United Brachial Plexus Network, Inc.

I HAVE BEEN READING EVERYONE'S POST. MY SON IS GOING TO HAVE THE TT WITH NATH IN FEB. AFTER READING YOUR POSTS I AM STARTING TO GET WORRIED... I HAVE HEARD SO MANY DIFFERENT STORIES ABOUT GOOD AND BAD (MORE BAD THAN GOOD),I'M SO AFRAID THAT HE'S GOING TO HAVE REGRESSION NO.WI WAS NOT AWARE OF ALL THESE ISSUSES TILL NOW.MIKEY IS ONLY 6 AND I DO KNOW THAT AGE PLAYS A ROLE AS WELL.JUST WONDERING IF ANYONE COULD GIVE ME SOME ADVICE....
**** DOES EVERYONE WHO HAS THE TT LOOSE SOME TYPE OF FUNCTION??????ALSO WHAT IS THIS ACR U GUYS ARE TALKING ABOUT??????? THANKS KATHY

Hi Kathy,

It's so hard to make a decision when it will affect your child for the rest of there life...I know how you feel.....Why do some children regress and others don't? I don't know....we have to realize every child is different and every circumstance and severity of the injury is different. When Mark had his surgery I was so scared and thought am I making the right choice?.....It's been almost seven months and Mark (age 12) looks incredible he has gained so much and is still moving forward.... Although I can't speak for everyone.....our experience has given Mark back what he lost 12 years ago.
I'm Praying for you and your family.....

Kathy

How many Bad stories have you heard? I have heard four stories about some kids regressing...

Ditto. My daughter looks amazing. I have no doubt in my mind at all that this was what she needed. We feel the same way. She has been given back what she lost when she was born. We are constantly on top of her doing therapy, she goes twice a week and everyday we do therapy her at home. Strength training. Read my post on my question. There are more details about her results. Good luck to you and I will certainly pray you will find peace in this decision.

How many months post TT is Mark? Just curious.

THANKS TINA,
ALL THE STORIES I HAVE READ HAVE BEEN ABOUT REGRESSING,SOME PEOPLE SAY THAT I NEED A 2ND OPINION. DR.NATH HAS BEEN TREATING MY SON SINCE HE WAS 6MONTHS OLD HE IS NOW 6YRS OLD. I HAVE EMAILED DR.NATH ASKINNG SOME QUESTIONS ABOUT REGRESSING AND OTHER THINGS AS WELL.I WILL LET YOU GUYS KNOW WHAT HE THINKS.THANKS
KATHY

Hi Jenn

Mark is just about 7months post-op...he is working on strengthing the arm. I would like to also add that mark ( being almost thirteen) feels comfortable with out a shirt on. as he grew older he always struggled with the deformity of the scapula and the shortness of the arm...........

.....I think the hardest part for me as a mom right now is keeping on top of Mark. He doesn't miss therapy and under no circumstances does he miss a day with out his splint...You know kids....(oh do I have to..It's a pain!)...I stand my ground and explain that for not this is what we need to do.... He doesn't complain anymore and even when he goes to sleepovers the splint comes along and his friends are really suuportive..........Stretching and home therapy plays a big part..

I COMPLETING AGREE...Yes it is so hard when they say do I have to. It just breaks your heart...but you have to be strong. She is getting better. We too do not miss therapy and we are always working on her at home. It is a key to their success of not regressing. Elena has always regressed about 4-5 months post surgery. She isn;t now which makes the decision to go forward and do this surgery the right one. We are so happy.

Kathy:
in all secondary surgeries (and that is what TT is) there is a gain (one hopes) and a loss. That is fact. In the modquad, in ACR, in osteotomy...in any secondary surgery. The key in deciding whether or not to do surgery is to balance the potential gains against the potential losses. You have look at what your child likes to do and whether or not he might lose that ability due to a particular surgery. And what will he possibly gain. There are no concrete answers in bpi. Each child's injury is different and each child's response to a surgery is different. No one ever said this is an easy decision to make.

As for getting second, third (even fourth) opinions, I highly recommend it. There is more than one way to look at this injury and, considering how difficult the decision is, you should give yourself the most information. Getting a second opinion doesn't mean you will change your mind, it means you have more information. The other doctors might show you that your decision is correct or you might want to wait or you might want to go in a different direction. But multiple points of view give you information to mull over.

My daughter has no internal rotation. At all. This is a side effect of how the modquad was performed on her. In exchange we got more overhead movement. However, the lack of internal rotation was stopping her from some other activities, so we looked for a way to correct it. One of the options was a derotational osteotomy. We went to 3 doctors and my husband was still not convinced. I was willing to give it a go and hope for the best. We went to a fourth doctor, who was very far away. He told us the logic of the osteotomy for her issue wasn't' there. We went home and I called the doc who was supposed to do the surgery and we met with him again. We talked about her arm, her function (and lack thereof), the surgery and what the 4th doctor said. And we all decided that the osteotomy was WRONG! And we have not done any surgery to correct it. The only thing available we would not want to do for many years (she is only 7). I am so happy that we looked further, that my husband's reticence caused me to call one more doctor.

We have a great medical resource page. Use it. Call and email doctors. The worst thing that could happen is you'll learn more about the injury. The best is that it will help you make your decision.

good luck,
claudia