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Thread: Don't know what to do

  1. #1
    Join Date
    Jul 2008
    Posts
    13

    Don't know what to do

    Hi,

    This is my first post and I'm so grateful that this message board exists. My name is Lynette and I'm 42 years old. Nine years ago I just found out for the first time that I had scoliosis, my lumbar curve was 61 degrees.

    I just went to a top surgeon in my area to have my back checked out again, as I've noticed more pain when I'm standing stationary. He told me after my x-rays that I had a lower lumbar curve of 76 degrees and an upper thoracic compensatory curve of 37 degrees. I trust this doctor to be good because he has a very good reputation, also I spoke to the head of one of the local scoliosis foundations, and she had major surgery done by him, and also she knows many other people who have had surgery with him.

    However, I don't suffer pain most of the time. He told me that I need to have surgery fairly soon because if I leave it, he said that the pain will become very bad, and my curve will continue to progress and he may not be able to help correct the curve as much as he could now. He said he would only operate on the lower lumbar and bring it to a 35 degree curve which he said would straighten me out quite a lot. The risk is 20 to 40% that I may in the future find my upper back leaning forward, which would then mean I'd have to have a second surgery to correct that.

    I'm terrified. I'm a single mom with two young boys aged 5 and 7. They rely on me totally however I do have a wonderful mother who sees us every day. Also my insurance won't cover me for this surgery due to pre-existing condition. My doctor seems to think that they should pay for the hospital part, but the actual surgery and instrumentation would be on me.

    So not only worried about how to pay - but mostly the actual surgery. Right now I'm very flexible, I practice yoga every day. And if I have surgery I'll be operated from the sacrum/pelvis to T9. This would then leave me very inflexible afterward especially with yoga etc.

    I wish there was another way and wondered what all of you think with your experience as to whether you think surgery is inevitable for me or not? Whether I could delay surgery for a few years because my children hate the idea of staying with their father for a whole week during the first week of recovery at home.

    I hate scoliosis and wish to God I didn't have it - but as all of you understand, this is the way it is.

    Any suggestions?

    I look forward to hearing from you.

    Lynette.

  2. #2
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Hi Lynette,

    Welcome, this place has helped me out so much in so many ways.

    It must have been a shock to you 9 years ago. I know how hard it was for me finding out how bad I got, but I knew I had scoliosis since I was 14. Your doctor gives the same advice I heard, if I can I should have this surgery within the next 5 years. I have it scheduled for October.

    As far as the insurance thing, I'm a little confused. YOu were diagnosed 9 years ago, and they won't cover the surgery? If that were the case for most of us, none of us would be covered. As I said, I was diagnosed at 14. Did you call your insurance to confirm, and/or file a dispute? Not sure if you can file a dispute for something that hasn't yet happened (the surgery), but you can definitely argue your point. There are state agencies that help consumer over insurance company problems like this. What state are you in? Is your insurance through your employer? Maybe there is some way you can change your insurance within the next year or so and then plan the surgery for after that?

    I wish I could be of more help to you. Let us know what you find out. And I'm sorry if I sound like a rambling idiot.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  3. #3
    Join Date
    Jul 2008
    Posts
    13
    Hi Debbie,

    Thanks for your reply.

    I've changed insurance companies several times since I was first diagnosed. It was about four years ago when my ex had me under his company insurance, then he no longer had that company and had to change insurance companies, that is when I was told I couldn't get covered with pre-existing scoliosis.

    Do you think I need to have this surgery? The doc' didn't even say five years to me, he said "August is a good time for me if you want to consider that." Aaaggghhhh!!!

  4. #4
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    76 degrees is a pretty large curve. Progression of 15 degrees in 9 years is pretty significant. That's about how much I've progressed, about 1.5 degrees per year. You have to think what will happen if you continue to progress at this rate. Have you had a second opinion? Even if you decide to go with this guy, I think it's important to get another opinion. For something this big, you want to be absolutely sure.

    Keep us posted.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  5. #5
    Join Date
    Jul 2008
    Posts
    13
    Yes actually I'm going to another doctor who doesn't specialize in scoliosis, but he operated on my brother spine and fused part of his spine for other reasons, and my brother is doing great. So I see him on Monday morning.

    Thanks for the advice.

  6. #6
    Join Date
    Aug 2005
    Location
    Nebraska
    Posts
    44
    I'm not an insurance pro, but that doesn't seem right to me at all!

    I agree with debbei, you have a very significant curve so surgery sounds like a good option.

    It's always good to get another opinion.

    Let us know how it goes!

  7. #7
    Join Date
    May 2008
    Location
    Portland, OR
    Posts
    42
    Hi Lynette,

    The thing about scoliosis is not really the degree of curve, but the problems caused by the curve. If you are having trouble standing for any length of time, that is certainly a sympton worth watching. The pain is most likely because there is pressure on the nerve(s). If the nerves get permanently damaged, they can not be fixed. That's where the question of "when to have surgery" comes in to play. I'm not saying you have to have surgery, only you and your doc can make that decision. But it is important to not postpone it unnecessarily.

    I just had surgery 11 days ago, and my story is a good example of not postponing... My fusion is T10 - L5, all of my symptoms in the lumbar area, with incredible standing, walking and bending pain. In my case, my doc was going to fuse without derotation/straightening (d/s) of the spine, from his point of view that he doesn't d/s unless absolutely necessary because doing the d/s can potentially cause some nerve damage. He thought the d/s would not be needed in my case based on my MRI. But once he got in my back, he noticed how very unstable one of my vertebra was, and that made him change is mind and do the d/s. After suregery he told me that the instability of the one vertebra would likely have caused permanent nerve damamge if I had waited much longer. It was really hard for me to make the decision to have the surgery, but based on what he found during surgery, I am SO greatful to have had the surgery, and to not have put it off for a year as I was originally planning. I would rather live with limited flexibility, than to have permanent nerve damage that could have really impacted my ability to stand and walk, for life.

    As far as an August surgery date goes, I would ask him why he thinks is needs to be done so quickly, and to also get a 2nd or 3rd opinion. I would caution you to give yourself plenty of time to prepare your life for this kind of surgery because the recovery period is quite long, and your activity quite limited for a long time. You would need lots of help with your children since you will be restricted from bending, lifting, and twisting for a long time (two months at least, and then gradually building from there). I doubt you would be able to run your household after one week, your job will be to rest and do the required PT and walking). You will need someone there almost all of the time as long as you have restrictions and children at home. I'm not trying to sound discouraging, but just want you to be really careful going into this if you have to. As i mentioned, I just had surgery 11 days ago, and can putter around the house for an hour or so twice a day. Puttering in this case is getting a light, pre-cooked meal, picking up the kitchen counter a bit, neatining up my room, etc. VERY light work. No bending, no lifting.


    Sorry for the long message but I hope this gives you a little more insight. Keep us posted on your journey of making the decision.

    Lisa
    Lisa, Portland, OR
    49 y.o.
    46 degree curve L1-L5, mild T curve
    L5-S1 healthy, thankfully
    Lumbar stenosis, osteoarthritis, lumbosacral sponsylosis
    T11-L5 fusion 7/3/08

  8. #8
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Quote Originally Posted by lynetteanne
    Yes actually I'm going to another doctor who doesn't specialize in scoliosis, but he operated on my brother spine and fused part of his spine for other reasons, and my brother is doing great. So I see him on Monday morning.
    Lynette,

    My advice is reconsider a second opinion from a scoliosis expert. A regular spine surgeon is not a reliable source for this. Locate an SRS surgeon here.

    Also, I hate to tell you this, but your expectation your kids will need to stay with somone (Dad or whomever) "a whole week during the first week of recovery at home" is not realistic.

    I recovered solo from a posterior only fusion (with NO kids still at home - they're grown, and I can totally relate to the single mom thing ... I did it for 18 years) and you are going to be down for more than a week. You'll be in the *hospital* almost a week if they go posterior only, and more like 10-15 days if they elect an anterior/posterior approach.

    As far as insurance, you really need to have someone examine your plan provisions: I've seen where they'll treat a certain condition as pre-existing if you've received treatment for it in the last _______ years, or not cover it for ________ (insert amount of time), but never where they'll NEVER, *ever* cover it. As Debbei said, *none* of us diagnosed as kids would be eligible for coverage if that were the case. If you haven't sought treatment in 9 years for it (until recently ... did I understand that correctly?), it shouldn't *matter* that you have it.

    Check the details of your plan and maybe you'll find if you wait a year or two it *will* be covered. A quandry when you factor your age/rate of progression, but balanced by the fact few - if any - people I know can afford this surgery (even surgical cost and hardware) out of pocket.

    Hopefully you can find a workaround.

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  9. #9
    Join Date
    Jan 2006
    Location
    Houston TX
    Posts
    288

    Insurance

    It depends on the insurance company and what type of plan that you have. If this is a group policy, then you may have to wait until you have one year of premiums paid before they will cover you. If this is a personal policy, then you may not be covered at all.

  10. #10
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Quote Originally Posted by PNUTTRO
    It depends on the insurance company and what type of plan that you have. If this is a group policy, then you may have to wait until you have one year of premiums paid before they will cover you. If this is a personal policy, then you may not be covered at all.
    True enough, P, and I don't have to tell you Texas is one of the worst places to have private insurance (if you can even afford it) in the U.S.

    I'd still encourage you to check your plan provisions, Lynette, and maybe even arrange to switch jobs and/or plans if you truly aren't going to be covered EVER. It may be that you have to get a job that provides group plan even if it means you have to wait. From what you've indicated, you're going to need surgery at *some* point, and now is the time to prepare for the financial details.

    Just me, but the doctor telling you you have ONE month to have surgery is a bit extreme ... no, I don't know all the circumstances, but with a little time, it seems you could position yourself much better than where you are.

    I actually scheduled my surgery around a yearly plan enrollment at work for 2008: I switched from the regular PPO/Flex Spending to the HDMP (high deductible plan) and HSA (Health Savings Acct vs. a 125). I had the surgery in early February and met both my in-network and out-of-network deductibles (and most were covered by the HSA) so everything else in 2008 is covered at 100%. Yeah, I have to pay full price for meds up front, but I get it back 100% in about 10 days.

    All I'm saying is be sure to check your plan and all your options before you throw in the towel - even if it may take a year or two to obtain the coverage you need.

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  11. #11
    Join Date
    Feb 2008
    Location
    Texas
    Posts
    96
    I agree with Pam. If you are going to have a second opinion, it should definantly be with someone who specialized in scoliosis. My first doctor was a spine surgeon, a very good and respectable one and the whole time I was seeing him, he was x-raying me wrong and my curve was over 20 degrees larger than what I thought. I don't really blame him, scoliosis is just not his specialty.

    As far as insurance, I am not sure I can help. I got lucky and my husbands insurance does not have pre-existing so they covered my surgery completely.

    Pam is also right about you needing help with your kids longer than just a week. I have a little girl who will be 5 in October. I was in the hospital for a week and it was not until the fourth week that I could stay alone at the house with her. I constantly had someone with me incase she needed something I couldn't do for her. I am over three months post op and I still have not been released to pick her up.

    All that said, I really feel for you. I hope you are able to find a solution to your insurance situation. My doctor did not rush me into surgery but we did do it fairly quickly just because I was ready to get it over with. I am sure you should be able to have some time to get things in order. Good luck and keep us posted.
    Jamie Age 29
    Mother to a 6 year old daughter & an 11 month old baby boy.

    2000 Curves - 28/40/32
    2008 Curves - 39/63/44
    Surgery Date - 3/25/08
    T4 - L1

    63 degrees corrected to 15 degrees !

  12. #12
    Join Date
    Jul 2008
    Posts
    13
    Thank you all so much for your advice.

    I looked up the specialists that Pam so kindly put on here for me. There is no one that close to where I live except the doctor I just saw last Monday. And I'm paying $400 each time for the consultations. Anyway the insurance plan is paid for me and my sons by my ex - it is Assurant Health Savings. My ex gave me a phone number to call and check tomorrow with the benefits department to see as to where I stand with coverage. I seem to remember that they would re-assess coverage for my back in two years time - but I have a feeling that two years may be too long to wait - I'll have to check first anyway and then if that's the case, I'll meet with Dr. Moreno again and find out what he thinks.

    The kids were only going to stay with their dad for the first week of my being home, my mother said she would move in with me and help me and the kids for the first four or so weeks. She is 75 and very fit and active, but I wonder will she be strong enough to help me when I get home?

    The whole thing scares the crap out of me. I'm so independent and the thought of being out of action and having to rely on people for such a long period of time totally and utterly freaks me out. I know I need to look at the big picture but...

    Anyway - I admire all of you on here so much, you all seem so strong mentally and have come through your surgeries with such great outlooks - that is fabulous.

    Thanks again.

    Lynette.

  13. #13
    Join Date
    Jul 2008
    Posts
    13
    Well I found out today that my insurance will cover me for nothing and that they will review it again in 2010.

    So don't really know what to do now. I guess I'll still go get a second opinion and see what this other doctor has to say.

  14. #14
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978
    Did they explain why? It seems like a real catch 22-- like when you are first diagnosed, you don't need surgery-- so years later when it's time for it, most people have moved on to different health care coverage. I wonder if you can request a review of your case or anything to make sure you didn't just have someone who isn't very knowledgeable look at your case... I'm so sorry you are having this insurance problem. The cost of the surgery is really prohibitive for most people...

    Let us know what happens when you see this other specialist.

    (Adding on): Actually, if this other doctor isn't a scoliosis specialist, you might as well save your money. You really need to see a specialist-- don't trust your spine to someone else, even if they have an excellent reputation with "normal" backs-- we are different creatures entirely!
    Last edited by Susie*Bee; 07-15-2008 at 12:46 PM.
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  15. #15
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    I'm so sorry Lynette, that just stinks. ((Hug))
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

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