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lynetteanne
07-14-2008, 11:38 AM
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.

debbei
07-14-2008, 11:54 AM
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. :)

lynetteanne
07-14-2008, 12:03 PM
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!!!

debbei
07-14-2008, 12:51 PM
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.

lynetteanne
07-14-2008, 01:24 PM
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.

Jenlw
07-14-2008, 01:43 PM
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!

ladare
07-14-2008, 01:59 PM
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

txmarinemom
07-14-2008, 02:05 PM
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 (http://www.srs.org/find/).

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

PNUTTRO
07-14-2008, 02:28 PM
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.

txmarinemom
07-14-2008, 02:54 PM
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

JamieR
07-14-2008, 07:40 PM
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.

lynetteanne
07-14-2008, 11:38 PM
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.

lynetteanne
07-15-2008, 12:27 PM
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.

Susie*Bee
07-15-2008, 12:39 PM
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!

debbei
07-15-2008, 12:45 PM
I'm so sorry Lynette, that just stinks. ((Hug))

Qikdraw
07-15-2008, 01:14 PM
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.

Lynette

Can you tell me who your provider is and what your policy is? How long have you been with them too. My wife knows a lot about insurance and got her long term disability provider to actually follow their policy rather than deny her. (They were shocked she actually read her policy and understood what it meant) I can't promise you anything, but my wife can look it up.

Insurance companies deny people, even when they are covered, because they can get away with it. Any fines they eventually get don't come near to how much they have made by denying coverage.

PM me with the info if you like.

*edit* My wife also asked if you had changed insurance carriers, and if you did how long in between did go between coverage. They used to deny on the 'pre-existing' excuse if you changed coverage, but they added a law to add a grace period for you to reenroll with another carrier and not have the 'pre-existing' thing. (if you haven't guessed by now, insurance companies are evil) :p

Brad

ladare
07-15-2008, 03:05 PM
Lynette, your feeling of "the whole thing scares the crap out of me" is a VERY common feelling. That's another reason to not rush into surgery too soon; you need time to process a ton on information and feelings. I felt very alone exploring the whole idea of scoli surgery until I found this forum. I guarantee you will never feel alone as you go through this journey as you will have a world of support here, and so many hints and tips on how to deal with issues. Welcome to the scoli family!

Lisa

lynetteanne
07-15-2008, 07:00 PM
Wow you guys are so wonderful - you brought tears to my eyes just being so comforting with me. I'm not getting much of that understanding or comfort from anyone right now. My mum of course is wonderful and I thank God for her and I ADORE my kids.

I can't thank you enough for your support.

God bless,

Lynette.

debbei
07-15-2008, 09:22 PM
Lynette,

When I first came here a few months ago, I felt as though my whole world was crumbling around me. I didn't know where to go or what to do first. The members here gave me so much good advice on so many of my stupid (at least I thought so) questions. They continue to do so. Don't think anything is to silly to ask. Now that I have my surgery scheduled, I feel much more calm, but this is so much to go through. You have to give yourself time to get used to all of this.

Keep posting, ok?

CurvySAT05
07-15-2008, 09:41 PM
Lynette,
Your local chapter of the Scoliosis Association should be able to provide you with more names of Scoliosis Specialists in your area. The surgeon who did my last surgery has A LOT of experience in scoliosis, but is not yet a member of the SRS because of the fact that they have to do much work on research to remain a member. He might join the SRS at some point, but hasn't yet.
I found out about this surgeon from my local chapter of the Scoliosis Association (I am actually on the board of this chapter) and am really happy that I see him. I would not have found him otherwise.
Like Pam said, It would be best for you to get a second opinion from an Adult Scoliosis Specialist rather than just a spine specialist. While the spine specialist might have a knowledge of fusions and how the spine works, a Scoliosis Specialist has experience of long fusions required with scoliosis, de-rotating and all the other "co-morbidities" resulting from scoliosis.
While scoliosis surgery is hardly ever an emergent situation, it would be best to do it while you are still young (probably within the next 5 years) to get a better correction. If you are not having problems with too much pain, numbness, weakness of the legs, etc. than you are probably alright to wait until your kids are a little older, or when your insurance will cover you.
If you want the name of a surgeon other than Dr. Moreno who is close to you, I might be able to find one for you. Just let me know, its fine to PM me and let me know what area you live in.
Keep calling the insurance company and try to go up the chain of command until you can get something covered. My insurance had me go to multiple surgeons before they authorized my surgeon, but because of persistance my hard work paid off.
Good luck with your insurance company. If possible, get a copy of your recent x-rays to take with you to the second opinion. This way you can save a little bit of money by not having x-rays taken at each new doctors office.

lynetteanne
07-15-2008, 11:05 PM
Thanks Debbe - I will keep posting.

Curvysat05 - thank you so much for your help also, if possible could I please have a contact number for someone in the Dunedin/Clearwater area of Florida? I've already seen Dr. Moreno. Then I will just cancel the appointment with Dr. Piazza on Monday, he's a good spine surgeon, but not a specialist in scoliosis.
Please if possible let me know as soon as you can.

Thanks again.

lynetteanne
07-16-2008, 06:48 AM
Brad - the insurance company is Assurant Health Savings.

A year ago the insurance was changed - I have to follow what my ex does with the health insurance as he pays it for me and my boys. It was then put down as a pre-existing back then, actually I think that was two years ago. Then he just changed the company a couple of months ago again and again I had to sign a rider saying it was pre-existing. So I don't think there's a lot I can do about the insurance situation.

ladare
07-16-2008, 11:20 AM
Lynette, any possibility the pre-existing condition was listed as something vague like "low back pain"? That might be a pre-existing condition insurance companies would balk about. But if it's listed as scoloiosis, which you were likely born with, maybe they would reconsider the pre-existing condition clause. Just brain-storming here.

Lisa

lynetteanne
07-16-2008, 01:55 PM
It was listed as severe scoliosis because I knew that I had that nine years ago. So whenever I've had to change insurance companies I've always told them I have severe scoliosis.

If you have any suggestions as to what I do next or where I would go etc. as I'm clueless right now.

Thanks.

txmarinemom
07-16-2008, 02:37 PM
It was listed as severe scoliosis because I knew that I had that nine years ago. So whenever I've had to change insurance companies I've always told them I have severe scoliosis.

If you have any suggestions as to what I do next or where I would go etc. as I'm clueless right now.

Thanks.

I'd really suggest you consult an attorney who specializes in insurance matters, Lynette. I've personally never seen (although, of course, that doesn't mean it isn't so!) where they can pop you for something like scoliosis *unless you've sought treatment for it* ...

Do you still have a copy of the application paperwork you filled out - and how it was worded where you HAD to tell them? I mean did you just volunteer it, or did you provide more than what the application specifically asked? If so, and you had NOT sought treatment for it, you MAY have a loophole ...

(of course the insurance company would NEVER tell you that ...)

Just brainstorming here. I was diagnosed with scoliosis at 10, but never TECHNICALLY sought treatment for it after I came out of the brace - even though I saw a pain management doctor for 4 years ... and therefore, never had to mention it ...

Regards,
Pam