Multi level ADR in women

tisury · #1 (**permalink**) 03-10-2007, 05:52 PM

Question for Mark and anyone else who has info on multi level procedures. I have been told by someone who sees Dr. D that they are saying they are seeing a problem with putting artificial discs (Prodisc, in particular) in more than one level with women. That their spines cannot hold up to the weight of the Prodisc. Mark, with all the people you see and communicate with - do you see this trend? That women with multi levels are not doing as well as men? Is there anyone (preferably female) on the forum here, that have had a multi level Prodisc procedure who can offer some input here? I know there are many that have had successful multi levels, but I don't know how many of them are female versus male?

I have made the decision to go to Germany - but I am still asking questions. I am scheduled to be admitted May 21st and Dr. Bertagnoli will do the surgery May 22nd. The planned surgery is a 2 level Prodisc surgery (L34 and L45)above my existing Flexicore ADR at L5-S1.

Hey, anyone else going to be over there the week of the 21st of May ??

Oh, and here's an off topic question - can I use my Capital One Visa in Germany? I have never been overseas, so I may be asking questions in the next two months that seem dumb to some of you. One friend said years ago she used a credit card from her credit union and didn't have any problem. I would have thought that might be a problem.

KL Aguilar · #2 (**permalink**) 03-10-2007, 07:52 PM

I can not answer your surgical questions, but I went to Germany in 2002. We had trouble using a Discover card, but not Visa. However, credit cards were not accepted in some restaurants. I would suggest calling your bank and making sure your ATM card can be used. I seem to remember that the pin needed to have a certain number of digits.

sahuaro · #3 (**permalink**) 03-10-2007, 10:23 PM

Interesting question, Tisury! Did the concern apply to cervical as well as lumbar disks and was it only for Prodisc? Was the concern related to bone density issues or just gender differences in general?

We got a debit card to use in Europe through American Express; there is an international 800 number you can call to transfer more money into the card account from your checking. We were also able to use our MasterCard charge.

Poncho · #4 (**permalink**) 03-11-2007, 06:39 AM

Hi Tisury,

I certainly hope that there is not an overwhelming trend regarding females and multi-level Prodisc ADR problems because I am a 2 level replacement at L4-5 & L5-S1. If there is significant statistical information regarding increased incidence of failure among this demographic of spine patients I would like to know!!!

So far so good. I do have some pings of sciatica here and there especially with weather changes here in the midwest. However, I would take the life I have now any day over what I had just prior to surgery and the chronic daily pain levels.

As far as using a charge card. VISA worked okay for me - but it depends on the business. If you are able to use it, that is great because you will get the best rate of exchange that way (of course I am not taking into consideration the interest rate of the charge card). We also brought traveler's checks with us and exchanged some cash at either the airport or a bank. Our hotel was okay with using a charge card - but their are many retailers such as restaurants that will not.

Make sure you bring some movies with you unless you REALLY like watching MTV and CNN - because the last time I was over that way - all of the other stations were in German. You may also want to bring an electric cord adapter for hair dryer, laptop, curling iron, & etc....

I'm sure Mark is a pro at this by now and can perhaps offer a few tips.

I wish you nothing but the best.

Poncho

PS Tisury, did your Flexicore fail??? OR were there more levels that were painful that they did not know about at the time when you received your Flexicore ADR???

tisury · #5 (**permalink**) 03-11-2007, 05:29 PM

Wow........I just lost a post that I sat here and typed. Have no idea how. But anyhow, no I feel like I am repeating myself.....lol

First, thanks to all who have responded. My impression from this friend (someone I met through another forum) is that there is a major problem with women and the multi level Prodisc according to trial data and that it is being pushed under the covers. That is why I figured my best bet at getting at true response was to come here and find actual people who have had the multi level procedure. They feel that the "weight" of the Prodiscs is contributing to her ongoing problems. I wish I knew more details. That is why I am here. I don't know if it is due to the smaller build of most women or their tendency to have more bone density issues. I just don't know what the reason is behind this statement.

As for my one level Flexicore - no one (including Dr. B or Dr. Zeegers) thinks there are any issues or failures of the ADR at L5-S1. I had many contradictory diagnosis before surgery as to whether I needed a one level, 2 level, or 3 level intervention. Also, contradictory discograms. One said only L34, one said only L5S1. The last discogram was used as the basis for the one level ADR at L5S1. Long, long, long story..........believe me. My pain is pretty much in the same areas and the same intensity as before my first surgery in 2004, so I personally believe that it was just always more than a one level problem.

About exchanging money at the airport or bank - did you get a decent exchange rate doing it there? Are there banks near the Straubing or Bogen facilities to do this or should you do it while you are in Munich? I really need to find time to sift through posts. The problem is I am trying to make it through one more tax season before I leave for Germany (the money will certainly help, if it doesn't kill me in the meantime). I had saved a lot of informational posts over the last couple of years, but my computer crashed the beginning of Jan and I lost ALOT of info. The really important stuff (correspondence with Dr. B and Dr. Fenk-Mayer) I had hard copies of or backups. But I really wish I had all that other info I had collected.

Sitting time is maxed out for now. Thanks again to everyone.

dshobbies · #6 (**permalink**) 03-12-2007, 09:32 PM

Tisury,

I hope there are no issues with multi-level Prodiscs is women!!!! I had 3. I do believe that Dr. Delamarter is an excellent surgeon but Dr. B has more multi-level experience than any other doctor so I would think that he is your go-to guy.

My own experience with my 3 level Pro-disc, during my surgery I had extreme distraction/nerve damage to my left leg, which at 17 months post-op has still not completely recovered, nor is it likely to. I'm still hoping but fascilmate daily between hope, anger and depair. Is it better to suffer with a bad leg vs. a bad back? Most definitely, but it is still a disability and one I was not aware of prior to my surgery. I thought any distraction damage I might suffer would be temporary but this can happen even with a single level and I would think is unrelated to the Prodisc per se.

My back is doing OK and I still have issues but more than anything, and I believe this is the single most important thing I can tell you, is that I have my life back. Though more limited than a 'normal' person, there is little I can't do, barring sky diving and skiing! (How was your trip guy and gals?)

Though a little late, I'd still be interesting in discovering any success rate variances between men and women... Mark?????

Good luck, Dale (I answered your other questions privately)

Maria · #7 (**permalink**) 03-13-2007, 03:58 PM

I've seen Dr.Delamarter and am in fact scheduled to have a Prodisc implant at L4 and fusion at L5S1. I believe he made arguement for it because of some changes at the facets but also maybe because WC would auth this procedure and it's considered to be viable for that level. I don't want hardware use tho...

I saw Dr.Regan in the same day, and as I recall he pretty much thought I could have either fusion or Prodisc at L5S1, didn't really make much of the facet findings...

I've not heard the multi-level prob theory via Dr.Delamarter upon consultation however maybe that's a newer train of thought than when I was last seen.

Would be interesting to hear if indeed he does think what was stated, and if so, why (data/followup leaning in this direction ?)??

mmglobal · #8 (**permalink**) 03-14-2007, 01:52 AM

I've been attending SAS, NASS, and many other spine conferences for 5 years now. I spend a ton of time with many of the best surgeons ADR surgeons in the world and when we meet, it's all spine all the time. I've not run the numbers, but I believe that the distribution of my spine friends and clients is about 50-50. I've never heard of issues with multi-level ADR being attributed to sex. (There can be some good jokes here, but I'm too tired now.)

I've seen a lot of presentations with very detailed breakdowns of results by all types of categories you can imagine and have not seen anyone suggest that sex is a significant factor (beyond the higher risk of osteoporosis in women.)

tisury · #9 (**permalink**) 03-14-2007, 11:07 PM

Thanks Dale. While being completely normal (although I have been told that's impossible cause I never was totally normal -lol) and totally pain free after surgery would be a most welcome miracle, I am being realistic and I will be very satisfied if I can say as you have - that I have gotten my life back. Even if I have to deal with some pain. As long as it isn't like now - 24/7 even with fairly high doses of narcotic pain relievers. Right now just being able to sit through a meal in a restaurant without being near tears would be a miracle.

Thanks for responding Mark. I figured if there was some kind of trend, there was a good chance you would be aware of it. I must say it is comforting to hear you say that you have not seen or heard of any major differences in the outcomes between men and women. I will have to email my friend and see if I can get her to elaborate a little more on the reasoning behind the statements made to her. Needless to say, she is somewhat distraught over needing a fusion where the ADR's were placed.
(And yes, there is definetely a good joke in the way your statement was worded). I have two sisters-in -laws that also have back problems to some degree. The ongoing joke is that the 3 brothers must be too hard on their women.

Maria, first congratulations. You have worked hard to get to this point. I haven't been on line much recently...........when is your surgery scheduled for? Who will be performing your surgery? Best wishes to you.

tisury · #10 (**permalink**) 03-23-2007, 12:00 AM

Ok, I have edited some of my post. Don't know how to explain the reason, except to say that I learned today the info did NOT come directly from the doctor, but from people associated with the doc. These "people", who have no reason to tell this woman lies, fear losing their jobs for telling about the trial problems. This is scary. The other scary thing is that this woman who is having all the problems has been told they will no longer be following her in the trial anymore. Period. The end. Why or how can they exclude info on a person just because her case has not turned out well? I am 3 years out from my surgery and still being followed through the trial even though I did not have a happy ending.

mmglobal · #11 (**permalink**) 03-23-2007, 01:12 AM

I don't know what to say except that there is so much misinformation out there it's impossible to wade through it all.

So much of the information I get... even, or especially info from seemingly reliable sources, doctors, studies, etc.... it's all colored with marketing spin and financial motiviations. That's why I work for the patient... I don't work for a doctor or a clinic or a manufacturer.

All the best...

Mark

PS... I'm currently scheduled to leave Straubing on May 13... it's a shame that I'll just miss you. If something keeps me there longer... we'll have an iced coffee in the town square.

sahuaro · #12 (**permalink**) 03-23-2007, 02:55 AM

Tisury:
Obviously, this information is extremely upsetting. But I don't understand/believe that "they" could just terminate follow-up: there is still a medical obligation to follow her if "they" did the surgery, I would think. ???

tisury · #13 (**permalink**) 03-23-2007, 04:29 PM

Mark, yes, it is so hard to figure out what is reliable and what is not reliable info. It's hard for you, even now with all your contacts. You know how hard it is for the patient, I'm sure, that's why you are doing what you are. Wow, just my luck that you will be leaving right before I get there. We are flying out the 18th, traveling overnight, and arriving in Germany on the morning of the 19th. Our flights home are scheduled for June 1st. Sure would be great to get a chance to meet you. Not much chance I will get out to California for awhile, especially after paying out of pocket for this upcoming surgery. Wish I could come out to one of your gatherings and meet you and some of the people from the forum.

As for my friend's issues -I believe they are still willing to see her there, so far, they just won't be submitting her info for the trial anymore. They didn't give her any of the trial forms to fill out that you usually have to do for the scheduled follow ups, so they were serious about not following her for the trial anymore. There is a lot of stuff about this woman's case that is very odd and disturbing though. They discovered her tail bone was cracked after the surgery, but won't say it was from the surgery. I mean, with the amount of distraction needed for a 2 level, that could possibly happen, couldn't it? It just seems like she is really getting the run around. I know how she feels though. There were times after my surgery failed, that I got the definite impression that THE trial was more important than the fact that I was still in so much pain. I tried to convince myself I was just being paranoid, but I don't think so. I got the feeling no one wanted to intervene because it might mess up the trial data. Obviously, since they are no longer following her, that shouldn't be an issue anymore. Also the one - because you have seen a well known doctor, other doctors are worried about stepping on their toes and won't give you an honest second opinion. No doctor is perfect and sometimes it takes someone starting over from square one to figure out what 's wrong. I had one doctor walk in and say, you saw so and so and so and so, I doubt if there is anything I can do for you. She had one who did nothing as far as evaluation, but then handed her his card and told her to tell the other doc that he said hello. I told her to try Germany. At least get their opinion, then if they have any ideas, decide whether it is a viable option for her. When I first came to these forums, I couldn't figure out how people could afford going to Germany. BUT, put into perspective, it will cost about as much as a high end SUV or car and my health is definitely more important. So, I'll just drive my Gran Prix for another 6 years and make payments on my artificial discs instead of a car. lol

sahuaro · #14 (**permalink**) 03-23-2007, 09:03 PM

Tisury:
I wish you a successful surgery and smooth recovery!

Thank you for providing more information. I am glad your friend is at least being followed medically. There are so many disturbing aspects to this, including scientific integrity.

fortitudine · #15 (**permalink**) 03-27-2007, 04:21 AM

Just my 1 3/4 cents' (Cdn.)worth, but if I don't hear it from the horse's mouth, I am skeptical. Especially with medical info. I am a medical writer, but even so, when I'm a patient or a patient's mother I find I don't necessarily hear everything correctly. All it takes is a couple of misinterpretations as the 'info' is passed on from one person to another to mess up the facts. Can you talk to the staff person yourself? It seems to me if there is any kind of unethical practice going on, they should be reporting it.

This issue, in particular, could be a very serious one, and it can hopefully be followed up. An inquiry to the NIH or whatever agency does the IDE's and approvals should bring some answers.