Out of place ligaments and tendons. Oh My! BERNIE

[Guest guest]

Bernie~~

First off, I am now 48 and that was 24 surgeries ago when I was 11 years

old. EDS wad not in anyone's vocabulary that I knew certainly not my first

orthopedic guy. Was he was surprised to see this? Not sure it was a long

time ago. I am pretty sure he said to my parents that he had not seen this

before.

The surgery I had done was, at the time, very experimental and only done on

one of the Globe Trotters. um that really tall guy. or the Lakers not sure

which was a long time ago. Anyway certainly never done on an 11 year old

but he was confident that it would work with me. It did work for me so much

so that in subsequent years and ankle twist injury later I actually had a

compound fracture in that are because the bone gave not the ligaments and

tendons. The ligament was not re-attached. There was a hole bored thru the

bone and a tendon was wrapped thru and around the joint to make a strong

stable ankle.

He was very pleased with the first result and just to make a journal article

I obliged him again 3 years later I messed up the other ankle so he could do

the surgery again but this time a version of the same procedure but

" modified " . I think at that time I was still the only child that had had

this surgery west of the Mississippi.

EDS was not a diagnosis for me till 2 years ago and most of my joints have

now been dinked with during some sort of surgery/fusion/reconstruction/scope

or other such thing so none of my parts are as they were when I first

started!

LOL!

I did have another interesting thing happen during my last surgery with my

thumb. A ligament was to be harvested to coil up like a sardine to insert

in the joint (lots of you know what surgery I am talking about - just can't

think of the name right now). He was supposed to harvest one of two

ligaments (it is typical to have 2 in the wrist area). Pre op he had me

make a fist and looked at the ligaments from the outside of the underside of

my wrist (sticking out) and said oh yes you have two that is fine we will

just take one.

Well, he got in there and of course my joint was shot like a 90 year old

tennis player and when he made the incision to take out the one ligament it

was so very tiny (although it looked ok from the outside when I made a fist)

he tossed it and had to harvest the only remaining one.

Apparently we don't need that particular ligament although I would differ

with him.

I think I need all my ligaments!

LOL!

Anyway. he had a really hard time with this one because it was miss-aligned

so he had to dig for it. OUCH post op I will tell you. I think that part

hurt worst than the wrist surgery!

So that is two " out of place " ligaments one in ankle and one in wrist and

the only reason that I know this is because he went digging for them during

surgery. Nothing every shows abnormal on tests by the way so there would

have been no way to know this pre-op.

The other odd thing is the way that my ligaments " attach " .

I have had 4 out of 6 of my surgeons say that they have had to " use all the

sutures in the cupboard " when putting me back together. It seems that it

LOOKS like my ligaments will not adhere to the bone so they use lots of

hardware just to be sure. The very odd thing is that my surgical results

have all been very good except for this last one where I have more pain,

developed RSD and little use of a shriveled hand.

So, do others know about this?

Not really.

My EDS is being treated one symptom or system at a time and there really has

been no need to talk about this before now. And besides, to whom?

Know anyone who would have really cared to discuss it till now?

HA!

I figured (and still do) that it is just part of who I am and have lived

with the strangeness for so long it does not seem, well, you know . not

normal!

I will certainly tell the doctors at NIH when I am studied and they can use

the information as they see fit.

I am getting really fatigued and my hands and shoulders are killing me so I

have to go. Did I answer everything?

Debbi

AKA: jetskideb

SoCal EDS'er

RE: Periods of looser joints

>>>I tend to strongly disbelieve that you have the tendons and

muscles attached in the wrong spots on the bones!<<<<

I would tend to agree but, I do!

My first orthopedic surgeon (when I was 11) told my parents that my

ankle

reconstruction was more difficult because the tendon that was intended

to be

harvested to replace the ligament that was torn and now atrophied was

" not

attached in the correct spot " .

So, although possible that was me and I have a tendency to push the

limits

of " normal " when it comes to ligament and tendon structure.

Debbi

AKA: jetskideb

SoCal EDS'er

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca