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View Full Version : New here - 14 yo son surgery candidate



Jmom
01-12-2009, 02:49 PM
Hello all, I am glad to have found this forum. I have spent a few days on it reading back and trying to find out as much as I can about all this.

This time last year, my son had no noticable curve. In April he was dx with a 25 degree curve, thoracic, then in October a 30 degree, and last week a 40 degree with rotation. He also has kyphosis (humpback) which didn't show up when the scoli was 30 but is very marked now. He is now 14, and not done growing yet.

We have an MRI scheduled. He was born with a congential birth defect so I'm sure they are going to check and see if that is anyway related.

Bracing was never discussed, because the first increase was only 5 degrees and the doc thought it was insignificant then. But we are seeing a new doc and he pretty much agrees with the first. He is willing to brace him but feels at this rate that a brace would be lifelong - that as soon as he quits wearing the brace the curve will continue to where it would have been.

We feel pretty confident in his, Dr. Michael Schmitz, he did surgery on our son's elbow last fall for a very unusual break and is head of ortho surgery at Children's Hospital of Atlanta. He has published his own research and has added some techniques to the field of scoli, is member of related associations, so that is encouraging. Has anyone here heard of him? I know Oswald is supposed to be good too, but we originally saw another doc in his same practice and I am a little miffed that my son wasn't braced at 25 degrees.

The surgery Dr. Schmitz talked about sounded like either growth rods or VBS or maybe a combo. DH and I have a lot more questions for him, to find out more about the surgery.

I absolutely hate the thought of surgery when my son isn't in pain, but this is moving so fast, I hate to wait too long. It sounds like he is at a good age for this surgery, and the doctor feels that he could have more flexibility than he has now. It doesn't sound like bracing is really an option for him. Even though he knows his football days will likely be over (his favorite sport of all time) he is in 100% for surgery. In his words, he'd rather be straight than play contact sports because he won't play contact sports all his life but will use his back all his life. His friends/teachers are starting to notice his back and that bothers him too.

My biggest fear, of course, is the pain. I hear so much from people who had back surgery and they hurt worse after or they have to have more and more surgery. How was it for your kids? I hear about complications right after (infection, and such) but did any of your kids have long term pain? The hardest thing is to risk long term pain for something that isn't hurting now.

Also, I know they wake the kids up during surgery to make sure they can wiggle their toes. Do the kids remember that?

Anyway, I appreciate any insight you guys can give.

babachi
01-12-2009, 03:46 PM
Welcome, Jmom.

I may be a little scattered with my response, so I apologize ahead of time. I don't know anything about the growth rods or VBS. My son Jesse didn't complain of back pain until a bit after we knew surgery would be in his best interests. Your son may not feel pain now, maybe never will, but may in the future. I don't think pain is always the biggest concern.
Jesse's surgeon does some general ortho surgery, but specializes in the spine. I was /am very happy with him. If you have any reservations, don't hesitate for additional opinions. Especially since you have more questions about what exactly it is Dr. Schmitz is proposing.
My son did have complications with drainage and/or infection. That aside, he has been recovering amazingly. Today he started back to school 1/2 days. He is 4 weeks post op today.
As far the wake up test, the name is deceiving. They do not wake the kids up. They lighten up on the anesthesia just enough for their brains to hear them be asked to wiggle their toes, etc. We were told Jesse would not remember it at all, and he doesn't.
This forum is great and has kept me sane during some tough times.
Bethany
Son, Jesse age 16, fused T2-L1 on 12/15/08

Jmom
01-12-2009, 07:20 PM
Thanks, Bethany, it's nice to hear from you although I'm sorry your son had to go through this too. I'm glad to hear he is doing well...

What was his curve pre-surgery? How fast was it progressing?

I spoke with the nurse for about 30 minutes today and will meet with the doc to address some things with him before the surgery. But we found out it is a posterior fusion with instrumentation. The doc uses a navigation system too, which I found interesting, that pinpoints where to put the hardware rather than eyeballing things.

It may be a help in our case that my son (Ethan) is semi-homeschooled. He goes to class 2 days/week and does the other 3 at home. So we should be able to work ahead the week before surgery, be off spring break, then do the next week at home, laying around, whatever works, etc. E said he'd rather lay around doing school, since there's not much else to do, than laying around during the summer LOL

We spoke to a highly recommended chiro today, even though we kind of knew the answer, he pretty much confirmed that there wasn't anything he would or could do for my son's scoli at this point.

I just got word that the baseball league E wants to play in will let him be on a team until his surgery, he'll just be last pick probably. This means a lot to us since we're looking at 6-12 months no sports afterward (which will drive him bonkers)

He's thinking he may become a kicker on his football team. Wonder how long before he can kick?

WNCmom
01-12-2009, 08:25 PM
Jmom--

My 13 yo son Sidney had a long posterior fusion 8 weeks ago. He was diagnosed at age 11 with a 30-degree thoracic curve. We tried both Boston and Spinecor braces, and neither one worked for him. When we decided on surgery 21 months later, his curve was in the low 50s. Between then and the surgery date (5 months), his curve increased 20 degrees. It took the surgeons by surprise.

Based on my experience, if a curve is progressing quickly, it needs attention quickly. My son also has most of his growing left to do, but in our case, there was no alternative to surgery. He also had no pain.

Surgery: Sidney had no complications to speak of. He was in the hospital for 6 days. He was very lucky (and I think unusual) and his post-op pain subsided quickly. He has had no pain medication of any kind since about 2 weeks post-op. From what I read, most kids are on minimal, if any, meds by the time they go back to school. Sidney went back to school half days at 4 weeks post-op, then the Christmas holidays happened, and he is now back full time. He walks miles every day, and has even been hiking, with no trouble. I'm amazed at how quickly he is healing. During surgery they did do the "wake-up" test on him, but he does not remember it.

Restrictions: no bending, twisting or lifting more than 5 lb. for 6 months. After that, restrictions are lifted gradually (full bending and a few more lb. at 6 months), but it will take at least a year for all of them to be lifted. Of course, no full-contact sports, bungee jumping, trampolines, sky diving, or jumping on horseback ever. All surgeons have different protocols, but these are typical.

An MRI is a very good idea. If you are looking for a third opinion, I understand Dr. Betz at Shriners Hospital in Philadelphia will review x-rays if you send them up. He was helpful to us in making our decision. Shriners is on the cutting edge of scoliosis treatment, and he is Chief of Staff there.

Bethany is right about this forum. There are some very informed parents here who have quite a bit of personal experience, and are very supportive. Good luck with your decision and let us know if we can be of more help--keep us posted!

Mary Ellen

babachi
01-12-2009, 08:49 PM
Jmom,
Jesse was first seen in 6th grade(?) when his curve was high teens. The doctor doesn't recommend bracing until the curve is over 20 degrees. Jesse was braced about a year later at 23 degrees. Finally, Jesse's curve was in the 50's when the doctor told us bracing isn't found to be effective over 50 degrees. When he finally had his surgery, he was 68* and had a smaller compensatory curve higher up.
I would say it has been about 3-4 years that we've been following his spine.
Jesse's surgery was also spinal fusion with instrumentation.
Feel free to check out my blog. I have some before and after xrays.
Good luck and ask away or vent whenever you need to. We've all been in that boat.
Bethany
http://web.mac.com/bessiebingo/Site_2/Photos.html

mariaf
01-12-2009, 09:42 PM
Hi Jmom,

Sorry to hear what you are going through and I wish your son all the best.

While I have not heard of Dr. Schmitz, I have heard of Dr. Oswald and it's all been VERY good. I believe that he was one of the first doctors trained by Dr. Betz to perform VBS. My son had VBS a few years ago so I speak to a lot of parents of other "VBS kids". A few of them had Dr. Oswald as their child's surgeon and they were very happy with him. His name also seems to pop up on lots of papers and he seems to be one of the pioneers in the field.

As for not bracing your son at 25, perhaps they had their reasons and/or felt bracing wasn't going to work for him - I don't know - but I would certainly bring it up if that thought is nagging at you.

Also, I am wondering if they are referring to a relatively new VBS/hybrid rod combination. It is used in cases such as your son's when the doctors feel that VBS alone would not be sufficient to halt/correct the curve. From what I understand it has been used in curves that are in the 35 - 40+ range, or curves with too much rotation for just staples, or in cases where a child might not have enough growth remaining for VBS alone to have a good shot at working.

Just thought I would share this info with you - hope it is helpful - and best of luck to you and your son!

Snoopy
01-13-2009, 07:31 AM
Hi Jmom,

Ethan sounds alot like my daughter, except for their ages at diagnosis. Jamie was diagnosed at her 12 y.o. check-up. At the time, her Scoliosis was 36* and her Kyphosis was in the 70's. Although her curves were very close to needing surgery, she was immediately put into a Milwaukee brace, which she just would not wear. The doctors (we had five opinons) watched her closely and her Scoliosis progressed to 46* even though she was almost done growing. This all happened within about a year's time. I know surgery was the right thing for Jamie. Had she not had surgery, her curve would have continued to progress.

Did she have any complications? Yes. Jamie developed "junctional Kyphosis" above her fusion, which doesn't usually happen, but for some reason it did. We watched that curve and seriously considered more surgery, but thankfullly, the progression stopped on its own.

Jamie had a posterior spinal fusion with instrumentation and is fused from
T3-L2. She is four years post-op. Feel free to e-mail me anytime.

Mary Lou

smileyskl
01-13-2009, 08:14 AM
Jmom,

My daughter is only 11 but she is scheduled for surgery in two weeks. We have only known about her scoliosis for a little over a year. She has two equal curves and a smaller one. Both bigger curves went from 20 to 51 within a year and this was while wearing a boston brace 23 hours a day. Her doctor said that some curves progress rapidly no matter if they are braced or not. Sometimes surgery of some sort is the only effective treatment. You are on the right track. Lots of prayer and the people on this forum have been a huge help to me emotionally as so many people don't understand this disease. Hang in there and investigate your options and you will get a peace about what needs to be done.

smileyskl

laurieg6
01-13-2009, 12:15 PM
Hi Jmom,

My 13 year old son had surgery 1 1/2 years ago when he was only 12. He had minimal pain from the scoliosis prior to the surgery. I think his only pain came due to weakened back/torso muscles caused by wearing a TLSO brace for 3 1/2 years. I know how you feel about subjecting them to surgery when they're mostly doing fine but I'm so glad we did the surgery.

My son is so glad to be out of his brace and he now has no restrictions other than contact sports. He also has no pain and he was off all pain meds about 2 weeks after the surgery. He was never very flexible so his fusion had very little noticeable impact on his flexibility. We did the surgery in the summer so he had about 7 weeks to recover before having to go back to school. He was so bored by the time school started, he could have possibly gone back a few weeks earlier.

I believe I was told that they do not wake people up from the surgery anymore (at least at our Children's Hosp.). They do ongoing spinal cord and overall nervous system monitoring throughout the entire surgical procedure.

Good luck with your decision-making regarding the surgery and please keep us posted.

Take care,

pmsmom
01-13-2009, 01:09 PM
Welcome, Jmom.

I may be a little scattered with my response, so I apologize ahead of time. I don't know anything about the growth rods or VBS. My son Jesse didn't complain of back pain until a bit after we knew surgery would be in his best interests. Your son may not feel pain now, maybe never will, but may in the future. I don't think pain is always the biggest concern.
Jesse's surgeon does some general ortho surgery, but specializes in the spine. I was /am very happy with him. If you have any reservations, don't hesitate for additional opinions. Especially since you have more questions about what exactly it is Dr. Schmitz is proposing.
My son did have complications with drainage and/or infection. That aside, he has been recovering amazingly. Today he started back to school 1/2 days. He is 4 weeks post op today.
As far the wake up test, the name is deceiving. They do not wake the kids up. They lighten up on the anesthesia just enough for their brains to hear them be asked to wiggle their toes, etc. We were told Jesse would not remember it at all, and he doesn't.
This forum is great and has kept me sane during some tough times.
Bethany
Son, Jesse age 16, fused T2-L1 on 12/15/08

How's Jesse doing? Any more drainage?

Marian

Pooka1
01-13-2009, 01:15 PM
(snip)
I believe I was told that they do not wake people up from the surgery anymore (at least at our Children's Hosp.). They do ongoing spinal cord and overall nervous system monitoring throughout the entire surgical procedure.

That is my understanding also. My daughter had electrodes glued(!) to several spots on her head while they were prepping her. I was able to be there for this part. I believe the scalp electrodes completely obviate the need to bring patients shallow any more. Someone correct me if I'm wrong.

babachi
01-13-2009, 05:38 PM
How's Jesse doing? Any more drainage?

Marian
Marian,
He's doing pretty well. He went to school yesterday and today for the morning and was glad to get back. So far no more drainage!!
Thanks for asking.
Bethany

smileyskl
01-14-2009, 12:54 AM
That is my understanding also. My daughter had electrodes glued(!) to several spots on her head while they were prepping her. I was able to be there for this part. I believe the scalp electrodes completely obviate the need to bring patients shallow any more. Someone correct me if I'm wrong.


That may be true most of the time - I am not sure - but with my daughters surgery, the doctor said they would do both. This may be because she had the previous tethered cord surgery and that can mess with the machines results. I am glad people are saying they don't remember the wake up because that really freaked me out when he told me.:eek::)

smiley

pmsmom
01-15-2009, 09:12 PM
Marian,
He's doing pretty well. He went to school yesterday and today for the morning and was glad to get back. So far no more drainage!!
Thanks for asking.
Bethany

Glad to hear it! :)

Marian

HeatherM
01-25-2009, 04:41 PM
Jmom~ I think the surgery is tougher on the parents than the kids. I had surgery when I was 12 (I am 26 now) and I am just fine. I had total fusion and my scoliosis is in control. Sure, I have pain sometimes but not more than I had before. I didn't have any complications with infections or anything afterwards.

As far as the waking up part, that terrified my Mom too. The good news, I don't remember any of it. Should your son have the surgery, the hardest part for me was that my back itched so much after my surgery. Its because the nerves are growing back. There really is no way to get to them since it feels like you are trying to itch through cardboard. Silly as it sounds, that is the part that bothered me the most. I got most of the feeling back in my back but there are some parts that don't have it.

OH, and you mentioned sports and stuff. I am not a really "sporty" person but a friend of mine also had fusion surgery on his upper back when he was 14. He never let it stop him. He has actually become a great wake boarder and participated in the X Games and is a nationally recognized Wake Boarder! Surgery doesn't have to stop your son from doing what he loves!

Randi_K
02-04-2009, 08:39 PM
y, the hardest part for me was that my back itched so much after my surgery. Its because the nerves are growing back. There really is no way to get to them since it feels like you are trying to itch through cardboard. Silly as it sounds, that is the part that bothered me the most. I got most of the feeling back in my back but there are some parts that don't have it.


I had the same thing with the itching. I also have a couple spots where I still don't have feeling 9 years later. An ex of mine used to think it was hilarious to gently poke me in a numb spot with a pencil or something to see how long it would take me to figure out she was doing it. Usually I was reading or doing homework at a table, making it doubly annoying.

Jmom
03-12-2009, 08:09 PM
Hi all,

I posted here originally about my son's scoli, well it turned out to be more involved. The pre-surgery MRI showed Arnold Chiari Malformation I and a large syrinx. So he had surgery for that in February, it's technically brain surgery and recovery hasn't been easy. He's about 4 weeks post op and doing fairly well.

We're not sure about the scoliosis surgery. But he just had an x-ray and hasn't gotten any worse since January and may have improved a bit. This may mean that the chiari surgery has fixed the syrinx and stopped the progression of the scoliosis. The odds are against it for older children but it has happened.

This makes the scoli decision even harder. His Kyphosis is 70 degrees. His scoli is at 35. The surgeon said he is on the "cusp", these numbers aren't over the top, and we can look at bracing. The surgeon still thinks surgery is the way to go. My son feels like if his curve isn't progressing, he doesn't want the surgery.

On the other hand, we also are concerned what would happen if he is braced then find out at 18 he needs the surgery. We are being told it is a harder surgery when they are older and at 14 it's not as difficult as it would be even in a few years. IS that true? We are also concerned waiting that long just because of the possibility of what could happen to our country's healthcare

Also, being that it's kyphosis AND scoliosis, and that there is/was a syrinx on his spinal cord, I feel we really, really need someone even more specialized than our current doc. Our pedtric ortho surgeon here in Atlanta is good, and has done 1000s of scoli surgeries. But I am not sure he's done a "combo" case like my son has. How do I go about finding a surgeon with expertise with these unusual combinations?

Snoopy
03-13-2009, 07:14 AM
Hi,

I'm sorry to hear about the Chiari and surgery. Do you ever visit the Spinekids forum? I know there's several kids/parents on that site that have experience with Chiari Malformations. They may even have advice on doctors in your area.

To have Scoli surgery or not? That's always a tough decision. If it were me, I'd have to ask a lot of questions of a doctor who specializes in Scoli/Chiari surgeries before making a decision.

Best of luck in this tough decision.

Mary Lou

Jmom
01-22-2010, 12:27 PM
Well, it's been one year since the Chiari surgery. His spine stabilized for quite a while, but it has started curving again. He's in the high 40s now. So we are back to looking at surgery, probably in June.

Mom37
02-27-2010, 04:21 PM
You can PM me if you want as I am not on the site much. My daughter did have to have both CM and fusion surgery too. We were advised it probably wouldn't stop curve, but one can only hope we are the exception. Of course we always hope, but it wasn't so for us. It really went well. Now 2 years past, we (she and us her parents) are very glad she had the surgery. The curve was becoming noticeable to others, and her self esteem is so much better now.

Jmom
07-09-2010, 12:26 PM
I wrote the original post on this thread - here's our update:

My now 15 year old son was diagnosed with Scoliosis and Kyphosis in 2008, and was dx with Chiari Malformation and Syringomelia in January 2009. He had his Chiari decompression a month later.

His Chiari surgery was particularly painful because as a defensive football player, he had a very muscular neck. The surgeon warned us that it would be painful recovery for him. I talked to several nurses and his pain was not typical at all of what they see there - so anyone reading this, don't worry, ours was not a typical case!

However, once the headaches went away, he went pretty quickly to normal activities. At last check, his "flow rate" is all good and he was gaining strength in his right side (he didn't even realize how weak he was on that side)

He started playing baseball and got in a season this spring, playing catcher (which I am not convinced is a "non-contact" position, and is a source of contention in my home LOL).

For almost 9 months, his scoliosis quit progressing and we thought for a while we were one of the lucky few. By last month, he was at a 60 degree curve scoliosis, and 87 kyphosis. So, we had to get the fusion and we are now 4 weeks post op.

After the correction, he is now 14.2 on scolio curve and 20 on kypho. His fusion is T4 to L1. His incision length is 308 mm. The used internal dissolving stitches and external glue. They chose to use titanium rods and screws because he will need future MRIs to monitor his Chiari. His neurosurgeon was on standby during the surgery, and they also used a brainwave monitor.

The surgeon said he had to use a torque wrench to pull him straight (but he might have been kidding LOL)

Oh my goodness, compared to the Chiari surgery, the fusion recovery has been going very well. He has never put his pain higher than a 3. He was off ALL pain meds at the end of the first week, even OTC meds.

He did have to receive his own blood back during the surgery (they used cell capture). For a while he looked very pale, and kept feeling dizzy upon standing, so I have been giving him iron supplements and children's multivitamins and that seems to have helped. He had some bloodly discharge that they think was a hematoma, that set us back a week and they put him on antibiotics just in case. That seems to have cleared up.

At 4 weeks post op, he is now allowed to swim (not competitive), play ping pong, foosball, and "toss" a baseball (NOT throw) He is SO straight - it is unreal. He gained 2 inches of height. He is SO excited about how he looks, he keeps talking about how straight he is, I don't think he realized how crooked he was.

All in all we are pleased with how things are going. We absolutely love his surgeons - Dr. Barun Brahma (neurosurgeon) and Dr. Michael Schmitz (orthosurgeon) at Children's Healthcare of Atlanta at Scottish Rite

Jmom
07-09-2010, 12:29 PM
Here are his before and after xray images:

CamsMomKelly
07-09-2010, 10:39 PM
Im really glad you posted this , my son was diagnosed at 4yrs old with chiari,syringomyelia,scoliosis, his scoliosis held somewhat over the past several years until recently he is now in low 50's and being scheduled for surgery in 2-4months, his neurosurgeon will be attending too. The decompression surgeries were rough I was worried about this back surgery , Im glad you son did well with his gives me promising thoughts instead of negative :) His xrays look great!!!

ARodsMom
11-03-2010, 11:58 AM
Jmom & CamsMomKelly, I am new to this forum but am so glad to find moms of boys who are dealing with what my son is dealing with. He has had the chiari decompression surgery back when he was 3, a stint inserted into the syrinx when he was 4, and now at age 12 has been told he needs rods to straighten his spine. He was told by ortho to stop playing football (his first love) and was heart broken, which broke our hearts. He is playing select baseball and not looking forward to time off from that as well now.

This forum has helped me so much and to find young boys with cases similar to his is EXTREMELY helpful. We were told yesterday by neuro surgeon that titanium was needed so they could continue with MRIs. Now to deal with Ortho's office to be seen.:mad: Me and the hubby feel as if we need to get this done as quickly as possible, we'd love to do it soon so he'd have the holidays to recoop, this way he won't miss as much school time. I thought of Shriners but 3-4 weeks before we get seen sounds like an eternity to me. His scoliosis jumped from 42 to 53-54 in 5 months, 2nd opinion said he measured it at 59 not 54 (same x-ray). Either way, it's progressing quickly and we'd like it taken care of quickly.

Sorry for babbling.....just felt really good to find moms in similar situation.