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Friday, May 16, 2014

“brave young woman challenged by epilepsy who is probably at this time solely unique in the world”

Herb <vnsdepression@gmail.com>

3:47 PM (18 minutes ago)

to (Redacted)

Dear (Redacted),

Thank you sincerely for sharing some of your case history with me. I would ask if you would allow me to post the below listed information on my blog site in the hope of possibly benefiting someone else?

Herb

 

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To the readership of this blog,

I recently have had some very interesting and informative correspondence with an intelligent, adventuresome and brave young woman challenged by epilepsy who is probably at this time solely unique in the world.

As many of you may already know I have for almost 2 decades since Joyce’s involvement with VNS Therapy tirelessly reached out across this planet to physicians and patients of VNS Therapy whether for Depression or Epilepsy to advance my knowledge and understanding of the therapy and its potential side-effects in the hope of better caring for and maintaining Joyce’s wellness and supporting her needs as well as sharing this garnered information with others.

In doing so I have learned from those implanted as well as explanted patients and from patient(s) who have implanted two (2) neuro-modulation devices such as VNS and heart pacemakers as well as explanted VNS patient(s) who have gone on to obtain DBS.  I now inform you of an even more unique situation.

In this instance I bring to your attention and knowledge a patient who is currently implanted for purposes of seizure control both with VNS and DBS* devices.  From my understanding VNS worked reasonably well, for a time, but by the nature of her illness it was decided additional control was necessary and hence the two prosthesis.  It is also my understanding that she is currently doing reasonably well.

*DBS is not currently FDA approved for epilepsy or depression.

This young woman was kind enough to correspond with me and to answer the questions which I put forth to her and by way of this posting I would like to express my appreciation and deeply thank her for taking the time to share this information with me and I in turn as I continue my efforts to share this unique information with you..

As always, I wish this young woman and all who are challenged; wellness and all the good you’d wish for yourselves and others.

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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(Redacted)

4:04 PM (1 minute ago)

to me

That is very well written and kind-hearted in the form you have it. I am happy to provide my experience and knowledge with the DBS and the VNS to you and others who are seeking the information.

Regards,

(Redacted)

2 comments:

  1. From: (Redacted)
    Sent: Friday, May 16, 2014 6:21 PM
    To: fabrik@bellsouth.net
    Subject: RePLY: "brave young woman challenged by epilepsy who is probably at this time solely unique in the world"

    Thanks for the "share," Herb. I tried posting a comment, but the site booted me out. I'll comment here, if you don't mind.

    I am going to assume that this is an experimental procedure since it is not FDA approved. Where is this taking place (US or abroad) and who advocated on her behalf that the docs were willing to risk a non-approved procedure? I won't even ask who is paying for it.

    I admire both her and her medical team's pluck to persevere when the political/corporate community can make acquiring and securing medical intervention so difficult.

    Thanks again for the share, Herb. You rock.

    ReplyDelete
    Replies
    1. Hi C,

      She went to a mid-west University Hospital.

      “the surgery was covered through a grant within the hospital of investors because my health level was at critical stage with the Epilepsy...”

      “When I first began research of medical devices I was able to find clinical trials being done.”

      Sincerely,
      Herb

      Delete