Re: Big Day at UNC ATT: RIAUSSIEJAKE (Mini Aussie)

[Guest guest]

Dear Sue:

As everyone knows, there's been so much mail (and that's a good thing,

really), but it's been so hard for everyone to keep up with what's going on with

everyone else! So, no one can keep up with all of the mail & surely I couldn't

so I didn't know your're whole situation. Gosh, you've had a rough time. BUT,

3 things...

______________

You said. " Sorry to be whining but I've had it "

Please, don't ever, ever feel like you have to apologize to anyone here for

what you think is you " whining " . You need to let out whatever is inside you &

that's what we are all here for, for each other. Please, we are all in the

same boat, with all kinds of difficulties & hundreds, maybe thousands of people

over the years have been comforted, knowing they can always come here & " get

out " whatever they need to. Believe me, we understand.

______________

Also, I never knew that your current issue was do to a possible osteomyelitis

in your ankle or a non union from a (Non) fusion. And believe me, I do

understand how scared you are. Believe it or not, I've undergone 50 operations,

mostly on my knees (including bilateral TKR's) & lots of shoulder operations &

one on my left hand & @ a year ago, YES, an ankle fusion! That was the most

recent. I have been very, very fortunate & I'm afraid to say it, but I have

never had an infection (except several, on a ton of dental work!). And all of

my

operations have been extremely effective & successful. Actually, before the

ankle fusion, you could see me & not even know I had ever had a single thing

wrong with me! But since the fusion, life has been a holy he......ll, if you

get my drift.

______________

I complained from early on. The surgery was in April 2003, the pain

continued to worsen until 8/03 when the surgeon (Mr. Wonderful in NYC, you know

that

kind of guy!) said he felt it was likely irritation from the screw. And he

suggested removing it, as he felt we had a perfect fusion. I should have known

better from the start as the 10 minute surgery turned into over an hour. The

darn anesthesiologist couldn't start an IV! Now, I admit I don't have the

greatest veins, but it's never taken more then 2-3 tries by an anesthesiologist

&

they usually get it on the first shot. But 45 minutes & at least 11 holes &

bruises that I counted later (and I'm sure there were more) he couldn't start an

IV! And you'd think the anesthesiologist would have listened to me. As I

kept giving him little hints on how to make the IV's work. First, you could say

I've been through this just a couple of times! Then, not only am I an RN,

but I was a hemodialysis nurse at one time & I can put in needles 20 X the size

of the IV he was using & I know every vein I have. But, they yo-yo wouldn't

listen to a word I said.

The surgeon was pacing, I thought he was going to have an M.I. & he kept

asking me if he could do it under local & just give me a shot into my ankle. I

said NO @ 100 times. Finally, against my will, he gave me the shot, which of

course killed me & then of course I felt everything, which is one reason I said

NO! in the first place. I've had prior operations with local injections &

felt everything. I'm sure it was only @ 15 min., but it felt like 2 years! I

honestly tried to get off the table, but was unable to. And yes, I would have

done it. ______________

To make a long story short, the pain continued to worsen & month after month

he did X-rays, insisted all was fine & was about to call me crazy (so what

else is new, right?) But by 11/03, when he wanted me to go to P.T. & start

taking long walks, I said NO & I stuck to it. Again X-Rays were negative & then

an

MRI was negative. I said I didn't care & said, " Do a CT " . It does show more

bone. And what do you know?? By then, I had a

90%+, non-fusion. Big surprise. Well, now he believed me. Too little too

late. He had a rush AFO made which I was to wear 24/7 & he had me using an

electronic bone stimulator from 3-6 hours a day, to hopefully stimulate growth

of

new bone cells. He thought that since a tiny piece of it, right in the

center, was still fused & the bones were then, of course, non-displaced, that we

might get lucky & it would fill in with new bone & it would re-fuse on it's own.

______________

Well, not to be funny, but 'ya gotta keep your sense of humor, BUT the bones

decided to " refuse " to " re-fuse " . I knew because then I had asked for another

CT to see if we were at least headed in the right direction. After all, it

had been over 5 months since we had started this. He argued with me, saying

that we had decided that we'd give this a chance for up to 6-9 months! Can you

believe it?? Besides, he did say (and my husband was there so he heard it

too) that we would repeat the CT midway. But he didn't seem to remember saying

that. I said what difference did it make whether he remembered or not, didn't

it make any sense, especially because the pain was much worse?? He finally

relented & did the CT. And of course, once again I was right. NOW, I now have

a COMPLETE non union, just as you do.

______________

Well, I've had about enough of this yo yo & he doesn't know it, but I

contacted the hospital, got a copy of all of my radiology & I already had the

MRI &

both CT's & on Monday I have an appt. with a new surgeon & believe it or not, I

have one with the original jerk on Tuesday, only because I want to hear what

he has to say, but you can be sure, he will never see me in an O.R. again. I

don't care what his record & credentials are, I have no faith, nor trust in

him. How can I? And no one could surely lay down on any O.R. table with

feelings like that @ a surgeon.

______________

So, needless to say I would love to keep in contact with you, (either on or

off CEDA) both to see how you are doing & what happens, but also to compare

notes & see what you find out in N.C. Believe me, though I live in NJ, I'd go

to

N.C. if I felt it was right, even if only for a consult. May I ask who you

are seeing? And, are you from N.C. or are you going there just to see him? If

this is personal, you surely don't need to answer. I've been traveling from

Central, NJ into NYC for over 25 years, not only for my own reasons, but most

Doc's here don't want to touch me & I don't blame them. And my original

surgeon, without whom I'd never have been able to even have my TKR's, (because

of

the incredible work he did pre TKR's, which was told to me by the Dr. that did

the TKR's) now lives in Fla. & is, I would say, semiretired, but I've been to

Fla. to see him several times already & he's already operated on me down there

once. But I have started with someone else now. But honestly, it cost me

about the same to see him in Fla., as in NYC & takes @ the same time to get

there!

When you add up the gas, tolls, exorbitant parking garage fees in NYC, etc.,

& compare it to a good fare to fly to Fla., it comes to almost the same. And

coincidentally, his new office is 20 min. away from where my parents live, so

I just visit, like I do all the time anyway & hop over to his new place,

where I don't even pay for parking!

______________

I truly hope things go well for you with this doctor & that you hell quickly.

And always know that we are all here for each other. Take care & be well, I

very much look forward to hearing from you. Schoenberg

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

In a message dated 4/9/2004 3:02:54 AM Eastern Standard Time,

shazzinoz@... writes:

HI Guys

Just writing to say hi. I am up early because we got an early appointment at

the University of North Carolina Hospitals (yes, it is like a small city) to

see the top ankle guy there. Hopefully today I will find out if I have

osteomyletis in my ankle or just the non union from the (Non) fusion. I am kind

of

scared. I want it to be better but I don't want it to hurt but if I don't do

anything I can't walk and that darn pin keeps moving around and I

will still hurt. I remember when I was a kid and always having surgeries

people

always said how brave I was and the surgeries really didn't bother me...more

like an

adventure. Well, my adventure is over I am so tired of all this non stop

surgeries,

infections just general falling apart. It seems like I can't et out of bed

with out a shoulder or collar bone moving elsewhere. Sorry to be whining but

I've had it. I don't want to deal with EDS any more. Sorry for whining. I'll let

you know what the opinion is of this group (everyone seems to have their own

idea of what is going on) Have a good day or night everyone. I am

ready for a vacation on a nice beach with clear water, pink sand, being able

to eat lots of

food without gaining wait......anyone else want to come?

Sue & Jakie (Mini Aussie)