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Lccmom
01-10-2014, 04:01 PM
I'm new here. I'm a scoliosis mom (harrington rod 1981) now caring for my 15 year old daughter who recently had congenital scoliosis surgery. She has a hemivertebra, t10 and her primary curve was a kyphosis curve of 59 degrees. She was fused from T8-L2. She has had a very difficult recovery. Her surgery was in November 2013. Our biggest concern is her continued severe pain in her shoulder blade area and her rod is pushing up against her skin. I can see it from the top of her fusion till about two inches down her fusion. When I first noticed it we went back to the surgeon because he thought the hardware must have moved and he was going to operate immediately to fix it but after x-raying her he said nothing moved. He said it was so visible because she's pushing her shoulders, neck and head forward to avoid the pain which is making her rod visible. He hoped as she continues to recover she will stand more upright. So far the rod is becoming more prominent as the surrounding swelling reduces. I can't even begin to say how depressed she is about the continued pain and rod sticking out. It seems like she needs to have the fusion continue higher and the rod put in deeper (yes she is thin). Does anyone know how that surgery would compare to the first
one?Has anyone heard of hardware being visible so soon? I know there are many people having revision surgeries for
older hardware but I wasn't expecting this for her. Any similiar stories out there
Melissa

tae_tap
01-10-2014, 06:13 PM
First off welcome to the forum! Can I ask who her surgeon is? How old she is? And where are you guys from?

Tamena

titaniumed
01-10-2014, 07:15 PM
Hi Melissa

Just wanted to welcome you here and I'm sorry about your daughters difficult recovery......

Do you have any x-rays you could throw up? One of the things that’s hard to fathom is a rod moving with today’s new systems using pedicle screws. These screws have the very secure clamping design so its really hard to have a rod move especially with a few screws attached to the rods.

Did her surgeon remove the hemi? Just wondering.....

And how are you doing after 33 years?

Ed

Lccmom
01-11-2014, 07:20 AM
I'm trying to post x-rays???

15591560

melissa

Lccmom
01-11-2014, 09:18 AM
Ed,
My daughter did not have the hemivertebrae removed. We saw three surgeons and none thought that should be done.
My harrington rod has never caused me any problems. i've been very lucky. My fusion is the entire length of my spine (i don't know the numbers). I have never felt the hardware in my back and I don't feel restricted in my mobility at alll. I've always been very active. The only activity that i do that reminds me of my fusion is skiing. I thought my daughter would have an easier recovery since she had a small fusion. Boy, I was so wrong about that.
One thing that I find odd is that when i feel my spine I can still feel each vertebrae but when I feel her spine in the fused portion I can't feel any vetebrae- only rod. Any thoughts on this? Different hardware, healing time, bad surgery outcome??
Melissa

leahdragonfly
01-11-2014, 10:41 AM
Hi,

I'm really sorry to hear of your daughter's experiences and pain so far. I tried to look at her lateral x-ray and wonder like you mention if the fusion went up high enough. This is my entirely lay opinion, but it looks like there is possibly a significant kyphosis starting at the top of the fusion.

Would it be possible for you to take you daughter for another opinion with a top-notch surgeon? It would be impossible for me to accept that this is her outcome at this point. And did your surgeon recommend any PT to help her with the pain and postural issues? If she develops a postural habit of hanging forward over the tops of her fusion it seems like she's going to be prone to problems down the road. Also, I noticed from looking at the x-rays that they don't quite encompass the whole spine. It is critical to view the entire spine for balance when trying to evaluate scoliosis or a problematic fusion.

Good luck, and please keep looking for an answer for your daughter's pain. Let us know how things go.

titaniumed
01-11-2014, 01:00 PM
The x-rays are hard to see since they cannot be enlarged. Plus I’m going blind in my old age. (smiley face)

Just like Gail mentioned, one of the things we have to worry about is PJK. Proximal Junction Kyphosis. That’s the falling forward of the spine above the construct. These situations can be repaired and some forum members have had this done here in the past. We have to worry above and below our fusions unless the fusion is taken to the pelvis. Since your daughter is fused to L2, there is less probability of problems “below” vs fusing down to L5. This is done because of this and because of mobility. Less surgery seems to make the most sense, but there are never any guarantees with anything we do. It’s a numbers game and the surgeons choose the odds.

Having a hemi complicates matters and becomes a very special situation.....kyphosis is also not a simple matter, similar to scoliosis, but a different animal. These types of complex surgeries should only be attempted by the best in the business with a strong pediatric track history. Spinal cord impingement plays a HUGE part when this happens. The body is extremely complex and it is amazing what we can do, and amazing how much we know, and don’t know. We truly only have the first pc placed in a million piece puzzle and have a long way to go.

2 months is still early as far as recovery is concerned. Even though she is only 15, I think that many or most surgeons will want to wait on this before any revision is considered “if” that is truly necessary. More time is needed along with many visits to your surgeon.

I don’t know what she is sleeping on, but I would HIGHLY recommend a latex foam topper 3” thick. This makes a world of difference in trying to get some sleep while we are in our “survival mode’s” of spinal recovery. There are many threads here on the sleeping and foam matter, and most agree on this. The bed also should be dead flat, with no hammocking. A hard dead flat mattress with the latex foam is a good setup. Latex foam has the bone color, not yellow. The old style yellow foam doesn’t retain its shape, and degrades quickly. Soft, soft, soft down pillows are also a must.
http://www.foamsource.com/shop/family/natural_latex_toppers?gclid=CMiaxbbc9rsCFcZafgodLC kApA

Remember that medical expenses are deductible. I had a high amount of medical expenses years ago and my accountant told me that I could buy a nice jacuzzi with a doctors note. I bought a $7000 spa, and it cost me $2000. It had the neck jets, and all the bells and whistles....a good thing to have since there are 2 of you. Talk to your CPA.

Try to hang in there ok?

Keep posting

Ed

Lccmom
01-11-2014, 01:26 PM
Tamena,
My daughter is 15. We are from NYC area and her surgeon is a top surgeon. I'm frustrated with her situation but I'd rather not mention his name here.
Melissa

hdugger
01-11-2014, 01:55 PM
Tamena,
My daughter is 15. We are from NYC area and her surgeon is a top surgeon. I'm frustrated with her situation but I'd rather not mention his name here.
Melissa

Can I ask if he is a top orthopedic surgeon? Or a top scoliosis surgeon. My son (now 25, but diagnosed around 15) also has a hemivertebrae and kyphosis (along with scoliosis). He hasn't had surgery. We picked our first doctor because he was the most well-respected orthopedic surgeon in our town (Portland). What we didn't figure out until later was that, although he was a terrific orthopedic surgeon, in general, he was not a specialist in scoliosis. You'd have thought those kids with club feet in his office would have tipped us off, but I didn't even consider that I needed someone who was even *more* specialized.

So unless your surgeon is a scoliosis specialist (you can look them up on the SRS.org website) he may just not know enough about these cases to know about what exactly to expect after surgery, given your daughter's somewhat rarer case.

As the parent of a (now) young adult with kyphosis I know that it's very hard to balance the curve in the sagital (front to back) plane. These kids are supposed to have *some* curve in their spine, and it just takes a ton of expertiese to get that final curve exactly right.

One other thing I'd suggest is visiting the Scoliosis Support forum. Unlike this forum, that forum has a large number of patients with kyphosis. They'd be likely to have a better sense what might be going on with your daughter's back.

I know it's hard not to worry, but I'm sure this will all get sorted out, one way or another. Sometimes the muscles just settle back after awhile. And, even if that's not enough, in her case, it's not nearly as major a surgery to try to do a little rebalancing above the curve. I'm hopeful that it's just the muscles, though. Best of luck.

jackieg412
01-11-2014, 07:14 PM
Hi,
Let me welcome you and your daughter. AS everyone else has commented --it is still very early in the healing process. I am an older adult and had surgery in my 50's. Six days after fusion t-10 to pelvis ,I fractured through t-9. My hardware really stuck out at the 1st year and kyphosis curve increased 20 degrees in 1 year--then I had surgery t2-t10.
Your daughter is not even used to the way the rods feel{it takes awhile} and she may be bending away from them. it is early,but is she having PT? The Pt people can encourage her to stand and sit better. She is so very young--and she may be bendable and needs to be reminded about head up, shoulders back--things like that. The rod in the mid spine is tough--but gets better with time. I do think thin people feel these rods more{less place to hide them}
It has to be hard on you to watch her go through this.
I even asked for a brace to slow the kyphosis down---I was told that it wouldn't work for me--but she is so young. Maybe?

Lccmom
01-11-2014, 08:42 PM
Thank you jackieg412 for your support. You mentioned many good points. Her surgeon said we can't consider pt until she's feeling better. She's had a migraine since the day after the surgery. He's treating it with several meds and we're starting to see some improvement so hopeful she'll be able to try pt soon.