United Brachial Plexus Network, Inc.

Hi Everyone. My 4 year old son Michael sustained a OBPI at birth. Upon our neurologist's suggestion we took Michael to see Dr Waters back in 2003 when he was about 6 months old. After several visits and results of his MRI, it was determined he needed surgery. Thankfully he didn't have any ruptured nerves but he needed some shoulder reconstruction and a tendon transfer. After the surgery we saw some noticeable improvements and we involved him with PT, OT and aquatic therapy. I would say for the past 1-1 1/2 we have been seeing a downward trend. We had another MRI done and went back to Dr Waters for our annual visit. Not much was said but I didn't see all the positive attitudes from his staff that I had first seen on previous visits. I also brought my Dad with me to see what his opinion was. He sensed the vibes also. It pretty much has become a wait and see type of stance right now. Needless to say I was pretty upset leaving that day.

My physical therapist told my husband and I of a workshop that Dr Nath was doing in Albany. My husband thought it couldnt hurt to have a different pair of eyes evaluate Michael. ALso I thought maybe we would learn of different techniques in therapy to help Michael. Of course I didnt expect to hear his suggestion of another surgery-- Triangle Tilt. That threw me for a loop because I was afraid of putting MIchael thru this again and it not turning out good. I guess what I am looking for is feedback from anyone who has had this type of surgery on their children, positive or negative. I understand at this time this type of surgery is only performed by DR Nath, and I believe he said last night that about 125 surgeries have been performed. Also I know there isnt much data beyond the 5 year mark since this is a relatively new technique. I have an appt with Dr Waters in a week and 1/2 and I wanted some data in my head so I can discuss it with him. Any info given would be greatly appreciated. Also if Dr Nath is going to have a workshop in your area, I would strongly suggest to everyone to go. Even if you dont intend to go thru the surgery, the information and the people you meet there is invaluable. My email is Lady527@aol.com. Thank you again to anyone who took the time to read this!!!!

Margie

WELCOME Margie!

There is/are a couple of Topic Threads with alot of Discussion and Parent's Information on Triangle Tilt Surgery.
On the "Forums Lists" Page there is a "Search Box", just type in Triangle Tilt, and All Threads on this Topic will come up.

Someone help to Bump this up for Margie?...

HUGS,
Carolyn J
Adult LOBPI/68+..

I too was at the Albany clinic this past weekend. I was there alone at the parent workshop (I left my husband in the hotel with the baby). I commented on the fact that no one, not even the therapists, seem to know much about Erb's Palsy. Dr. Nath also recommended the Triangle Tilt as well as a Mod Quad surgery for my daughter. I was a bit surprised as well, and was not quite ready for that answer, as I thought she was doing very well. From what I've been reading, children do sometimes need to go back and have it redone. It seems that this is not uncommon at all (something that makes me very leery). I also am somewhat uneasy about anyone recommending multiple surguries for my child after only a few minutes of observation, without reviewing records or CTs or anything. I am going to try and see Dr. Kosin at Schriners in Philly and Dr. Waters in Boston for another opinion.

Just my 2 centsfrom seeing most of the major players.

If Kozin and/or waters recommend surgery, you can feel confident that it is necessary. If I have listened to some of the other bpi players, my 4 yr old would have had 4 surgeries by now. We kept searching for answers and to date, she is surgery free.

An adult bpi perspective,
I am not sure I would even consider a surgery that shows a high rate of needing to be redone. I dont care who the doctor is, if the surgery needed to be redone because of growing, why would it be performed before children stop growing? I guess until the child is old enough to choose surgery or not less is probably more (in most cases) Unless the surgery has a time line due to bone malformation or it a nerve surgery, many of them can wait. I would wait on the ones that dont need to be done asap and let the child choose.

This injury can not be "fixed" we wont get to 100% and thats ok, it is what makes us special and stubborn and highly independent! Let children be children and if they want more when they are a bit older, the options are still there.

Good luck with your decision, it must be very difficult to make.

Hugs,
Amy
20 years old ROBPI from MN

I agree with Amy and would go even further... if a surgery is claimed to fix a problem at its source but then commonly needs to be redone as the child grows, it pretty obviously DOES NOT fix the root cause of the problem.

Kate

"This injury can not be "fixed" we wont get to 100% and thats ok, it is what makes us special and stubborn and highly independent! Let children be children and if they want more when they are a bit older, the options are still there."

As long as you realize that some parents want more for their children, and you realize thats OK too.

Amy, I totally agree with what you said.
I have this injury and I am also a parent, so I know that it is a difficult decision for a parent to make, but I am so glad that you gave the a look from an adult bpi perspective.

I agree/ affirm everything Amy said!..only adding that new procedures are being "invented" all the time for our OBPI's. I really feel it is very important for a child to be able to be part of the decision for surgery/ies as much as possible. It is a gift to be able to wait on a surgery until a child is through growing if at all possible .

Our future OT,Amy,IS a mighty source of right on information!!

Amy, I hope you are able to keep us updated on your own upcoming surgery, Amy. Ya' can't beat 1st hand information! We are lucky to have you so knowledgable,Kiddo!

HUGS ALL around,
Carolyn J
LOBPI/68...and counting down!

Amy
I totally agree with everything you said.
It is a very hard decision for a parent.
Parents feel they want to do everything possible while they can.

I worry about the failure rate because surgery is hard at any age and I wonder about the emotional affects on the children.
Will they be worried that their arm not being perfect and "cured" is a great disappointment to their parents?
Will they feel less if the surgery does not work?
How will it affect their self confidence?

Kath robpi/adult