Anyone NOT have primary but later had mod quad and/or triangle tilt?

[LoriV]

Ryan saw Dr. Nath on Saturday and he said he thinks he may not need primary but will probably need mod quad and triangle tilt somewhere down the line.

Anyway else have that situation? If so, what age did they do the mod quad and triangle tilt? Also, what conditions prompted them to go ahead and do the surgeries?

Thanks in advance for the info!

[Connie&Andrew]

When we had our son evaluated at 8 months, we were told he did not need primary surgery. He did have the mod quad surgery done at 28 months. I know that now they do the mod quad surgery at much younger ages.

The reasons we decided to go ahead with the surgery at that age were
* He seemed to have reached a plateau with regards to his recovery. We hadn't noticed any improvement in quite a few months.
* The specialists at TCH recommended the mod quad surgery to improve his range and to release some tight muscles.
* He was not able to lift his arm above his head and was not able to touch his ear or the back of his head.

We were pleased with the results of the surgery. His is now 5. It's almost 3 years since his surgery and he has very good recovery. We still work with a therapist on some issues, but most people don't notice that there is anything wrong. So far it has not been recommended that he have the triangle tilt surgery. We are keeping our fingers crossed.

Good luck with the recovery of your little one. Enjoy him while he is little. They grow so fast.

Connie

[admin]

Yes- my daughter Addy, had the Mod Quad at 18 months and we are scheduled for the triangle tilt on March 10th (her birthday, how ironic!). She regained most movement by 4 months of age. She has very good range of motion now, but the shoulder is deformed (I hate using that word, but really couldnt think of anything else) Dr. Nath said that Addy is one of the few that has very good range and a neutral position (no Buegler's elbow etc..) Our only problem now is the sloping of the shoulder which we now understand is because of the scapula being so high above the clavicle. I am hoping this will be it... good range with a normal look to it. Please email if you have any questions, I dont mind at all!

Thanks,
Laura

[admin]

The way I understand it is that (in TX) they only do nerve grafting if there is less than 50% going through the nerve, if there is more than 50% going through the nerve, they let it heal on its own - they don't risk losing what the child already has. They can tell by looking if the biceps are firing or not -you can feel it if you touch the biceps, too. Those kids that get full return at two weeks can get full recovery. The other children who take longer and longer to get return, usually do end up forming contractures and need other surgeries. So it's common to hear that someone didn't need primary but might need more. There was some Swedish study (I believe it was Swedish) that showed that the kids who didn't need primary ended up needing something else at least by age 5. But concerning the age....back when the study was done, these surgeries were being done at age 5 whereas now, they are being done earlier because there are good reasons to have it done earlier. Anyway, with all that said, I'm happy that your little one didn't primary. Any time you can avoid a surgery is good! Congratulations!

[tylergsmom]

Tyler was evaluated by TCH at 7 months of age for Primary surgery and we were told he didn't need it. He was evaluated again by TCH at age 5 and had the Mod Quad surgery last June. I guess it just depends on how severe the injury is as to whether or not they will need primary.

[cherie_hohertz]

Sarah was evaluated at 4 months for primary and she was not a candidate. However, we did have mod-quad at 12 months, and will have the triangle tilt sometime later this year. Her functional gains were tremendous after the MQ, and we're praying for even more gains after the TT.

We decided to go ahead with the MQ because she had muscles that were so tight, even an enormous amount of PT and OT weren't helping. She also develped a discloated radial head, which led to an elbow contracture. We didn't think there was any other option besides surgery. And we were very happy with our decision.

HTH!
Cherie

[katep]

We are not a patient of Dr. Nath, but I thought you might be interested in a different perspective.

Joshua avoided primary surgery because he had decent biceps recovery prior to 6 months of age. However, he has developed a posterior dislocation and his glenoid is malforming. He currently still has very little abduction and external rotation, which could be due to lack of nerve recovery or could be due to bad joint mechanics.

He will be having the arthroscopic anterior capsule release and partial subscapularis release with Dr. Kozin at the end of this month. This will hopefully correct his dislocation and trigger his shoulder joint into forming correctly. We are hoping this will reveal that he actually has recovery in his deltoids and external rotator muscles. If that's not the case, we'll give them another year or so, and if by then he still doesn't have abduction and external rotation, he will have the same muscle transfers as in the Mod Quad.

Feel free to write me if you want to know more.

Kate

[admin]

My child did not need primary (decided at 4 months by a BPI specialist)and was not told about any possibility of secondary surgery at that time - we didn't even know there was such a thing! The specialist did not give us any indications of what to watch out for at all, so we were kind of on our own.

Around 15 - 18 months, I started to notice significant winging as my first indicator that there was more going on than we (or the specialist) thought. We used leukotape to try to stabilize the scapula to lessen the winging. Around that time I got my first "Outreach" and it talked about secondary surgery. A lot of the problems that kids had prior to mod quad in that article really clicked with what was going on with my child (winging, dropping the shoulder, limited range) and prompted my husband and I to get several opinions from other specialists - all recommending surgery but varying widely on the timing of the surgery. After a few months of the leukotape, my child stopped tolerating it. Her skin started to get really red and she started to put up a fight whenever she saw that it was going on (twice a week). We then agonized over what to do next and decided that the surgical route would be best. She was 2 and 3 months when she ultimately had the surgery. That has been the only one recommended so far (actually she was also recommended the bicep tendon lengthening surgery at the time of her surgery, but we declined that one). I really have no idea about the triangle tilt, what the purpose is, etc. All I know is that so far the mod quad is the one surgery she has, and after two and a half years, we still don't see any in the near future. She's been able to maintain nearly full passive range and the gap between her passive and active range continues to diminish, while her active strength building continues to improve. Her bicep contracture has even improved slightly without surgical intervention (it was small to begin with).

[Evansmom]

Hi-

Our son Evan had Mod Quad in Nov. at 6 months of age at TCH with Dr. Nath. I have, in the meantime, sent Dr. Nath videos of Evan and he seems to think that is going to need the Triangle Tilt in the future. I think that he will do this surgery when he is 1.5 to 2 years old but am not completely sure. We are meeting with him again in person so he can tell us for sure what Evan is going to need.
Evan currently uses the TES machine nightly, since Jan., and we have seen great improvements already!

Peggy