United Brachial Plexus Network, Inc.

Ok, so some of you know that my son Peyton (9yo) had the triangle tilt July 2005 and that he has had some regression. Dr. Nath is now suggesting redoing the triangle tilt and releasing some ligaments on the front of the shoulder at the same time and splinting him for 1 year at night time post op. For those of you whose child had triangle tilt, have they regressed, at all? Dr. Nath feels that Peyton's growth, and lack of splint time at night time following surgery (at the time the protocol was to wear night time splint for 3 months)is what has led to his regression. If we redo surgery there is no guaranty that he will not regress again. Dr. Nath also suggested humeral osteotomy but didn't think this was the right way to go. He also reminded me that some humeral osteotomies need to be redone also. So I am just trying to get some thoughts on this, I realize that you are not doctors, but would like to get some opinions. I would like to keep this a healthy discussion without doctor bashing or surgery procedure bashing. Thanks everyone.

Marnie,

I wonder if that's why this SARO splint thing has arose? Brooke had the triangle tilt on Nov 15th and also and ACR (which I didn't know was going to happen). Dr. Nath wants her splinted for a year post op as well...he said he wanted to prevent having to redo the surgery for Brooke. I am so sorry to hear Peyton is regressing. I'm also very scared now that there have been regressions.

I wonder how many other children are regressing after this surgery?

Lauren

Marnie,

I'm so sorry to hear that Dr. Nath has recommended redoing the TT for Peyton. As you know, Michael had his TT in Jan '06 - so it's been almost a year. He hasn't had any regression at all. However, he wore his gunslinger splint until July/August of '06 and has been wearing Theratogs since then. Dr. Nath told us that he had changed the protocol to 1 year of splinting at night to help prevent regression due to growth.

I'm not sure what to say about redoing the surgery.... I guess that I can understand that sometimes things may need to be done over for a variety of reasons - that doesn't make it any easier to hear and/or contemplate, though. If you are asking my opinion on whether to redo the surgery... hmmmm.. I guess that I would have to weigh the pros and cons again (they may be the same/similiar/very different than they were before his TT surgery the 1st time) Does Dr. Nath feel that if you do the surgery again and splint at night for an extended period of time, that would help prevent regression again (since it seems that the lack of splinting coupled with growth is what may have caused the regression)? How about splinting for now on at night - will that stop the regression now (not sure how much he has regressed)? And if so, is that an acceptable alternative for you and Peyton?

Those are just some of my rambling thoughts... I hope that they may have helped in some small way.

Hugs to you all.

Sally

Hi, Sorry to hear about your sons regression since surgery. Have you considered more opinions from other BPI specialists? I am sure you can show other doctors the full operative report from Peyton's TT surgery so they know details and then they can give you their opinion on what may or may not need to be done to help correct any problems. You already heard Dr Nath's opinion and you don't sound confident about going with that recommendation yet, so in the meantime while you are making your final decisions, I suggest that you meet with a few more specialists to hear what their opinion is to help Peyton with his problems. Surgery is hard on us parents and on the child during recovery, therapy and everything else so I would look deeply into what can be done to help him before agreeing to one certain opinion and surgery/re-surgery. I would ask a number of doctors what they think, compare to what Nath says and go from there. You never know, maybe they will agree with Dr Nath and you can feel confident in a final decision. Again, I am sorry to hear about the regression since his surgery, but I am sure something can be done to help Peyton out for the future. Good luck!
~Krista~

Hi Sally,we had an ultraflex splint made for Peyton but we coudn't seem to get it fitted correctly by our local orthotist. Peyton complained every night that he had to wear it, he said that it hurt, and it's a very big, heavy splint.

Krista, I have sent our 3d ct scans that we just had done in December to Dr. Kozin, he is recommending the humeral osteotomy. I am going to get more copies of the ct scans and send them to other bpi specialists as well.

It's all just so frustrating, it's so hard to know what to do/not do. Do I do nothing, do I go ahead with surgery. I just want to make the right decisions for Peyton. I am trying to make the right decisions for him. How do I know what that decision is? I am in the gathering information stage. I just hate this constant nag in the back of my mind, what do I do, am I doing the right thing. It's just always there.

I understand your thoughts and feelings exactly. My daughter Avan who is 8 years of age had the triangle tilt March 2005 and also has had some regression.
Dr. Nath saw my daughter in October 2006 and suggested redoing the triangle tilt due to the same exact reason that was given to you about the splinting time for one year post op. I also followed the protocol for the 3 months night time splint. Dr Nath has also sugessted possible osteotomy. I have no thought at all or guarantees that redoing this surgery will prevent regressing. However I will be e-mailing Dr. Nath and asked that he arrange for me to talk to other parents who children have gone through the surgery a second time after a year of post surgery. My daughter's most recent CT Scan has been forward to Dr. Nath for evaluation. I am not at ease at all about redoing this surgery and hope that more opinions and suggestions would help with my thoughts and decide what to do at this point.

Dr. Nath has told me about 1 child who has had the surgery redone, and that child is just 2 months out of the splint, I am not rushing into anything right now. He told me that there were only 3 kids who have regressed so far.

Hi Marnie,

As you know, Alyssa is in the same boat as Peyton. From the posts I read here, it looks like Alyssa, Avan, and Peyton are 3 who have regressed. I am just curious if there are any more. It is a really hard decision to make whether or not to redo the TT - and it gets even harder when your child is older and doesn't want anymore surgeries or splints!

Jody - mom to Alyssa (9) LOBPI

I guess that makes 4 then because I know of one other, the one who did redo the surgery. I just wonder why it is working for some and not others, I guess it's the nature of the injury, they are all so different.

I dont have any experience withthis surgery or the dr. but since for the most part your kids are getting older, ask them what they want to do. If they think trying the TT again is a good option for them then go for it. But I would not choose to do the surgery if they were not comfortable with that option. A question to ask (since like I said, I have no experience withthis dr or procedure) what is the time line? How old can this be done. Since growth seems to be causing regressions can it be done when they are done growing?

Good luck in what ever you decide and I am so sorry to hear that your children have regressed.
Amy 19 Years old ROBPI from MN