Needing surgery this summer-lots of ???

[Basketballboy]

My son who is 12 yrs old will need scoliosis surgery this summer. His curve is >50, and the fusion will be from T3-L1.
I have questions about long term effects of the surgery- has anyone needed revisions? What about the hardware- the rods or screws holding the brace failing thus needing further surgery? Has anyone had more pain long-term after the surgery? How about flexability- has it been impaired?
Any comments from those who have had this done will greatly aleviate my fears. Thank you.

[LindaRacine]

Hi...

You may want to post to the Parents forums, which can be found here:

http://www.scoliosis.org/forum/forumdisplay.php?f=101

Regards,
Linda

[Snoopy]

Hi and welcome!

My daughter had surgery when she was 13 y.o. She will be 18 y.o. this summer. Jamie is fused from T3-L2 with two rods, several hooks and wires, but no screws. She is a painfree, active teenager who hasn't regretted her surgery for one second. She does have slight problems with flexibillity, but it is mostly caused by her tight hamstrings and not necessarily caused by her back.

Mary Lou

[Pooka1]

Hi. I'll try to answer your questions but only have the experience of one kid who went through this. My point is that you should read as many other testimonials as possible as the variation in the surgery and recovery is huge.

My son who is 12 yrs old will need scoliosis surgery this summer. His curve is >50, and the fusion will be from T3-L1.
I have questions about long term effects of the surgery- has anyone needed revisions?

While revisions were sometimes necessary with the old hardware, I am told the new hardware is "one-stop shopping" for many kids. In other words, revisions are not envisioned as ever being needed similar to a broken bone being set not needing revision.

What about the hardware- the rods or screws holding the brace failing thus needing further surgery?

The hardware and techniques are so good these days that ~95% of kids need no physical restrictions whatsoever and still get a good fusion. Our surgeon restricts all kids from certain activities for 8 months because he doesn't know ahead of time who the 5% are who need the restrictions to get a good fusion. Some prominent surgeons don't restrict kids at all for any amount of time and play the odds.

Has anyone had more pain long-term after the surgery?

I am unaware of any testimonial for kid who had more pain long-term other than the one or two testimonials on another forum of kids who developed regional pain syndrome. But even then, it was treated as far as I know.

How about flexability- has it been impaired?

Not likely with your child's fusion ending at L1. My kid's fusion also ended at L1 and she can't tell a difference in flexibility or bending pre- and post-surgery.

Any comments from those who have had this done will greatly alleviate my fears. Thank you.

This surgery put my daughter back in the general population on risk for all future back issues (that is, she is not predisposed over an unfused person to any future back problems) and she was back in school full time at ~3.5 weeks. How's that?

[CarlyG]

CarlyG

Hi I'm a 12 year old girl who had spinal fusion surgery in November 2008. I had double curves, 70 degrees lumbar and 64 degrees thorax. I was fused from T4-L4. Yes my flexibility is less but I have learned to bend from my hips. I really thought it would be worse but it turned out great and I'm completely happy with my results.

I think that after your son's surgery he will have more flexibility because it will not be fused as far as mine. I wish him well with his surgery.

[macky]

Carly, just had to comment. Good on you sweety, so proud of you, and a very good post you wrote as well. You are right, I learnt to bend from the hips too and it was really great to read that you are already doing that.

Macky xx

[Carmell]

Welcome.

The only concern I have about fusing a 12yr old boy is future growth of the spine. This could (in some cases) create a problem when the unfused parts of the spine are trying to grow, while the fused part is immobile. I would be asking a LOT of questions of the surgeon to make sure this is the right answer, at the right time for him.

Good luck.

[Yliander]

I am 23 years post surgery in June this year – I had a full thoracic fusion (can’t remember the numbers – scar goes from base of my neck to base of my back) done for 60+% curve. I had a Harrington fusion with no compression rod – which means I have a single rod and 3 bits of wire (looks SO dodgy on an x-ray) when was 13 years old.

• No revision surgery required – didn’t even know that sort thing could be needed until I joined this forum after my final clearance.
  
• Hardware still hanging in there – and I've not limited my activity in anyway
  
• No long term pain – I actually was fortunate to have no pain pre surgery and barely any during surgery
  
• There has been a loss of flexibility – couldn’t not be - my entire rib cage is fused – that said I find it has little effect on me –sit ups I find uncomfortable (but I never liked them much anyway) and have difficulty with a few positions in Pilates but that said I’m compete in dance competitions days and haven’t found it limits me – my lower back has become very strong in compensation.

One bit of advice to your son – don’t lean against cold walls – the cold not only gets into your body but into the metal hardware – then your body warms up quicker than the metal – and you get this weird sensation of being able to feel the implants inside you – very funky – not something I’ve chosen to repeat LOL

hope that helps

[WNCmom]

My son was fused at age 13 in November 2008. He had a larger curve and longer fusion than your son will have(T2-L4; rods and screws with a few hooks). No pain before surgery, and less than expected afterwards. Although all children are different, he was taking zero medication for pain 2 weeks post-op and was back in school at 4 weeks post-op.

He is still limited in his activities (no lifting more than 5 lb., no bending more than 45 degrees), and we expect many restrictions to be lifted next week when he goes to his 6-month follow-up. His surgeon told us that even with such a long fusion he has a 15% lifetime chance of a second surgery, and that includes disc problems below the fusion.

Carmell has a point about fusing at 12 years old. I was also concerned. However, it's a fine line to walk. In the two months before his surgery, my son's curve increased nearly 20 degrees to 76 degrees, and more of his spine needed to be fused than originally planned. If I'd had a crystal ball, we likely would have have pushed to have it done sooner.

However, he is now doing very well. He walks a lot--up to 5 miles a day--and feels good. He's anxious to be able to do more. I think your son will have much less concern about flexibility with a shorter fusion.

You're in a great place to get answers, so ask away!

[Jennybear]

I had this surgery at 13 yrs of age in May and I couldnt be happier. I no that I am fused from just below my neck to just above my hips and I am happy to say that I will be one year post op on May 21st!!!! I can already run for 9 minutes without stopping and just had to report that cuz im so happy about it lol. Flexibility has always been a problem for me bacause of tight hamstrings but im slowly getting it back. I have 4 rods and several screws with (my fave) one hook at the top of my fusion. I had a rib hump but now i can barely notice it. My hips were also very uneven and unfortunatly they still are pretty uneven but im very happy with were i am with no pain. I dont remember very much pain throughout the whole experience.

I feel blessed for my successful experience and what a fast 3 yrs this has been with being diagnosed in the summer of 06.
I wish you luck in your journey and hope your son will also have no regrets as i do

[Basketballboy]

Thanks to all of you who have replied. My son's surgery is now May 20th and he is very ready for it, I'm the one who is a wreck with worry that we are doing the right thing. I really appreciate the comments about the post op discomfort not being as bad as I am imagining.
Since the surgery is in several weeks - what home preparations did you have to make. We live in a two story house with his bedroom /main bath upstairs.
What types of clothes were most comfortable? Did anyone lose alot of weight?

[WNCmom]

You're not the only mother who felt like a wreck as her child's spine surgery approached. Waiting can be the worst part.

My son's room (and bathroom) is also on the second floor. He could climb stairs by the time he got home, but I always went behind him in the early days.

The one thing we found most useful was a recliner. He was able to sit in it for long periods, unlike a straight chair at first. The first few showers my husband helped him with, just for safety's sake.

As for clothes, it was sweatpants or comfy flannel pajama bottoms and large t-shirts for weeks. He did lose weight. He is thin anyway--about 103 lb going into surgery, and I bet he lost about 10 lb. He really looked emaciated--he gained ~3 inches with the fusion and was nearly 6 feet coming out. Although he could only eat small meals at first, soon he was needing to eat something about every hour. By the time he got back to school he had regained the weight he'd lost.

The first few days are rough, but you will be surprised how fast he bounces back. Be prepared for post-op swelling--facial, ankles, and genital. It's all normal, and it takes a while to go away.

[Snoopy]

I'm the one who is a wreck with worry that we are doing the right thing.

Since the surgery is in several weeks - what home preparations did you have to make. We live in a two story house with his bedroom /main bath upstairs.
What types of clothes were most comfortable? Did anyone lose alot of weight?

I've learned that the kids handle things much better than we moms do. The waiting/worrying is the worst. Do you have someone waiting with you during surgery? Or at least someone you can call if you decide you can't wait alone?

We too live in a two story house with the main bathroom and bedrooms upstairs. We moved Jamie's bed downstairs so she wouldn't have to waste her energy going up and down the steps. I'd say she slept downstairs for the first week or two post-op. At that point we moved one of her sister's bunk beds into her room and left her bed downstairs even after she returned to school. Jamie could not get comfy on the couch, so when she needed to lie down, she did so in her bed. Other than that we did make any accomodations for her. She was able to do steps (it was a requirement that she walk a flight of steps with p.t. before she could go home) without any problem, but I too walked with her when using the steps. She showered in our shower that has a built in seat for the first few showers. I stayed with her while showering in the beginning because it drains all their energy. After that, she was fine.

Clothing-as soon as her catheter came out, she wore t-shirts and pj pants. We didn't need to change the size of her clothing at all.

Mary Lou

[Pooka1]

Thanks to all of you who have replied. My son's surgery is now May 20th and he is very ready for it, I'm the one who is a wreck with worry that we are doing the right thing.

At 12 yo and a greater than 50* degree, I suspect your surgeon told you that there really was little choice, yes?

I'm beginning to think I had it super easy w.r.t. to worry. You can only worry so much when you don't have a choice. We absolutely did NOT have a choice with my daughter. I would have far more worry had we not pulled the trigger when we did. That went a long way towards easing my worry.

Just like I wasn't too worried being rolled into surgery when almost half my blood volume was pooling in my stomach from a ruptured ectopic and I was feeling like total crap. You can't worry too much when the alternative is certain death.

I really appreciate the comments about the post op discomfort not being as bad as I am imagining.

Even in the cases where kids need the pain meds relatively long like my daughter, it's still just a few weeks. They bounce back so quickly.

Since the surgery is in several weeks - what home preparations did you have to make. We live in a two story house with his bedroom /main bath upstairs.
What types of clothes were most comfortable? Did anyone lose alot of weight?

I think your son will be okay if he has a quiet room. My daughter's bedroom is upstairs but I put her in a first floor bedroom because it has an adjoining private bath and because it was nearer to my bedroom. We put a phone with an intercom function next to the bed.

She wore loose clothing that was easy to put on and take off. She even wore pajamas outside a few times for her walking IIRC.

She did not lose much weight at all despite not eating much for several days. I assume that was some swelling/water weight that fell off in concert with her eating again.

Good luck.

[Qikdraw]

Thanks to all of you who have replied. My son's surgery is now May 20th and he is very ready for it, I'm the one who is a wreck with worry that we are doing the right thing. I really appreciate the comments about the post op discomfort not being as bad as I am imagining.
Since the surgery is in several weeks - what home preparations did you have to make. We live in a two story house with his bedroom /main bath upstairs.
What types of clothes were most comfortable? Did anyone lose alot of weight?

I had my surgery when I was 12, way back in 1983, so hopefully I can give you some help. One thing to note though is that vast advances have been made in surgery since I went through it. Its really amazing!

I would suggest either having him in a first floor room, or moving a bed into a den or family room for him. Going up and down stairs may be uncomfortable.

Do you have extra pillows he can use to lean up against? Put between his knees? This was one thing I had to have after surgery and I've actually never stopped to this day.

Clothes, sweat pants were best. Easy to pull on and off so its easier to go to the bathroom by yourself. Something a 12 year old boy does not want help with.

I don't know if you're going to have to sponge bath him for a bit, but if you know a nurse that is willing to do it for you, that might help. I know I was mortified when my mother did my first sponge bath. I was far less fearful when a friend of the family, who was also a nurse, took over that job. Twelve year old boys are usually pretty sensitive about their bodies. Your boy may not be, but I thought I would mention it.

I lost 30lbs in the hospital, but I was in there for a month, most of it not eating solid foods. I still have a menu card that says 'three cherry popsicles'. I doubt your boy will lose much weight, not these days. As I mentioned lots of things have changed since I went through this.

Hopefully you have a lot of what your boy likes to do laying around. Reading or playing games or something like that.

We all lose some flexibility in a fusing, but all of us manage to adapt. I'm fused from T1-L4 and I adapted pretty well. He'll just find other ways to do the same thing. I still played sports, soccer, baseball, basketball, golf, etc... I stayed away from contact sports like football or hockey though.

Long term pain? I have some, but part of that is from not having PT shown to me after my surgeries to continue on, something that they do now. One thing to ask about is Physical Therapy and what exercises he should keep on doing.

The main thing is that things have changed for the better in terms of surgery and care, and while you worry about your son, he will be ok. As has been said, the wait is very stressful, I know it was for my mother.