New here - 14 yo son surgery candidate

[Randi_K]

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]

Update

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]

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]

We're back!

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]

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]

Follow up

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]

Here are his before and after xray images:

[CamsMomKelly]

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]

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. 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.