VNS Therapy?

Birdbomb

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Medication did not control my simple and complex seizures. I was on Dilantion the entire time from my firist TC and never had another one. I developed intolerance's to several medications, allergies to a few, toxic on some and severe anger issues with others. VNS was offered. I took 6 months to research and think it over. I talked to the few I found who had one. <10,000 had it by the time I was implanted.

I have seen many people have success stories and are very satisfied, however I have also seen some of the most horrendous side effects from others. Proper screening and complete disclosure are the beginning points. Too many patients and doctors are not properly informed.
 

brain

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Let's see it all from a different perspective of things ...

From overall many postings I have read, from my OWN
perspective - my ratings of the VNS success:

VNS alone - very poor

VNS with meds - 50/50

VNS removed - very high after a time being

VNS success - scarce

I don't see that many success stories on the VNS like it should
be and when I was confronted of VNS, I asked a lot of questions
which in fact I was never answered! The Epileptologist declined
to answer any question I had! Then another Physician informed
me (elsewhere) that they get kickbacks on those things (VNS).
Whether he speaks the truth or not, I can't answer that for a
fact.

For by reason of lack of my questions being answered, I backed
off. Indeed, I was flooded with the VNS kit - everything from
DVD to books to everything but it just never answered a single
question I had in mind, in fact, to me --- personally --- it was
awfully "pushy".

To illustrate it in another angle:

Let's say you are in a car dealership and you want this specific
pick-up truck and the Salesman had pushed you literally over the
fence with an expensive SUV that was loaded with expensive goodies
galore and going so far to say "I'll throw this in for 'free' ..." and all
you wanted was that simple basic pick up truck. And yet, you ended
up leaving the lot with a leather jam-packed with GPS, TV, Climate
Controlled, yadda yadda yadda - SUV that you didn't even have
in your mind in the first place but the Salesman influenced you that
you had to have it because it ranked number 1 in safety, number 1
in this, and that, and all sorts ... And guess who gets the bonus?
The salesman, and guess who overspent on it all - you! You meant
to only spend $20k and ended up spending $75k and stuck with
monthly payments. Then the next thing you know, that SUV has
spent more time in shop than being on the road due to recalls,
and all sorts of problems where you had just wished you had bought
that simple $20k pick up truck! (But of course, the Salesman wouldn't
profit very much from selling you the new pick-up anyway.)

Different story - Different picture - but same application.


WHY?

Because the Doctor wouldn't get much money by seeing and
treating you via medication / medications if he/she had to only
see you for the first couple of months, then only 2 or 3 times a
year after that when there's $300K to $600K Hospital Surgical
Procedure riding on this....

Does this all make sense now?
 

NancyB

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If in fact any kickbacks were involved, which I don't know for sure, does the doctor have to return them if the device has to be explanted?
 

NancyB

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Also, who actually would have gotten the "kickback", the neurologist who recommended the surgery or the surgeon who implanted it?
 

Cint

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I don't think you guys (and gals) are really listening to what I am saying. The VNS therapy was a LAST resort for me, after an unsuccessful left temporal lobectomy, 10 medications that didn't help control CP seizures that went into TCs, and then the deep, deep depression after the brain surgery.

Sharon,
Where are the statistics on all medications, brain surgeries and other treatments for epilepsy? There are many side effects from medications, some of which can cause debilitating conditions for life. And for brain surgery, it made my seizures worse, the depression was almost unbearable---I was suicidal afterwards, and then the shrink put me on a medication that caused me to be a Diabetic, Type 1, as an adult. Now, on top of meds for seizures, depression, thyroid, blood pressure, I have to take insulin shots 5 times a day.

Then another Physician informed me (elsewhere) that they get kickbacks on those things (VNS)
Doctors also get kickbacks from the pharmaceuticals. That is why there is so much advertising on Television about different meds. Pharmaceuticals want $$$$$, too!!
They're more greedy than people @ Cyberonics!!

I don't see that many success stories on the VNS like it should
be and when I was confronted of VNS
I don't see many success stories on brain surgery, either, like they said when I was confronted with it, long before the VNS was available.

Does my story now make sense?!!
 

brain

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Just a little background info

Cybertonics and kickbacks have been on the news, if you
do a research, you would be overwhelmed with the response,
insomuch - the accountability factors in Cybertonics was so
lopsided that nothing aligned accordingly:

from REUTERS:

www.reuters.com - Cybertonic's latest dilemma

Cyberonics urges shareholders to re-elect directors
Wed Jan 10, 2007 11:23am EST
Stocks

Cyberonics, Inc.
CYBX.O
$20.95
-0.42-1.98%
9:35am EST

CHICAGO, Jan 10 (Reuters) - Cyberonics Inc. (CYBX.O), the controversial maker of an implantable device used to treat epileptic seizures and chronic depression, on Wednesday urged shareholders to re-elect its directors at its annual meeting on Feb. 1.

The letter, released in a regulatory filing, said an activist shareholder group was seeking to elect its own nominees and asked holders to support the current slate of directors.

In the filing, the company said net sales for fiscal 2006 were $123.4 million, compared with $103.4 million in fiscal year 2005.

In November 2006, Houston-based Cyberonics Chief Executive Robert "Skip" Cummins and Chief Financial Officer Pamela Westbrook resigned following an investigation that revealed errors in its accounting practices.

Just days before the resignations, billionaire investor Carl Icahn announced that he had taken a 606,688-share stake in the medical-device maker.

Since then, shareholder Metropolitan Capital Advisors demanded the removal of Cyberonics Director Kevin Moore from the board, citing his long-standing ties to Cummins and Moore's role in approving Cummins' compensation package for Cummins.

Neither Metropolitan nor Icahn was immediately available to comment.

Shares of Cyberonics were down 40 cents, or nearly 2 percent, at $20.08 on the Nasdaq in late morning trading.
Since then (2007) they've begun to lay-low because
of accountability issues.

Kickbacks are nothing new in Medical fields - from Prescriptions
to Surgical Items ... it is OLD NEWS! Been around for years and
Congress and FDA has been on the case for decades; however
many still practice this "under the table" or even play a game of
"Let's make a deal" by going out of this Country into another
Country where they are outside of United States where such
transaction can be performed without anyone knowing it.

As not that long ago, FDA (Food and Drug Administration) finally
put their food DOWN and meant what they said - all the way down
to "no more freebies or samples".

Kickbacks isn't all in the Medical Field only, it happens everywhere;
from Phone Solicitations to Contractors - no matter what business
it is - if they can get you tirade up to a brand name and sell it,
and make a huge profit off of you (buyer and/or insurance and/or
both of you) - the Company often rewards such people for this
in all kinds of things from vacations, vehicles, money, to all sorts
where it's outlandish and outrageous.

So who benefits? The One who profited by selling such said item
to the patient or customer or client. There are kickbacks even in
Insurance Companies, selling unnecessary policies that you do not
even need. That's why Corporations and Companies like good smooth
talking salesmen, even if they are Doctors (unfortunately).

Not all Medical Doctors are Doctors at heart which are sad, some
are greedy. So it does pay to do your homework and I've always
been a very strong advocate for 2nd opinions and if necessary even
a 3rd opinion ... by all means from someone else that isn't associated
or related to the party when it comes to one's health and well being.

Am I making sense?

It does pay to do your homework. A genuine Doctor at heart cares
only for the well being of his/her own patients. In fact, he/she would
even careless if you had an emergency and didn't have the money for
a co-payment; they care that much for your health over money. For
they would rather see you well than to be sick and being stuck at
home all because of "no co-payment" or such manner. There are
genuine Doctors who refuses to retire, instead - moves on to Free
Clinics to help those who can't even afford anything, just as there
are Physicians out there who takes their own precious time to go out
there to help homeless shelters or Free Clinics ... those, my dear, are
genuine Doctors ... they wouldn't take a kick back in the world. In
fact, they HATE THEM!

I've been told this numerous times by them - all sorts - from Surgeons
to Specialists to Regular Physicians ... they are worth their weight far
more than all the diamonds and gold in the world can pay them for!

:green:
 

brain

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LOL Cindy - you just posted right while I was typing all
this out!

:)

Your answer to your post is right there....

;)
 

brain

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Not to hijack the thread but to answer Cindy's response:

I don't see many success stories on brain surgery, either, like they said when I was confronted with it, long before the VNS was available.

Does my story now make sense?!!
Cindy - the topic was on VNS, so therefore, I stuck with the
topic only - not the overall perspective. Bernard does have
the chart here where it shows the overall perspective as a
whole.

However, times have changed and is changing quickly! What
was back then - your days and my days is nothing in comparison
of what is happening now - considering Non-Surgical Surgery via
Laser? And the success rate is doing very well, but still is quite
new and there are others out there that are too new to even
be rated yet.

So I didn't want to ...

:hj:

this thread or take it off the topic ... but as for brain surgery,
that I have been reading so far has been 50/50 - it all depends
on the person and specifically where the problematic issue lies
within.

Keep in mind of this - what was 3, 5, 10, 20, and more years
ago - has all changed now in brain surgery. Good news is, they
are looking more and more into less invasive ways as much as
possible into brain surgery than they used to be.

You would have to confess and admit this - Neuroscience has
come a long ways, a very long ways - I am proud of them! While
it is NOT perfect, all because EACH ONE OF US IS UNIQUE and
DIFFERING - it is a complex and complicated matter in dealing
with the brain. On the other side of the coin, the progression
of Neuroscience has changed so much that it never ceases to
amaze me.

I would have had brain surgery in the past (old days) had they
won the battle over the HMO Insurance; but today's Neuroscience
has proven why I can't have it - if I had that surgery - it wouldn't
have done me any good. I would be in the same boat as you would
be in ... if you would stop and think about that.

Today's Neuroscience (thanks to the HMO's stubborn and refusal
to approve the surgery) has proven it. I am not a candidate for
surgery nor will I ever be; but the bad side of the coin is - I will
forever will be stuck with medications, there isn't any other avenue
for me to venture into even though having tried all, as much as I
hate being a "pill popper" ...

Fortunately one day, some day - Neuroscience will advance even
further that our posts will be a "thing of the past" - that people
would look upon and read and would say, "They went through hell".
(Isn't that the truth?)
 

dennis100

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Kickbacks ???

These two MAUDE reports show that there are some doctors & surgeons who couldn't care less about their patients.


Adverse Event Report
CYBERONICS, INC. VNS THERAPY PULSE PULSE GENERATOR

Model Number 102
Event Date 10/01/2003
Event Type Injury Patient Outcome Life Threatening; Required Intervention
Event Description
Reporter indicated that vns pt had experienced an increase in seizures since stimulation was initital. It was reported that pre-vns implant, the pt had one seizure per year. The pt has had approximately one seizure per week since initiation of vns therapy and that there had been no recent changes to their drug regimen. Further follow-up revealed that treating neurologist plans to increase vns settings and possibly decrease anti-epileptic medications. Neurologist indicated that the relationship between the vns therapy system and the reported event was unknown. The pt is still with increased seizures.

Report Number 1644487-2004-00006


Adverse Event Report
CYBERONICS, INC. VNS THERAPY PULSE PULSE GENERATOR

Model Number 102
Event Date 03/01/2004
Event Type Injury Patient Outcome Life Threatening;
Event Description
Reporter indicated that pt has recently experienced an increase in seizures. It was reported that the pt experienced 1-2 seizures per year prior to vns implant and that pt recently experienced 3 seizures within one month. Treating neurologist indicated that the pt was doing fine and that the reported event was not related to the vns. The pt's seizures types had not changed. The pt's health condition is reportedly not worsening and there were no environmetal stimuli that may have contributed to the increase in seizure activity. Neurologist indicated that programming the pt's device to off resulted in no change to the pt's condition or symptoms.

Report Number 1644487-2004-00365
 

NancyB

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Dennis, When something like what you just mentioned happens and the device has to be removed, does the surgeon have to repay the insurance company who covered the operation in the first place?
 

Cint

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Cindy -
Fortunately one day, some day - Neuroscience will advance even
further that our posts will be a "thing of the past" - that people
would look upon and read and would say, "They went through hell".
(Isn't that the truth?)

Well, I sure wish the "past" would hurry and become the "Present" day!
And, YES! I have been through hell!! Tired of being a guinea pig, too.
I say "NO" much more nowadays and question the docs and pharmaceutical reps I see in the doc's office.
 

NancyB

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Cindy, do you have any suggestions on how to ask a doctor a question about something he or she is recommending without sounding as if you are questioning their abillity to handle your medical needs? How can you do it without sounding as if you're questioning what they're telling you?
 

Cint

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Nancy,
First of all, if the dr. thinks I'm questioning his/her ability to handle my medical needs, then they need not be in the profession. I simply ask what would she do if she were to try whatever she were recommending and it didn't work for her. Then I ask if there are any other options she would try.
 

brain

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Nancy,
First of all, if the dr. thinks I'm questioning his/her ability to handle my medical needs, then they need not be in the profession. I simply ask what would she do if she were to try whatever she were recommending and it didn't work for her. Then I ask if there are any other options she would try.
Ditto on what Cindy says - anytime you have a Physician (any
Doctor, not just a Specialist) that you begin to ask questions;
and they begin to become irritated, shocked or even act offended -
have "bloated egos" ... This is when you should after several
attempts if they begin to argue with you or decline to answer
your questions ... to start shopping for another Doctor.

A REAL DOCTOR will take the time to answer your questions
and concerns - remember, there are no "stupid questions or
embarrassing ones" either! That is their J-O-B!

So Cindy's post is right on the dot!


==============================

Dennis - what you have listed is just a few, thank you for
posting it - but there are more ... much, much more!

;)
 

NancyB

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Thankyou

I wanted to thank you personally for all you have done for me. I don't think you will ever realize the impact you have had on my life. You gave me hope when there wasn't any. You gave me strength when I had none. My family had ne idea what was causing my sisters' problems, but you showed me the way. You were my light at the end of the tunnel., and you had a huge part in saving my sisters' life. Not only are you a wonderful human being, but you are a beautiful soul. I just wanted you to know that. NancyB
 

NancyB

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Nanci Wilson

Birdbaum, HI!!!! I've spoken to Nanci Wilson several times, on my computer and on my phone. She asked for my phone number so I gave it to her and she called me up and we had a very nice talk. I have sent her oodles of information that I have dug up and also copies of e-mails that I recieved from Dr. Michael Schlosser, who as I'm sure you know was the FDA clinical reviewer when the vns applied for approval in its' application of depression.[P970003/S50] I also contacted Doug Wood, who is Chief, Product Evaluation Branch II. He also called me up at home and gave me his personal e-mail address and asked that I put it on this site and any other site I could. He wants everyone who has filed a Maude report about this device to personally send him the file number of each report. The problem is though, when I tried to post his e-mail information the site said I couldn't do that for some reason. Any suggestions?
 

NancyB

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By the way, for months I've been having trouble going on the VNS Message Board. Do you have any ideas why?
 

dennis100

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I also contacted Doug Wood, who is Chief, Product Evaluation Branch II. He also called me up at home and gave me his personal e-mail address and asked that I put it on this site and any other site I could. He wants everyone who has filed a Maude report about this device to personally send him the file number of each report.
Hi Nancy, good to see you around. Why can't Doug Wood just do his job and read the 10,000+ VNS MAUDE reports himself ?
 

Bernard

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... The problem is though, when I tried to post his e-mail information the site said I couldn't do that for some reason. Any suggestions?
CWE forum policy does not allow posting of email addresses.
 
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