Surgery question

[Savannahsmom]

My daughter just had an EMG & MRI done this week and the results were that she had no tearing of her nerves but streaching and scarring preventing her triceps and shoulder from working. Has anyone else delt with this and had surgery reccommended? I would appreciate any experiences you have to share. Thanks, Heather

[Lenni]

Hello there! What kind of surgery are they offering your child and how old is she?

[admin]

She is 8 1/2 months old. They said they would go in and replace the scarred nerves with good nerves. The scarring is between her shoulder & elbow.

[francine]

Heather- welcome to our message boards....

Since you just jumped in with questions, I'll try and answer as best I can but first I also have some questions for you:

(1) how old your is your daughter?
(2) what type of doctor has given you this information - was he/she a brachial plexus specialist?

About the tests, it is my understanding that neither test is very conclusive. Here is what Dr. Gilbert (bpi expert from paris) has written about it in his site:

"AT 3 MONTHS

The surgeon will decide upon primary surgical repair if there is absence of recovery of biceps or complete hand paralysis with Horner’s syndrome (see algorithm).

At that stage EMG, which has little value to predict recovery, may be useful for the determination of possible avulsion injuries. EMG testing can be less painful with the use of anaesthetic cream one-hour prior."

this comment and more are found at http://www.obstetricalpalsy.net

We were also told by Texas Childrens Hospital that out of 100 MRI's they checked, only 5 had matched what they found intraoperatively.

So with this in mind, I would highly suggest going to a brachial plexus specialist who is expert at assessing the child by what movement is present. They take the age of your child and know exactly what kind of movement should be present at that time.

I am curious about something... if her nerves were only stretched, then what scar tissue would be present that would need to be addressed by surgery? It is my understanding that scar tissue formation (neuroma) only occurs when there are tears (if even minute). Neuroma and rupture go hand in hand - without a rupture there would be no neuroma.

So in the least - there are a lot of questions to ask your doc about.

on this site there is a really good awareness section
http://ubpn.org/awareness (birth injury section)
There are a lot of good pages there to read and print off. Check this one out:

http://ubpn.org/awareness/A2001Rnewparentguide.html

Keep on asking more questions ok?
-francine

[admin]

Thank you so much for your replies. They are so needed. We do take Savannah to a bpi specialist @ Childrens Hospital in St. Louis. She is 8 1/2 months old. I thought of that same question after we left the hospital about how does she have so much scar tissue if there was no tearing? I think that once they get in her shoulder, they would find much more than the MRI would show. They are just really suggesting surgery due to the fact that she has no tricpt or shoulder movement. When I return next month, I am going to ask more questions. It would just really help me to know some questions I should ask from parents who have been there.

[Kristie]

Heather,
We are considering a similar procedure for my 13 month old son. For us they will not be removing any of the nerve just releasing it from Scar tissue (neurolysis). I have been looking in to it as much as possible. Since surgery has been recommend to you I would suggest that you get a second opinion. I think since so many BPI doctors out there don't agree on how to treat the injury that getting a few opinions is a good idea. I would love to talk to you more about this feel free to e-mail me at kristierogers@charter.net
Maybe we can exchange phone numbers and really talk!
Blessings,
Kristie

[NancyP]

Please be careful, and evaluate every opinion you get. We live in the midwest, and went to a clinic (not St. Louis) where they focus a lot on the rehabilitative side of bpi's. Our doctor told us that Kelsey would never raise her arm over her head, that the surgery would be disfiguring, and would pose self esteem problems later in life b/c her chest cavity would cave in from restructuring. Then we got a second opinion, and with an incision in her armpit, and not visible, my daughter can raise her arm way above her head. If you want to e-mail me, I can give you more specifics regarding that particular clinic.

Good Luck!

[christy]

katie had her MRI a few days before she was scheduled for primary surgery at TCH. Fortunately her neuro warned us that while our docs knew to "look for trees but as they normally only see bushes they may not recognize the tree for what it is". Meaning they were not used to seeing this on a regular basis. Sure enough, it came back as clean, no tears, ruptures, avulsions. Her ortho docs released her, first saying she only had a minor stretch and when I pushed about her deficiencies he became exasperated and said "what do you want--it is a damaged arm, it will never work normal, this is as good as it gets" When he heard we were taking her to TCH he said that had he known we wanted to pursue the issue he would have sent us to St. Louis--where he came from. The kicker is when she had primary, even though she had a clean MRI under her belt, she had 2 ruptures, 2 avulsions, ruptured cervical and platysmal muscles and the fat pad around her collar bone area had become necrotic from lack of bloos flow. And not one bit of this showed up on any MRI or was found by our local specialists.

I would do more research (and I am not advocating surgery here, that is each person's choice and not all of the kids need it) and identify the various movement schedules and take it from there. I know most of the BPI programs have pretty much the same guidelines but our neuro says if no COMPLETE recovery by 6 weeks of age he recommends looking at specialists and taking it from there with the group one would choose. He told us if recovery was not complete at the six weeks the child may not need surgery and that would be great but they would have issues to deal with even if they recovered by the later dates established by the BPI programs. So keep researching and asking questions. It all depends on your child and what she has...