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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 13 of 13. This is the beginning of the thread.
Posted by PhoenixGirl on September 19, 2001, at 15:24:43
Okay, I'm trying to start a new thread with this, accidentally made it a reply before. Please read this post, I think people will find it very interesting. I gave an update on my situation, but I think it left the
board quickly because it was last period. Anyway, here's what's happening: I saw the Emory hospital docs about
ECT. I'm a candidate and they recommend I get it. One of the Emory docs is doing a study on Transcranial Magnetic
Stimulation, but I can't participate in it because I'd have to go off all my meds and might get the placebo (I would
probably get dangerously depressed if I did that). However, there happens to be a doctor in Atlanta who is doing
TMS already and he's not doing a study. TMS hasn't been approved by the FDA, and it's rate of effectiveness is
unclear, but it seems to be safe. What happens with TMS -- the doc uses the TMS machine to create a magnetic field
in your brain (something like that), which may relieve depression by altering brain chemicals. You are fully awake and
there is no pain, but the sensation that a woodpecker is working your head. Memory isn't affected, you can continue
working and driving. The doctor doing it says that TMS appears to be less effective than ECT, but more effective
than medication generally, with few side effects. As with all treatments for depression, the effect does not last
indefinitely, and you have to keep getting it done. Initially, I'd get 5 treatments a week for 3 to 5 weeks (a treatment
takes approx. 30 minutes), then taper it down to a "maintenance" schedule like with ECT.
Okay, so here's my dilemma: I have about $1900 to spend on TMS and/or ECT. The TMS is offering a fee of $50
per treatment, and if I'm not beginning to improve after 2 weeks of treatment, we'd stop. So, the cost of trying TMS
is about $500 (5 treatments x 2 weeks x $50). If it did work, I'd continue the full course of treatment and hopefully
not need ECT. And of course I'd try TMS first because it's much less disruptive to my life, I wouldn't have to take
leave or have memory problems. If TMS fails, I'd be out about $500, so I'd have about $1400 left for ECT. If I do
ECT, I pay $100 for an unlimited hospital stay and 10% of the cost of ECT. Each ECT treatment costs $1100, but
my insurance company negotiates the fee down, and I'd pay 10% of the negotiated fee. I have no idea what the
negotiated fee would be, the fee reductions that my insurance company gets for me varies a lot. So the fee for each
ECT treatment is a wildcard. I'll have to get at least 6 initial treatments, then taper to 4 per month, 2 per month, then
once a month. It all depends on how fast I respond to treatment. Therefore I'd need to pay for at least 12 treatments
until I get down to the once a month maintenance. Remember, the initial round of ECT is normally between 6 to 12
treatments, then it does to 4 times a month, twice a month, and once a month. I think that my initial number of ECT
treatments will probably not need the full 12 initial treatments because I'm not acutely suicidal right now. I think I'd
need the initial 6 or so, then 4x a month, 2x a month, 1x a month. So that's 12 treatments before the 1x per month
maintance begins. I hope you're following this! Okay so say the negotiated cost is $90 per treatment for me. Multiply
12 by $90, and the ECT could cost roughly $1200 including $100 hospital fee.
My question is, should I try TMS before trying ECT? Bottom line: To find out if TMS will work at all will cost me
$500, and approx. $800 -- $1300 for full initial course of treatment before maintance. ECT will cost roughly $1200
-- $1700 for full initial round of treatment before 1x per month maintance (probably the low end). Worst case
scenario: I'd try full round of TMS to no avail, then full round of ECT, leaving me with $1000 of debt owed to Emory
hospital, who would let me pay it off gradually. Best case scenario: TMS works and I don't even need ECT. Middle
of the road scenario: TMS fails, but I've got enough money left over for ECT with little or no debt.
PHEW!! So what do you think I should do? I'm thinking that my life is being ruined by depression, has been since age
12, and I should go for it all. That is, I should try TMS first before trying ECT.
Please give me your thoughts on this, and what you think of TMS and/or ECT in general. By the way, I'm so lonely
and isolated and I doubt any treatment will make me truly okay if this loneliness continues. However, they may lift me
up enough that I can start making relationships with others.
Posted by Neal on September 19, 2001, at 23:46:58
In reply to Update on the me and the ECT, and TMS vs. ECT, posted by PhoenixGirl on September 19, 2001, at 15:24:43
PhoenixGirl,
My heart goes out to you for all you've been through. I would certainly go for the TMS first. I was reading somewhere that it has a 60-70% success rate.-Neal
Posted by Mitch on September 20, 2001, at 0:18:44
In reply to Update on the me and the ECT, and TMS vs. ECT, posted by PhoenixGirl on September 19, 2001, at 15:24:43
> PHEW!! So what do you think I should do? I'm thinking that my life is being ruined by depression, has been since age
> 12, and I should go for it all. That is, I should try TMS first before trying ECT.
> Please give me your thoughts on this, and what you think of TMS and/or ECT in general. By the way, I'm so lonely
> and isolated and I doubt any treatment will make me truly okay if this loneliness continues. However, they may lift me
> up enough that I can start making relationships with others.PhoenixGirl,
I would go with my gut feelings! Everytime I ignore them far too often and I find myself telling myself-"I told you so!"
Another bonus-the total expense differences are a few hundred here and there. I have been through thyroid surgery *with* good insurance and wound up paying out the yazoo for that. I see your predicament much more potentially life-threating than what I went through.
As far as thoughts about TMS, etc. go, I think it is a highly plausible alternative because.. I have read some stuff here that sometimes a "shock to the system" (a change) is what works rather than targeting a particular receptor with a med, i.e. I have also heard of some pdocs routinely switching AD's with patients on purpose to maintain response-it is like your body adjusts to a med and then you have to play games with it-so to speak to keep it on its feet.
Go for it!
But dont' keep us in the dark :)Mitch
Posted by Cam W. on September 20, 2001, at 6:49:23
In reply to Update on the me and the ECT, and TMS vs. ECT, posted by PhoenixGirl on September 19, 2001, at 15:24:43
PhoenixGirl - TMS does have some interesting possibilities. The seizure-inducing version of TMS seems to be even better. TMS has the advantage over ECT in that the magnetic pulse is more focal. The magnetic pulse can be more localized to exact structures in the brain, whereas the electric pulse of ECT is partially blocked and spread out by the bones of the skull.
That being said, I am not sure that I would want to undergo TMS treatments just yet. The technique is too new, and all the bugs have not been worked out just yet. They haven't quite figured out what dosage of magnetism is optimal, or whether sub-seizure threshold TMS is as effective as ECT. Although TMS can be localized much more accurately than ECT, they are not quite sure where to focus the magnetic pulse for optimal efficacy. They has also had some problems generalizing animal data to humans. There have also been too many negative studies with TMS (although fewer than even a year or two ago, as the technique is being further refined).
For now, if it were me, I think that I would still prefer ECT; at least until more of the above problems have been addressed. I also don't like the idea of having to pay to be a guinea pig. I may change my mind in a year or two, as the TMS techniques are refined, and more positive data is published.
The seizure-inducing TMS is particularily intriguing, but they are having a problem with the amount of heat that is generated with current technology (ie. some animals are getting nasty burns, and the procedure seems to be far too uncomfortable, as of yet). Once they have worked out how to produce focal seizures with TMS, I believe that this procedure will work as well, if not better, than ECT, with far fewer sife effects (esp. amnesia).
Before deciding which way to go, ask your doc and others who work closely with TMS about the above concerns. Make sure you are able to guage just how far the research into TMS has progressed (ie. how much better the procedure is, than has been reported in the literature, to date), before putting out the big bucks on a still unproven therapy. No matter how promising TMS may look, most of the excitement in the scientific community is still based in the future.
Perhaps go with the ECT now and, if need be, consider TMS in a year or two.
Just some of my thoughts on TMS; the ultimste decidion is yours to make. - Cam
Posted by shelliR on September 20, 2001, at 10:49:46
In reply to Re: Update on the me and the ECT, and TMS vs. ECT, posted by Neal on September 19, 2001, at 23:46:58
> PhoenixGirl,
> My heart goes out to you for all you've been through. I would certainly go for the TMS first. I was reading somewhere that it has a 60-70% success rate.
>
> -NealNeal, are you sure that percentage success rate is not for the implants. I had talked to a researcher at NIHM last year concerning TMS trials and he said the trials were not very encouraging. If I am not mistaken (and I could be), the developer of TMS has moved on and is now working with the implant technique. (Can't recall what that technique is called--Cam??)
Phoenix girl, I know it feels hard to wait and research all this stuff, but it's a lot of money and your brain, so find out all imformation you can before deciding.
Shelli
Posted by Mitch on September 20, 2001, at 12:33:01
In reply to Re: Update on the me and the ECT, and TMS vs. ECT » Neal, posted by shelliR on September 20, 2001, at 10:49:46
> Neal, are you sure that percentage success rate is not for the implants. I had talked to a researcher at NIHM last year concerning TMS trials and he said the trials were not very encouraging. If I am not mistaken (and I could be), the developer of TMS has moved on and is now working with the implant technique. (Can't recall what that technique is called--Cam??)
>Shelli,
I believe that is the Vagus Nerve Stimulator which is being used to control intractible seizures for people with epilepsy. If I am wrong-sorry. If I am right-I wonder if there has been anything published on it for depression??
Mitch
Posted by shelliR on September 20, 2001, at 16:21:41
In reply to Re: Update on the me and the ECT, and TMS vs. ECT » shelliR, posted by Mitch on September 20, 2001, at 12:33:01
> > Neal, are you sure that percentage success rate is not for the implants. I had talked to a researcher at NIHM last year concerning TMS trials and he said the trials were not very encouraging. If I am not mistaken (and I could be), the developer of TMS has moved on and is now working with the implant technique. (Can't recall what that technique is called--Cam??)
> >
>
> Shelli,
>
> I believe that is the Vagus Nerve Stimulator which is being used to control intractible seizures for people with epilepsy. If I am wrong-sorry. If I am right-I wonder if there has been anything published on it for depression??
> Mitch
Yes, that is exactly what I was talking about. If you do a search on vagus nerve stimulation and depression, you come up several studies with pretty good stats. A pacemaker-like device currently used to treat epilepsy is implanted for depression. The stats are even better than they look because some of the trials were done on people who had not responded to any AD *and* had not responded to ECT. Phoenix Girl, you might want to look into this, to see if you would qualify for any of the trials. Thanks for refreshing my memory, Mitch.Shelli
Posted by Cam W. on September 20, 2001, at 17:30:05
In reply to Re: Update on the me and the ECT, and TMS vs. ECT » Mitch, posted by shelliR on September 20, 2001, at 16:21:41
Shelli - The latest news on TMS use in animals, when focused bilaterally on the limbic system, or on the left side near the Wernecke's area (I am not absolutely positive on the positions) did show some promise. It seems that they have to get new machines with magnets that focus better.
Also, the seizure-inducing TMS looks promising. It should work as well as ECT, without the problem of deflection by bones of the skull (magnetic waves travel through bone with little interference, and the burning of the scalp with the high intensity magnetism that is used. Once they overcome these (and probably some other technical problems), seizure-inducing TMS may be as good as ECT, but one will require fewer pre-treatment meds and less risk of amnesia (due to smaller regions of the brain affected - focal stimulation).
I have not heard much about Vagal Nerve Stimulation, but it seems like a much more invasive procedure, even than ECT (ie. risk of infection, harm to vagus nerve, etc.).
There is another implant, in the news, that looks very promising (Deep Brain Stimulation - I think). It is used to decrease the tremors associated with Parkinson's disease. I've seen some stories on it, and if they implant it properly (it is a tricky operation), it works like a damn.
- Cam
Posted by shelliR on September 20, 2001, at 19:15:31
In reply to Re: ECT, TMS, VNS, DBS, ABC, THC, LSD, ETC..... » shelliR, posted by Cam W. on September 20, 2001, at 17:30:05
> Shelli - The latest news on TMS use in animals, when focused bilaterally on the limbic system, or on the left side near the Wernecke's area (I am not absolutely positive on the positions) did show some promise. It seems that they have to get new machines with magnets that focus better.
>
> Also, the seizure-inducing TMS looks promising. It should work as well as ECT, without the problem of deflection by bones of the skull (magnetic waves travel through bone with little interference, and the burning of the scalp with the high intensity magnetism that is used. Once they overcome these (and probably some other technical problems), seizure-inducing TMS may be as good as ECT, but one will require fewer pre-treatment meds and less risk of amnesia (due to smaller regions of the brain affected - focal stimulation).
>
> I have not heard much about Vagal Nerve Stimulation, but it seems like a much more invasive procedure, even than ECT (ie. risk of infection, harm to vagus nerve, etc.).
>
> There is another implant, in the news, that looks very promising (Deep Brain Stimulation - I think). It is used to decrease the tremors associated with Parkinson's disease. I've seen some stories on it, and if they implant it properly (it is a tricky operation), it works like a damn.
>
> - CamCam, you are correct in that Vagus Nerve Stimulation is a much more invasive procedure. But for those for whom medication and ECT are ineffective, it may be a very good option. It was probably not appropriate to suggest it to Phoenix Girl.
Phoenix Girl, I do remember why the NIMH doctor was steering me away from the trials. He said the trials needed to be longer and they needed to have followup, which was not available at the time. If you can confirm this doctor is reputable, etc. I think you have a good shot. I think 15 sessions may be realistic from what I recall. Please though, do check that this doctor is authorized legally to use this technique outside the trials, because if he's not, it will be you that gets hurt if a discontinuation occurs. You are young and have plenty to time to pay back loans, etc. Also make clear what rights you are signing away and make sure you are comfortable with them. And let us know what's happening, either way. I may be the next one in line. $50 a pop is less than therapy < g >.
Shelli
Posted by PhoenixGirl on September 21, 2001, at 15:50:41
In reply to Re: ECT, TMS, , ETC..... Phoenix Girl, Cam » Cam W., posted by shelliR on September 20, 2001, at 19:15:31
Thanks everyone for your thoughts. I'm still undecided about whether to do TMS or ECT first, but I have an appointment with the TMS doctor in early October. I asked him about the legality question, and he said something like doctors use treatments for unapproved uses all the time. I guess that's like if a doc used Mirapex for depression. That's legal, but Mirapex is not approved by the FDA for depression. Anyway, I have not heard about people being hurt by TMS, and I know a woman who just got it from this doctor, and she is feeling better. She's not *well*, but she's better. My pdoc doesn't want me to try TMS because he's concerned that it hasn't been studied enough. There is something off about a doctor charging for an unproven treatment, and I think the TMS doctor is doing it because he wants to see his name in lights eventually. For being one of the first to use TMS.
What concerns me about the ECT is that I will have memory problems (the nature of which seems unpredictable), I'd have to be inpatient, won't have much of a support network, and I'd have to spin a web of elaborate lies because my family and coworkers will want to know where I am. The memory problem is the biggest worry for me. I'm only 23, I don't want to live like a senile old person. I can take the memory deficits that are short-term, but I fear having my ability to remember things in the future will be impaired. Like, where did I put my keys?, why did I come to the grocery store to get?, etc. However, I would be getting bilateral, and I don't think I'd need the full 12 initial treatments because I'm not so depressed right now that I'm actively suicidal. I'm just really scared about the memory problems because I don't even have family or friends to help me. Does anyone have suggestions and thoughts about my ECT concerns?
I really need a mood improvement, because depression has impaired my ability to make friends. I come across as flat, disinterested, and well, depressed. My anxiety and lack of experience make it hard for me to talk to people or show my personality. The three people I've met in Atlanta so far have all stopped calling me and actively avoid me when I've tried to reach out to them. This is a pattern in my life, and it makes me more depressed. So you see, this is an awful cycle that I haven't broke free of yet. I've improved, but the improvement has been so glacier-slow, I fear my youth will be lost when/if I get well. Well, whatever I do, it will be after October 8th, because that's when I come back from visiting my one friend that I made in college. We had a lot of fun together, though my depression almost drove her away, and I really want to spend time with her without memory problems. Anyway, this is where I'm at right now. A strange phenomenon that has happened in the last few weeks is that I feel somewhat better than usual. I don't know what happened, but that improvement came after my doctor suggested that I have ECT. Maybe my mood improvement is coincidental, or maybe it's because I know I have access to relief from depression, regardless of the side effects. We'll see if this lasts through my PMS time that is coming up soon.
> > Shelli - The latest news on TMS use in animals, when focused bilaterally on the limbic system, or on the left side near the Wernecke's area (I am not absolutely positive on the positions) did show some promise. It seems that they have to get new machines with magnets that focus better.
> >
> > Also, the seizure-inducing TMS looks promising. It should work as well as ECT, without the problem of deflection by bones of the skull (magnetic waves travel through bone with little interference, and the burning of the scalp with the high intensity magnetism that is used. Once they overcome these (and probably some other technical problems), seizure-inducing TMS may be as good as ECT, but one will require fewer pre-treatment meds and less risk of amnesia (due to smaller regions of the brain affected - focal stimulation).
> >
> > I have not heard much about Vagal Nerve Stimulation, but it seems like a much more invasive procedure, even than ECT (ie. risk of infection, harm to vagus nerve, etc.).
> >
> > There is another implant, in the news, that looks very promising (Deep Brain Stimulation - I think). It is used to decrease the tremors associated with Parkinson's disease. I've seen some stories on it, and if they implant it properly (it is a tricky operation), it works like a damn.
> >
> > - Cam
>
> Cam, you are correct in that Vagus Nerve Stimulation is a much more invasive procedure. But for those for whom medication and ECT are ineffective, it may be a very good option. It was probably not appropriate to suggest it to Phoenix Girl.
>
> Phoenix Girl, I do remember why the NIMH doctor was steering me away from the trials. He said the trials needed to be longer and they needed to have followup, which was not available at the time. If you can confirm this doctor is reputable, etc. I think you have a good shot. I think 15 sessions may be realistic from what I recall. Please though, do check that this doctor is authorized legally to use this technique outside the trials, because if he's not, it will be you that gets hurt if a discontinuation occurs. You are young and have plenty to time to pay back loans, etc. Also make clear what rights you are signing away and make sure you are comfortable with them. And let us know what's happening, either way. I may be the next one in line. $50 a pop is less than therapy < g >.
>
> Shelli
Posted by Craig on September 22, 2001, at 1:46:39
In reply to Re: ECT, TMS, , ETC..... Phoenix Girl, Cam, posted by PhoenixGirl on September 21, 2001, at 15:50:41
> What concerns me about the ECT is that I will have memory problems (the nature of which seems unpredictable), I'd have to be inpatient, won't have much of a support network, and I'd have to spin a web of elaborate lies because my family and coworkers will want to know where I am.
===========================================My mom has a friend who is currently undergoing ECT as an outpatient, three times per week. Why does your pdoc say that you would have to be an inpatient for your treatments?
Posted by PhoenixGirl on September 23, 2001, at 14:59:32
In reply to Re: ECT » PhoenixGirl, posted by Craig on September 22, 2001, at 1:46:39
I would have to be inpatient because I have no one to help me during the treatments. Like in driving me to and from, etc. What's the ECT like for your mom's friend?
> > What concerns me about the ECT is that I will have memory problems (the nature of which seems unpredictable), I'd have to be inpatient, won't have much of a support network, and I'd have to spin a web of elaborate lies because my family and coworkers will want to know where I am.
> ===========================================
>
> My mom has a friend who is currently undergoing ECT as an outpatient, three times per week. Why does your pdoc say that you would have to be an inpatient for your treatments?
Posted by Craig on September 25, 2001, at 3:24:48
In reply to Re: ECT, posted by PhoenixGirl on September 23, 2001, at 14:59:32
So far, my mom's friend (who is nearly 80 years old) has only had 2 treatments. She says she doesn't feel any better yet. I'll keep you posted about her condition in another week or so. By the way, she has had to be at the hospital by 6 AM and I can see how that would be a problem for someone who hasn't anyone to help them. She isn't in any condition to drive herself home, so I can see how your circumstances would require you to be inpatient.
I don't know why, but it had never occurred to me that someone 80 years old could have a case of depression so severe that it required ECT. I guess old age offers no immunity. In her case, she had her first episode of depression almost 20 years ago, after being treated successfully for cancer. She's been on lithium and antidepressants ever since and had done very well up until last year. Her relapse into depression doesn't seem to be related to anything and that worries me all the more. I don't like to think that this beast, once tamed, could return in full fury at any age.
======================================I would have to be inpatient because I have no one to help me during the treatments.
Like in driving me to and from, etc. What's the ECT like for your mom's friend?> > What concerns me about the ECT is that I will have memory problems (the nature
of which seems unpredictable), I'd have to be inpatient, won't have much of a support
network, and I'd have to spin a web of elaborate lies because my family and
coworkers will want to know where I am.
> ===========================================
>
> My mom has a friend who is currently undergoing ECT as an outpatient, three times
per week. Why does your pdoc say that you would have to be an inpatient for your
treatments?
This is the end of the thread.
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