Need advice re surgery for my son

[trav86]

Hi.

I got some very helpful information from this forum a few months ago, so here I am, asking for your input again. I apologize in advance for the long post.

My son was diagnosed with a curve of ~20˚ when he was 7 years old. His doctor recommended watching and waiting, which we did until he was 12, at which point the curve progressed to more than 25˚ and he was braced. He's had the brace for the past 2.5 years, but he hasn't been compliant. His curve was measured again in November and his current doctor--Dr. Green at HSS in NYC--read it as 50˚ and recommended surgery. We panicked and took him to Dr. Vitale at Columbia in NYC, who measured it as 42˚ and said, wait. Just to confuse ourselves more, we then went to Dr. Betz at Shriners in Philly who got a measurement of 48˚ and also recommended surgery.

My first reaction was to see if we could avoid the surgery no matter what--it is one scary-sounding operation! However, my son is beginning to look deformed--noticeably curved and hunched. (I overheard one of his friends say something to him about it.) Drs. Betz and Green both say this is a much easier operation to recover from at a younger age. (When I saw Dr. Vitale I was in the say-it-ain't-so mode, so I didn't ask him about younger v older.) So we're coming around to the idea of surgery sooner rather than later.

My dilemma is this. Even though my son has been seeing Dr. Green for several years, he's not my favorite person. I realize you don't have to love your surgeon, but I haven't been able to get feedback about him on this forum or anywhere else. Dr. Vitale seems great to me, but he's saying wait; in the meanwhile, I'm watching my son get more bent over before my eyes. Dr. Betz also seems great, but he no longer performs the surgery himself--he has a team of surgeons who work for him, none of whom we've met. An additional drawback is that Dr. Betz is in Philadelphia, which means the surgery, the pre-op testing and the follow up would be in Philadelphia. We live in Manhattan and we don't own a car. We can rent one, but then my son would have to take a 2-hour drive home 6 or 7 days post surgery, which sounds like torture to me.

We've tentatively scheduled the surgery with Dr. Green for 5/26, but I have a lot of misgivings about it. We're seeing Dr. Vitale again in March, and I find myself in the curious position of thinking I will try to talk a doctor into performing surgery! Unless we go ahead with Green or one of Betz's guys. I would appreciate other people's views on this.

Help! Thanks.

[mariaf]

Hi Trav86,

I can certainly understand your feelings. I don't know of Dr. Green but maybe that's because I talk more with parents of JIS patients, I don't know. We also used to see a doctor affiliated with HSS whom I didn't really care for on a personal level. I'm guessing part of the reason these docs don't seem as "warm and fuzzy" as guys like Vitale or the team at Shriners is that HSS isn't a children's hospital?

Anyway, here's my two cents.

I have no personal experience with Dr. Vitale in terms of him treating my child but I've had contact with him and I also know several parents of his patients. By all accounts, he is excellent and I can understand your reasons for wanting him to do the surgery. I even had a conversation with Dr. Betz once (a parent asked me if Dr. V had a good reputation) and Dr. Betz said he was "superb".

As for the team under Dr. Betz in Philly, they are equally excellent. I know parents whose children have had surgery with each of the spine doctors there and have heard nothing but good things. If my child needed surgery, I would be 100% comfortable with anyone on Dr. Betz's team. The wait for surgery may be a bit longer at Shriners than elsewhere due to the number of patients on the waiting list just FYI.

As for the drive home after surgery, my son did it following VBS and I know other children who have had fusion and then took a few hours' drive home (a lot of the patients at Shriners come from out of town). The comfort level varies from child to child but I don't think it would necessarily be "torture" He'll probably still be on some pretty good pain meds at that point

As for follow ups, if you do decide to go the Shriners route, they offer free transportation for the patient and one parent so you could always arrange that for subsequent visits. Or you could take Amtrak from Penn Station into Philly and be a short cab ride from the hospital. I have done both of the above.

Best of luck to you and please feel free to ask us anything.

[scoliboymom]

Everyone is different but in my sons situation when he first saw his surgeon at about 68* the surgeon said yes he needs surgery but there is no immediate hurry. As he had a fair bit of growing to do it was better to let him grow as much as possible. Turned out his progression was very rapid and it was decided to go ahead with the surgery once he reached 80ish degrees even though he still had a fair bit of growing to do. In hindsight I am very happy he was given an extra few months to grow but sometimes I think even at 80* maybe we should have waited another 6 months for him to mature a bit more. No real regrets about his surgery but he did get a form of crankshafting. His ribhump which completely disappeared after surgery has since come back completely and I know it is because he is still growing.
You may want to discuss his physical maturity with the surgeons and by all means get as many opinions as possible. By the way Patrick had just turned 15 at the time of his surgery.

And regarding the ride home after surgery, Patricks was over an hour and he was packed in with lots of pillows and reasonably comfortable. They get a good dose of pain meds just before the trip home.

Ramona

[LindaRacine]

Hi...

I usually don't give much weight to "feelings". But, in the case of a huge surgery like this, I'd probably take it into consideration. Is there any possibility of a 4th opinion? Since you're in New York, you might want to think about Baron Lonner, Michael Neuwirth, or Oheneba Boachie.

--Linda

[trav86]

Thanks for all the input. Maria, you're the reason we went to see Dr. Betz to begin with, and I so much appreciate the rec. Ramona, I'm sorry to hear your son's rib hump returned. Do you know how often that happens? And what is crankshafting? Linda, I will look into those other doctors. I've heard of Boachie--all good things--but I don't think he takes insurance.

Thanks again!

[scoliboymom]

Hi Trav86
I don't see others talk about their ribhumps returning so I am thinking it is less common. I think it has to do with the crankshafting. I'll see if I can explain it. Basically with posterior fusion the spine gets fused on the posterior plane of the vertebrae. This means that the anterior side is left unfused. If the child/teens spine continues to grow significantly and is being held rigid on one plane (by the fusion) the anterior side twists and distorts to take up this growth. I guess that is why they don't like to fuse young children and sometimes opt for non fused growing rods.

In Patrick's case to look at his x-rays it appears the rod and fusion are still straight and stable and have not moved but his ribs have twisted out. I can't totally envision what is happening inside but hope this helps you to understand. I think it may be a combination of (at time of surgery) his large curve to begin with, he had plenty of growing ahead of him still and he had a large rotation. Its worth asking your surgeon about but I do believe it's rare.

Ramona

[mariaf]

Since you're in New York, you might want to think about Baron Lonner, Michael Neuwirth, or Oheneba Boachie.

--Linda

These guys all have great reputations. In addition, I have spoken to several parents of Dr. Lonner's patients and they all absolutely adore him. It seems that his name comes up a lot with regard to children and teenagers. While I believe that all three of these surgeons treat both adults and kids, it seems that Dr. Lonner's practice is more focused on treating children/adolescents - I could be wrong, but in any event, I don't think you could go wrong with Dr. Lonner.