Update for any following..

[Mariaa]

Awaiting WC UR authorization for hybrid surgery (fusion L5S1, ADR L4) that would be pending discogram and surgeons review of my BMD results which may not be too pleasing (unchanged except osteoporosis in both femoral necks/head now and moderate risk for fracture)..

My results for the last BMD were much more informative, not just a report summary but listed all lumbar discs results and some were definately much worse than I thought .. tho averaging L3-L5S1 came up with t score of -2.2 (same as 2 years ago)..

An offer came from one of the Veterinarians my husband works for (private client- maintaining computer network for all his clinics) for a loan of $10,000 to be paid back whenever, however I can, no rush at all~ he feels badly for me, has known me a long time~

My husband is now very pro active in my effort to seek best surgical treatment possible.. He now is behind me going to Germany to have surgery with Dr.Bertagnoli, as he feels WC is working against me not with or for me, and he fears the treatment here won't be adequate in terms of the osteopenia in my spine.. and in general.. he is worried I will end up as Melanie was before her surgery with Dr.B (or where she was heading)..

All of you who know anything about me know that I am receiving Lifetime future med benefits thru WC and until recently had fairly good control of use of these benefits but new CA WC laws have changed that use drastically.. am considering settling my benefits tho worry about having continuance of chronic pain issues that will need treatment post op~ (lifetime)...

Like others here I seek the answer to resolve, but fear the absolute horror of a similar experience to what I went thru with my failed percutaneous discectomy for 5 years afterwards (2nd spine surgery)..

It's very nice that someone cares and would offer a loan like that...it's really nice to have spousal support after such indifference/univolvement for so long)..

I'm scared. I've become dependant on a system financially, and used to a life with this level of pain...LIke others I want so much to be better, tho not worse~

Hey Mariaa,

Wow,if your thoughts and emotions were cream, I'd be willing to bet you'd be churning butter out your ears right about now!

I can see the scales in your mind already: husband's support (clunk, down it goes), offer of a kind and generous loan (BIG CLUNK, one side now entrenched in the ground)...then the uncertainty about the result and the realization that we can, despite our own and science's best efforts, actually get worse (creaking back up the other way...). Looking about dead even right now, innit???

Mariaa, I've seen and appreciated the calm reason in your posts since I arrived here, and checking out that 'gold member' status, I don't think there's anything I can say that you don't already know, so just REMINDING YOU, lol:

Fear (even terror) is normal. The thoughts will never stop spinning, but they'll slow down over time and things WILL become clearer until you finally get to 'your' decision.

Until they do, empty the Confusion Bucket here as soon as it fills and don't hesitate to follow it up with a chaser of Rant N'RAve whenever needed!

Thinking of you,

Trace

Mariaa,

I just wanted to say I can relate to your situation as far as the osteopenia goes. 2 years ago I had a lumbar t-score of -4.4 (yes, you read right). I was 47 at the time. I would never have been tested, and therefore never even known about it, had Dr. Fenk-Mayer not required that I have the DEXA test when I was communicating with her about possibly going to Germany for a 3-level ADR (L3 - S1). Even Dr. Bertagnoli would not consider ADR augmented with vertebroplasty with that t-score. My endocrinologist put me on Forteo and 2 years later (my last DEXA was in March) my t-score has improved to a -2.2. Amazing, huh? I must say that the improvement can partly be explained by the fact after I had fusion done at L5-S1 a year ago I began weight-bearing again, although limited to one or two hours a day (I had literally been crawling on /my hands and knees.) Also, I was diagnosed with secondary osteoporosis, due to a vitamin D deficiency. Along with the Forteo, my treatment has included 50,000 I.U.'s of vitamin D per week. To this point, I have been continuing with the Forteo hoping that I can actually get under a -1.5 (Dr. Regan's criteria) for a possible 2-level ADR here in the U.S. Unfortunately, though, my insurance is Medicare (from disability) and now I am reading on the forum that the hospital (Cedars Sinai) where Regan does the surgery is not accepting Medicare patients for ADR. And of course, it also looks like the CMS is about to issue a national non-coverage determination for the Charite', including those under 65 on disability. From some posts I've been reading on this forum, the out-of-pocket cost of a 2-level ADR in the U.S. (without insurance coverage) would actually be more than having it done in Germany.

I think your husband makes a good point in terms of going to Germany for the surgery. I say this because I read another post (sorry, can't remember the name) where someone was saying they tested at a -1.5 and Dr. Bertagnoli did the ADR. When they opened him/her up, Dr. B found the vertebrae to be much weaker than the -1.5 would indicate (like "butter", I believe were the words used to describe the bone) and ended up needing to use vertebroplasty anyways. So I'm wondering if for someone like me, who is already starting out with osteoporosis/ostopenia issues, it's too big a risk (even if I could get my t-score to -1.5) to have it done here, where they do not have access to the appropriate bone cement that they do in Germany and therefore cannot do vertebroplasty even if necessary.

[Mariaa]

Trace,
thanks..I think I'll get to rant and rave after next UR non cert that's bound to happen soon enough.. tho maybe WC is doing me a favor. Hard to say!

Stephen,
If my t score had been -2.5 or below Dr.Bae would had ordered use of Forteo and maybe WC would have paid for it tho ?? the way UR is denying things now. Tho as it stands, my treatment remains the same with Actonel, and think I'd do even better tho I cannot take Calcium supplements in any form I've tried yet and tried nearly every kind I know.. just seems to turn my stomach rock hard in pain~ didn't do this until several years ago~

I walk 3 to 4 times a day with the dog and usually up to a half hour each time when my back isn't out. Sure, it's stop and go but still that's pretty good.. overall, I thank my dog for my present t score more than anything else!

Today I hadn't hardly driven down the street and my right foot feels so numb I can hardly tell what I'm doing with it, and as I drive on my leg feels like it doesn't even want to make enough movement to allow my foot to flex on the pedal..

However, got out downtown and went for a nearly 2 hour walk with a friend and his dog, non stop walking and up stairs (spiral~ ouch).. every once in a while I can handle this type of walk like once a week or so and it just amazes me because 2 days prior my back was killing me so badly I could hardly amble down the street~

Oh well, if it ain't one thing it's another~ so what else is new? I'm going ot be longest lasting person on this forum just "hanging out" watching all the people go by~

[sahuaro]

Maria:
This is indeed a very high stakes gamble in which you win a very valuable jackpot or lose big. And as you know, only you can make this decision (although you will have all of us as well as your husband and friends, supporting you). If I can throw in a concern that I would have in your position (and that I do have in my own situation), it would be the bone density issue: there have been instances reported on this board of people's bone density deteriorating over time especially when they cannot exercise and you are saying that your ability to exercise is limited and you cannot take calcium supplements. So, I would be weighing whether this is a limited window of opportunity for you to have ADR and would be asking the surgeons Hucky's question, namely, what happens if bone density further deteriorates after you've had ADR.

And, by the way, my prediction is that I--not you--will be the longest lasting person on this forum.

Barbara

[qb] Trace,
Oh well, if it ain't one thing it's another~ so what else is new? I'm going ot be longest lasting person on this forum just "hanging out" watching all the people go by~ [/qb]

[/QUOTE]And, by the way, my prediction is that I--not you--will be the longest lasting person on this forum. [QUOTE]

Hmmm, looks like we're going to have to bump you both off before you start talking!

Trace

[ans]

Maria,

I'm sorry you're b/w many rocks and hard places.

Can you take the med. that grows bone?

ans

[Mariaa]

ans,
my overall lumbar t score is the same as last time so it appears that Forteo wouldn't be ordered by the spine surgeon, at least not from what he said to me at the last consultation.

Because everything is controlled by WC now, it appears that I would need a seperate consultation just to get him to see that report.. and I can take it back to my current OSS, but am in a holding pattern waiting to see if surgery is denied by surgeon in Santa Monica...

It's a WC mess here.. can't even get ESIs ordered/on the books/authorized (that takes time) until I hear whether surgery was authorized or not.. this sucks!

I'm going to try and see a specialist other than spine to see what my options are if any different than what I'm pursuing now, and if so, would insurance pay~

[Justin]

Maria,

Thanks for the update. The generosity with the loan is amazing and says a lot about how much you are loved. I hope you find a solution to your problems that will not break you financially.

Your time is near.

Justin

[ans]

M: Maybe an opinion from an orthopedic surgeon would carry more weight in terms of authorizing Forteo?

Allan