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

[LSKOCH5]

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.

[rohrer01]

There are some other parents on here that can be really helpful to you. In particular I'm thinking of Elisa, if you can contact her or read and comment on her thread. Have you considered contacting Shriners? I've heard wonderful experiences on here about them. I hope you find the answers you are seeking. Best to your son and your whole family.

[LindaRacine]

It's George Picetti.

[Lorraine 1966]

All I can tell you is about my experience and I also agree with rohrer01. I also had a large fusion as you can see many years ago when they had started fusing vertebrae and using harrington rods. I know they don't use the rods any more but I truly had a very bad curvature and the fusion honestly has not caused me any problems at all in my life. Now only because of the rods and my fusion went to L3 I have been in a bit of pain as explained in my signature but please remember It has been many years since I was operated on. When I had the operation I grew 2 and a half inches, I was 15 and continued to grow to what would have been my normal height 5 foot 3 inches. I have lived a normal life, moved house myself, worked for 25 years gave birth to two sons, and all the normal things one does. I wish you all the best and I understand it is a shock when you hear it all. If I had my time over again I would not hesitate to have the operation and often bless my mum for having the vision and foresight to go ahead with it.


All the best
Lorraine

[LSKOCH5]

Thank you all very much. I'll try Elisa. Am I wrong on Shriners, meaning I felt it was so important to try to find the best surgeon& work from there. Dr Cronen in Tampa does surgery w Shriners as well, but if I went through Shriners don't they just assign a surgeon without input from us? Or is the whole Shriners experience just that much more conducive to his best shot?

[LSKOCH5]

Lorraine, thank you so much for sharing your experience w me. Esp about glad of the surgery as well as the growth. Sorry you've been in pain for so long and I hate to ask, is that just due to the Harrington rods, or is that also bc the fusion went down into the lumbar, or that it was such a long fusion?

[Pooka1]

Hi. I am sorry to hear about your son's diagnosis.

Per our surgeon, L2 as the distal end is not associated with need for extension. You have to go lower.

That said, expert opinion may differ so you should believe nothing about technical surgical minutia that you read on this group (with the possible exception of Linda, the moderator who works in a surgical group coordinating research I think). She would have a chance of knowing the range of opinion on any matter whereas most folks here can only hope to accurately report one opinion - that of their surgeon.

Ask your surgeon (or more than one surgeon) and ask them what evidence it is based on for any question that concerns you.

Good luck.

[Pooka1]

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.

Good call. They have been around several years and have no evidence of efficacy to show for it. They are chiropractors and therefore not trained to deal with scoliosis. Only board certified orthopedic surgeons are.

[leahdragonfly]

[QUOTE=LSKOCH5;128371Am I wrong on Shriners, meaning I felt it was so important to try to find the best surgeon& work from there. Dr Cronen in Tampa does surgery w Shriners as well, but if I went through Shriners don't they just assign a surgeon without input from us? Or is the whole Shriners experience just that much more conducive to his best shot?[/QUOTE]

Hi there,

I am sorry to hear of your son's scoliosis and that he needs surgery. I know what a shock that all comes as.

I want to encourage you to check out Shriner's--I think you may have the wrong impression of Shriner's, they do not provide second-rate charity care. They provide absolutely top-notch, state of the art care to all, regardless of a family's ability to pay. My daughter was under the care of Shriner's Philadelphia for a year or so when she was diagnosed at age 6, then we transferred care to Shriner's St Louis to get an earlier surgery date. (She had a smaller curve and had vertebral stapling, so a different situation from your son's). She had surgery in St Louis and I can't say enough about the high level of skill of the surgeon and the entire staff.

I know of a highly-skilled and very much beloved surgeon who moved from Shriner's Philly to Florida. I believe he is associated with Shriner's Tampa, but I'm not sure. Here is the contact info I have: Dr. JahanGir Asghar Tampa Shriners Hospital 12502 USF Pine Dr.Tampa, FL 33612-9411 (813) 972-2250. I also think he works in Miami: 3100 SW 62nd Ave, Miami, FL 33155 (305) 662-8366

I know his curve is large, but scoliosis surgery is rarely an emergency, and you have time to seek some other opinions and find the right surgeon for your son and your family.

Good luck, and please ask any questions you may have.

[Elisa]

I think Lokansdad would actually know more about how Shriners work regarding 'assignment of surgeon' as he did go through his own insurance. We are from Canada and Shriners do not take our insurance and my son's care was 100% charity and we were assigned Dr. Krajbich as his surgeon. We were told that we were assigned Dr. Krajbich b/c he dealt with the more severe cases. My son was in BAD shape. Gayle (leahdragonfly) and Maria, another member here, have been dealing with Shriners for years now so they are a lot more familiar with how everything works with them. My personal experience with them was nothing short of amazing and I was a little skeptical at first and really didn't know what to expect but I had no other choice b/c my son was deteriorating daily and there was no one here even bothering to look at him. On our first visit to Shriners in Portland, Oregon, I knew we were in the right place and had hit the jackpot! These people here are the ones that pointed me in the right direction, I trusted them and they were absolutely right. I am/always will be extremely grateful for their help.

[leahdragonfly]

Aw shucks, Elisa! I am so thrilled that my experiences with Leah were able to help you and Elias. You two are the poster children for what Shriner's can do. Shriners is an amazing and unique organization...they did not accept any insurance money at all until about a year ago, when the economic downturn forced them to accept insurance payments. All medical care they provide is first rate, and they give no preference whatsoever to whether or not a family can pay. You get the best surgeon who is best suited to care for your child, period.

People may not realize, but Shriners has a large endowment fund that is used to pay for all the medical care they provide. One of the reasons they did not accept insurance money was so the physicians could determine what was the best, most appropriate care for each child without interference from insurance companies and bureaucrats. Although they now bill insurance companies if the child is covered, they do not give a different level of treatment based on the child's insurance status. I know it is pretty amazing, and hard to believe, but it is true. The Shriners folks do what they do because they all truly want to help children.

[LokanasDad]

Shriners does assign a surgeon to you, but believe me, their doctors are incredible. My son is actually mad that they did not give him a big enough scar (seriously, it looks like a little line right on the spine.) The way shriners works is they will have you come in for an evaluation. They take x rays, talk with you about options (for us we knew he would have to have surgery too so they were trying to break the news and we shocked them because we told them that we were resigned to the surgery and wanted to know when they could schedule. Basically, after the evaluation they will choose the doctor that they feel would be best in this case. The plus side for you with Shriners tampa is that it is only a little over 4 hrs away from St. Aug/ Jax. Shriners care is awesome. The docs are there because they care about the kids, not because of a paycheck.

I would think, if they are expecting 6-8 inch still of growth that they will want to try waiting a little or they will do an anterior as well as posterior. It sounds like Jacob and Logan have pretty similar curves as that is where they fused Logan. That was back in August and he is back at school doing what he loves with minimal change to his life. The pain will get worse without the surgery, but there are small things that will help. Logan stopped doing dishes because standing for that long, reaching down to reach the dishes, but stress on his back. The biggest neg of the surgery is that he is limited in what he can pick up for this first year. But he is learning what he can and cannot do. And it gets better every day.

[Elisa]

Aw shucks, Elisa! I am so thrilled that my experiences with Leah were able to help you and Elias. You two are the poster children for what Shriner's can do. Shriners is an amazing and unique organization...they did not accept any insurance money at all until about a year ago, when the economic downturn forced them to accept insurance payments. All medical care they provide is first rate, and they give no preference whatsoever to whether or not a family can pay. You get the best surgeon who is best suited to care for your child, period.

People may not realize, but Shriners has a large endowment fund that is used to pay for all the medical care they provide. One of the reasons they did not accept insurance money was so the physicians could determine what was the best, most appropriate care for each child without interference from insurance companies and bureaucrats. Although they now bill insurance companies if the child is covered, they do not give a different level of treatment based on the child's insurance status. I know it is pretty amazing, and hard to believe, but it is true. The Shriners folks do what they do because they all truly want to help children.

That explains everything perfectly Gayle. I knew you'd be able to put it all in a nutshell. :-)

And yes, you, Maria, Pooka, Ed and others here definitely helped a LOT! I do not know where Elias would be right now without the help from you all and that thought terrifies me so I won't allow myself to go there.

[Elisa]

I should also add that when I asked my son's surgeon how long his fusion would be, he told me that it would probably go from T2-L2 but when he actually had the fusion he decided that T4-L2 was what was needed, so things can change once the surgeon actually sees the spine with his own eyes. Keep us posted with how you are doing with things.

As for your son's pain, you could try have him use an electric heating pad, muscle rub like A535 and there's also shelf product that has both a pain reliever/muscle relaxer that you can purchase at the drug store. It says it might cause drowsiness but it didn't make my son sleepy at all but he found it helped with his pain. If your son does end up having surgery, you have to have him stop all pain meds that thin the blood two weeks before the surgery.

[CAmomof2]

Quote - "Dr Neil discounted miss for jacob"....

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