Psycho-Babble Medication Thread 836941

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Re: ECT...I am scared to death » john51

Posted by IAMtheWalrus on June 28, 2008, at 8:20:23

In reply to ECT...I am scared to death, posted by john51 on June 28, 2008, at 6:12:06

> I have been to countless pdocs over the years and have tried just about every possible pmed and many combinations. My pdoc is basically saying that the only thing left to try is ECT. I have agreed to do it but I am SCARED TO DEATH at the prospect of the memory loss, possible loss of cognitive abilities, and from what others have told me...terrible headaches between treatments.
>
> Has anyone out there got any thing to offer either pro or con involving ECT???
>
> PLEASE HELP!! I AM DESPERATE!

I had 24 treatments back in 1998. I got really bad headaches the day of the treatment..but they only lasted about 3-4 hrs. I did have some memory loss-i lost about 3 mos. before my treatments, and the 2 months in the hospital are very vague, but i have an excellent memory now and no cognitive impairment. ECT works for most people...it helped me. Best wishes, it's really nothing so terrible that's worth worrying too much about.


-W


 

Re: ECT...I am scared to death » john51

Posted by Racer on June 28, 2008, at 9:31:16

In reply to ECT...I am scared to death, posted by john51 on June 28, 2008, at 6:12:06

Before I say anything about ECT, let me ask if you've tried rTMS? My doctor was pretty excited about it, said it was a good option, and he had been sending his patients to Canada to have it done for a longish time before it was approved. If you are concerned about ECT, and haven't tried rTMS, it might be worth trying it first.

As for ECT, I haven't had that done. A good friend of mine had 30 treatments a few years ago -- and is so pleased with the results that he's encouraged me to think about it. I like and trust my doctor, and if he recommended it, I'd consider it.

My friend said that he is aware of having a bit of cognitive impairment afterwards, but thinks that's at least partly because he was so self-conscious in looking for it -- you know how sometimes you can't quite remember something? That's normal, but he thinks when he does it, he is more likely to blame the ECT, rather than distraction, normal aging, the view of a gorgeous woman walking by, all the things that we normally blame for such events. He really hasn't had anything negative to say about his experience, and afterwards, he's been able to maintain remission on the medications which obviously hadn't worked before the ECT.

He also has a great attitude, which probably helps him -- he said something along the lines of "I may have lost a few points off my IQ, but that still leaves me ahead of most of the world..." I might envy his attitude as much as I envy his remission. (A lot of that is his life -- he's doing something that fits him so well, and is so satisfying for him. I truly believe that we most of us could find that sort of niche, it would augment our medications very effectively. I don't mean we'd "pull ourselves up by our bootstraps," because well-fitting life or not, he became depressed enough to have to go off work. I just mean that having something satisfying to do, something we feel competent and successful doing, would probably improve the effectiveness of any antidepressant out there. And I really hope that makes sense.)

Also, the other person I knew who had ECT had a very different story. She never struck me as depressed, so much as dissatisfied with her life. She had fired doctors for saying that maybe therapy would be helpful for her, and focused exclusively on finding the magic pill that would fix the way she felt. She was not satisfied with the results of the ECT, complained about the memory loss, complained it hadn't worked, etc. I really wasn't surprised that she did not have a good outcome.

I'm sure that there are many similarly negative stories out there, and there must be some people who have a terrible time with it. And there are those who have a good outcome. I hope that the negative stories don't frighten you too much and that the positive stories allow you to consider this option objectively. And I very much hope that my friend's stellar outcome cheers you.

I wish you the very best. Let us know what you decide.

 

Re: ECT...I am scared to death

Posted by linkadge on June 28, 2008, at 10:39:42

In reply to Re: ECT...I am scared to death » john51, posted by IAMtheWalrus on June 28, 2008, at 8:20:23

>ECT works for most people

I disagree.

>Best wishes, it's really nothing so terrible >that's worth worrying too much about.

I also disagree.

If you're terrified, don't do it. Remember, this is your choice.

Linkadge

 

Re: ECT...I am scared to death » linkadge

Posted by IAMtheWalrus on June 28, 2008, at 11:59:27

In reply to Re: ECT...I am scared to death, posted by linkadge on June 28, 2008, at 10:39:42

> >ECT works for most people
>
> I disagree.
>
> >Best wishes, it's really nothing so terrible >that's worth worrying too much about.
>
> I also disagree.
>
> If you're terrified, don't do it. Remember, this is your choice.
>
> Linkadge
>

I don't care if you disagree. Have you ever had ECT? I did and it kept me from killing myself. FACT: ECT is the most effective treatment for Major depression!

-W

 

Re: ECT...I am scared to death

Posted by Phillipa on June 28, 2008, at 12:33:23

In reply to Re: ECT...I am scared to death » linkadge, posted by IAMtheWalrus on June 28, 2008, at 11:59:27

Two stories one when I was a new nurse and decided to accept a day job in psych. A girl probably in her 20's the whole staff was in disbelief as I assume she had been suicidal well before I started working she had only one treatment and was fine. Fixing her nails and hair, happy so much so that the staff thought she'd been faking the depression. So great outcome that story. Second one was a college girl who was suicidal and had ECT. She had to quit college as memory problems we had the same pdoc. I asked him why she'd had ECT and he replied she was so suicidal that was the only way to stop her from the S word. And he said it would probably be three months before she would be good enough to have her memory. Bright note on this she was functioning in the community quite well, driving and stuff like that so I don't feel it's all good or bad individual. Hope this helps Phillipa

 

Let's keep it civil »Linkadge » IAMtheWalrus

Posted by Deputy Racer on June 28, 2008, at 15:29:21

In reply to Re: ECT...I am scared to death » linkadge, posted by IAMtheWalrus on June 28, 2008, at 11:59:27

This isn't a PBC to either of you, but it is a reminder that this site has guidelines about civility, and about generalizations.

If you have any questions about the civility guidelines, please read the FAQ, at http://www.dr-bob.org/babble/faq.html#civil

Thank you very much for your cooperation on this matter.

Deputy Racer

 

Re: ECT...I am scared to death

Posted by BGB on June 28, 2008, at 18:11:40

In reply to Re: ECT...I am scared to death » john51, posted by Racer on June 28, 2008, at 9:31:16

> Before I say anything about ECT, let me ask if you've tried rTMS? My doctor was pretty excited about it, said it was a good option, and he had been sending his patients to Canada to have it done for a longish time before it was approved.


My psychiatrist happens to be one of only TWO shrinks in the US that currently offer rTMS on a non-experimental basis. He admitted that it had a less than 40% success rate and that it would cost me between $1,500 - $4,000.

I'm thinking that I'm going to go with the ECT (which my psychiatrist also recommended), which is [generally accepted to be] 80% effective and 100% covered by my insurance. I just have to find someone who will keep me during the treatments because I live alone and they won't do ECT unless you have someone to take care of you. :( Most insurance, including mine, won't cover inpatient ECT treatment.

 

Re: ECT...I am scared to death

Posted by bleauberry on June 28, 2008, at 19:55:32

In reply to ECT...I am scared to death, posted by john51 on June 28, 2008, at 6:12:06

I'm one of those with a very negative take on ECT. I had 12 treatments. I've gone over it here in detail several times in other threads, so I won't repeat it.

I did not feel there was any option at the time. I was at the end of hope, the end of med choices. In fact, it was only my twisted perception from being depressed so long that had me feeling that way. There was plenty of hope and medicines to try. A common mistake I think is when docs fail to think outside the box and try medicines that are not necessarily linked directly to the diagnosis. Refractory anxiety cured with lithium, refractory depression/fatigue cured with ritalin+memantine, refractory depression improved by not taking antidepressants (other meds instead), on and on. The STAR*D clinical trials got something like 80+ % of people into remission with only 1 or 2 drugs at any given time.

All I will say about ECT is that the statistics are not supported by fact. I don't know where they get those statistics. ECT is not any more effective than meds if you look at clinical trials. Memory loss can be severe, longlasting, or a lifetime. If someone feels they are at the end of the line, and ECT gives them hope, well, I guess that's a good thing. When I came out of ECT, I was so cognitively dull and had so much memory loss that it was actually a good thing because it was kind of like starting a new chapter. Even though I was no better than before, at least now I had sort of a new start with some new hope because I had forgotten how bad things were that got me there in the first place.

The actual treatments are not bad. You sit in the hospital waiting room, they call you in, lay you down, hook up an IV, and next thing you know you are at home and have no recollection of what happened.

 

Re: ECT...I am scared to death » bleauberry

Posted by Zeba on June 28, 2008, at 20:56:44

In reply to Re: ECT...I am scared to death, posted by bleauberry on June 28, 2008, at 19:55:32

I agree with bleauberry. I had only 7 ECT treatments right unilateral. Was over a year ago. I am still having short term memory problems and problems with orientation. I can't remember new things I read one day later. I also can't find my way from point a to point b. I have word finding problems, and my spelling stinks now. Thanks to spell check, I usually don't seem that bad.

I reasearched thoroughly and even did it only two days per week rather than the standard three times per week. I would never do it again.

I am on Parnate now, and it works great for me.

 

Re: ECT...I am scared to death

Posted by linkadge on June 29, 2008, at 15:26:30

In reply to Re: ECT...I am scared to death » linkadge, posted by IAMtheWalrus on June 28, 2008, at 11:59:27

I personally don't think ECT is the most effective treatment for depression.

The statistics that suggest this are based on very short term results, i.e. measurments taken quickly after treatments cease. While patients may respond more quickly to ECT than other treatments, there is little data to suggest that ECT is more effective then chemical antidepressants in the long run. In this light, I would definately not consider ECT to be more effective than chemical antidepressants.

Long term effectiveness is really what matters. If all you want is a quick, short term, brain damaging boost, then sure ECT looks great. But, if you want to get better and stay better, then the stats on ECT aren't in your favor.

In a few years I hope to see a more comprehensive presentation of the data on ECT. Some recent studies have indeed already adressed ECT's lack of abilility to keep patients well. They have also adressed the fact that older statistics on ECT's effectiveness and side effect profile are indeed incorrect.

I would hate for somebody to decide to undergoe the procedure under the framework of older, false and misleading information regarding ECT.


Linkadge

 

Re: ECT...I am scared to death

Posted by maz81 on June 29, 2008, at 16:07:56

In reply to ECT...I am scared to death, posted by john51 on June 28, 2008, at 6:12:06

I don't know what meds you've taken but I think it's unlikely that you've have exhausted every option and combination, especially as lot of pdocs tend to be quite conservative with dosages and will not prescribe "off label" meds. However, if you are a feeling desperate and want to feel better in a few weeks time then I think ECT is a great option. The chances of it working are extremely high. The frustration of going through endless med trials can take it's toll.

I had ECT seven years ago for unipolar depression and had a complete remission after 18 treatments. (I don't think most people need that many) This was sustained for five years. I only relapsed due to a hypomanic episode which led to depression. I then had ECT again for the bipolar depression one year ago. I again had a complete remission but unfortunately I relapsed after three months. I would definitely do it again if I could convince my doctor and have maintenance ECT if I relapsed.

The only side effects I have had are temporary memory loss around the time of the ECT and minor headaches directly after the treatment. I have never noticed any cognitive changes. I feel as sharp as ever. I wrote a diary during and after the ECT which was very helpful as it helped to jog my memory on things.

Good luck with whatever you decide to do!

 

Re: ECT...I am scared to death

Posted by Zyprexa on June 29, 2008, at 19:37:24

In reply to ECT...I am scared to death, posted by john51 on June 28, 2008, at 6:12:06

I would suggest if you do ECT, not to take a lot of them. I had atleast 20 or more in one year and my memory was very impaired for the last decade. I'm just slowly getting pieces back now.

 

Re: please be civil » linkadge

Posted by Dr. Bob on June 30, 2008, at 6:30:15

In reply to Re: ECT...I am scared to death, posted by linkadge on June 29, 2008, at 15:26:30

> If all you want is a quick, short term, brain damaging boost, then sure ECT looks great.

Please don't be sarcastic or overgeneralize.

But please don't take this personally, either, this doesn't mean I don't like you or think you're a bad person.

For more information about posting policies and tips on alternative ways to express oneself, please see the FAQ:

http://www.dr-bob.org/babble/faq.html#civil
http://www.dr-bob.org/babble/faq.html#enforce

Follow-ups regarding these issues should be redirected to Psycho-Babble Administration. They, as well as replies to the above post, should of course themselves be civil.

Thanks,

Bob

 

Re: please be civil

Posted by linkadge on June 30, 2008, at 19:00:54

In reply to Re: please be civil » linkadge, posted by Dr. Bob on June 30, 2008, at 6:30:15

I don't feel this is an overgeneralization and according to the following survey, more psychiatrists than not agree.

http://www.ect.org/resources/jama/disnews.html

If APA considers brain damage a myth, then it ignores the results of its own task force survey. Some 41 percent of psychiatrist responded, "Yes", and only 26 percent said, "No," when asked, "Is it likely that ECT produces slight or subtle brain damage?"

Don't worry though, I need to take another extended break from this board anyway, since my views are starting to contrast with the *ideals* of this board. If I become a nuisance, you could remove my username, password and registration info as I have requested on previous occasions.


Linkadge

 

Re: please be civil

Posted by Sigismund on June 30, 2008, at 20:35:33

In reply to Re: please be civil, posted by linkadge on June 30, 2008, at 19:00:54

Witnessing my mother have it I thought then and feel now that it says a lot about the world we live in that this is/may conceivably be/is believed to be the best we can do.

 

Re: ECT...I am scared to death » john51

Posted by chiron on July 2, 2008, at 20:27:18

In reply to ECT...I am scared to death, posted by john51 on June 28, 2008, at 6:12:06

I am PRO ECT, but of course individuals vary. Like I've mentioned on previous posts, after only 5-6, I felt better than I ever had in my life. The higher mood didn't last, but I was out of my deep hole that I had gotten into after a bad med trial (adderall & abilify).
I made the decision after talking to a few people who also had very positive experiences from it. I believe the 80% scientific studies are correct.
I did have some memory loss, but it wasn't debilitating and it was worth it. Definitely no brain damage.

 

Re: ECT...I am scared to death

Posted by linkadge on July 2, 2008, at 21:51:24

In reply to Re: ECT...I am scared to death » john51, posted by chiron on July 2, 2008, at 20:27:18

>I did have some memory loss, but it wasn't >debilitating and it was worth it. Definitely no >brain damage.

Unfortunately, brain damage isn't always something that can be subjectively diganosed.

Linkadge

 

Re: ECT...I am scared to death

Posted by BGB on July 3, 2008, at 0:55:28

In reply to Re: ECT...I am scared to death, posted by BGB on June 28, 2008, at 18:11:40

I re-read my post and I realized how anti-rTMS and how pro-ECT it was. I didn't mean it like that; I just wanted to justify my reasoning for one over the other.

I don't want to discount anyone's experiences with ECT, good or bad. I haven't had it so I don't know from first-hand knowledge, just from what I've read and been told by my doc. I know that many people have had horrible experiences, and I feel terrible about that. I have an idea of what the memory loss is like; I experienced memory loss due to lithium, and it was very debilitating at the time. It still haunts me today, twelve years later. I tell my friends the same stories dozens and dozens of times. They're used to it now.

Honestly, I hate to say this, but I really don't care if ECT does cause brain damage [DISCLAIMER: I am not saying that ECT does or does not cause brain damage!!!] and even more memory loss. I would love nothing more than to put a big fat bullet in my brain right now, so a little shock damage doesn't scare me in the least--it's got to be better than the bullet. That's pretty f'd up, huh? But, it really is how I feel and that sucks.

I did convince my doc to try an MAOI before we try ECT, so in a few weeks, once I've stopped all of my AD's, I'll be on something totally new (don't know what yet). I'm keeping my fingers crossed that it can help me avoid the big E, but if it doesn't they're gonna have to juice me up!

As for rTMS, if I had a whole bunch of money, I might consider it, but I'm apprehensive of spending that much money on something with such a low success rate. I am glad that it's out there and that there are doctors like mine that are performing it as I know it has helped many people. But it's just not for me right now.

Something that is very interesting to me is MST, Magnetic Seizure Therapy, which is a hybrid of ECT and rTMS. It basically uses a big magnet to cause a seizure just like ECT does, but without the electricity. You still have to be anesthetized and everything, but supposedly there are fewer side effects than with ECT. I can't find anywhere that does it, though. If anyone does, let us all know!!!

 

Re: ECT...I am scared to death

Posted by blueboy on July 3, 2008, at 13:42:24

In reply to ECT...I am scared to death, posted by john51 on June 28, 2008, at 6:12:06

> I have been to countless pdocs over the years and have tried just about every possible pmed and many combinations. My pdoc is basically saying that the only thing left to try is ECT. I have agreed to do it but I am SCARED TO DEATH at the prospect of the memory loss, possible loss of cognitive abilities, and from what others have told me...terrible headaches between treatments.
>
> Has anyone out there got any thing to offer either pro or con involving ECT???
>

I am a bit anti-ECT, although not completely. My biggest problem with it is actually not with the procedure so much, as the failure of the Powers That Be to develop any rational protocol based on comprehensive research. Really, considering how long the procedure has been around (I know "The Bell Jar" refers to events in the 50's or 60's), the lack of solid record-keeping and research is unconscionable. If ECT were a new drug anti-depression drug being marketed by a pharmaceutical company, the FDA would laugh at the application.

In fact, the only reason we have ANY long-term statistics for broad population samples is because several states passed laws requiring psychiatrists and facilities to report all ECT treatment, including reported side effects, for six months after treatment is administered. Texas is the only one I am sure of, but I think California may have a similar law.

In spite of numerous anecdotal accounts of "ECT ruined my life", and similar accounts from some psychiatrists, and despite the frequency, expense and physical trauma of the procedure, only the most primitive attempts to quantify (much less explain) memory loss and other commonly reported cognitive problems have been made. Plus, the little work that has been done is inadequate in duration (short term only), sample size, sophistication of testing, breadth of testing, frequency of testing, controls (the best study I saw used a control group but did not attempt to regress the statistics for natural improvement in "learning the test"), etc.

And there has been absolutely no attempt to create validated protocols for testing/observation before or during a course of ECT therapy and adjusting the therapy against quantified guidelines. The protocol consists, pretty much, of people and their doctors deciding "this isn't helping" or "I'm getting more memory loss or cognitive problems than I can handle" and discontinuing therapy.

Medical science gets an "F" for ECT. They don't seem to have even a *clue* how or why it works, or for what patients. The APA's suggested informed consent form states a "20%" chance of short term memory loss; the best I can tell, however, they have no sound scientific basis for this number. They have no idea whether or not, or to what degree or in what kinds of people, long-term memory loss or cognitive disfunction may or may not occur. There is no scientifically-based protocol for maintenance treatments or adjunct drug therapy.

All this, despite the fact that the procedure has been performed on tens of thousands of patients annually for over 50 years -- Newsweek estimated 30,000 to 50,000 patients per year in 1990 -- at least some of whom claim to have had profound and permanent mental impairment.

(Even worse, most states will allow ECT to be given forcibly to non-criminal patient's, in extreme cases!)

Okay, rant over :) I would actually get ECT if I were desperate enough, especially if I were getting close to suicide. It does appear to be successful in perhaps half the cases, and extremely successful in some cases, in significantly reducing depression for a temporary period. I'd guess something like six months. And, in all fairness, a lot of people do seem to have minimal side effects. (All patients have some side effects, since all patients undergo repeated general anesthesia and severe physical convulsions. General anesthesia by itself, even without medical error, has inherent side effects such as grogginess, significant side effects (e.g. bad sore throat) perhaps 10% of the time, severe side effects (e.g. stroke) in perhaps 1 out of 10,000 cases, and causes death in perhaps 1 out of 250,000 cases. Most ECT patients report headaches and body soreness.)

In my own case, I was seriously considering getting a course of ECT, after decades of unsuccessful and often painful drug therapies for depression. Luckily I spent money at a national clinic to get a special diagnosis; I was rediagnosed from "major depressive episode" in the DSM's lexicon, to "Bipolar II", which apparently explains how badly I reacted to some of the drugs I tried. So I got a reprieve and can now try heaven-knows-how-many different new drugs, sigh.

Actually, the Lamictal I'm now taking appears to be doing some good with almost no side effects. Feel free to pray for me if you do that, or wish me well if you don't.

Bottom line: I'm scared of ECT, too. For myself, I've pretty much decided I won't do ECT unless I find myself actually forming plans to commit suicide.

 

Re: ECT...I am scared to death » blueboy

Posted by johnj on July 3, 2008, at 23:00:58

In reply to Re: ECT...I am scared to death, posted by blueboy on July 3, 2008, at 13:42:24

I appreciate your thoughtful posts. I hope the bipolar dx is correct. That is great if lamcital is working for you that could tell you something right there. Have you ever tried lithium?

I have had many dx and all the drugs have hurt me so I am trying med free. We will see it if works. I will pray for you and please send some up for me too.

johnj

 

Re: ECT...I am scared to death » chiron

Posted by Zeba on July 3, 2008, at 23:12:56

In reply to Re: ECT...I am scared to death » john51, posted by chiron on July 2, 2008, at 20:27:18

chiron

I would be interested in the 80% positive experinece from ECT that you cite. In all my research before I decided to do ECT, I never saw anything about an 80% positive experience. For me it was devastating. I have some severed impairments now from just 7 RuL treatments from over a year ago. I am getting neuropsych testing done in two weeks, and then we shall see. You should know also that my husband (before he retired) was a neuropsychologist who was very opposed to me getting ECT. He said I might as well have someone hit me over the head with a sledgehammer. I was desperate, however, to get over feeling so profoundly depressed. I was not suicidal and was going to work every day, but my pdoc at that time kept pushing the ECT until I finally gave in. I am sorry now that I did it. I also broke a tooth from the ECT and now have to have a bridge as that tooth had a root canal and then got infected and had to be pulled.

I now have a new pdoc and am now on parnate which works well for me. I still have dips into depression, but I don't stay there.

Zeba

 

Re: ECT...I am scared to death » blueboy

Posted by linkadge on July 4, 2008, at 7:55:39

In reply to Re: ECT...I am scared to death, posted by blueboy on July 3, 2008, at 13:42:24

>"Bipolar II", which apparently explains how >badly I reacted to some of the drugs I tried.

Its not necessarily that patients with bipolar II don't respond well to antidepressants. Its more, IMHO, that patients who don't respond well to antidepressants are called bipolar II.

Its good that you got something that works though (bottom line).

Linkadge

 

Re: ECT...I am scared to death

Posted by linkadge on July 4, 2008, at 7:57:43

In reply to Re: ECT...I am scared to death » chiron, posted by Zeba on July 3, 2008, at 23:12:56

70-80% is often quoted, but show me the meta analysis that came to this conclusion :)

If this statistic is not based on a meta analysis, but rather a few select studies here/there, then it is meaningless.

Linkadge

 

Re: ECT...I am scared to death

Posted by blueboy on July 4, 2008, at 9:01:47

In reply to Re: ECT...I am scared to death » chiron, posted by Zeba on July 3, 2008, at 23:12:56

> chiron
>
> I would be interested in the 80% positive experinece from ECT that you cite. In all my research before I decided to do ECT, I never saw anything about an 80% positive experience.

Neither have I. The studies I have seen tend to show figures around 45-50% for number of patients showing improvement. BTW, most of them -- well, all the ones I have seen -- have serious methodological flaws.

 

Re: ECT...I am scared to death » john51

Posted by Crotale on July 4, 2008, at 9:53:54

In reply to ECT...I am scared to death, posted by john51 on June 28, 2008, at 6:12:06

Well, I've been having ECT for the last few weeks and although I have gotten some headaches, and I've been sort of confused upon waking, those are the only side effects I've had and they're not so bad. However, memory problems are pretty common with ECT (although from what I gather from the reading I've been doing in medical journals & textbooks, the cognitive side effects generally aren't permanent).

I bet there are some folks here on Psychobabble who can suggest some meds you haven't tried yet. The challenge, more often, is finding a pdoc who's willing to prescribe them!

Why don't you try listing the medications and combos of meds you've tried? Another thing that might be helpful is giving us an idea what sort of symptoms you're trying to treat. Like for example, do you have bipolar disorder? Atypical depression? Panic/anxiety attacks? ADD? That sort of thing. Remember this is a support group and we're not going to make fun of you or anything...we're here to help.

-Crotale


> I have been to countless pdocs over the years and have tried just about every possible pmed and many combinations. My pdoc is basically saying that the only thing left to try is ECT. I have agreed to do it but I am SCARED TO DEATH at the prospect of the memory loss, possible loss of cognitive abilities, and from what others have told me...terrible headaches between treatments.
>
> Has anyone out there got any thing to offer either pro or con involving ECT???
>
> PLEASE HELP!! I AM DESPERATE!


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