“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

 

…………………………………………………………………………………………………………………………………

 

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

…………………………………………………………………………………………………………………………………

 

(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)

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About vnstherapy

I'm a very, very long-time support person and health care and mental health advocate/activist for my spouse Joyce as well as to others. I'm also a retired business executive and former Board Member, President and facilitator of a local chapter of DBSA as well as a Florida State appointment as a Guardian Advocate. I do not endorse, promote or advertise for any therapy, product or company. I do share our personal experiences, my research and knowledge in the hope it might benefit someone or do I give advice as to what one should or shouldn't do. I extend my best wishes for wellness to one and all and all the good you’d wish for yourselves.
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