United Brachial Plexus Network, Inc.

My daughter Anahitha underwent Primary surgery in April 2001 and Mod Quad in August 2002. Now we are in the process of deciding on Capsulodesis. Can you please see this video and kindly let me know if you think we should go for capsuldesis?

http://us.f2.yahoofs.com/users/3f1f62cf ... _ABjn8U6PU

I know that you are searching for answers for your child and I truly feel for you because I know how you feel. But we - as moms and dads - cannot watch a video and tell you what we think about your child. This is something only a brachial plexus specialist should be doing.

Might I suggest you get more than one or two opinions. There are many doctors that accept videos for evaluation. Where do you live? Maybe we know of a bpi specialist nearby? Also - check the medical resources listing - link found on the homepage.

Also - there are different types of procedures out there that doctors to to handle different shoulder issues with different causes. Have you done an MRI or CT scan to see what's happening inside? That may be helpful for you to gain insight. BUT I will warn you that once you have the scans, send the scans themselves (purchase the extra copies) and send them to the bpi specialists because in my experience, our local hospital had no clue as to what they were looking at! (they thought Maia was malpositioned on the table because the two sides were so different!!)

Good luck and God bless,
francine


ps - Maia just had capsulodesis done with a new technique at TCH and her splint is off this week and her shoulder has never looked better. BUT quite honestly - that means nothing. Your child might have totally different issues -you still have to come to your own conclusions about what's correct for your child.

Dear Francine,

Thank you so much for your kind reply. I think I should have given more information about our situation than what I gave. Six months ago (six months after mod quad) we sent a video tape of Anahitha to TCH and we got a reply after 4 months saying her shoulder is dislocated and she needs to Capsulodesis. During these 4 months Anahitha's shoulder actually kept improving tremendously. We consulted a local (California) Pediatric Orthopedic Surgeon, he did physical exam and took X-rays. He is considerably knowledgeable with OBPI. His verdict was that her shoulder is NOT dislocated and she does not need any surgery. And that her shoulder joint looks congruent and glenoid formation is normal, albeit not as strong as the left shoulder (unaffected). He felt that a surgery now will actually do more harm than good. [We, as parents, were also feeling the same way, looking at the tremendous progress Anahitha is making every passing day. She does not have any pain in the shoulder and I can even lift her off of her feet by holding her two hands. When we went for Primary and Mod Quad, it was clear to us that she needed those surgeries.]

But when I sent this report to TCH, the reply I got was less than polite...."If you want that doctor to take care of your child, we can transfer her records over." Then we went back to the local doctor again. He said to clear our minds, CT scan will be the best. We just got the CT scan done (of both shoulders for comparison) and our appointment with the local doctor is next Thursday.

What I actually wanted to know from other parents is this: When you decided to go for Capsulodesis, what kind of shoulder activity was there in your child? How would you compare your child's shoulder activity with what you see in Anahitha (video posted). I am not looking for medical opinion from you...I am just looking for your general opinion on how Anahitha compares with your own child.

Hope this helps you understand our situation better. Thank you very much and thanks to all the parents that participate in this group.

Best Regards,
-Srinivas

Hello, hope all is well today! My daughter has not had caps but she is dislocated and her shoulder is not improving however she is 7.5 yrs old and had no surgery to date! Anyway just wanted to say to you that you have to go with your gut! Get another opionion this should help you make a decision......we had 3 opionions on my daughter's shoulder and all three were differen't! We decideded origionaly not to have any of the three surgeries offered but recently changed our minds because our Daughter's shoulder/ arm , is becoming worse......the surgery we chose is the one that makes the most sense to us .

Good luck and if you would like I can email you a picture which will show you how my daughter carries her arm ect....


Lenni

Re: ROLL CALL ( LURKERS TOO!!!!!!! ) Mary1 Posted: Jul 24, 2003 7:25 PM Reply

Paul

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Re: ROLL CALL ( LURKERS TOO!!!!!!! ) Paul Posted: Jul 21, 2003 6:01 PM
Chad its nice to hear from you. A word of wraning you have to be realy carefull about these gatherings and camps. I went to a day event in long Island not to see Dr. Nath But just to meet other pepole that I have been talking with on this board and I was denyed entry to a public building and what was mostlly a public event. I just now returned from the 2nd meeting with my attorneys as to whom and how to sue. I won't go to another one to mush bullshit. But investagte it, talke to every one make sure its real so that your not let down. No ever called to applagize to me after I went home. But thiars is coming. Paul

Srinivas - thanks for posting again...

we knew that Maia had pain and a continuing decrease in function - that's why we got the CT scans done and it showed posterior dislocations both times

I'm sorry- I'm not going to watch the video because I don't want you to think that I can in any way make an assessment of movement.

For Maia, her dislocation looked like severe internal rotation, no winging, elbow flaring... it's this specific posture that when pointed out to me I can see it but otherwise I can't.

I'd highly recommend that you send copies of the CT scan to TCH and also to at least one other bpi specialist in addition to the doctor you have in CA, so that you have 3 opinions. And then you can figure out what you want to or don't want to do.

Sometimes doctors are accepting of other opinions and sometimes they're not - guess it all depends on what kind of a day they've had. Don't take it personally. I've got some pretty awful comments made to me by some other doctors and well eventually you forgive the comments because their services far outweigh the comments.

Don't stop your search for information and don't make any decisions until you are truly clear about what the situation inside is. The clarity will just hit you in the face and you'll have a sense of calm.

good luck,
francine

I tried to open the link but could not see the video. I got a message saying it was unavailable. I'm going to give you advice as if my child were in the same situation. If Matthew was not dislocated I would not agree to the capsulodesis. Based on the information you supplied I would agree that this surgery would do more harm than good. I wish I could have seen the video. If I can get it open at a future point I'll let you know.
Cindy

I realized that the link that I posted for the video is not working. Can someone please try the following and let me know if it working now?

Go to:

http://briefcase.yahoo.com/srinivas_kot ... global.net

Click on "My Documents" Link
and then click on "Anahaitha" link (I misspelled the name)

Thanks a million to every parent that had responded. It means a lot for us.

Best Regards,
-Srinivas

The video works. I emailed you.
Cindy

Hi! My son is 3 and had MQ and nerve grafting at TCH. They said at the beginning of the year that he needed caps, but I didn't agree, I felt his shoulder was good. After a lot of searching, I found a closer hospital with a Brachial Plexus Center. They did a comparison MRI on his shoulder's and his affected one looked good, strong, though smaller of course. Personally, I didn't want the caps, in my son's case, I decided it wasn't worth the risks, his shoulder has always, from the beginning, been good. It was discussed in conjuction to the surgery he's having next, but we decided a different option was better. (his problem right now is lack of bicep return) I watched the video, she's adorable by the way !! I'll be honest, it's hard to compare these kiddo's, each one's injury and recovery are different. My best advice to you is see what the doctor says and trust your heart. Sorry I can't be of more help.

Anne