Multi level ADR in women

tisury · #1 (**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 · #2 (**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 · #3 (**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 · #4 (**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 · #5 (**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 · #6 (**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.