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Thread: How many?

  1. #1
    Join Date
    Aug 2009
    Location
    Wisconsin
    Posts
    184

    How many?

    How many of you here need(or want I suppose) surgery, but can't due to insurance or money reasons? I've been dealing with this issue for 5+ years now and it's just sickening. People like myself are suffering only because we were born with this horrible disease we didn't ask for. At this point all I can do is scream.
    Pre-surgery- 80+ thoracic/ 60+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

  2. #2
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163
    Hi Mike,

    Pilar was unable to get her surgery due to lack of insurance, and if you read back through her posts she talks some about it. She eventually found a way to get coverage and had a successful surgery about 1.5-2 years ago with Dr Pashman in Los Angeles.

    I'm really sorry that you're in this situation. There definitely needs to be a Shriner's for adults.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  3. #3
    Join Date
    Mar 2005
    Posts
    32
    Quote Originally Posted by osumike View Post
    How many of you here need(or want I suppose) surgery, but can't due to insurance or money reasons? I've been dealing with this issue for 5+ years now and it's just sickening. People like myself are suffering only because we were born with this horrible disease we didn't ask for. At this point all I can do is scream.
    I have wondered about how it works for people who don't have insurance through an employer (not planning to have surgery myself at this time but not being able to afford down the line it is one of the things that scares me). Is that your situation? If you buy an insurance plan, do they deny surgery because it's a "preexisting condition" or for some other reason?

  4. #4
    Join Date
    Aug 2009
    Location
    Wisconsin
    Posts
    184
    Yes, that's exactly the problem. I'm self employed, and purchase my own insurance. They say I have a max of $200,000 for surgery, but they'll only pay around $6,000 for spinal fusion surgery. It's a joke. I've been thinking about getting a job just for health insurance, but I really don't know how that would work either, having a pre-existing condition.
    Pre-surgery- 80+ thoracic/ 60+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

  5. #5
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163
    Hi Mike,

    I think, in general, that once you are on an employer-sponsered plan you can't be denied coverage for a pre-existing condition. Plus a lot of the health care/insurance laws have changed to make it so insurers can't (legally) deny coverage for pre-existing conditions. But we all know how hard the insurers try to deny anything out of hand, hoping you will just go away and pay it yourself. Do you have the option to purchase from one of the big, national insurers like Blue Cross or Aetna? Maybe a high-deductible plan? Some hospitals will work with you to some degree if you can not afford your portion of the bill, but you may have to be very persistent.

    I wonder if your insurance co will pay more for a long spinal fusion for scoliosis. There are different levels of billing/coverage for spinal fusions. Obviously the common 1-2 level fusion for disc disease is completely different than a 10 or more level fusion for correction of a spinal deformity. I had an 11-level fusion, and I recall seeing the billing papers that described it as "spinal fusion, 7-12 levels." Sadly the poorly-informed people who answer the phones at the insurance co know absolutely nothing about the specifics of coverage for most procedures. I think the only way to get a better idea about possible coverage is to plan surgery and have the surgeon's office submit it for pre-authorization. Only then will someone knowledgeable at the insurance co make a determination about coverage levels.

    A good scoliosis surgeon will have a knowledgeable insurance liason who can help you through the insurance minefield. I guess first you have to try and find the right surgeon (should be several to choose from in NY), then see if they can help you deal with the insurance co. It is so unfair what you have been through and that you are still looking for someone to help you.

    Here are some links to Pilar's posts about insurance:

    http://www.scoliosis.org/forum/showt...ery&highlight=

    http://www.scoliosis.org/forum/showt...ed!&highlight=
    Last edited by leahdragonfly; 01-21-2013 at 01:13 PM.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  6. #6
    Join Date
    Aug 2009
    Location
    Wisconsin
    Posts
    184
    Gayle, I appreciate it, really do. The "big" insurance companies have to have an open enrollment, by law, every year. It is appearing that might be the best option at this point. The premiums will be very high for me, I can't remember right off hand, but the more I think about that the more it seems logical. Of course I'd have the 12 month waiting period. For some reason it seems like I was told that even with the pre-xisting condition waiting period, they'd still put an exclusion on my spine. I'm not positive, but I'll call again today to find out.

    As far as scheduling and then worry about it later, that's what happened in St. Louis. LESS THAN twelve hours before my surgery was scheduled to take place, I got a call saying the surgeon is cancelling on me. I was told that "he dropped the ball", "he couldn't come up with a surgical plan for me", and "he should've cancelled this long ago." They never said it, but I have to think that at the 11th hour they decided my insurance wasn't paying enough for surgery. Just my opinion.

    In NYC, the insurance person for the surgeon I saw seemed to me that she made decisions too quickly. She told me that 8 or 9 out of 10 people don't get surgery from them due to insurance reasons. She kept saying that the surgeon isn't going to work for free, etc. All this after I paid her $450 in CASH just to see the surgeon.

    The ironic part of all this is that my brother in law's mom works for a group of hospitals in my area in the billing dept, director of some program that basically writes off hospital bills. The problem with that is my scoliosis is more that these surgeons here think they can handle. One of them just flat out told me that I need to be in St. Louis or NYC.

    Lastly, I got in touch with a patient advocacy group in California that intervenes with insurance companies that deny coverage for scoliosis surgery. They did some checking and finally let me know they can't help because technically, my "insurance" company will pay, even if it only $6,000. Seems like everyone has a way around everything.

    Oh ya, two months ago I was working, I install satellite tv, and I fell off my ladder. Broke my arm, had 4 pins put in, and just got the cast off and pins taken out last Thursday. So that's been tough, not working at all for two months. I attached a pic of the pins in my arm...Resampled952012-12-139511-15-5495242-1-1.jpg

    I remember reading about pilar a couple years ago, and thinking I'm in the same position. Thanks for the links, I'll look thru them again.

    Have a great day!
    Pre-surgery- 80+ thoracic/ 60+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

  7. #7
    Join Date
    Mar 2005
    Posts
    32
    Quote Originally Posted by osumike View Post
    As far as scheduling and then worry about it later, that's what happened in St. Louis. LESS THAN twelve hours before my surgery was scheduled to take place, I got a call saying the surgeon is cancelling on me. I was told that "he dropped the ball", "he couldn't come up with a surgical plan for me", and "he should've cancelled this long ago." They never said it, but I have to think that at the 11th hour they decided my insurance wasn't paying enough for surgery. Just my opinion.

    In NYC, the insurance person for the surgeon I saw seemed to me that she made decisions too quickly. She told me that 8 or 9 out of 10 people don't get surgery from them due to insurance reasons. She kept saying that the surgeon isn't going to work for free, etc. All this after I paid her $450 in CASH just to see the surgeon.
    Unbelievable! What an emotional roller coaster it must have been, having your surgery cancelled like that. "Dropped the ball" - did he really use those words? It seems utterly unethical of the surgeon to do that, having known your situation... I really hope you find a solution, I can't begin to imagine how frustrated you must be, dealing with the worst aspects of our health system. Is your case, in terms of scoliosis, particularly difficult? I know it's not a great solution, but have you thought of having the surgery in another country, where it's cheaper?

    I too went to see a surgeon recently which I paid out of pocket for in the hospital, and it also was over 400 dollars. Then the hospital also billed me separately by mail for the surgeon's assistant who came just before him for five minutes to test how strong my legs were. Another 150 dollars! And I didn't even know who she was when she came in...

  8. #8
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    I've been following your story for a long time Mike, and although I have no answers for you, I just wanted to say your frustration is justified and, yes, it's unfair, but I just hope you can find a way to have the necessary surgery done. I hope Pilar can give you some ideas. Good luck and let us know how you go.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  9. #9
    Join Date
    Jan 2013
    Posts
    13
    That is just awful. However, the Obama Care reform may help you in 2014. Depending on which State you live in you should possibly (depending on your salary) be qualified for the health exchanges that will be in place. I don't have a link but do know you may look under the state your from for more info. I know here in CT things are rolling along for that to happen for those who are struggling and need insurance. I hope the best for you and that your arm heals well.

    Best wishes!

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