RE: Ellen-joint replacement

[Guest guest]

Dear e:

I really don't have much personal experience with spinal surgery

(fortunately..... knock on wood), but one of my first cousin's, does. She is

the only one of many cousins who has been " hit " just about as hard as I have

been with EDS (though a number of others, aunts, nieces, nephews, cousins & t

heir children all have some symptoms, but none think that " they " have it

too), which is a common occurrence in families.

I had, as they say, " dumb luck " . I didn't know until about 10 years ago

that I had EDS, had never even heard of it & had no problems at all, when I

was young. I didn't really have any problems until my pregnancies, with

premature labor & then bed rest & then I really started to fall apart because

of loss of muscle mass. I had undergone 1 or 2 Left knee operations, but we

all thought they were due to a skiing accident that I had before them & had

no reason to think anything else was going on.

I have 2 children, ages 19 & 22, a girl & a boy, who do not appear to be

affected at all. They have been seen on several occasions by Dr. Tsipouras &

he feels that they absolutely do not have it. As a mother, naturally I'd

prefer if there was a test to confirm it for sure, but alas for my type there

is none yet, but it really looks like we got lucky. And, I think if I ask

him again, he is going to " let me have it " !!! And, since they are both in

college, have never had any symptoms and my daughter is a professional

dancer, but is now back in college & dances on her school's team & my son

plays hockey for UConn, so we're looking pretty good. I have no idea what I

would have done about children if I had known beforehand that each child I

had, would have had a 50/50 chance of inheriting it and many have asked me

what I would have done, if I had known. Let's just put it this way, I'm glad

I didn't know & that things turned out the way they did. I know I was very,

very, very lucky.

And, before I was diagnosed, ( & I was the first in our family) my cousin

herniated 3 cervical discs pulling a wet towel out of her washing machine.

Not knowing that EDS was floating around in the family, she had a fusion

done. Not surprisingly (it's always easier in retrospect) the discs above &

below the fusion slid in opposite directions, causing a huge mess, as you can

imagine. In between I was diagnosed & she wound up needing her surgery

redone. However, the second time, with EDS in the picture & the fact that

she lives in land & had access to some of the best surgeons, (I think she

went to Hopkins) they re-did the surgery, but involved a whole lot more of

the vertevrea/discs, above & below & literally drilled holes up through the

spines (the outer edges of the vertebra) & put in guide wires to attempt to

stabilize her spine & did a whole lot more as well. The surgery worked

pretty well that time & has lasted for at least 12-15 years now. She has

some trouble with numbness, etc. on occasion, but nothing like her prior

difficulties.

I/we also have the hypermobile type & I have had @46-48 operations,

mostly on my knees & shoulders & one on my left thumb. It sounds like a lot,

but it really wasn't as far as I'm concerned, as it gave me the ability,

according to my second surgeon (as my first didn't to joint replacement) to

have the knee replacements when desperately needed. As far as we know, I was

the first documented case of successful knee replacements in someone with

EDS. We/I had known of numerous people who had the surgery, but weren't

successful, either because the docs couldn't stabilize the joint, it feel

apart soon thereafter & I knew several people who had it done over & over &

over. My surgeon who did the replacements, just almost 10 years ago, 9

months apart, could easily have taken the credit for the success. However,

he told me that if my initial surgeon had not done all of the work he had

done for the prior 20 years, he would never had been able to do what he did &

I would not have been a candidate for the surgery at all, which I have heard

from numerous others over the years, in similar situations.

To me, it was well known ahead of time that it was a long shot & given I

was only 38 at the time, there weren't a whole lot of docs knocking my door

down wanting to attempt the surgery. But I'm an RN, live in NJ, near NYC &

did my homework, found a surgeon & he did his homework. And I was prepared

that it could have been a total failure & that might mean & wheelchair for

life, but it was well worth the risk, for me, due to the pain & disability.

And with a whole lot of help from **above**, as well as down here on earth,

if you saw me dressed now, you would not know that I had even sprained a knee

ever, never mind had bilateral total knee replacements. And this March will

make 10 years for my Right knee & December for the Left. I did have a fall,

totally unrelated to EDS & dislocated the Left one a little more than a year

after the initial surgery. It was reduced at a local ER, with my NY surgeon

on the phone as they did it. They, understandably wouldn't take me into NY

in that condition & the local ER docs didn't want to even be in the same room

with me, never mind try to reduce the dislocation, until they at least had my

surgeon on the phone. We then treated it conservatively for about 9 months &

then finally I had to have a revision done. They did have to reopen the

initial incision & for some reason it seemed worse than the initial surgery,

more because I think I wasn't prepared for that kind of surgery again. All

he did actually was replace the plastic spacer, but it felt like...... well,

let's just leave it at that.

I've since had another unrelated minor surgery on the Right knee. I had

developed a lipoma, which is a non malignant " growth " , just adjacent to the

Right implant, but they didn't even need to open the capsule. They just did a

quick " frozen section " to determine if it was a cancerous growth, which it

fortunately was not & then went ahead & removed it. It can certainly grow

back, but was removed for the reason that we went in. It has gotten so big

that it was leaning on a nerve or something & was causing a tremendous amount

of pain. It was about the size of a small plum, after 2 years of me

complaining. It's much better, though I do still have some discomfort,

however the implant appears to be near perfect, still. So we continue to

keep our finger crossed & laugh every time we/I hear that it absolutely

cannot be done. Well, here I am & I know of others that have had success

since then as well. I wish you the best of luck & if you would like to, you

can feel free to contact me on or offline. Best wishes,