Re: surgery/ellen & Pam P-H

[Guest guest]

Hi,

I usually don't write too much on surgical experiences I've had as they were so

many years ago. Most of my surgeries are an example of the successful end of the

spectrum so I thought perhaps I would put a word in here.

In the early to mid '80's I had a torn right medial meniscus removed and have

never had another problem with it, and my knee has remained relatively stable.

The left knee was an entirely different story.

One day I was showing our young children how we did the twist back when I was a

teenager......wrong move! I felt something tear and rip in my left knee.....this

led to 6 surgeries on my left knee-not counting hardware removals. First one was

a torn medial meniscus, which was removed the " old fashioned way " by making a 4 "

incision. It was successful, and has never bothered me again. During a

hardware removal a few years later it was scoped and found to have grown back in

completely smooth.

The next surgery on it was to tighten up three ligaments in the anterior knee,

as soon as I came out of the cast we knew it was a failure. I had complete range

of motion... and for some of us with EDS that is far beyond 'normal'. My ortho

that assisted with the surgery then referred me to the university hospital here

in Wisc. to a sports medicine surgeon. this doctor had thought he was finding it

was an ACL tear, but when I went into X-ray, the resident came along and applied

mild pressure to my bent knee while I was laying on my back and found it was a

PCL instead, just as he thought.

In this surgery a bone graft was done. The graft was taken from the patella on

that same side. I had an excellent recovery. He was also going to do a

Ileo(sp)-tibial band transfer, but the PCL took 6 hours and felt it would be

better to wait 6 months to do the I-T band. The I-T band transfer lasted about

3 months. I had it done a second time with a new procedure that he had come up

with. This one was stable for about 8 months. He then developed a procedure

using a donor tendon. It worked!! After all of these, and the surgeries for the

all the hardware removal, I've had a knee that's about 95% stable. As far as I

know I have no arthritis in the joint. There's no stiffness in the joint, and

pain only when a storm front is moving in, or its' been stressed way too much.

Rarely it 'gives out', so I use a cane when out shopping as I feel more secure,

but I mostly use the cane to relieve some of the stress on my back.

All in all I'm extremely pleased.

As far as shoulders, both of my shoulders dislocate in three directions or so

I've been told, and also that it's better to leave them alone than operate on

them and create even more of a problem. I've come up with various ways to

support my lower arm, and have gotten some tips from those on the list. After

all these years I'm glad I didn't have anything done. --None of this is due to

torn rotator cuff, though.

There are times I've felt the need to go ahead with a surgery, but other times,

I've felt it better to not do anything and see what happens. It all depends on

what the odds are, what I gather from others, and also a bit of the " inner

voice " on the matter. More importantly it includes the reasoning that Pam wrote

about: the surgeon's competence & the condition of the ligaments around the

joint -if they are not too lax.

As far as bleeding after surgery, I too have very little bleeding-even though I

bruise like crazy normally. I also have little to no swelling after surgery.

I've found that I have a tremendous amount of pain immediately after surgery,

but within a day or two, it stops, and I have even less than normal complaints

of pain. I also need to have sutures placed close together, and left in longer

than usual to avoid the wide paper thin scars.

I'm not in any set type of EDS for sure.

Good luck to you Ellen and Pam.

H.

~~

From: Ellen Feldman

I would like to do an informal survey. First has anyone with the classical type

of eds had any kind of surgery including joint surgery and how did it go?

Second, I would like to ask this question to all members on this list. Thanks.

Ellen

From: Pamela Popken-, Ph.D.

I think that if surgery if performed for the right reason with a competent

surgeon, and that the connective tissue or ligaments around the joint are not

too stretched or lax that it can be successful.

I also had a rotator cuff repaired when I was 38(smallish tear, less than 1 cm).

Finally, I also know that I have a smallish tear in my lateral meniscus in my

left knee but have just been letting it be for several years now. I would also

be interested in finding out if any one has had surgery to repair a torn

meniscus.

I have had no bleeding complications with any of my surgeries, and if anything

bleed less than expected. This supposedly is a characteristic of the classical

type. Hope this helps.

Pam