a moment of freaking out~ need feedback re miss, also large fusion

[LSKOCH5]

Oh my gosh, I'm overwhelmed in a really great way w all of your responses. Thank you so very much. After reading all this I will be calling Shriners Tampa today for an appt. Your input has cleared up a lot for me regarding this. We've been trying heating pad and hot tub, and Stopain spray, but that irritates his skin after a couple uses. Ice helps as well. He's actually home today bc of the pain, which started 3 months ago (way prior to the diagnosis) and has been really bad at times. I guess that's part of the sooner rather than later surgery approach, plus he'll be starting high school in August, plus would be in marching band, which is nothing relative to the fact that if someone said that he would only gain a few inches, not anywhere near his expected height, I would hold off on surgery as long as possible as long as his pain is manageable.

[Pooka1]

Hi.

AIS is not generally associated with pain, especially bad pain like you describe but it could be.

Make sure they rule out assocaited conditons that might cause pain in association with scoliosis.

Maybe others can comment abuot whether pain is more prevalent in association with syrinx or whatever.

[LSKOCH5]

Quote -

Why did he discount MISS? Did he give you any reason?

Sorry for delay - to paraphrase him as to why he doesn't do it - it doesn't hold up as well, that it's not as long lasting, that it was maybe something that was a fad that it's just not done much anymore. I'm still trying to explore, to see if it is an option for my son.

[rohrer01]

I thought I read on another thread that your son has a surgery date? One question you asked in the beginning was about the growth left in your son. Have you discussed the possibility of growth rods with your surgeon? I don't know if they use them in teens or just in the little kids, but it might be worth asking. I'm not even sure where most of the growth takes place in the teen years. I guess that would be something to find out as well. If they grow mostly in the long bones, such as the legs and not so much the spine it wouldn't be something to worry that much over. I'm kind of just rambling off thoughts, as you can probably tell. It's just some ideas of some questions you may or may not want to ask your doctor. Again, all the best to you!

[CAmomof2]

Sorry for delay - to paraphrase him as to why he doesn't do it - it doesn't hold up as well, that it's not as long lasting, that it was maybe something that was a fad that it's just not done much anymore. I'm still trying to explore, to see if it is an option for my son.

Our daughter is having a mini open approach done this month. Hopefully this way holds up well. Yikes!!!! She goes for pre-op this Monday, so I'll have to question it.

[Elisa]

My son was just 14 when he had his spine fused and is 6 months post op now and his recovery has been super easy. Actually, he had two surgeries a month apart and traction in between. He was off all pain meds within three or four weeks and seems pretty much back to normal, started high school in September and hasn't missed a day except for a cold and a few days we took off to travel to Portland for his checkup. I have been ultra conservative with his physical activity though and he's been fine with that as he not the athletic type anyway. The area above and below the fusion will still grow, just not the fused part. He also gained four inches in height when his spine was unravelled and went from 5'7" to 5'11" and on his six month checkup a couple of weeks ago, he measured 6'!!

[Resilience]

sorry to hear about the diagnosis of your son. what a good parent you are to be on this forum searching for the best care for him. you will learn a lot here as we all have.

I agree with the idea to have an opinion from Shriners. We travel cross country to be co-followed at Shriners in PA.

re your son's pain, I'd look into stretching and sleeping positions to see if that may help. I agree that AIS commonly does not cause pain. that said, I can not imagine how the back muscles react and feel when faced with a curve progressing quickly. (my perspective is that of a middle aged adult with scoli and stretching, massage, certain positions help a lot, while other activities lead to more discomfort.) this may or may not apply to a teen but thought i'd post it in case it does help. for me, torso rotation exercises help me stretch the right muscles. i've also gotten a lot of good stretches and day to day advice from the book Curves, Twists and Bends.

Best Wishes to you and your family.

[LSKOCH5]

Second opinion tmrw in Tampa w a surgeon who trained under Dr. Lenke. And Dr. Picetti in Sacramento is going to look over his info to see if he might be a candidate for MISS, as we'd like more info if that's an option. He did a very successful surgery on a colleague's daughter long ago, and techniques must have improved even more over the years since then. Still haven't heard back from Shriners Tampa, but the first two dr's operate in very well rated children's hospitals. Thanks and pray for guidance.

[LynetteG]

Son, age 14, was diagnosed 2 wks ago by primary doc who said 49.4%. Went to Dr Neal at Nemours yesterday who said it's 56% & L2-t3 would be fused. We have an appt w another - Dr Cronen in tampa. One of my colleagues flew his daughter out 10+ yrs ago to Sacramento w Pichetti (?) & had a phenomenal experience w minimally invasive even tho she was 68%. Dr Neil discounted miss for jacob, so 3 major questions - isn't that much of a fusion going to seriously impact his expected 6-8"more of growth, as well as how is that major an area going to impact the rest of his life? Has anyone on here had experience w miss in last few years? Thank you.
I'm going to add another q- we'd ruled out CLEAR bc it didn't seem permanent & there are some questions as to accuracy of measures. If any treatment were to bring down curvature would less fusion take place and would it be permanent, or just delayed? This is such a huge decision for the quality of his life, as well as now as he's been in pain for 3 months.
Just edited, ipjone wrote something totally random near beginning.

Hi Leigh-Ann,

I am replying to your private message. I could never respond to those private messages for some reason, so I've had to reply on here - hope that's okay. Anyway, I know that Dr. Cronen has worked on many children, and I know many people too who have had surgery with him since my own surgery and have done very well. I can't say enough good things about him. He takes a personal interest in each and every one of his patients, which is above and beyond most other doctors. I am a year and a half out, and I still feel fantastic - in fact even able to do plyometrics, which I never thought I'd be able to do after a spinal fusion. I healed quickly after the surgery with him, and all his staff are fantastic too. I highly recommend him to anyone. I wish you the very best of luck with your son.

[LSKOCH5]

Lynette -- Thanks so much for your fast reply. Very reassuring, as I've seen that everyone who's posted on the forum about Dr. Cronen was in the adult category. Actually looking forward to this appt, have heard so much good. Glad you're doing so great. Plyometrics is great for fitness - pretty neat that you're able to do it now.

[LSKOCH5]

CAMomof2 - How did it go? I'm still looking into MIS, I just got the feeling our doc was trained this way and that's just how it is.

rohrer01- First dr said 14 is too old for growth rods, but we'll be asking about that in today's 2nd opinion. I've become more comfortable w the growth issue as I've done so much more research on here & all over the net. Even if he lost a couple inches of height, he's still going to be fine. He's got the rest of his spine as well as his legs for growth.

[CAmomof2]

[QUOTE=LSKOCH5;128943]CAMomof2 - How did it go? I'm still looking into MIS, I just got the feeling our doc was trained this way and that's just how it is.

It went well. She is having a "mini-open" technique done. Her surgery will not be preformed thorascopically as in most MIS I believe. Her's will be like in this article; http://www.spineeducationresources.c...CaseReport.pdf

So, this procedures pros are less muscle trauma and nerve damage, less blood loss, and supposedly a quicker recovery in terms of feeling better (the limitations are the same as traditional posterior fusion). She still will be in significant pain, hopefully just a bit less than the traditional way because all her muscles won't be cut. The cons of the procedure are a longer surgery time. It is still fairly new, but so far it looks good. The surgeon said that if things weren't going according to plan during surgery, then he can always open her up fully and do the traditional way. We think it is a good option for us. Fingers crossed. Will definately be glad when she is "on the other side of surgery". I think I have aged 10 years these past few months!!!!
All the best to your family.

[jrnyc]

i do believe minimally invasive surgery has been around for thoracic spine for
quite a while...
minimally invasive for lumbar spine is relatively new...
i flew out from the east coast to see Dr Anand 2 years ago, to Cedars Sinai Hospital
in LA...he raved about the surgery, said he considered other kinds (open) to be
the "old way"...said he used nothing else...he has a wevbsite showing the surgery
in a video...

my experience and my questions all concerned adult scoli surgery, not pediatric...

i spoke to 2 of his satisfied patients, both between 60-70 years old at that time,
and they were both doing well, very satisfied...
Dr Anand said he only had a couple of patients who developed problems in their
thighs....and those problems were easily fixed...
this was, again, 2 years ago...

NOW...i hear on this forum that Dr Anand has "backed off" somewhat from
believing that minimally invasive for lumbar is for everybody....
i do not know personally of such statements from him, but i have no reason
to doubt those on forum who have heard him say it...
since i saw him for a consult (cash...he didn't take my insurance), i am considering
writing to ask him about the change of opinion he has had....
the surgeon i prefer in Manhattan told me he would do "partial" minimally
invasive surgery for me, T4-sacrum, with pelvic fixation.....i haven't seen him
for over a year, so i do not know if that has changed...
Anne (Admoul) on forum actually had the surgery i need with the same surgeon
and is very pleased with her results...i believe she is 2 years out from her surgery....

i do not know opinions about minimally invasive surgery for kids...but it is true
thoracic MI surgery has been around a lot longer....
and i am really shocked that ANY surgeon would say it might have been a "fad"!!

note...i never heard of anything referred to as "MISS"...
i thought it was some new surgical approach for children!

jess

[ARodsMom]

My son had surgery by Dr. Hanson on Dec 22, 2010. He was 11 yrs old at the time still had lots of growing to do. He's extremely active and involved in many sports. He only had a posterior fusion from T2-L2, and is still able to do all sports except his main love of football. He was back to select ball this fall season and seems to have no limitations there. If anything he can see the ball better when he is batting because he's not all turned the wrong way. He can also look at that 1st base runner better to make sure he doesn't try to steal 2nd, since he can only turn his head the slightest bit to see him it seems to be easier for him now. He has had to relearn how to throw the ball now that he's not throwing with his curve, but that was no big deal. We did look into Shriners, but after getting a 3rd opinion with Dr. Hanson we went with him. He was fantastic! Good & bad thing is that with all the doctor visits we had that year we still have not received one bill from the surgery. We met all our out of pocket expenses it seems.

Good luck to you and your son. My husband was heart broken that our son had to go through it and he was afraid of how it would affect him so I dealt with with appointments, and asking the questions, and this forum helped me a great deal! My son has grown A LOT since his surgery. I think his torso area is smaller compared to the growth of his legs, but it does not look crazy and no one but me seems to notice.

[LSKOCH5]

Thanks for sharing, Angie. Your son was so young to go thru it. It is heartbreaking to know what is going to happen to them, and it felt like the weight of the world was on me during the few months we knew of the problem before surgery in that I always felt, it'd be different if it were for my hubby or me, but the quality of my son's life depends on the decisions I make now. So thankful for the forum & all the people who share their journeys. And thankful for Dr Cronen & the hospital; cannot say enough good. Finally back on the forum - I'll update the thread about "2 weeks away".