Hemivertibrae surgery - congenital scoliosis

[EL-34]

Hi everyone,

My 5 year old son has a hemivertibrae causing a 30 degree curve. He is being monitored. The surgeon recommended removal and fusion.

What is the success rate for this surgery in terms of paralysis, death, long term problems such as paralysis and reduced mobility.

Are magec rods an option considering the growth factor?

Update: 30 degree angle (Feb 1, 2020)

Thank you and regards

[titaniumed]

Here is a study that was done...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3175869/

Scoliosis Research Society
https://www.srs.org/professionals/on...ital-scoliosis

7 degrees is not too bad....I doubt that Magec rods would be considered. This being a question only a Ped spine surgeon can answer.

What level is the hemi at? and where is the surgery being done?

Things are going to be ok....

Ed

[Pooka1]

Hi EL-34.

I think only a surgeon can answer your questions. If necessary, get more than one opinion.

Several years ago we had a parent discussing her son's congenital scoliosis. That is the only case I can recall on this forum. I can't remember her screen name but if I do I will PM it to you. Her son is an adult at this point.

What I think I recall is he was fused but had a very short fusion compared to all the AIS cases. I think it was only 5 levels which is rarely if ever the case with AIS per this forum and all the reading I have done. If you child needs fusion, hopefully it will be very short like that and there will be no issues going forward from the fusion itself.

Good luck. I am sure it will be fine once you get all your questions answered.

[LindaRacine]

Hi everyone,

My 5 year old son has a hemivertibrae causing a 7 degree curve. He is being monitored. The surgeon recommended removal and fusion.

What is the success rate for this surgery in terms of paralysis, death, long term problems such as paralysis and reduced mobility.

Are magec rods an option considering the growth factor?


Thank you and regards

Hi El-34...

I'm guessing that your son's doctor is talking about removal and fusion of the hemi level. That's quite different than fusion of the entire curve, and would probably not require growing rods. Whether or not that's the case, I would strongly recommend a second opinion. Where are you located?

--Linda

[EL-34]

I have a clarification..the curve is actually 30 degrees. The same as it was 6 months ago.

The hemivertibrae removal followed by a fusion is very risky compared to just a fusion.

[Pooka1]

I have a clarification..the curve is actually 30 degrees. The same as it was 6 months ago.

The hemivertibrae removal followed by a fusion is very risky compared to just a fusion.

That's why you want a second opinion. Maybe your son doesn't need surgery. If both surgeons agree your son should have the surgery at some point, go with someone who had done thousands.

[Pooka1]

Just as with my twin daughters, normal is off the table. Now it is a game of cutting losses.

The bottom line for you is will your son have a better life with or without surgery. You have to weigh which results in less loss.

Only surgeons who have seen cases where kids did not have surgery can tell you what your son can expect if this is not corrected. Maybe there are cases like your son who stay stable for life without correction. They can tell you. They can also tell you if most of these cases go south absent correction. There is probably a reason the surgeon recommended surgery. It is likely he thinks it will get worse and be harder to correct and you son's life would not be good.

I had to sign off on major fusion surgeries for both my daughters. Because there is a medical consensus on fusing large progressing thoracic curves, I did not feel like I had a choice which helped me greatly. They almost certainly would not have had a life absent their surgery even if their curve did not kill them. No high school graduation, no prom, no college, no grad school, no trekking into the Oregon mountains to do fish shocking on a Federal internship, no interning at a zoo, etc. That is something that also helped me sign.

What you don't want to do is read web pages written by people who have no relevant training in treating scoliosis and clearly by what they write don't understand any of these issue. There are many factually incorrect statements on that web page you posted. The chiros are either mistaken or lying. There is no third choice. Cherry-picking articles from the literature for the SOLE PURPOSE of scaring parents so they drop thousands of dollars on useless chiro treatments is despicable FULL STOP.

Only an experienced surgeon can tell you the risk of surgery for your son's particular hemi because they have done thousands of such operations. Meanwhile chiro has been likened to a trade school and I have posted the nonsense they teach at those schools. Always remember the chiro you deal with may not have a Bachelors and may have a 1.9 GPA. Do you want that person advising you about a serious medical condition in your child?? Hello?

It may help you to ask if there is a medical consensus on correcting hemis and if so, is there a consensus on when is the best time to do so. If there is medical consensus and if they can say your son's life would be bad without correction, then you will have a clear choice. If there is no consensus then you have to get more opinions and figure it out. But I suspect there will be a medical consensus on this.

Good luck.