New with questions in NC

[WNCmom]

Hello All--

First, I want to say how wonderful this forum is and what a resource it has been for me. Thank you, all you brave patients and parents out there, for sharing. I only wish I had found you all a year ago; I might have done things differently.

My 12-year-old son was diagnosed with scoliosis a year ago. He wore a Boston brace for six months, during which time his thoracic curve progressed from about 35 to 40. He has a compensating lumbar curve of about 24. In a little over a week we will go to Atlanta so he can be fitted for a SpineCor brace. We know that the odds are against him avoiding surgery, but we're trying everything to avoid it. The best we may be able to do is delay until he stops growing.

In the meantime, we are also trying to learn as much as we can about surgery. Does anyone out there have any experience with UNC Hospitals in Chapel Hill for surgery? Our pediatric orthopaedist (a surgeon) there comes highly recommended, but I don't know anyone who has experience with the surgery at that location.

Also, a few technical questions:
--what's the difference between functional and structural scoliosis?
--at what point does a compensatory curve become a structural one?
--how does vertebral wedging happen, and when?

Thanks very much for any info anyone may be able to share on this.

[LorDon]

Hi,
I am also new to this forum and I too had questions about structural and compensatory curves. If you do a search under "Vertebral Stapling Support" you will find some great posts from MATJESNIC and flowerpower about this. They have both taught me a great deal. My 17 year old son is waiting for surgery at Children's Hospital of Philadelphia.

Good luck and keep us posted.

Lori

[WNCmom]

Functional vs structural, and wedging

Thanks, Lori, for pointing me in the right direction.

I did a quick search and found a brief explanation; I'll look around some more. Next week I may be able to get some specific questions answered when we go to Atlanta to get the SpineCor brace fitted. My main question was whether my son's T curve (40) would be considered structural or simply functional. It appears, then, that if a curve progresses to 40 degrees, it's structural and the vertebrae have been affected or wedged (even at Risser 0?)....I guess I was hoping that wasn't true. Even though I have gathered lots of information by reading posts on this forum, I still have so much to learn!

During the first 12 months of knowing about my son's scoliosis, my husband and I really put ourselves in the doctor's hands....we followed his instructions to the letter, but I didn't do as much research as I could have, and now that things have progressed, I'm digging a lot deeper. I can't say that we would have done things differently, because we probably would have gone the rigid brace route first anyway (I'm embarrassed to say), but it's hard to look back and think we might have avoided the progression if we had known what we know now. I say "might," because I know some curves progress regardless.

I've been reading your posts and wish you and your son the best of luck.

Mary Ellen

[emma12]

I also posted under the vertebral stapling support thread about our experience. As you can see from there, we're still in a wait and see if the lumbar curve straightens itself out. But definitely, when her lower curve was 47L, her bending xrays showed correction to 0, it was not fixed or rigid at all, so I don't believe that there is a definitive degree as to whether or not a doctor can say it is compensating or "real". However, in our case, the lower curve rapidly was becoming real, 3 months later at 53L, it only corrected to 15 degrees in the bending xray. The determination is made by visual exam and xrays (especially the bending xrays) for changes in the vertabrae. And, even I could see the difference in 3 months on the lower curve when she bent over.

As far as wedging, again, I don't think that a specific degree of angle alone can tell you whether or not there is vertebral wedging occurring. Even when my daughter's curves were 53T and 47L, we were told there was very little, if any structual changes in the shape of the vertabrae. I didn't ask at the final xrays before surgery if that had changed. She was rapidly changing at that point and her curves were definitely becoming more deforming, so there could have been.

Good luck, I think it is somewhat of a judgement call for the doctor, and you need to have faith and trust in your doctor to make the best decision. I am totally comfortable in the decision he made for us, I still am praying though, that it will straighten itself out like we hope to see.

[WNCmom]

Thanks, emma12. All this information is so helpful--it sounds like my son's curve is similar to your daughter's, and we might find ourselves in the same situation. Would the SpineCor brace be an option if you need bracing?

[emma12]

I will certainly look into it, as we never had good compliance with the boston brace in the past (and even less with the providence brace). We were going to check into the spinecor before, but things progressed so rapidly, at the time when we realized she was up into the 40's, I did not think that the spinecor was an option anymore. Now, I don't know what options are available with having already had the thoracic spine fused, but I would certainly even look into stapling, or anything to keep from doing further fusion surgery. Anything - looking back, and I know you shouldn't keep doing that, I certainly wish we had been more aggressive when we saw that we were having issues with brace compliance, and rapidly changing angles. However, I'm not really one to go for experimental treatments either, so---we're saying our prayers for now, and hoping that something finally goes the way we want it to with this condition.

[MATJESNIC]

In North Carolina, the name Dr. Lloyd Hey comes to mind. Two families had their children's surgeries done with him and supposedly he is very talented and unique. If I had lived closer, I would have taken Nicole there for at least an opinion.

If you want, I can have one of the families send you an e-mail or you can do a search.

[mariaf]

Now, I don't know what options are available with having already had the thoracic spine fused, but I would certainly even look into stapling, or anything to keep from doing further fusion surgery. Anything - looking back, and I know you shouldn't keep doing that, I certainly wish we had been more aggressive when we saw that we were having issues with brace compliance, and rapidly changing angles.

Mary Ellen,

Since Emma mentioned it, the stapling is just another alternative out there to consider. A lot of doctors are coming on board - just today a mom told me that the team at Boston Children's (Emans and another guy) are having Dr. Betz come there to train them and sit in on the first few staplings they do.

If you are interested, there's a link on this site to a Vertebral Stapling Support group where you can hear from lots of parents who've recently been through the stapling with their children.

With curves around 35-40, and assuming that your son has a few years of growing left to do, he may very well be a candidate. Nobody knows for sure how many of these kids getting the stapling will be spared fusion - but over the last 6 or so years the data is has been very promising.

Whatever course you take, best of luck to you!

[WNCmom]

Whew--lots to think about.

Melissa, I think I've read about Dr. Hey on this site; when we get to a point about wanting a second opinion, he may be the one to go to.

I know almost nothing about vertebral stapling, so I guess I'd better find out about that, too--I didn't imagine my son would be a candidate (he's 12). Our orthopaedist in Chapel Hill hasn't mentioned that; only that if surgery is necessary, he will try to delay as long as possible to allow as much growth as possible. It's all moving so fast. In one time frame, we're about to get a SpineCor brace in the hope that it will hold the curve, at least. In another, we have to consider the surgery that is likely down the road. It's tricky trying to be as positive as possible with a child, but being realistic, too, and doing research in the background at the same time.

We also are considering trying to get an appointment with one of the inventors of the SpineCor brace in Montreal, since we will be in Vermont over the holidays--I don't know if the timing will work out. First we have to get the brace itself!

[mariaf]

I know almost nothing about vertebral stapling, so I guess I'd better find out about that, too--I didn't imagine my son would be a candidate (he's 12). Our orthopaedist in Chapel Hill hasn't mentioned that; only that if surgery is necessary, he will try to delay as long as possible to allow as much growth as possible.

Hi Mary Ellen,

First of all, I'm not totally surprised that your ortho didn't mention the stapling - mine didn't either. She was trained to think "bracing until either fusion or growing rods become necessary".

Thank God there are other alternatives out there.

As far as whether or not a 12 year old boy would be a candidate or not for stapling, it depends on how much growth he has left to do. Boys grow sometimes until college so I would definietly not rule it out.

The person to call for a preliminary opinion would be Janet Cerrone (1-800-281-4050). She could probably tell you whether or not a trip to see Dr. Betz (the "inventor" of the stapling procedure) in Philly would be worthwhile. She's the PA who works closely with him and is a wealth of knowledge and extremely nice.

Feel free to e-mail me as well with any questions, etc.

Best of luck to you!

[WNCmom]

Thanks, Mariaf. Another place to look for information. It's all helpful. Anybody ever feel overwhelmed?

[jillw]

Mary Ellen, Oh yes - I am new to this and also feel incredibly overwhelmed, scared and downhearted. My daughter's curve isn't as big as your sons, but since she is so young, she has all those additional years to progress. I have to hope that once we all adjust to this news and figure out our course of action that things won't be quite as overwhelming? (at least for little periods of time maybe we'll be able to have moments where scoliosis isn't the primary or underlying thoughts running through our brain?) It seems like some of the moms and dads on this board are coping quite well (and thank God for them and their willingness to share their information with us!)

[LorDon]

Hi Mary Ellen,

I also feel very overwhelmed and incredibly sad. Everytime I look at Chris I feel so guilty knowing that he is going to have to go through such a tough surgery with a long recovery. I only wish that I could trade places with him and have the surgery for him. (I'm sure that I'm not alone with that feeling!) I also have many regrets about things that I should have done differently but everybody on this forum has taught me that feeling guilty about things is a waste of time and energy so I'm trying to get over that. I feel like I have found a bunch of new friends on this forum. I don't have any friends who have kids with scoliosis so they really don't understand. They can sympathize but that's about it.

Lori

[anwmom]

Hello!

I love Chapel Hill, NC! It is one of the most beautiful places I have visited. I used to travel there for work. The Franklin Hotel is amazing!!!

Anyway, I am also new to this forum and completely understand the whole range of emotions you are experiencing especially about choosing the right doctor. My daughter is almost 13 and was diagnosed in December. We did the wait and see for three months and then in March her curves had progressed (40 T and 30 L) so her Dr. put her in a Boston brace. When she went back for a recheck, her doc was not happy with the support so he wanted to put her in a Milwaukee brace. I had been doing research and found the Spinecor brace. With a little reluctance, he agreed to use the Spincecor. We had to travel 6 hours for the brace but now we are able to have adjustments done locally since the specialist comes to Cincinnati Children's every few months. We have since changed Drs. and now see Dr. Mehlman at Children's since he has vast experience using the Spinecor.

At any rate, I had no idea how much this would impact my daughter emotionally and the impact it would have on our family. One recommendation that I might offer is to consider having your son (and yourself) to begin seeing a counselor to help get through this difficult time. I wish we would have started that process sooner.

[WNCmom]

Thanks for the suggestions. I'm not sure we're at the counseling point yet, but it's a good idea! I think I put a lot of pressure on myself to follow up on all the options I hear about, and worry I'll make the wrong decision and/or wait too long to make a decision so that the best option is closed off. My tendency is to project into the future and we just can't know what's going to come down the road. For me (and just me personally), this is the downside of researching options ahead of time--the more I find out, the more I can see all the possible negative outcomes happening. I somehow think I have to know everything we might do in each scenario in advance.

The part of me that will do anything for my child is huge, but there's also a part that feels exhausted and overwhelmed by the responsibility for making the right decision at the right time, and deals with all the details of phone calls, travel, scheduling, and finances. A conversation with my husband this morning helped. He reminded me we're simply gathering information now and the right decision will come to us when it's time.

Thanks for listening to me vent--I'm a little bit better today.