Hemivertebra Excision

[gitaraja]

My daughter who is 13 years old has congenital scoliosis. Now her scoliosis due to hemi vertebrae is progressing and she is having a 45 degree curve on her lumber spine area and the doctor in boston children's is planning to do surgery this summer. I did get a second opinion and the other doctor is saying that removing the hemiverbrae is better and it will give a 100% correction instead of keeping the hemiverbrae. At the same time there is risk of paralysis and i am very scared. Please share your experiences. I am also palnning to go the shriners Philly to doctor beth for 3rd opnion. Is doctor beth reliable?
Also anyone as same as my daughters age had excision of hemi vertebrae? please share your experience. Is it safe to do it?

The doctor at boston children's is saying that removing a hemi vertebrae on lumber area is risky.

[leahdragonfly]

Hello there,

My daughter does not have congenital scoliosis, rather she has juvenile, so I have no personal experience with hemivertebrae. However, I took my daughter to see Dr Betz at Shriners Philadelphia (and we traveled 3000 miles from Oregon) and he is certainly among the very best. I imagine in your daughter's case it will be a very valuable third opinion.

Good luck. It sounds like you are doing a great job getting all the information for your daughter's surgery.

[gitaraja]

Any other thoughts on Hemivertebra excision?

[hdugger]

I wish I had some good advice. We just discovered that our 22 year old son's scoliosis is caused by a hemivertebrae, and we're trying to come to terms with what that means for surgery.

I know that fierceliketiger on this board had spinal surgery with a hemivertebrae, but I'm not certain if they excised it or just worked around it. There's also another parent, laurieg6, who had a teenage son with a hemivertebrae - I believe in his case they fused without excising it because they thought that taking it out was too risky. You might search through her posts for more info.

I second the recommendation of getting a consult with Dr. Betz. If anyone is going to know the best way to deal with choice, I think it's going to be him.

[congenitalscoli]

My daughter is also 13 with congenital scoliosis diagnosed at age 11. She has an incarcerated hemivertebrae at T7. She just had fusion surgery 3 months ago- her curves were T51 L38. She was fused from T4 to L3 and curves now T35? and Lumbar is completely gone. We were not offered excision but I had read about it on various websites. We did consult with a Shriners doctor (not Philadelphia) and he would have fused both curves as well. I definitely would have wanted more info on excision if either doc had offered it as an option. I doubt it would have been possible being that hers was in her thoracic and she had 2 curves. The surgeon told us after surgery that he had to use hooks and wires as he approached the hemivertebrae because he did not have enough to work with for pedicle screws. He did use spinal monitoring during the surgery.


I wish you the best as you make a decision. I have been following this website for 2 years and it has been a great help to me. There are not as many congenital stories around but the experiences are so similar. My daughter had surgery on a Monday- about 8 hours long & no ICU- stood by the bed on Tuesday- off the morphine on Wednesday- walked the floor on Thursday- home on Friday.

Again, best wishes for you all.

[laurieg6]

I haven't been on the forum for a while so I just saw this post. My son has/had (?) a hemi at T10 that caused his smaller curve of around 45 degrees. He had what we were first told was a compensatory curve in his lumbar spine of at least 65 degrees at the time of his surgery; we later found out there was another problematic vertebrae in his lumbar spine which caused that curve. Anyway, we were told that excision was too risky so his curves were reduced with his spinal fusion but his spine is not straight and his posture is not great. We saw four surgeons here in the Seattle area but they all had similar opinions. I'd be very interested to hear what Dr. Betz says about your daughter and a possible excision (which I had really wanted for my son). We almost took our son to him but after four opinions here from scoliosis specialists, we just decided to choose a local physician since they all convinced us that excision in the thoracic spine was too risky; they said it was more recommended for lumbar hemis.

[cocolaloca]

The fellow who followed our son for years and years forgot to x-ray his entire back as he grew. His hemi was in his waist area. Thanks goodness we got a second opinion just prior to surgery as the second doctor discovered that our son also has a pelvic tilt. Therefore, excision or fusion would have not have eliminated a curve! His curve is in the high 40's (degrees) and he is almost 19 years old. It doesn't seem to have gotten any worse in the last few years but he must deal with pain as the disks are pushing into the nerves. When the pain is too bad he will be fused from about waist level to his sacrum. He got through high school sports (no collision sports/positions after 9th grade) and continues to be active in college. He finds that an inversion table helps with the pain but since he can't fit one in his dorm room he uses gravity boots (remember those?!).

Just wondering if anybody else has congenital scoliosis with pelvic tilt and also wanted to alert others to the possibility of having both.
Thanks.

[robinlbe]

Hi Coco?????...
I'm a recent newbie on here....
Our 14 y.o. son was just diagnosed with congenital scoli last month.....
his hemivertebra is in the T4-T5 with a 34 degree curve.
This was his first xray ever.
I believe the xray was his full spine, but I need to get back and check.
I asked for the report AND the pictures.

We were also sent for renal studies and a heart eval - and Praise God - both came back just fine.

He is to have another set of xrays done in February (first set was end of October) to chec progression of curve (of the lack thereof), and then we start making decisiions - as he obviously has a lot more growing to do.

The folks on this forum have been WONDERFUL!!!!!!!!!!!!!! and they all highly recommend our getting a 2nd opinion at either the Shriners in St Louis or Philly....which our pediatrician supports. His only qualm is if something should go wrong, we woudln't have a local doctor to take care of our son.

Anyway, thank you for taking time to repost.....pls. do keep in touch....I'm anxious to hear how your son does.

blessings...robin

[cocolaloca]

Now my son is pushing for fusion surgery ASAP and I just made an appt. at Johns Hopkins - Dr. Cohen- for next month when he is back from his first year of college. He pushed surgery a few years ago but his UVA docs wanted him to hold off until the pain was real bad. Guess another opinion won't hurt and may help as it did years ago.
Am happy to hear about any experiences you all have had. Thx.

[kellybensmom]

Gitaraja,
did your daughter have the hemivertebrae excision? If so, how did it go? My son is 3 and has severe congenital scoliosis. We are trying to learn about all the different treatment options. Thanks!

[titaniumed]

Hi Kelly

For info, you can use the search button or it might not be a bad idea to start your own thread.

I hate to see these older threads drop off without you getting some info or support for your son.....

Many of the adults here will bump it up for you since many readers read sporadically.....

Wishing you the best

Welcome to the forum

Ed