SURGERY???????

[admin]

My sons doctor thinks surgery is nessesary at this point in time. I want nothing more than to see my son use his left arm (ERBS PALSY) but I'm kinda scared for him to have the surgery. If anyone has went through or has had a child go through surgery I would like to know how it went. Also, was the surgery effective, how did the child handle the surgery....basically I want to know if it was worth it or not. All answers would be very helpful. THANK YOU, HEATHER

[Karen Hillyer]

Hi Heather
I have an 11 year old son with a right obpi, he has had 3 lots of surgery now, he had a nerve graft when he was 6 months a subscapularis release at 2.5 yrs and at 9.5 years he had a muscle transfer and another subscapularis release.
We have been very pleased with the results of his surgery so far, but it is always a difficult decision to take.
How old is your son now? do you know which operation your sons surgeon wants him to have? if you can tell us, we may be able to give you further information on how other children have been following the surgery.
Karen

[francine]

Hi! My daughter Maia has had 3 surgeries to date and we are beyond pleased with the results. She had primary surgery ( nerve grafting), mod quad ( muscle/tendon releases and transfers) and capsulodesis (to correct a dislocation). Surgery is certainly not an easy path to take but it can be very worthwhile.

http://www.injurednewborn.com/maia/homepage.html

Where will son be going for surgery? and what surgery will it be?

-francine

[admin]

My 6 year old is scheduled Feb 5 for mod quad A TCH, I also I'm unsure is this is for the best? I will meet with the Drs Feb 3, 2003 for full information. Anyone out there who has info on older children's surgery I would appreciate your experiences? My son is highly functional and I am especially worried over the apparent loss of function for several months initially? Is this common in all patients or different for each case? Carol

[sophie]

We have a 10 year old with bpp who has 90-95% function of right arm. She rotates inward slightly, and her range of motion limitations prevent her from reaching the right side of her face as well as beyond to the head. She has never had a surgical intervention but it is now being suggested/recommended at both Boston as well as Texas Childrens where she has recently been seen. Should we do it??????? We are trying to weigh the risk/benefits and the decision is particularly difficult given her already rather high level of function. The surgery would be an osteotomy. Any stories or suggentions that might assist would be great.

[Cara]

Every child is different. Our Daughter had nerve graft surgery at 1 yr of age at St. Louis Children's. We have been very pleased with the results. This is the thought process we went through, maybe it will be of some help:

Educate yourself about the possiblities of surgery vs no surgery

Decide if you trust your doctor (this was a tuffy, I have never been very trustful of Dr.'s the BPI made it 100 times worse, in the end though we felt secure with him)

Talk with your spouse and family

Pray

Pray some more

Pray some more and beg for devine intervenion

Go get a snack

Pray again... (Sorry, faith was really the key for us)

The biggest thing that swayed me was when my husband said, I am starting to understand that this is going to be with her for her whole life. I want to beable to look her in the eye as an adult and honestly say we did everything we could for you.

[admin]

Dear Sophie,

We have an 8 year old daughter with an injury to her left arm. Your description of your daughter is almost exactly that of our daughter. Seems they have the exact same limited range of motion. My daughter also has a slight pronation of the arm and cannot "palm up". She does, compared to so many children we've seen, have wonderful use of her arm and has never "babied" it or let it be a major issue in her life. My husband and I visited Children's Hospital Boston in September and are considering her first surgery. I cannot tell you how on the mark you are in your description of your daughter's condition and your concerns over surgery. The original suggestion was an osteotomy but after reviewing her scan, a tendon transfer is what will be done.
Plase keep in touch.
Ann