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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 31. This is the beginning of the thread.
Posted by Ant-Rock on July 25, 2005, at 16:27:14
Does anyone know when this could become available, even as a clinical trial?
Thanks,
Anthony
Posted by SLS on July 25, 2005, at 18:09:25
In reply to Deep Brain Stimulation...., posted by Ant-Rock on July 25, 2005, at 16:27:14
Hi Anthony.
Long time no see.
It is nice to see you again, but I am wondering if this is such a good thing. Does it mean that your condition has deteriorated? I hope not. Either way, it is still good to see you.
- Scott
Posted by AntRock on July 25, 2005, at 21:00:25
In reply to Deep Brain Stimulation... Nice to see you again? » Ant-Rock, posted by SLS on July 25, 2005, at 18:09:25
> Hi Anthony.
>
> Long time no see.
>
> It is nice to see you again, but I am wondering if this is such a good thing. Does it mean that your condition has deteriorated? I hope not. Either way, it is still good to see you.
>
> - ScottHi Scott,
It's nice to hear from you again as well.I wish I wasn't here again, but unfortunately I've begun lurking again in hope of finding a new treatment that really works.
I don't bother seeing my p-doc anymore, because all I'm offered is ECT, and I've resisted this for many years. Maybe I'm making a big mistake.This Deep Brain Stim sounds promising, but I don't know how soon it will be offered, if at all.
Thank you for responding, and I hope all is well with you.
Anthony
Posted by ravenstorm on July 26, 2005, at 21:01:48
In reply to Re: Deep Brain Stimulation... Nice to see you again? » SLS, posted by AntRock on July 25, 2005, at 21:00:25
Have you thought about rTMS or the Vagus nerve stimulator implant? I don't know anything about the deep brain stimulation. Sorry.
Posted by temoigneur on July 27, 2005, at 2:55:46
In reply to Re: Deep Brain Stimulation... Nice to see you again?, posted by ravenstorm on July 26, 2005, at 21:01:48
> Have you thought about rTMS or the Vagus nerve stimulator implant? I don't know anything about the deep brain stimulation. Sorry.
Hey, I was being evaluated for the DBS OCD study in six people in florida under Dr. Goodman - I was told that if the results are postive enough, they're going to seek a grant to perform it on 60 patients. Last I checked they hadn't recruited the sixth patient, they're looking for uncomplicated, severe, trtmt resistant cases. You probably know about the study, - google NIMH, Wayne Goodman, DBS OCD, or scout through psychiatry at UFL gainesville.They did DBS for major debression in Toronto, - I'm sure you know that - i'm going for an assessment, I'll keep you posted:)
if you want, bentley79 at hotmail
Ben
Posted by ravenstorm on July 27, 2005, at 8:26:13
In reply to DBS @ Univ. of Florida Gainesville » ravenstorm, posted by temoigneur on July 27, 2005, at 2:55:46
What is deep brain stimulation? How is it done? How is it different from rTMS or ECT?
Thanks!
Posted by Ant-Rock on July 27, 2005, at 14:07:28
In reply to Re: Deep Brain Stimulation... Nice to see you again?, posted by ravenstorm on July 26, 2005, at 21:01:48
> Have you thought about rTMS or the Vagus nerve stimulator implant? I don't know anything about the deep brain stimulation. Sorry.
Hi Ravenstorm,
Yes, I tried rTMS back in 1999/2000. It was a new trial at Beth-Isreal Hospital near Boston.
Unfortunately, it didn't help my treatment- resistent depression.
Maybe they have improved rTMS since then , I'm not sure.
I would appreciate any info anyone could provide.
Thank you,Anthony
Posted by Ant-Rock on July 27, 2005, at 14:16:00
In reply to DBS @ Univ. of Florida Gainesville » ravenstorm, posted by temoigneur on July 27, 2005, at 2:55:46
>
> Hey, I was being evaluated for the DBS OCD study in six people in florida under Dr. Goodman - I was told that if the results are postive enough, they're going to seek a grant to perform it on 60 patients. Last I checked they hadn't recruited the sixth patient, they're looking for uncomplicated, severe, trtmt resistant cases. You probably know about the study, - google NIMH, Wayne Goodman, DBS OCD, or scout through psychiatry at UFL gainesville.
>
> They did DBS for major debression in Toronto, - I'm sure you know that - i'm going for an assessment, I'll keep you posted:)
> if you want, bentley79 at hotmail
> BenHi Ben,
I don't have ocd, but have had treatment resistant depression for most of my adult life.
If I understad you correctly, the Florida study is not for depression?
Thank you for all the information, I really appreciate it.Anthony
Posted by denise1966 on July 27, 2005, at 15:11:37
In reply to Re: DBS @ Univ. of Florida Gainesville » temoigneur, posted by Ant-Rock on July 27, 2005, at 14:16:00
Hi,
Would it be possible to try Deep BRain Stimulation without first exhausting everything else, including ECT? I wouldn't have thought so.
Denise
Posted by denise1966 on July 27, 2005, at 15:16:28
In reply to Deep Brain Stimulation...., posted by Ant-Rock on July 25, 2005, at 16:27:14
Hi Anthony,
I'm actually seriously thinking of having ECT (Unilateral) and was just wondering why you yourself have resisted it so far and yet are prepared to try something invasive like deep brain stimulation.
One of my reasons for trying ECT is that I want to try everything, Deep Brain Stimulation is something I have earmarked for the future :-) But don't think they would put me on a trial for something like that unless I'd tried ECT first.
I guess the good thing about Deep Brain Stimulation is that they focus on one specific area of the brain known as this area 25, whereas ECT is not particularly concentrated.
Denise
Posted by Ant-Rock on July 27, 2005, at 16:18:07
In reply to Re: To Ant-Rock, posted by denise1966 on July 27, 2005, at 15:16:28
> Hi Anthony,
>
> I'm actually seriously thinking of having ECT (Unilateral) and was just wondering why you yourself have resisted it so far and yet are prepared to try something invasive like deep brain stimulation.
>
> One of my reasons for trying ECT is that I want to try everything, Deep Brain Stimulation is something I have earmarked for the future :-) But don't think they would put me on a trial for something like that unless I'd tried ECT first.
>
> I guess the good thing about Deep Brain Stimulation is that they focus on one specific area of the brain known as this area 25, whereas ECT is not particularly concentrated.
>
>
> DeniseHello Denise,
That's a good question.
I guess I've read so many stories of irreversible
cognitive problems following ECT, that I'm more scared of that, than the unknown(DBS).
My Doctor has nothing left to offer me other than ECT, and this in itself is very disheartning.Maybe I'm making a mistake with this logic, I just don't know.
After reading of the DBS/Depression trials, and seeing the success and safety of the treatment, I thought it sounded too good to be true.
Denise,
I'd love to hear your opinion of ECT/safety.Anthony
Posted by ravenstorm on July 27, 2005, at 19:51:18
In reply to Re: To Ant-Rock » denise1966, posted by Ant-Rock on July 27, 2005, at 16:18:07
Anthony-
Here is a web site for VNS.
www.vnstherapy.com
As far as rTMS, it probably hasn't improved much since you had it. (As far as I know). There are two Mindcare centers in Canada doing it. They are claiming an 80% success rate, which i just can't believe based on the outcomes in the clinical trials in the U.S. right now. A doctor in Atlanta is also doing rTMS off label.
Someone on this board was recently touting the benefits of ECT, but my poor depressed brain can't remember who at the moment. On another board I post to there is another person who is very happily receiving ECT at the moment. But, like all things, I'm sure you can also find people who thought it was the worst thing ever, so, what do you do? I get so sick from general anesthesia that I can't imagine that I'd be at all functional during the entire course of treatment. The two people who are currently having ECT and doing well seem to bounce right back after each treatment, which I can't imagine given that they have to knock you out. I think I'm just much less resilient than most people. Sigh.
***Could you please tell me what deep brain stimulation is! Thanks!
Posted by AntRock on July 27, 2005, at 22:26:50
In reply to Re: To Ant-Rock, posted by ravenstorm on July 27, 2005, at 19:51:18
Hi Raven,
Thank you for the vargus info.
Here is some info on DBS.
http://www.news-medical.net/?id=8165This explains it much better than I could.
Anthony
Posted by Spector on July 27, 2005, at 23:55:20
In reply to Deep Brain Stimulation...., posted by Ant-Rock on July 25, 2005, at 16:27:14
They are doing it experimentally (for depression -- not OCD) at the hospital associated with Brown University. And they are currently looking for candidates, though they have not actually implanted anyone for over a year now. A couple of months ago my mom spoke to one of the doctors running the trial, or whatever you call it at this pre-controlled study stage. I think, though I am not certain, that you do have to have tried ECT first. But, perhaps there is some wiggle room about that. Not sure.
At Brown they have implanted only 5 people so far. According to the doctor that my mother spoke to, who she says was surprisingly nice and willing to answer all questions, 3 of the 5 have had success with it; for the other 2 it has been "rocky." I personally would translate "rocky" into hell, but that doesn't mean it shouldn't be considered. For me the fact that it is absolutely not a cure -- when the thing is turned off symptoms return -- is what made me eliminate it as an option right now.
If you would like names and phone numbers of who specifically to call, please let me know. My mom is already asleep or I would just include it now.
About ECT -- I have found it so far impossible to get any concrete sense of what proportion of people have moderate or severe memory or cognitive problems as a result. I tried ECT. It did not work for me and it left me with huge memory gaps extending as far back as far as 6 or 7 years, with the loss being more severe the closer you get to the treatments. The year and a half prior to the ECT is almost an entire blank. Some things have come back, but much has not. Very disturbing, but I have read of way way worse cases. And, of course, ECT has a very high sucess rate and has saved many many lives. And some proportion of people only have memory loss right around the time of the treatments. Though, as you probably know, a lot of people have to get maintenance treatments.
I am currently trying neurofeedback which has had some very promising results for treating depression (as well as a whole bunch of other things). I have posted about it on the alternative board. I am dying for it to work. Desperate. It is not an overnight thing especially for very severe and long depressions. But when it works, it seems to really work. By that I mean that it seems to cut down greatly on relapse. This according to Cory Hammond, a psychologist at the University of Utah who has done the most research so far on neurofeedback and depression. I would guess your psychiatrist has not heard about it. Mine had not. It has not quite broken into the establishment yet, though there are phychiatrists using it. According to what my psychiatist found when he looked at what's been published, controlled studies have only been done on its use with ADD and ADHD. But case study success rate has been very promising -- 75-80%. And none of the nightmarish problems that drugs can bring.
I should probably stop writing about this here since I'm starting to repeat what I've written on the other board and you didn't even ask about neurofeedback.
My thoughts and best wishes and all too real understanding are with you.
Nomi Spector
Posted by Ant-Rock on July 28, 2005, at 7:06:45
In reply to Re: Deep Brain Stimulation.... » Ant-Rock, posted by Spector on July 27, 2005, at 23:55:20
> They are doing it experimentally (for depression -- not OCD) at the hospital associated with Brown University. And they are currently looking for candidates, though they have not actually implanted anyone for over a year now. A couple of months ago my mom spoke to one of the doctors running the trial, or whatever you call it at this pre-controlled study stage. I think, though I am not certain, that you do have to have tried ECT first. But, perhaps there is some wiggle room about that. Not sure.
>
> At Brown they have implanted only 5 people so far. According to the doctor that my mother spoke to, who she says was surprisingly nice and willing to answer all questions, 3 of the 5 have had success with it; for the other 2 it has been "rocky." I personally would translate "rocky" into hell, but that doesn't mean it shouldn't be considered. For me the fact that it is absolutely not a cure -- when the thing is turned off symptoms return -- is what made me eliminate it as an option right now.
>
> If you would like names and phone numbers of who specifically to call, please let me know. My mom is already asleep or I would just include it now.
>
> About ECT -- I have found it so far impossible to get any concrete sense of what proportion of people have moderate or severe memory or cognitive problems as a result. I tried ECT. It did not work for me and it left me with huge memory gaps extending as far back as far as 6 or 7 years, with the loss being more severe the closer you get to the treatments. The year and a half prior to the ECT is almost an entire blank. Some things have come back, but much has not. Very disturbing, but I have read of way way worse cases. And, of course, ECT has a very high sucess rate and has saved many many lives. And some proportion of people only have memory loss right around the time of the treatments. Though, as you probably know, a lot of people have to get maintenance treatments.
>
> I am currently trying neurofeedback which has had some very promising results for treating depression (as well as a whole bunch of other things). I have posted about it on the alternative board. I am dying for it to work. Desperate. It is not an overnight thing especially for very severe and long depressions. But when it works, it seems to really work. By that I mean that it seems to cut down greatly on relapse. This according to Cory Hammond, a psychologist at the University of Utah who has done the most research so far on neurofeedback and depression. I would guess your psychiatrist has not heard about it. Mine had not. It has not quite broken into the establishment yet, though there are phychiatrists using it. According to what my psychiatist found when he looked at what's been published, controlled studies have only been done on its use with ADD and ADHD. But case study success rate has been very promising -- 75-80%. And none of the nightmarish problems that drugs can bring.
>
> I should probably stop writing about this here since I'm starting to repeat what I've written on the other board and you didn't even ask about neurofeedback.
>
> My thoughts and best wishes and all too real understanding are with you.
>
> Nomi SpectorWow Nomi,
Thank you so much for the great info.
I can't believe the study is at Brown, I actually live in that city!
I would love the contact names, just in case I ever consider this route.It's so hard chosing an option for treatment. I'ts almost like rolling the dice with your life, but so is not treating the depression.
I'm just trying to gather as much info as possible, and hoping technology speeds up.I don't know if neurofeedback would help, seeing that my illness has lasted so many years, but I will keep it in mind. Is it the same as biofeedback?
Also, thank you for sharing your ECT outcome with me. Was it Unilateral?
Anthony
Posted by Spector on July 28, 2005, at 12:27:19
In reply to Re: Deep Brain Stimulation.... » Spector, posted by Ant-Rock on July 28, 2005, at 7:06:45
> Wow Nomi,
> Thank you so much for the great info.
> I can't believe the study is at Brown, I actually live in that city!
> I would love the contact names, just in case I ever consider this route.
>
> It's so hard chosing an option for treatment. I'ts almost like rolling the dice with your life, but so is not treating the depression.
> I'm just trying to gather as much info as possible, and hoping technology speeds up.
>
> I don't know if neurofeedback would help, seeing that my illness has lasted so many years, but I will keep it in mind. Is it the same as biofeedback?
>
> Also, thank you for sharing your ECT outcome with me. Was it Unilateral?
>
> Anthony
Hi Anthony,The woman you want to speak with is Dr. Linda Carpenter. The number is: 401-455-6537.
My mom's memory actually is that you don't need to have done ECT. It's more that they want you to have tried a certain number of medications of different types, but not some astronomical amount.
You live in Providence. Wow. That helps a bit.
Yes, rolling the dice with your life. Yes. I know. But as serious as DBS is, as you probably know, they've done the technique on thousands of Parkinson's patients. It is brain surgery, but relatively noninvasive and low risk. And it is reversible. But still, of course, a huge investment of everything that you have so little of because you are sick now -- energy, hope, everything.
Neurofeedback is a type of biofeedback, but with the brain. It is operant behavioral conditioning designed to retrain your brain into a healthier wave pattern. You do exercises looking at a graphic representaion of your brainwave patterns and when you are mysteriously able to alter them into a better pattern, you are rewarded with plesant dings. You don't know how you're doing it -- it's not exactly relaxation or concentration, but apparently the brain knows. It learns. And then hopefully it is able to "generalize" -- maintain the better pattern when your not doing to training. It has worked for people with chronic severe depression. It has been way more effective than regular biofeedback.
No, the ECT I did was bilateral.
I wish you the best of everything you need right now. You will come out.
Nomi
Posted by Ant-Rock on July 29, 2005, at 14:21:57
In reply to Re: Deep Brain Stimulation...., posted by Spector on July 28, 2005, at 12:27:19
>
> > Wow Nomi,
> > Thank you so much for the great info.
> > I can't believe the study is at Brown, I actually live in that city!
> > I would love the contact names, just in case I ever consider this route.
> >
> > It's so hard chosing an option for treatment. I'ts almost like rolling the dice with your life, but so is not treating the depression.
> > I'm just trying to gather as much info as possible, and hoping technology speeds up.
> >
> > I don't know if neurofeedback would help, seeing that my illness has lasted so many years, but I will keep it in mind. Is it the same as biofeedback?
> >
> > Also, thank you for sharing your ECT outcome with me. Was it Unilateral?
> >
> > Anthony
>
>
> Hi Anthony,
>
> The woman you want to speak with is Dr. Linda Carpenter. The number is: 401-455-6537.
>
> My mom's memory actually is that you don't need to have done ECT. It's more that they want you to have tried a certain number of medications of different types, but not some astronomical amount.
>
> You live in Providence. Wow. That helps a bit.
>
> Yes, rolling the dice with your life. Yes. I know. But as serious as DBS is, as you probably know, they've done the technique on thousands of Parkinson's patients. It is brain surgery, but relatively noninvasive and low risk. And it is reversible. But still, of course, a huge investment of everything that you have so little of because you are sick now -- energy, hope, everything.
>
> Neurofeedback is a type of biofeedback, but with the brain. It is operant behavioral conditioning designed to retrain your brain into a healthier wave pattern. You do exercises looking at a graphic representaion of your brainwave patterns and when you are mysteriously able to alter them into a better pattern, you are rewarded with plesant dings. You don't know how you're doing it -- it's not exactly relaxation or concentration, but apparently the brain knows. It learns. And then hopefully it is able to "generalize" -- maintain the better pattern when your not doing to training. It has worked for people with chronic severe depression. It has been way more effective than regular biofeedback.
>
> No, the ECT I did was bilateral.
>
> I wish you the best of everything you need right now. You will come out.
>
> Nomi
Thank you again Nomi for the contact#.This neurofeedback sounds very interesting, and low risk as well.
Are they doing it all over the country, or in limited trials?
I will do some more searches on google to find out more.
I really hope it works out for you.
What is your opinion on talk therapy?Anthony
Posted by Spector on July 29, 2005, at 22:55:18
In reply to Re: Deep Brain Stimulation.... » Spector, posted by Ant-Rock on July 29, 2005, at 14:21:57
> > Nomi
>
> Thank you again Nomi for the contact#.
>
> This neurofeedback sounds very interesting, and low risk as well.
> Are they doing it all over the country, or in limited trials?
> I will do some more searches on google to find out more.
> I really hope it works out for you.
> What is your opinion on talk therapy?
>
> Anthony
>
>Hi. Neurofeedback is being done all over the country. I just wrote a long post about it on the Alternative board with links to a bunch of information. Here's the link to that post: http://www.dr-bob.org/babble/alter/20050713/msgs/535194.html
My opinion on talk therapy? Well .. .. that's a dicey question and I don't want to offend anyone. But, I believe that talk therapy can rarely if ever get a person out of a severe clinical depression, particularly one that has not been triggered by a life event. That doesn't mean that there aren't good reasons to be seeing a therapist during a depression. Of course there are. But as an actual treatment, I think it has failed miserably.
My opinion comes from my own experience and things I have read. But others may certainly disagree. And, as I said, I can think of several good reasons to be seeing a therapist during a depression, particularly if one has little or no support from close family or friends.
Thank you very much for your good wishes. You have mine as well.
Nomi
Posted by denise1966 on September 25, 2005, at 11:37:37
In reply to DBS @ Univ. of Florida Gainesville » ravenstorm, posted by temoigneur on July 27, 2005, at 2:55:46
Hi Ben,
Just wondered if you went for the consultation for DBS and how it went?
Denise
Posted by deniseuk on February 17, 2006, at 4:33:39
In reply to Re: Deep Brain Stimulation.... » Ant-Rock, posted by Spector on July 27, 2005, at 23:55:20
Hi Nomi,
I was just wonderng how the neurofeedback was going?
Denise
Posted by deniseuk on February 17, 2006, at 4:34:44
In reply to Deep Brain Stimulation...., posted by Ant-Rock on July 25, 2005, at 16:27:14
Ant-rock,
Did you manage to get on a trial for DBS or is it you who is trying out Vagus Nerve Stimulation?
Kind Regards.....Denise
Posted by deniseuk on February 17, 2006, at 5:16:11
In reply to Re: Deep Brain Stimulation...., posted by Spector on July 29, 2005, at 22:55:18
Hi,
I was Just wondering if you'd pursued the Deep Brain Stimulation Treatment or have you managed to find another treatment?
Kind Regards....Denise
Posted by deniseuk on February 17, 2006, at 5:17:02
In reply to Re: Deep Brain Stimulation...., posted by Spector on July 29, 2005, at 22:55:18
Hi,
I was wondering how the Neurofeedback is going is it helping?
Kind Regards....Denise
Posted by Spector on February 18, 2006, at 3:29:15
In reply to Re: To Spector - Neurofeedback, posted by deniseuk on February 17, 2006, at 4:33:39
> Hi Nomi,
>
> I was just wonderng how the neurofeedback was going?
>
>
> Denise
Denise, hi. Unfortunately, the neurofeedback did not work for me. Utterly devastating after five months of trying.But I would not dismiss it as a possibility.
I have just just discovered why it -- and every other of the dozens and dozens of therapies I have tried -- may not have worked. I appear to have Lyme disease. Lyme disease would not have triggered the cripplingly severe agitated depression I have been in for three years three months and 17 days. No -- that would be the amphetimine that was given to me in May 2002 by a psychiatrist who was on a mission to rid the world of ADD but with me succeeded only in retriggering manic depression that had been in complete remission for 13-1/2 years. But, the underlying Lyme disease could be the reason that I have remained frozen in this state of terrorized depression for an extremely atypical amount of time.
I just got the test results today after an unbearable wait of more than two weeks and my mind is still spinning. I am starting on a long course of heavy duty antibiotics and have no idea what is coming. No idea if this could actually finally be the end of an unspeakable living nightmare, or the beginning of more torture.
So I will have to post more later on. I have been waiting longer than long to post on here that I am well finally.
But, yes, I would still encourage anyone to look into neurofeedback. I'd be a better advocate if it had actually worked for me, but I still believe it may have great potential. And you would normally know much sooner than five months if you were on the right path. A convergence of several things made it take so long with me. Not typical.
I did not search to try to find out your story, but I wish you everything you need right now from the bottom of my heart.
Nomi
Posted by Ant-Rock on February 20, 2006, at 18:02:30
In reply to Re: Deep Brain Stimulation....Ant-Rock, posted by deniseuk on February 17, 2006, at 5:16:11
> Hi,
>
> I was Just wondering if you'd pursued the Deep Brain Stimulation Treatment or have you managed to find another treatment?
>
>
> Kind Regards....DeniseHi Denise,
I did look into DBS,
but after reading all the information, I decided it's not a viable option at this time.
A doctor basically wrote, "the chances of getting the electrodes placed in the correct spot on the brain, this early on, are very unlikely".In other words, they need a lot more practice with this treatment until they can utilize it in an effective way.
I am currently contemplating ECT.
Are you considering (DBS) it?
Anthony
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