Emory University Deep Brain Stimulation Study For Major Depression

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Jackiesgone Says:


For those of you suffering with Treatment Resistant Major Depressive Disorder, Emory University is doing the BEST study in my opinion.
They are implanting electrodes into "Area 25" of the brain which when placed in the correct spot, provides immediate relief from some or all of the symptoms of Major Depression.

Anyway, their study has shown far better prognosis long-term than Ketamine which is only meant for short term, emergent use (per the NIH study objective).
I mention Ketamine because these is a lot of buzz about it lately as a treatment which it is not, nor will it ever receive FDA approval for long term treatment.

At Emory they implant the electrode during surgery which you are awake for. When they tap into the spot that gives you immediate positive response, the electrode goes there and then you have a little box you take home which can adjust the amount of the current when a button is pressed while the box is held next to your head.

That's the study I wanted to participate in but there are a few catches. One I didn't qualify because I have Essential Tremor in my medical records which a 2nd pinion showed I DO NOT HAVE . The shaking the doctor observed in my hands was due to the adderall I have to take every morning to deal with chronic fatique. So if there is any neurological disorder, you won't qualify.
2. You must have private insurance or Medicaid which will pay for the cost of the treatment and surgery,.

3. You pay all costs getting to and from Atlanta as well as all your housing and other expenses while there.

To add to the list of Emory's unrealistic criteria, there is a 10 year follow up period after you have the surgery which requires you to travel back to Emory for regular check ups and other appointments for a period of 10 years.

My qualm was THIS IS A DAMN STUDY! WHY ARE HUMAN CLINICAL TRIAL PARTICIPANTS PAYING FOR EMORY TO END UP WITH ALL THE GLORY IF THIS IS SOME DAY USED AS A TREATMENT??

They are going to profit from this someday so why are the sickest people paying for them to make money?? You know we will never be able to get the surgery if it's approved for use for MDD because no insurance plan would cover brain surgery for a mental disorder!

Are they serious. I say NO ONE SHOULD BOTHER PAYING TO BE IN ANY HUMAN CLINICAL TRIAL STUDY- EVER!!

I'm working on trying to make this a federal law right now. People like myself will end up dying from the disease or seeking unsafe treatments outside the US.

If they want to experiment on us, they get plenty of Federal funding for it, WHY MAKE A PATIENT PAY??

And to top it off, I would love to have the name of just one insurance company that will pay for experimental brain surgery for a condition classified as "Mental Health Treatment"??

I've worked in the health insurance industry for 10 years, I've NEVER seen a plan or tax free health fund that would ever cover experimental treatments.

As a matter of fact, I hardly ever even saw mental health/substance abuse as a covered benefit until the last few years. If it is covered, the benefits are typically minimal at best.

So if anyone at Emory happens to see this post, PLEASE let us know how to get funding to participate in this study!!

What I think Emory doesn't realize is that MDD is the #2 cause of disability world wide, which means people such as myself, have no money, are not able to work, and are homeless due to this disease. Getting disability payments from Social Security has been a 5 year battle I'm still fighting.

I haven't had any income for 5 years and haven't even had to file an income tax return for 7 years because I haven't earned over $1000 a year. The last time I earned money was in 2005 due to this disabling condition.

Something such as this could be the one thing that saves my life, I'm at the end of the road, can't struggle much longer and don't see much reason to continue on living in a car.

My quality of life has been 0 since 2006 and I have NEVER had a remission from the disease since 2006, not even for a day.
Why they put such stupid requirements on something that might save my life and give my child the mother he deserves is beyond me.

I beg them to reconsider and ask the Federal government for participant funding since most of us are as bad off or worse than I am. Please, Obama is doling out cash to everyone, why not at least ask??

Or if you are going to do such a "promising study", please DO NOT feature it on CNN over and over again since it raises someone's hopes only to be quickly dashed in a 30 second phone call to Emory.

It's irresponsible for Dr. Sanjay Gupta, on staff at Emory and a CNN correspondent, to do a piece on this study when 98% of people with MDD can't afford the study and will NEVER be able to afford the surgery if it's ever approved!

Unless you don't care??



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Verwon Says:

I am sorry that you are so upset and frustrated.

However, by its very nature an experimental study is exactly that and the government places very heavy restrictions on what is required for someone to qualify to participate in them. Thus it is not the entity doing the study that decides who does or doesn't qualify. There are certain laws they must adhere to.

Additionally, it someone does qualify, they usually receive all needed surgery, medications and care free of charge and do not need to worry about having insurance to cover it.

Learn more MDD details here.

Have you tried sending your opinions and ideas to the university?

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jackie Says:

Not yet, they disqualified me by phone because one neurologist said I might have essential tremor while a second said he saw no evidence of it and the other doctor likely thought my hands were shaky from the high dose of adderall i was on at that time.

And, no nothing is covered for me to get help. I've been trying for over 4 years and have nothing to show for it but debt.

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Linda Says:

I've been able to participate in a study at a major hospital and they paid for everything--food & stay at the hospital, meds, etc. Most studies do, I think. Too bad about Emory not doing that.

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Paula Says:

You need to google 'Social Security Lawyers' and pick one in your area. You DO NOT have to pay for a consultation, and they should be able to guide you to a successful SS ruling for disability. They get an automatic percentage of your initial payment, government sends them the check automatically, you do not pay one dime if unsuccessful. If that happens, try again with another one, you should be able to get money for you and your child to have a decent life!! I will be thinking about you!

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