Newbie-Looking for multilevel Lumbar ADR information

[Grumpy]

Hi
I have a history of spine problems but my latest is the need for a 3 level (L3-4-5) due to herniated disks, DDD giving me pain 24/7. Since I've been fused in my neck 3 levels, with plates in front, rods in the back, I'm not crazy about fusion.

I know that multi level ADR is not yet approved in the states. In Germany, the cost for my surgery is $49,500. I would like to get on a trial and have contacted my OSS about the possibility.

I have read that others have already been on a trial for multi levels and I hope they see my post and respond. I would like to know what companies have held these trials, if they're already closed, is there any new ones looking for people. I have searched the internet but it's difficult to find this info since they want the doctor to do it. Right now I'm doing "the doctor dance" and we all know the steps to that one! I have an appointment to talk to a doc who does IDET although my other doc feels this is a waste of time and money. Frankly, I think my tears are too big anyway and he will see this.

I have DDD from T10 down so my OSS isn't crazy about a fusion either knowing I'll domino-last year I was a two level, this year a three with no intervention so who knows what next year will bring. I can't sleep, and I have had to become a couch potato against my wishes. Although I have had back pain for over 20 years, it has accellerated greatly since October and been constant, getting worse in steps. Had MRI's to confirm .

I would love to hear from people IN TRIALS, have been in trials, etc.

Thanks!
Grumpy

[Terry]

WOW! No wonder you're Grumpy. I am unaware of any clinical trials though the best person to ask is Harrison who runs the forum. You can look him up here and PM him for any answers.

I went to Germany for 4 level disc replacement and am doing pretty well. I hope you find something that will work for you as this sounds like such a steady progression for you.

Hang in there. Let us know how we can help further.

Terry Newton

[steelskyway]

Hey Grumpy!
I was poking around several spine research schools and I didn't see any clinicals for Lumbar Multilevel. I did see some posts on hybrid types 4-5 5-1 on laspineinstitute.com also I saw a post for a place in Texas re: hybrids and flexcore can't seem to locate them I will keep looking. Definately want to change you to a different one of the seven dwarfs. I am hoping for Happy.

[Toebin]

Hi Grumpy,

Welcome to the community !!

I am part of the mobi-C ADR clinical trials but I sort of fell into it through the back door and I was randomized as a "control" patient so I have a fusion. It's a cervical disk clinical trial anyways and has since been closed.

I agree that Harrison would probably be your best bet on where to find ongoing trials and he also keeps an updated list of trials on the boards here under the Cutting Edge forum http://adrsupport.org/eve/forums/a/t...1/m/5041091122

As Steelskyway mentioned there may be some trials available out of the laspineinstitute.com , my surgeon works out of there and has a private practice as well.

If you decide on a clinical trial there are MANY questions you will need to ask prior to agreeing to becoming a participant. I do not regret my decision one bit, however there were things I didn't know to ask that could have made my experience much better. We live and learn.

A trial is very good about explaining what the study will do, what it will provide, and everything about the ADR they are testing. But pay particular attention to if it is randomized, how that is done, what percentage of patients "get" the device AND what the procedure is in "detail" for the control patients that don't get the device.

As I said I do not regret my decision at all about joining my clinical trial OR the fact that I was randomized as a control. However there were limitations in the control fusion surgery that I was ignorant on that could have affected my outcome. I got/am getting the BEST possible care, don't get me wrong. I love my Spine Doc and all the care he has given me. But there were some minor things I didn't ask out of ignorance.

Feel free to PM me if I can answer any questions and I wish you all the best in your search !!!!!

[Lisibug]

I believe Rick Delamarter, M.D., out of St. John's Hospital in Santa Monica (The Spine Institute) does multi level lumbar ADRs - pretty sure of it, in fact. I contacted his research department regarding my multi level cervical ADR requirement and they were willing to consider me for clinical trials, even with a previous fusion at one additional level. I ended up going to GY because insurance wasn't going to pay for either - and it was much cheaper to have it done by Bertagnoli. However, I know Dr. Delamarter's office has a department that deals wholly with working with patients' insurance companies. If your insurance would cover the one level ADR, which would include meds, hospital fees, anesthesiology fees and partial surgeon's fees, seems to me you might just have to pay for the two additional discs and extra surgeon's fees. This could be a cheaper option than going to GY. I personally know two people who have had very successful surgeries by him (one a three level fusion and the other a two level ADR - both 100% pain free now) and I haven't heard of a bad report on any of these forums from anyone who's had surgery by him. The research department wanted me to send in my MRI and any additional tests and they were going to look at it and let me know - so I'm sure they'd do the same for you and that in itself wouldn't cost anything, other than the cost of duplicating your tests and postage.

Sure wish you every success, wherever you end up having surgery - and that you feel much better.

[Grumpy]

THANK YOU so much for all the information! On Monday, I will call Dr. Rick Delamarter's
office for the future. The new elevil at night is helping me sleep thru the nerve pain (I can get at least 4-5 hours at a time which is a miracle) , which makes the pain pills work better during the day so is buying me some time. But I want to make sure I have all my ducks in a row cause I know how fast this can change. I am also seeing my OSS again soon, and the doc who does the IDET.

I don't now how anyone can survive the long plane ride to Germany with their back hurting so much.....I can't even stand a 3 hour flight! Maybe the seats are better on international flights-the Delta planes, which we fly the seats are AWFUL.

[CindyLou]

Grumpy, the 8 hour flight (not to mention just the flight it might take if you have to fly first to say, New York,to get on the international flight) to Germany is no picnic, that's for sure. A number of folks have opted to bite the bullet and travel either business or first class, which makes all the difference in the world, when you're wracked in pain. My husband's company did one thing right by generously purchasing my roundtrip first class ticket. I hope I was grateful enough...I confess, I was still brewing over their denial to cover my surgery. In the end, they offered to pay half, which after taxes taken out (they issued it like a paycheck) it ended up being about 1/3 of all of our out of pocket expenses, but hey, "don't look a gift horse in the mouth," as they say, eh?
Hang in there, and we are here for you.

[Grumpy]

Hi Cindylou,
That was really nice of your husbands company to do that. In their defense though, they legally have to issue any money in that way according to IRS laws. They had no choice. Here in Maine, which is an anti-business state-not only do we have to pay our 20% co pay on everything health related, but the STATE OF MAINE then makes us PAY AN ADDITIONAL TAX (6%?) ON THE TOTAL OF THE PROCEDURE to cover those who wish to not carry any health insurance, which comes immediately in a bill, even before you are healed.

Not only that, but the STATE is so involved in pain treatment that it's almost IMPOSSIBLE to get any. To anyone who thinks that Federal Health Insurance is a good thing, come to Maine-the state CALLS THE SHOTS not the doctor. It's eye opening, and getting worse every year. It is so bad, that I might not be able to return to my home next spring depending on where I'm at with my back. Or, I will have to travel down to Florida every other month, which is no picnic as you know, traveling with back issues.