By Lin on Sunday, August 05, 2001 - 03:39 pm:

Hi, i remember someone else on this board had had surgery for ulnar neuropathy, and i am having the surgery in a few weeks. I was diagnosed with EDS type 3 from a geneticist, and HMS by an orthopedic surgeon. My neurosurgeon is the head neurosurgeon at the university of chicago hospital's center for advanced medicine, and is familiar with EDS. I just wanted to know if the surgery helped you or not, or any complications, etc. that i should watch for. I know surgery is dangerous with the fragile tissues from EDS.
Thanks,
Lin

By Gwen on Sunday, August 05, 2001 - 04:39 pm:

I had surgery for ulnar release and stabilisation
back in January. It was a 'redo' of an
unsuccessful ulnar release done in 1990. After
latest surgery all seemed well for about six weeks
but didn't last and I am now left with a very
irritable, hypersensitive elbow where the nerve
crosses the head of the ulnar.
For several years I have queried whether the
problem actually is coming from my neck and was
told it wasn't but now the orthopod is saying that
it probably is referred pain from C5/6 level
rather than a true ulnar neuropathy! Next move is
for me to have an MRI. Will keep you posted.

By Lynn on Monday, August 06, 2001 - 05:12 am:

My daughter (Kirstin, age 17) is scheduled for this surgery at the end of the month (dx-tarda ulnar palsy). Are there different techniques and are any more likely to work for people with EDS? She has Hypermobile type. Is there any rehab involved to help after the surgery? Thanks, Lynn

By Lin on Monday, August 06, 2001 - 10:40 am:

ok, thanks Gwen. I have already had an MRI, i had x-rays of my head and neck and the last 3 vertebrae werent lined up, so i had an MRI were everything was normal, because i was lying down versus standing for the X-rays, it was just my loose joints showing in the X-ray. For my surgery they are taking the nerve out of the groove and putting it at the top of the ebow, instead of across the ulna, because my neurosurgeon said its the containt rubbing across the bone surface that causes the discomfort, and by moving it to the top of the elbow, when i bend my arm it will no long be rubbing back and forth across something. Lynn, i dont know about different techniques, but my geneticist is friends with my neurosurgeon (they both work for U of C hospitals) and is talking to him to make sure he takes precautions like with the stitching to make sure it doesnt rip, and to minimize scars, and to be careful because of loose ligaments and things in the elbow where he is operating. Gwen, you also had a normal EMG, right? mine was normal but he wants to operate anyway because the EMG isnt an acurate diagnosis of this type of nerve problem. He says all my clinical signs point to my elbow.
thanks!
Lin

By Gwen on Monday, August 06, 2001 - 09:27 pm:

Lin, it sounds as if you are having the same
operation as my #2. The orthopod said that the
nerve was slipping out of the groove and he would
deepen the groove to stop this happening. What he
also found was that the triceps muscle attachment
was wider than normal and as I bent my elbow it
was pinching the nerve so he chopped a bit off the
side of the attachment to give my nerve more room.
However what I suspect is happening is that the
three elbow bones are subluxing and this is what
causes the pinching as I can feel this occurring
quite distinctly in my right elbow and it's as if
I've knocked my funny bone for a couple of days
afterwards. This sensation is constant in the left
elbow and I'm beginning to wonder if I haven't now
got so much scar tissue that there's less room for
the nerve than before. The point of my ulnar is
really irritable, as if I've banged it, the whole
time now. And yes, my EMG and nerve conduction
studies were all normal.
Good Luck Lin. Hope your op is a big success.

By Lin on Tuesday, September 04, 2001 - 01:53 pm:

Gwen, have you had an MRI yet? I found documentation on this type of ulnar neuropathy that my neurosurgeon said i have in an older medical text. I am going to be a doctor, so I love reading books on medicine. It was called some kind of tunnel syndrome, i found this a week ago and am just now posting so i dont remember the name. Similar to carpal tunnel, but with the ulnar nerve at the elbow. It said it can be caused by hypermobility, and this realy interested me, since you have the same symptoms and everything. The book mentioned that hyperextension of the elbow at rest, like swinging while you are walking, can irritate the nerve and pinch it. with a collegen like EDS, this simple rubbing and irritation in turn becomes scar tissue, the way EDS patients scar so easily. I just thought that it was realy interesting, and was wondering if you have found out if it came from higher up, or if doctors still believe its from your elbow.
Lin

By Gwen on Wednesday, September 05, 2001 - 03:35 pm:

Hi Lin,
Still waiting for my MRI. Firstly I had
problems getting the Accident Compensation
Corporation to accept that I'd had an accident
(1989) as their computer records didn't go that
far back but luckily I had a doctor's referral for
physio dating from then on an ACC form so they had
to back down. Then my surgeon has gone away for a
couple of weeks and his receptionist hadn't
received the ACC authority prior to him going. It
looks as if I'll have to give ACC a blast myself
and get thiings moving. Will let you know when
things happen.

By Lin on Friday, September 14, 2001 - 06:12 pm:

Hey all, wish me luck, i am having the ulnar transposition done monday. I am sooo nervous, i hate the idea of getting cut open. and since i am under 18, i have to spend overnight in the pediatric unit. if there are murals on the wall, i'm gonna scream. lol.
Lin

By Sheena on Saturday, September 15, 2001 - 02:07 am:

Lin, Good luck. I've had a few abdominal ops, but none of this type, so I don't know what to expect. Do you have a general anaesthetic, or a local?

By Lin on Saturday, September 15, 2001 - 10:02 am:

local i think. thats one thing that makes me nervous, i'd rather have general!! i dont want to not be able to feet my arm, i just know i am gonna panic.
Lin

By gwen on Saturday, September 15, 2001 - 03:57 pm:

Lin I had my first one under local. It was a fascinating experience. They give you a tranq first so you are nice and relaxed, not likely to panic. I was pissed off because I couldn't see what was going on but a very nice nurse gave me a running commentary. Your arm will be totally numb from shoulder down for about 3-4hours after the op. Am surprised you will be in overnight as mine was only day surgery, guess it depends on when your surgery is scheduled.
Good luck and just remember don't ***PANIC***

By Lin on Saturday, September 15, 2001 - 04:16 pm:

well, i am refusing to be sedated because the last time i was sedated i had a panic attack and went into shock. the dreamy feeling terrified me. I will panic from the 3-4 hours after is what i am worried about, not feeling my arm, i always panic if i wake up in the middle of the night and my arm is numb. Mine is overnight because i am under 18, so my doctor wants to observe me overnight because of the high doses of painkillers i will be on. the surgery is at 6:45 a.m.
Lin

By Lin on Tuesday, September 18, 2001 - 12:53 pm:

had the surgery. typing with one hand. i ended up going under general since i have a history of problems with sedation. i am on codeine for pain. it still hurts like hell though, and the immobilizer kills my wrist and shoulder. hard to sleep in it.
Lin