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Montefiore OrthoWave info

Posted by Nancy N on 2/20/01 at 11:22 (039449)

FYI, I emailed Dr. Ehrlich last week to find out what the timetable is for study participants who are in the placebo group. He emailed me back this morning to say that that group will be enrolled in Phase 2 of the study, which they expect to start in early summer.

Now... I have to say I was surprised and disappointed by this, because my final study appointment is this coming Friday! I don't particularly want to have to wait another four months if I am, as I suspect, in the placebo group. Haven't I waited long enough already? To make matters worse, I am considering moving from New Jersey to Baltimore and may not be here anymore by the time they get around to starting this 'Phase 2.'

I am hoping to convince them to give me the treatment sooner for that reason, though I don't know if it'll work. I didn't go through all this just to end up not being able to get the treatment.... Those of you who've been involved in studies before--is this usually the way it goes? I'd be interested to hear your experiences.

Re: Montefiore OrthoWave info

Cynthia D on 2/21/01 at 11:38 (039552)

Hi Nancy, that's really too bad. Did you have any type of agreement, in writing or otherwise that you would receive the real thing at the end of the study? Were you informed up front about Phase 2? I wouldn't take this lying down - call them up and say you have suffered for the good of all mankind and in the interest of science long enough already. You deserve this treatment after all you have done. Now go get it.

Re: Montefiore OrthoWave info

Nancy N on 2/21/01 at 11:48 (039556)

I don't remember anymore what I was told, and what I wasn't. Logically, it makes sense to me that they would want to monitor us poor placebo folks, too, but jeez, can't they start Phase 2 right away for those who are just finishing Phase 1? I want to go get some custom orthotics made by a pedorthist, and to tell you the truth, I am afraid that those will 'cure' me and I won't need the treatment that I waited so long to get. I know that's sort of sick, that I should be grateful for being cured no matter how it happens, but it's annoying to think that I've used all my sick days from work this year to travel to NY for something I might now not be able to get (especially if I move to MD). And clearly, my perception of the way this would work is different than the reality--whether that's because they weren't clear about the timetable, or because I misunderstood, I can't say. Though, some of their instructions (like post-tx care) have been a bit lacking, so either option is probably equally possible. (Heck, a few weeks ago I was hoping they'd just zap me right then and there this Friday)

I am going to do my best to convince them to let me come back sooner rather than later. I don't know if it will work or not, though. Wish me luck, keep your fingers crossed, pray for me--whatever works for you. I appreciate the support! :

Re: Montefiore OrthoWave info

Dr. Zuckerman on 2/21/01 at 19:48 (039599)

Dr. Z lotto doesn't have any phase except phase one . Treatment. So enter our lotto if you don't get anywhere with the phase two in New York.

Re: Montefiore OrthoWave info

Nancy N on 2/22/01 at 09:23 (039627)

Ya know, Dr. Z, I might just do that! :)

Re: Montefiore OrthoWave info

Cynthia D on 2/21/01 at 11:38 (039552)

Hi Nancy, that's really too bad. Did you have any type of agreement, in writing or otherwise that you would receive the real thing at the end of the study? Were you informed up front about Phase 2? I wouldn't take this lying down - call them up and say you have suffered for the good of all mankind and in the interest of science long enough already. You deserve this treatment after all you have done. Now go get it.

Re: Montefiore OrthoWave info

Nancy N on 2/21/01 at 11:48 (039556)

I don't remember anymore what I was told, and what I wasn't. Logically, it makes sense to me that they would want to monitor us poor placebo folks, too, but jeez, can't they start Phase 2 right away for those who are just finishing Phase 1? I want to go get some custom orthotics made by a pedorthist, and to tell you the truth, I am afraid that those will 'cure' me and I won't need the treatment that I waited so long to get. I know that's sort of sick, that I should be grateful for being cured no matter how it happens, but it's annoying to think that I've used all my sick days from work this year to travel to NY for something I might now not be able to get (especially if I move to MD). And clearly, my perception of the way this would work is different than the reality--whether that's because they weren't clear about the timetable, or because I misunderstood, I can't say. Though, some of their instructions (like post-tx care) have been a bit lacking, so either option is probably equally possible. (Heck, a few weeks ago I was hoping they'd just zap me right then and there this Friday)

I am going to do my best to convince them to let me come back sooner rather than later. I don't know if it will work or not, though. Wish me luck, keep your fingers crossed, pray for me--whatever works for you. I appreciate the support! :

Re: Montefiore OrthoWave info

Dr. Zuckerman on 2/21/01 at 19:48 (039599)

Dr. Z lotto doesn't have any phase except phase one . Treatment. So enter our lotto if you don't get anywhere with the phase two in New York.

Re: Montefiore OrthoWave info

Nancy N on 2/22/01 at 09:23 (039627)

Ya know, Dr. Z, I might just do that! :)