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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 6 of 6. This is the beginning of the thread.
Posted by PhoenixGirl on September 15, 2001, at 13:21:23
Well, here's what's been going on. Last Monday I saw the doctors at Emory hospital, and they have encouraged me to have ECT. They said the memory problems are not bad enough to interfere with me going to work. The doctor I spoke to is heading the Emory study on Transcranial Magnetic Stimulation, and I asked about participating in the study. I can't because you have to stop all meds for the study, and I can't do that because the depression is too intense. There is a doctor in Atlanta who is doing TMS outside the study, and I could go to him, but the Emory doctor doing the TMS study recommended I go with ECT, not TMS. ECT is proven to be effective, while TMS is still being studies. If I did TMS, I would have no memory problems, but I could be spending a lot of money on something that won't work. I wish I could try TMS first, and if it doesn't work, go with ECT, but I don't have enough money to try both. It's either-or. So, I plan to go inpatient in October for the ECT. My hope is that it will lift me up enough that I am more able to go out and meet people. My worst problem is the loneliness, but I believe there is a biological component to my depression that must be controlled through medical means.
That's the news on me. I wanted to ask people for some advice on how I can be in situations where I meet people I'm interested in. Places like the mall aren't good because it's so random and it's not expected if you talk to strangers. The kind of people I like are deep brooding people. Probably because I'm so brooding myself! I've thought about going to a club with an aesthetic I like, and maybe talking to people there. But other than that, I don't know what to do. It's so hard to find your niche in Atlanta. Meeting people is easier in college. The people I work with suck, they're so conservative and dull and too old for me. I wish I could find a place to work with more youth and energy, more excitement. I just don't know how to go about finding people. In therapy, we talk about what to do when I'm interacting with people, but I need to find out how to be in situations in the first place where I meet people. Anyway, I'd appreciate some feedback, thanks.
Posted by Cruz on September 15, 2001, at 15:26:36
In reply to Update on me and the ECT issue, posted by PhoenixGirl on September 15, 2001, at 13:21:23
I might have an idea that could help you. If you are someone with an elevated cortisol level, which many of us diagnosed with depression have, you might respond well to treatment to lower cortisol. Using this theory I started treatment with ketoconazole. Its been about 2 weeks now and I feel wonderful. If its something you might be interested in I can provide a little more info. I can't provide a great deal, since I'm working to find the best dosage, treatment schedule etc..
> Well, here's what's been going on. Last Monday I saw the doctors at Emory hospital, and they have encouraged me to have ECT. They said the memory problems are not bad enough to interfere with me going to work. The doctor I spoke to is heading the Emory study on Transcranial Magnetic Stimulation, and I asked about participating in the study. I can't because you have to stop all meds for the study, and I can't do that because the depression is too intense. There is a doctor in Atlanta who is doing TMS outside the study, and I could go to him, but the Emory doctor doing the TMS study recommended I go with ECT, not TMS. ECT is proven to be effective, while TMS is still being studies. If I did TMS, I would have no memory problems, but I could be spending a lot of money on something that won't work. I wish I could try TMS first, and if it doesn't work, go with ECT, but I don't have enough money to try both. It's either-or. So, I plan to go inpatient in October for the ECT. My hope is that it will lift me up enough that I am more able to go out and meet people. My worst problem is the loneliness, but I believe there is a biological component to my depression that must be controlled through medical means.
> That's the news on me. I wanted to ask people for some advice on how I can be in situations where I meet people I'm interested in. Places like the mall aren't good because it's so random and it's not expected if you talk to strangers. The kind of people I like are deep brooding people. Probably because I'm so brooding myself! I've thought about going to a club with an aesthetic I like, and maybe talking to people there. But other than that, I don't know what to do. It's so hard to find your niche in Atlanta. Meeting people is easier in college. The people I work with suck, they're so conservative and dull and too old for me. I wish I could find a place to work with more youth and energy, more excitement. I just don't know how to go about finding people. In therapy, we talk about what to do when I'm interacting with people, but I need to find out how to be in situations in the first place where I meet people. Anyway, I'd appreciate some feedback, thanks.
Posted by PhoenixGirl on September 18, 2001, at 16:20:57
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 Cecilia on September 19, 2001, at 2:52:08
In reply to Update, and need advice: Should I do ECT or TMS? , posted by PhoenixGirl on September 18, 2001, at 16:20:57
> 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.Question: re the doctor doing TMS, how did he get permission to use it before FDA approval? I tried to get in a TMS study but wasn`t allowed due to taking blood pressure medication; but my understanding is that at present it can only be used in studies. If you can get the TMS from a qualified doctor it would make a lot more sense, in my opinion,to do that first and avoid the risks of ECT. But whatever you decide don`t make the decision on financial terms, figure out what`s best for you and borrow the money if you have to.
Posted by Anna P. on September 19, 2001, at 11:20:36
In reply to Update, and need advice: Should I do ECT or TMS? , posted by PhoenixGirl on September 18, 2001, at 16:20:57
> Please, can you share the name of the doctor,
and his phone number. I would like to find somebody who doesn't do the study.Anna P.
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 PhoenixGirl on September 19, 2001, at 15:19:45
In reply to Re: Update, and need advice: Should I do ECT or TMS? , posted by Anna P. on September 19, 2001, at 11:20:36
Hello again. Cecilia, I don't know for sure how it is he can do it without FDA approval, but to have him do it you have to sign a waiver form. If something adverse happened during the treatment, the patient couldn't sue. Anna P., yes I can give you his name and number. I don't know if he wants it advertised on this board or not. Maybe he would, I don't know. Email me at thephoenixgirl@hotmail.com, and I'll give you the info.
> > Please, can you share the name of the doctor,
> and his phone number. I would like to find somebody who doesn't do the study.
>
> Anna P.
>
>
>
>
>
>
> 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.
This is the end of the thread.
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