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Wednesday, October 30, 2013

In the words of Paul Harvey..."Now you know the rest of the story."

From: Herbert Stein [mailto:fabrik@bellsouth.net]
Sent: Wednesday, October 30, 2013 3:29 AM
Subject: In the words of Paul Harvey..."Now you know the rest of the story."

To Joyce’s fellow patients and all those who have helped our cause and encouraged our advocacy,

Joyce’s VNS replacement surgery on October 7, 2013 was absolutely uneventful except for our struggle to finally achieve that goal.  She was up and about immediately after the surgery without any need for pain medication.  We had a follow up with her neurosurgeon, Dr. Bedih Adada.  Her incision is also healing well and we’re back to our normal life’s routines.  We met with her attending psychiatrist, Dr. Ely Pelta for her regular quarterly visit.  He interrogated her device and all is A-OK and we should maintain course hopefully for the next 5 to 10 years.  Depression is absent from any of our discussions; truly amazing.

The major sadness in our lives at the moment is the fact that three friends were all hospitalized previous week and one of those friends sadly passed away.

One of my precepts is to always leave’em laughing to which I add a closing chuckle to this lengthy advocacy.  I yesterday received a letter from the office of Congresswoman Debbie Wasserman Schultz with an enclosure from a Ms. Cherie Weatherington, CMS in Atlanta, GA which I’ve shared with you below.  I thought you might find it funny after all that we’ve been through.   I’ve also shared my subsequent reply to both parties.

Once again, I’d like to sincerely thank Jonathan Blum – CMS, Ms. Amy Larrick – CMS,  Ms. Courtney Turner – CMS and the other governmental folks who finally understood our dire, compassionate and moral needs to correct the egregious and negligent oversight of originally denying medical coverage to this group of patients.

I have received a number of emails from physicians attending to this patient population thanking me for my efforts on behalf of their patients as they now can proceed to help their patients.  I’ve also received emails from other physicians directing their patients to me who were unaware of what has transpired and they too are now advocating on their own behalf to obtain replacement prosthesis.  I’ve been informed that Cyberonics is making an effort to have their representatives who call upon the psychiatric physicians as well as their nurse case managers to assist our unique patient population in obtaining care, replacement and/or ex-plantation of their devices for patients implanted on or before the May 4, 2007 decision.

In the words of Paul Harvey..."Now you know the rest of the story."

I wish you all wellness and all the good you’d wish for yourselves.

Sincerely,

Herb

Joyce and Herbert Stein

1008 Trailmore Lane

Weston, FL 33326-2816

(954) 349-8733

vnsdepression@gmail.com

http://www.vnstherapy-herb.blogspot.com

http://www.vnstherapy.wordpress.com

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Joyce and Herbert Stein

1008 Trailmore Lane

Weston, FL 33326-2816

Voice: (954) 349-8733   Fax: (954) 349-8734

fabrik@bellsouth.net

October 30, 2013

Congresswoman Debbie Wasserman Schultz

10100 Pines Boulevard

Pembroke Pines, FL 33026

Dear Debbie,

Thank you for your effort on our behalf.  Apparently Vivian may have overlooked the email(s) I forwarded to her indicating we have achieved our goal.  Also apparent from the letter you received from Ms. Cherie Weatherington of the Atlanta, GA office of CMS she had not received any communication(s) to the fact that after four months of our efforts and numerous emails as well as several telephone conversations with Mr. Jonathan Blum, Deputy Administrator and Director for CMS and Ms. Amy Larrick, Senior Advisor to the Principal Deputy Administrator that a decision was made to assist those VNS patients implanted on or before May 4, 2007 to help insure they receive health insurance coverage for care, replacement and/or ex-plantation of their medical prosthesis.

This decision has corrected the egregious, moral and negligent oversight to have grandfathered care for those patients already implanted on or before the May 4, 2007 national denial.  I would suggest Ms. Cherie Weatherington carefully read the following link and if there is any doubt in her mind to please call Ms. Amy Larrick as stated in the link:

http://www.vnstherapy-herb.blogspot.com/2013/09/vns-therapy-for-depression-good-news.html

My spouse, Joyce, received her replacement prosthesis on October 7, 2013 and is doing very well.  Other patients have also received their replacements and/or are now scheduling for surgery through the assistance of Ms. Larrick at CMS and hopefully will have their procedures covered by Medicare/Medicaid and/or private insurance.

Once again, thank you and thanks to Vivian for trying to assist us.

Sincerely,

Herbert Stein

Cc: Cherie Weatherington, Acting Associate Regional Administrator

Wednesday, October 23, 2013

Joyce had her 3rd VNS surgery (2nd replacement) Monday, October 7, 2013.

To the VNS Therapy depression patients:

Joyce had her 3rd VNS surgery (2nd replacement) Monday, October 7, 2013.

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The surgery was outpatient and uneventful in Joyce’s case. We left the hospital at 10:30 AM. She was up and about immediately and required no pain killers. The staples were removed Thursday, October 17, 2013 and the exact same incision site as the two previous surgeries is healing well. Joyce is back on track and no depression. As of this December 2013 she will be celebrating 14 years of successful use of VNS for depression.

We are thankful for the help and assistance of the folks at CMS (Centers for Medicare and Medicaid Services) for finally understanding the needs for this unique group of patients, implanted on or prior to May 4, 2007, who wish to continue with the therapy.

For those depression patients having any difficulty with their health insurance coverage I would recommend carefully reading the following posting for additional information:

http://www.vnstherapy-herb.blogspot.com/2013/09/vns-therapy-for-depression-good-news.html

I extend my best wishes to you all for wellness.

Sincerely,

Herb

vnsdepression@gmail.com

http://www.vnstherapy-herb.blogspot.com

http://www.vnstherapy.wordpress.com

Monday, October 7, 2013

It’s over! It’s done!

From: Herbert Stein [mailto:fabrik@bellsouth.net]
Sent: Monday, October 07, 2013 11:13 AM
Subject: It's Done!

Yogi Berra, “It ain't over till it's over.”  Herb Stein, “It ain’t done until it’s done.”

 

It’s over!  It’s done!

 

Surgery was this morning.  It was less than an hour and uneventful.  Joyce is in no pain.

Here’s another curve ball thrown in last week for good measure to add to the stress and anguish we’ve already endured.  Joyce was scheduled for VNS replacement surgery Wednesday, September 25, 2013 at Cleveland Clinic, Weston, FL.  It was cancelled by the hospital. 

I immediately went back into battle mode with the executives at that facility as well as their corporate executive offices in Cleveland, OH.   More bureaucratic gibberish to listen to and overcome.

Forget the details, surgery has successfully and uneventfully been accomplished this morning.  We finally achieved our goal.  Joyce is doing very well.

My concluding thoughts on this 4 month 24/7 struggle to follow later once I calm down and debrief from all that has transpired.

Sincerely,

Herb

Joyce and Herbert Stein

1008 Trailmore Lane

Weston, FL 33326-2816

(954) 349-8733

vnsdepression@gmail.com

http://www.vnstherapy-herb.blogspot.com

http://vnstherapy.wordpress.com/

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