Hello, I am on this list because my daughter, who just turned 16, has TOS and is
scheduled for bilateral rib resection in a few weeks. We have known that she
had this problem for quite some time; it took the doctors and many specialists
to finally get the diagnosis and we were getting tired of waiting for
"confirmation" of the condition(s) and finding a doctor that was both willing to
take her case and be covered by our insurance.

My daughter actually has two different kinds of problems with the brachial
plexus. We believe that the left side is due to an injury from a few years ago
and the lesions are probably actually scar tissue. The right side appears to be
a "congenital" condition, i.e., one that she was born with but is just now being
detected.

Her first problems were related to a fall from a bicycle accident. She hit her
left elbow/shoulder twice and that caused some left elbow problems. She had
surgery to remove an osteochondroma (extra abnormal bone growth) and basically
this included Cubital Tunnel symptoms. Although the Operative notes say that
she had a nerve transposition, she still "has her Funny Bone" and when her left
elbow is accidentally hit, it certainly lets her know that the nerve is still
there!!!

She also has Gilliat-Sumner hand (wasting of the muscles in the hand). In her
case, it is the knuckles at the base of the pinkie and ring fingers. This is a
permanent condition; we are concerned about the long-term ramifications of this
(after getting through this next surgery). We would appreciate any
feedback/suggestions that others might have for how to deal with this problem
next.

My daughter has no feeling in her left hand below the wrist. She drops things,
and does not know if they are still in her hand unless she looks at them. A few
weeks ago, she accidentally burned her hand on our wood stove and did not feel
it at all. This was significant enough that it finally got the attention of our
medical crew and they did a sensitivity test (which she failed). We believe
that she either did not know, or could not admit, that she had lost more feeling
in her left hand; this has all been very difficult for her to deal with.

To top it all off . . . about February of 2007, she was about 6 months post-op
from the elbow surgery and said the symptoms were coming back and now included
her left hand as well. That was very confusing; we had a spine specialist check
it out and nothing showed up on MRIs of the spine. So she was sent to Pain
Management for more nerve conduction studies and put on several meds.

Then in March of 2007, she had a head injury while on a trip to Chicago with a
youth group. It seemed to make things worse and her pain level became almost
unbearable. Cymbalta is one that she has some relief with for these symptoms,
but we have never fully covered the possibilities from the head injury with a
brain MRI . . . her insurance apparently limits how many MRIs she can have,
unless a specialist orders them.

My daughter is very thin, very intelligent, and (emotionally) at the end of her
rope, so to speak. She is a real "trooper" and I do not know how she manages to
put up with all that she has so far.

Last Sunday, she was leaning forward with her head resting on her right arm and
suddently something seemed to "snap" and she said it felt like a
ring/circle/band of pain, between her right elbow and right shoulder. She said
it went completely numb/dead from that area and all the way down her arm,
including her hand. She was taken to the ER. They did two films of her right
shoulder but really did not know what else to do; I think that we/I knew more
about TOS than the ER doc did. We were going to the cardiovascular surgeon in
36 hours and he knew that, so there wasn't much more that he would do.

We considered going to Tulsa that night anyways, but after a little while, her
pain level was somewhat manageable and she still had good circulation in her
hand/arm. The next day, I noticed that the right hand and wrist area were
swollen. How on earth such a serious thing could occur from just resting her
head on her arm, is still beyond me!!! I could understand if she had been doing
something physically demanding, but this was kind of ridiculous and I think it
served to point out the seriousness of her TOS.

Anyways, it has been a long and difficult time until prompt diagnosis could
occur. I know that TOS is a matter of eliminating other things, but wonder why
it takes so long to rule these other things out. She has been through 6 (?)
rounds of PT with 3-4 different places/people and they did not help at all. So
now it is time to face the surgery.

We live due east of Tulsa and have found several very good doctors in the Tulsa
area. My daughter will be having Bilateral Rib Resection at the Pediatric area
of Southcrest Hospital - Heart Center. It is the building/hospital with the big
Panda bear on it. I find that significant . . . her first baby toy was a
crocheted black and white panda bear that her (now deceased) great grandmother
had sewn! Maybe God is providing an answer to all her/our struggles, now that
things are falling into place.

This has really tested my faith - I am not ashamed to admit it! To see my
daughter suffer in pain and watch how it affected her school activities was
probably as hard on me as it was for her. School is out now and I am thrilled
that she is home during the days. We have lots of medical appointments (not
just hers, other family members as well) and our family is under counseling to
help us all deal with the stresses of medical problems in the last two years.

Our gas expense for medical appointments was running about $300 a month and we
are on a very limited budget, due to my husband being disabled. We found a
program called SoonerRide that will either reimburse you (mostly) for the gas
expense, or they will take "reservations" and have designated drivers to provide
transportation. I do not know how we would do, without all the wonderful people
that drive for SoonerRide for our appointments!

Now I've written a book so I'll end this and save something for another post
later. I look forward to sharing with others what we're going through and hope
somebody can also share their experiences with us. We need a lot of info to
know what to expect in the upcoming surgery and how long it will take to
recover, etc.

Debbie Dahl
Oklahoma

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