Injury Description, Date, extent, surgical intervention etc: To make an incredibly LONG story short... When I was born, my mother's doctor was out of town. A doctor that would not perform c-sections was forced upon us. Being 10 lbs, my right shoulder got stuck under my mom's pubic bone. The doctor pulled me out by my head, which ripped/streched all the nerves in my neck and arm (So, OBPI). I've had two surgeries at 9 months old, and 3 years old. My mother suffered as well. She needed both brain surgery and a shunt--She still sufferes today. My parents lost the court case due to a terrible jurey.
That's about it! Hope I can find somebody my age to talk to :)
Okay everybody.
I have been going to alot of doctors lately for my BPI and the significant scoliosis they found in my back. Well I went to Dr. Munin in Pittsburgh on Wednesday. He specializes in botox. My mom wanted to see if it was a possible choice to help my arm. Well make a long story short... He said that he didn't recommend botox because my muscles weren't necessarily "tight". So I started asking him all sorts of questions to see what his answers were, since every doctor seems to have different opinions on things. (And by the way he was familiar with BPI) So he told my mom and I that he thinks that the Mod Quad surgery has limited my arm from movements he believes I would possibly be able to do without it. The major reason he thought this was because how hard it is for me to raise my arm over my head. He was looking at my muscle, and he said that he believes what ever they did during the Mod Quad has limited that motion. He thinks that whatever muscle they tied back causes my scapula to move in a sideways motion instead of turning up along with my arm.
Well he is now the second doctor that has said he believes that the surgery was not the best choice, and still he cannot tell me whether my scoliosis is related or not.
Anyway, Dr. Harry Hoyen from Cleveland Clinic said some of the same things.
Does anybody have any new info on this?
Is this surgery now becoming not recomended?
Or, do some people still believe that it is better to have it done than to not?
Sarah/13/ROBPI
Injury Description, Date, extent, surgical intervention etc: My daughter has a right obstetrical injury. She is 16. Two surgeries include nerve graft and muscle release. A great kid that plays soccer, rides horses, plays the piano and clarinet.
I have heard this before (just parent discussion, not from a doctor). My daughter had the mod quad and I've decided I'm not sure I would do it again.
At the time I was thrilled with the results. Her arm was completely frozen at the side of her body and after the mod quad she had full range. Unfortunately, we followed up with the surgeon three years after and he told us that she should have a repeat of the surgery as she was tightening up again. I said NO WAY! (I should add that we did all physical and occupational therapies, range of motion, estim, etc.. So it wasn't because a lack of effort or ignoring the arm.) I brought up on the message boards at the time -- was the mod quad meant to be band-aid or a solution. I was led to believe it was a solution but I now believe it to be a band-aid.
That being said, at the time it was the best decision for us and I can't second guess myself now -- it would be a losing battle. I do feel there are less invasive ways of achieving similar results now but as with everything to do with bpi treatment, it is a personal decision and there is no defined treatment protocol. You have to decide what is right for you and your family!
Best wishes!
Kim
Kim West
"Children are likely to live up to what you believe of them." Lady Bird Johnson
Injury Description, Date, extent, surgical intervention etc: To make an incredibly LONG story short... When I was born, my mother's doctor was out of town. A doctor that would not perform c-sections was forced upon us. Being 10 lbs, my right shoulder got stuck under my mom's pubic bone. The doctor pulled me out by my head, which ripped/streched all the nerves in my neck and arm (So, OBPI). I've had two surgeries at 9 months old, and 3 years old. My mother suffered as well. She needed both brain surgery and a shunt--She still sufferes today. My parents lost the court case due to a terrible jurey.
That's about it! Hope I can find somebody my age to talk to :)
I agree 100%. At the time the surgery was the best option for bpi. My family thought it was great, I did improve greatly. Although like you said, there was probably less invasive surgeries that most likely could of helped me get the range of motion I have now. I also believe that with the mod quad, it took away certain motions you could of had, in order to help gain more important range of motions. At least in my opinion. But, I guess you can never know for sure. You do what you think is best.
~Sarah :]
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.
HELLOOO SARAH!
I am soo glad you posted! It is good to hear from someone your age who has been thru this & hear it first hand!!!!
HUGS,
"gramma"Carolyn J
LOBPI/72
