From: Joyce and Herbert Stein [mailto:fabrik@bellsouth.net]
Sent: Friday, September 06, 2013 3:50 PM
To: Jonathan Blum, Deputy Administrator Director - CMS; Madam Secretary Kathleen Sebelius – HHS
Subject: How many appeals and pleadings will it take to make you folks see the light?
Dear Mr. Blum and Madam Secretary Sebelius,
I’ve moments ago received another very compelling email correspondence from another VNS depression patient which I’ve copied and pasted below. These real-life experiences are slowly trickling into me. I have asked those patients, allowing me to share their personal life experiences, to also list their full names, addresses, telephone numbers etc. so that your “Medical team” can validate this data should they have nothing else better to do. In doing so I am once again supplying facts/data that I would believe do not register in your computers or records of any kind. I also ask these patients to share this information in the hope that maybe you or your people can comprehend the devastating effect your continued negligence and immoral position is having upon these patients.
How long will it take for you and your staff and Madam Secretary Sebelius and her staff to correct the wrong you’ve perpetrated and the negligence you’ve created by not caring for these patients?
Either of you two department heads have the ability through the stoke of your pens to cease this ongoing agony, suffering and forcing these patient back into hell.
I would only hope that some attorney with compassion and understanding for helping others might come across our pleas and find a legal issue to address your outright negligence, in my opinion. I’ll have to look up the name of the attorney and the judge that ruled in the case for that 11-year old youngster in obtaining adult lungs for the young girl. Maybe then we can get you folks moving in a favorable direction.
I hope you all have a wonderful weekend filled with the thoughts and remembrances of what you are reading from these real-live citizens whose anguish you can easily and morally end.
Sincerely,
Herb
Joyce and Herbert Stein
1008 Trailmore Lane
Weston, FL 33326-2816
(954) 349-8733
http://www.vnstherapy-herb.blogspot.com
http://vnstherapy.wordpress.com/
From: ssagi@aol.com [mailto:ssagi@aol.com]
Sent: Friday, September 06, 2013 3:00 PM
To: fabrik@bellsouth.net
Subject: My VNS Story
My name is Sharon Strugnell and I am 66 years old. I have suffered with depression since I was 16 years old when I had my first episode. It is a horrible out of body experience, the worst ever. You do not even feel human. All you want to do is die and disappear. I had a wonderful caring psychiatrist who was the most positive person in my life. I believe he was at the end of his rope trying to help me but he never gave up and he found an article in some paperwork he received that advertised for people to volunteer to be study subjects for VNS. He immediately called me and of course I said yes. He set me up and filed all the paperwork with Cyberonics for me to participate in their research for their Vegas Nerve Stimulator. He worked so fast that I was number one study subject. I, too, tried every antidepressant made to man, psychiatrist after psychiatrist, 15 shock treatments, hospitalized for four weeks and nothing came close to helping at all. This illness effects everyone of your friends and family. Somehow I came out with two beautiful daughters and five grandchildren. My husband stuck by my side though it all and was with me throughout the ordeal. Most of the time people want to run away from people like me as we cannot do anything but bring people down. What kind of a life is that?
My stimulator was implanted on August 14, 2006. It took a while to work but what wonderful results happened. I am a new person now and honestly would love to help other people with this problem. You cannot fully understand what it is like until you experience it and believe me, you wouldn't want to. I did my clinical study at FAU in Florida. I never missed an appointment for five years as we sign that we will follow through with this program so with the hope that it would help other people as well. My doctor that headed the program was Dr.Peter Holland, a wonderful man. My battery life had the expectancy of 5 years and I have been so lucky that it is still functioning, but I live in fear of the day the battery dies. I do not think I could ever go through that torture of the Black Hole again. It is truly a killer.
I am pleading with you to help myself and all other VNS receipients that want to continue their therapy. It is such a shame that people have to commit suicide because they have nothing left to try. What if it was your mother, father, husband or child that suffered so? What would you do? I never thought that I would have to plead for my life when I signed up for this study. I thought all my problems were over. So did everyone else I am sure. We appreciate everything Herb is trying to do to help us and his wife. Thank you for reading this and for your time.
Sincerely
Sharon Strugnell
1365 SW 151st Way
Sunrise, FL 33326-1932
e-mail ssagi@aol.com
Phone: 954-801-9468
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