Has anyone been told they DO NOT need Triangle Tilt?

[admin]

Just wanted to add that while my daughter did have mod quad, she does also continue to gain strength and range 4 years later. We continue an aggressive therapy schedule and now as she gets older is getting into sports.

I do think the therapy and activity cannot be underestimated in the long-term outcomes of our children. And while I agree with much of the points being made on this thread, one of the things that makes it so difficult to understand the impacts of these surgeries, and the no surgery alternative, is that not only are these injuries and nerve damages unique, but the therapy treatments are also unique...and with so many variables it is so hard to find consistency.

I know for us, we slighly altered the splint on my child after mod quad, based on what we saw happening after the surgery. We switch up what we are working on in therapy based on the different areas she tightens up in the previous week. Her therapy is fluid and dynamic and unique. Its hard to say definitively what has given her the range she has today, but the combination of all she has received has gotten her to where she is today.

So in addition to thinking through the technical aspects of the specific surgeries, and all the other stuff brought up previously by many people...I just wanted to have a reminder of another "variable" in the surgery/no surgery that should be considered when thinking about outcomes..the type, quality, consistency, and frequency of therapy does make a huge impact - whether or not surgery does occur.

[katep]

Guest,

I'm thrilled to see Dr. Nath is sharing information on the surgery. I couldn't help but Dr. Birch said in his letter "I do urge you to publish this work so soon as is possible... I do look forward to your earliest publication and anticipate very wide dissemination amongst thoughtful and interested colleagues."

Let the discussion (among BPI specialists) begin!!

Kate

[Matt's Dad]

"on the off topic: eat my Yankees dust.. okay, I feel better now!"

We see will come Octobah. Yanks got a weak spot with pitching.

"One of the things I have noticed is that it works for the mild cases. The more difficult cases don't really seem to respond to it."

I agree. But couldn't you make the case that all surgeries - primary and secondary - don't work as well in the cases that are more severe?

[admin]

Matt's Dad, my child has what is considered a severe injury from birth.She had the triangle tilt and has had fantastic results.She did have the mod quad surgery before the triangle tilt.

[admin]

Even if you free the restrictions, if the muscle doesn't have the strength, it won't move. For those children whose muscles don't have the strength to move into their newly found ranges, rehab is extremely important. Not only do the muscles have to be strengthened but the brain has to be retrained to think differently, habits have to be broken and this is not an easy task.

This is one of the reasons why those with severe injuries don't "seem" to do as well. There needs to be a high level of parent and child commitment, and you need excellent therapists and the correct rehab. The combination is not an easy one to access especially if you want your child to have a "life" outside of bpi.

[katep]

Recovery is fundamentally limited by motor neuron losses, cross-innervation, axonal recruitment and a whole host of issues that result in nerves not fully or properly regenerating. Therapy is important, and brain retraining ("plasticity") is important, but sometimes the conduits just cannot carry enough juice from the spinal cord to the right places. Once you get into structural damage to nerves, and even with primary surgery, the recovery can be very spotty.

I'm not saying this to be negative, I just wanted to point out that even perfect parental and child commitment, the best therapists, sole dedication to recovery, etc does not guarantee a full, or even necessarily good, recovery. There is a lot of potential for guilt with this injury, and "not doing enough" can be a huge source of additional guilt for parents.

Kate

[admin]

Kate, you are absolutely correct. I should have mentioned the nerve growth (or non-growth) as well. The guilt factor (I certainly experience that over and over) is a huge factor. And also, sometimes even the rehab docs and specialists forget to tell us about the nerve factor. I know that the one nerve that was working enough to not need a graft is now the worst functioning nerve for my child. I think that it got caught up in scar tissue from the other ones after the fact. But I'm not going to risk going in there again to clean it up. At some point you have to just stop and live life and not feel guilty about it.

[admin]

Dr. Nath said we did not need the triangle tilt - shoulder looks good.

[bailsmom10]

Maintaining coninuity of care was very important us. Nath has cared for Bailey since she was 6months old with awesome results from day one. We are worlds away from Texas but that is where we will always return to. She just had TT surgery Wed...recovering fine and looking forward to the end of 6 weeks.

[mylittlemj]

What is this? I am wondering what all these other surgies are? My son has only had 1 surgery so far and a botox injection that was a waste. What is all this other stuff everyone keeps talking about? TT, mod Quad? My son had the nerve graph done at 6 months, and had the botox at 1 1/2.