely stay with us. And I surly also mean it

when I say that you could also come & have the surgery here & then stay her

afterwards as well. And/or you could always speak to Dr. Jaffe & ask him if he

knows anyone out your way that he would recommend. And then it might be a

good idea if they spoke a bit.

You know I'm always here for you. Love you lots,

Luv 'Ya,