Questions on Operation for my son age 1 and 1/2 years

[renpie]

Hello everyone! My name is Renee. I have a son, Michael, who is 1&1/2 years. He has RBPI. I don't know all the abbreviations, sorry. But it's his right arm.
I have some questions that I wondered if some of you could help me with?
Do you always get second opinions?
Whom do you recommend in CA. as a second opinion when Dr. Nath is the first? I was given one name by Tina (Thank you, Tina) but does anyone suggest another and why do you suggest him/her? Thanks?
Why could it be dangerous or possibly not beneficial if I get a Mod Quad operation?
My son's (sorry, I don't know all the terms so I'll try to explain as best as I can) elbow is bent and his wrist and hand don't work very well. He has a little grasp but not much. He wears a brace 4 hours or so per day and when he does, he can lift it more upright when motivated and he can handle holding things better, like little toys, etc. But when it's off, he can only lift it up to his chest. He can't put anything in his mouth or touch his opposite shoulder.
He had a first operation but they only cleaned (nuerolysis) his scar area inside as they said he was electrically implusing enough, (sorry, don't know how to explain this in proper medical terms). Really, since his birth, he has improved but not considerably at all. Just a little. He has a strong arm, muscle wise but it doesn't work very much and his shoulder either.
Does that give you a clear enough picture? Are many of the other kids like this? Is he medium in his injury? Or ...?
Are you basically all happy with Mod Quad operations? I read a thread somewhere, couldn't find it again when I looked, about second opinions and I posted some questions there but sorry, never read any answers as I couldn't find it so here are my own questions. Thanks for reading and answering. I appreciate it. Have a great day! Bye! Renee

[cybermomx4]

My son had mod quad and I am way impressed. It is a terrific surgery. My son had great recovery. He is almost five and can do things never imagined...even swim. I am so happy that we decided to go with the MOD

[carron]

Hey just wanted to say my son had mod quad almost a year ago this Aug. I am so amazed at what he can do. He had no shoulder movement at all before surgery. It took us a few months to see anything but he can raise his arm up. His arm is also bent at the elbow a common thing with bpi kids. Bicep and no tricep or deltoid for Thomas this means another surgery when he is 3 or 4. He does have good hand movement but that came with therapy twice a week and hard work... He has came from no movement three nerves torn into nerve graft surgery and mod quad. to moving his hand and fingers and now his shoulder. Its not perfect but he can use it....I was worried about having it but then someone said if he has no movement what does he have to lose from surgery ... I am so proud we have done all we have he is 2. e-mail me if you need too
Carron

[m&mmom]

Renee,
We always get second, third or forth opinions. We keep going until we feel comfortable with the surgery we choose.
I know someone who saw Dr. Hentz in CA and she is very pleased with him. I think there is also a Dr. Pearl out there.
We are basically happy with the mod quad operation he had last year, however at the time of his operation they released his pec mucsle and if I knew what I know now I would not have allowed that to be done.
The best thing you can do is trust your gut.
Good luck.
Cindy

[momofnickelman]

Cindy....could you explain why you would not have wanted his pecs. released? Just wondering what the effects are? Is there something he can not do now but could do before?

[m&mmom]

Matthew's arm was internally rotated and his pecs were tight before mod quad. We were told that after mod quad that his internal rotation and pec tightness would resolve once the pecs were released. After the splint came off his shoulder was still internally rotated. Then after a short while his pecs began to tighten up again. So in the end the mod quad did not resolve the internal rotation or pec tightness and the pecs were cut for nothing. Some bpi docs are starting not to cut pecs and I think in Europe they do not cut the pecs as well. His anterior capsule is tight and that's what caused it and is continuing to cause it. So once we have the anterior capsule release done his arm should be in much better shape. I probably would have opted for this surgery over mod quad if I had known about it last year.
Cindy

[admin]

greetings and welcome
I am mary, my youngest son Max has a left BPI, he is 4 1/2, I have 6 kids,
We have not had any surgery to date, actually Im not sure even a serious functional impairment would prompt me to have surgery(but I would definately consider it) but pain would, and that is something that the surgeons will likely bring up...
How well your son deals with surgery would be a consideration also, youhave asked about drawbacks and risks,
so I will state the few that cross my mind; these are not neccessarily so, just possibly so,
emotional risks
secondary infections and
affiliation with medical interventions, seems to always lead to more interventions, surgical or other, which would then repeat the original risks,
there is also the point that the mod quad would not be affective for your child, there seems to be a debate albeit quiet, regarding the modquad and another method I believe discussed by another poster
all in all, lots of folks are here and supporting you to choose whatever is best for you, peace and blessings, mary (who cannot seem to log on today)

[admin]

My Name is Tom , I was Born with ERBS in My Left arm From Birth.When I was a BABY they told me my arm was form that way..WE know better in 2003, You need to talk to a lawyer.I am power I am amaster Diver and I drive a Semi One Handed And If I can Help Gost Let Me Know. WHAT YOU DO NEED TO KNOW THAT YOU ARE NOT ALONG AND THAT YOU ARE DOING THE BEST THAT YOU CAN!!!!!!