Triangle Tilt

[tkirkland]

Hello All,

My daughter was recommended sometime ago for the Triangle Tilt Surgery. I have been holding off because where I see it may do good for her she is pretty functional and I am scared that it could do more harm then good. I have recently seen Dr. Nath in Philly and this remains his recommendation (as well as a possible Mod Quad after the TT). I am so afraid of making the wrong decision. I am sure that is a fear many of you can relate to. Anyhow, my question is there anyone that has had the surgery that regrets having had it? My daughter has had no surgeries thus far. She is 9 years old and this is really big for us. I have heard those that praise this surgery as doing good for them but is there anyone that is dealing with negative repercussions of having had this surgery? What about it's affect on development during puberty?

Thanks,
Tiffany

[hbpsupport]

Hi Tiffany,

My daughter recently had the Mod Quad (Oct 6th) actually I can say so far so good she had no overhead ROM and has been recommended to have the TT with the next 4-6 months. One thing that I have found out is that you will hear Neg & Positive about different procedures you just have to pray about it and be led. Dr. Nath has been seeing my daughter since 4 weeks old and I trust his expertise, his work speaks for itself. Have you seeked a 2nd opinion? One thing I've said is that I don't want my daughter to get older and be like mom why didn't you. WHen your dealing wirth the nerves, everybodies outcome is diffrent. Your child now being 9 yrs old, I would personally go for it, but don't wait til she get's too old. If you want more info about the Mod Quad, I can give as much as I know. i have pics if you need to see what goes on, also I have a friend whose daughter recently had the TT (Oct 15th), if you want to correspond with her let me know.


SHajwanda
Maliyah's mommy-
email: hbpsupport@gmail.com

[tkirkland]

Hi Shajwanda,

Thank you so much for you response. I am so happy to hear that your little girl is doing well. Surgery was never an option for my daughter until the last couple of years. She is considered to be highly functional by many different professionals. I do value Dr. Nath's recommendations as I found out about him through a dear friend who he had performed surgery for their little girl. They are very happy with him. However, everything is different when the final decision is yours. If she were worse this would almost be a no brainer. I think about what my daughter will think when she gets older. What she would want if she truly could weigh all the options. Of course I talk to her about it because she is 9 but this is just such a major decision for me. I have only heard good come of the Triangle Tilt Surgery. I haven't heard any negative really. Nothing negative enough to make me have such doubts. I continue to pray for I know it is only by the grace of God that we have gotten this far. Your friend who's child had the Triangle Tilt surgery - was it the first surgery? This is my problem too - this would be a first surgery? I am so sorry to ramble on... I am just so nervous... My daughter has amazed me from the day she was born. She is truly my hero!

[hope16_05]

I know there is at least one little guy whos mom visited these boards (I am not sure if she still does or not, I havent had much time to be on) who is by far much worse than he was prior to TT. So wait and see if you get some emails.

But anyway the real reason for my post is to warn you that you need to know the anatomy and which muscles can/would be moved both with TT and MOD. Then make sense of everything...I had a pectoralis transfer two and a half years ago where they split my pecs and used half the muscle to bring my scapula forward to control my scapular motion. After weighing all the possible losses and gains, I decided to have the surgery. Since, I have noticed a significant difference in appearance of my chest...My right side is a good size smaller and it used to be the same or bigger.

This is definitely something you need to have many deep conversations with your daughter about. She is getting pretty close to a fragile age where she feels old enough to make these decision all by herself but also that is she feels different or looks different she may develop self esttem issues which are really hard to build back up!


If your 9 year old is saying no you might weight that very heavily in your decision making process. My parents never forced me to have treatment at any age and for that I am very greatful. I made a decision at 5 years old to have surgery. I made the decision again at 10, 12, 18, and 20 for my bpi arm. I was allowed to start therapy at 17. The independence I have had has made a huge difference!

Another though I am having is ask the Dr if he has seen negative results...If he says hes had all great outcomes...RUN! That either means there is by far not enough research, or the doc is straight up lying to you. Even the best docs are still going to have patients that dont get the expected results no matter how perfect the surgery went.

Lots to think about in this especially if your daughter is already high functioning and you are concerned about a loss of function!

Good luck with whatever decision you make, I hope everything works out for the best!
Amy 22 years old ROBPI from MN

[tkirkland]

Hi Amy,

You touched on so many of my concerns. The pec muscles are a huge concern for me because I have heard that they can be affected. I have had some in depth conversations with my daughter and she does want to have the surgery. However, I feel that she has this sense that her arm will be fixed and will function like the other one despite me explaining to her otherwise. I have been completely honest with her telling her that it may not help at all or it may even make it worse. There just seems to be so much concern over her shoulder. I am scheduling a new 3D CT scan and have been working very closely with her therapist and doing tons of reading and learning on my own so that I am as informed as possible. The doctor feel that it may be partially dislocated and for this reason (among others) should be addressed... They say she could possibly loose the ability to put her hand behind her back (she currently kind of slides it back there). They say that this movement is not needed as much as external rotation which she could gain more of. Thank you so much for your post. It means so much to me and good luck to you.

Tiffany

[dtrusk]

Hi Tiffany.....My son, Tyler (ROBPI) is one of the "older" kids who has had TT surgery. I totally understand your anxiety about making the right decision. We went through the same thing. Tyler was like your daughter, at age 9, he didn't seem so bad and was pretty much able to do what he wanted to and had had only one minor surgery. Knowing what I know now, you want to have this surgery before puberty. When Tyler was between 12 & 13, puberty started and he went through a huge growth spurt which affected his bone growth. Sometime around 13, his shoulder became dislocated...it just looked different--not normal even for BPI. Tyler had TT surgery this past January on his 14th Bday. He is now almost 11 months post surgery and his shoulder placement looks great.It has actually pulled the shoulder back so he does not have the internal rotation like he had before. You have to remember that this is not a cure-all surgery and does not fix the underlying nerve damage. Your daughter needs to know this so she does not expect her arm to be 100% like the other one. There is a lot of therapy that comes afterward, but Tyler has gained a lot of muscle strenght in his arm that he didn't have before because he had almost stopped using it. This surgery addresses mainly the shoulder socket issues and internal rotation. Some kids come out of it gaining overhead movement and some don't. I'll be honest...the scars are pretty bad, but my thought is, laser surgery can take care of that later...it's a small issue for what is gained. I understand that the girls have a little different development issues to face than boys and I don't know pros & cons on how TT surgery affects development. I would think it would help by allowing both sides to develop more normally and allowing the muscles to work a little more to help develop. Dr. Nath has a book available that explains the whole BPI issue in detail and what TT surgery and MOD quad surgery does. It's worth buying to help understand the process. No regrets here and we would do it all again if we had to. Feel free to contact me if you have any questions!

Donna Trusk

[ironmansmom]

Donna,

my son had TT in November 2008 and I remember you posting that yours was getting ready to. I'm glad that your son had great results, ours did too. You mentioned that the scars are bad. Did your son scar bad,too? My son will be 12 next week, his scars are terribe. We have been doing scar massage and silicone patches, but they still look awful. I wonder if that is because of puberty? He has had 7 surgeries all together and these scars look the worst. I wonder if it is because he is older now? Is this the case with your son? I couldn't remember if he had any other surgeries before TT.

[SarahxG]

Tiffany,
Hi I'm Sarah and I'm 13 years old.
I cannot help with the questions you have with the Triangle Tilt. I have never had it done because a couple different doctors told me it was not a good idea. 1- Because not many people have had it done, and so the affects of the surgery aren't really know. 2- Because it could mess up the nerves and cause pain. The second reason is probably more for me because I am very lucky to not have pain, and the doctors do not want to do anything that could mess that up. Now, your question about puberty. I think it definitely affects the BPI. This year I have noticed that my arm seems to have gotten "worse." Now when I say this, I mean that as far as I know the doctors can't do anything for it. For me it just feels a lot tighter and stiff. (best description words I use) I've went to a few different doctors and they have said there's nothing else to be done. I've asked some of the other people on this site if puberty and just getting older has an affect, I believe everybody that answered me said yes.
So, as for surgery, just be very careful. Because if your daughter has good function to start with, you definitely do not want to ruin that.
Also! Do NOT feel bad for asking too many questions! There is no such thing! Make sure you get all your questions answered and more than one opinion from doctors.
Good luck with your daughter!
Sarah/ROBPI/13

[tkirkland]

Thank you so much for all of your responses. Sarah, you are quite an impressive young lady. You mentioned in your response that at 13 you are beginning to feel a little more tight. Would you consider surgery at this point now or do you think that this is something that can be made better with therapy? I am also concerned about the long term affects of the surgery... My daughter will sometimes complain of minor pain at the elbow that I think may be linked to the fact that she sleeps with a splint. Donna, I am so happy to hear that your son is doing so well. I pray that this will be my testimony should we do this. I am very concerned about the scars though. Does anything make these better?

[SarahxG]

Tiffany,
It's so hard to say whether I would recommend surgery for your daughter or not, since everybody's BPI is different. If she is doing well and has good range of motion then I would really be careful at considering surgery. If your daughter doesn't have much pain to start with, you definitely do not want her to end up having pain after surgery. It's very likely that can happen. Although, in my case I was very lucky because I have no pain. Anyway, I recommend therapy 100 percent!
I've been to sooooo many different therapists. Each has their own approach on what to do for BPI. You have to really put the decision on your daughter as to what she thinks will make her arm better. Some therapists have wanted to do things that I know do not make my arm better. It doesn't help me so what's the point in doing it right?
I know one thing that reallyyyyyyy helped me was getting my fasha stretched out. Only one therapist made this approach and I think it definitely helped with the tightness. You should look into it.
Lastly about the pain in her elbow.
I also wear a splint at night, and if I wear it long enough I too get pain in my elbow. It eventually goes away though after about a day of my arm being sore. I just try to look at it like...if you have some pain the splint is obviously working. HaHa
Sarah/13/ROBPI