Yes or No for Nerve Surgery???
-
katiexdobratz
- Posts: 26
- Joined: Wed Aug 08, 2012 7:49 pm
- Injury Description, Date, extent, surgical intervention etc: Baby with Brachial Plexus Injury
Yes or No for Nerve Surgery???
My daughter is 8 months (almost 9 ) and has a robpi. She has almost full elbow,hand and finger movements and can reach to ninety degrees so far. I am thinking that her dr in milwaukee may recommend nerve surgery for her. I had a horrible negative feeling when it was mentioned so i looked further. I called Dr Kozins office and his amazing nurse said NO DO NOT DO NERVE SURGERY!!! She said they dont do nerve surgery on babies who have regained elbow flex before six months old. I do not want to do nerve surgery...but a little part of me is wondering if i am making the right decision...anyone have any experience with this?? I am more than open to muscle/tendon transfers...but i just get this horrible feeling about nerve surgery. Also I was wondering if her shoulder could be subluxed. Her ot said she doesnt think so, but i dont know what the signs are. Any help would be great
-
Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Yes or No for Nerve Surgery???
Mom,
Please get 2 opinions from BPI Specialists and follow your gut after that.
"Bossy gramma" Carolyn J
LOBPI/74++++
Please get 2 opinions from BPI Specialists and follow your gut after that.
"Bossy gramma" Carolyn J
LOBPI/74++++
-
richinma2005
- Posts: 861
- Joined: Thu Sep 29, 2005 12:00 pm
- Injury Description, Date, extent, surgical intervention etc: Daughter Kailyn ROBPI, June 14, 1997.
Surgery with Dr Waters (BCH), April 1999 and in February 2012
2 more daughters, Julia (1999), Sarah(2002) born Cesarean.
Re: Yes or No for Nerve Surgery???
Agree with Carolyn. More opinion, but if she can get to 90 degrees forward flexion I would expect that nerve surgery is not really something to be considered. "Usually" there is secondary surgeries to help with ROM and they can wait till after 2 years of age.
Keep asking questions, trust your gut, and realize that your child no matter which route you choose will thrive and be successful. That is how BPI kids are.
rich
Keep asking questions, trust your gut, and realize that your child no matter which route you choose will thrive and be successful. That is how BPI kids are.
rich
-
dpoganik
- Posts: 59
- Joined: Mon May 13, 2002 10:07 am
- Injury Description, Date, extent, surgical intervention etc: my daughter Dani born 4/2000 with a robpi. She had a humeral osteotomy Jan. 2005 in boston with Dr. Waters.
- Location: New York
Re: Yes or No for Nerve Surgery???
I agree with the other posters. Please get a 2nd opinion. My daughter got motion back in the fingers, hand and elbow before 8 months. Her biceps didn't get motion back until well after a year. We didn't see a BPI specialist until she was 5. Her shoulder was being pushed out of joint and neither her doctor or us were aware of it. When we initially saw Dr. Waters he didn't recommend surgery. Based on her movements, he was sure she didn't need anything. She compensated very well. He sent us for a 3-D MRI and we were shocked to see her shoulder was dislocated. If we had gone with our gut and pushed her doctors more, who knows how she would be. Dr. Waters tried to put her back in joint but at that point it was too late. He did a humeral osteotomy to give her more motion and put her arm in the neutral position. It made a world of difference for her. Please don't give up. Find a BPI specialist. Use this site for a listing. We thought we had a BPI specialist (that's what he told us!). After reading an article, we found this site and Dr. Waters. Best thing we ever did for Dani.
Sorry this is so long. Feel free to inbox me if you have questions. Good luck!
- Dawn
Sorry this is so long. Feel free to inbox me if you have questions. Good luck!
- Dawn
-
katiexdobratz
- Posts: 26
- Joined: Wed Aug 08, 2012 7:49 pm
- Injury Description, Date, extent, surgical intervention etc: Baby with Brachial Plexus Injury
Re: Yes or No for Nerve Surgery???
Thank you all! So much has happened and so much has changed every day this week. We are trusting her now with Dr Kozin and we will do what he says. Its a very long story, but this man is unbelievable and Im so lucky to have found him and his office!