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Author Topic: Surgery Date Approaching, VNS Surgery (part II)  (Read 10905 times)
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Darlene
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« on: May 03, 2004, 05:12:10 PM »

Anita,

     I sure hope this will work for you.  I agree with birdbomb you have been through too much, especially alone.  As I have told you I don't care for Cyberonics. The rep. who was assigned to me was real unhappy I would not go with the surgeon Cyberonics recommanded.  One thought of mine is may they get money back from those doctors.  The neurosurgeon I Had used to back them years ago, but he does not today, because of some of the things which has happened.  The rep. who was at my surgery was not the rep. who pushed this other Surgeon.  I feel Cybernics is out for the money only.  Sent the surgery in July 2003 I Have not heard from them.

     I didn't like the way They pushed the unit.  Both my neurologist and Surgeron let me make the decision if I wanted it.  I am not one to be push.

     I pray you have come the end of this mess and have good luck for now on.  My Daily prayers are with you.  Let me know if I can help.  I will try my best to check in on the message board.

Darlene   ;)
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Birdbomb
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« Reply #1 on: May 03, 2004, 07:21:08 PM »

Anita,

I believe you may not have understood what I ment by having the lead check.  The neuro will program the unit on in about two weeks post-op.  A lead check is something entirely different.  When the unit is put in initially, and while you are still under anesthesia, there is a lead check done to insure the proper connections are made and to conduct tests ensuring the devise is working properly BEFORE you are stiched closed.  Should there be any problems, they can be corrected at no discomfort to you.

Since you have had significant migration, manual manipulation and the unit was upside down, these tests should have been repeated prior to closing as a safety precaution.  All that movement is perverse to the entire system.  As I stated before,
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A visual inspection is not enough to tell if they are damaged and damage could be any place. The wires are fragile and can get tiny breaks and with the kind of migration you had, it would be purdent to have a lead check done.
Unless your doctor checked all the wires with an electron microscope, he's an idiot (IMO) for doing things like he did.  Other reasons for doing this while you are still under anesthesia, it can be quite painful, and rules out possible heart complications

Please understand I'm not bagging on you, but I KNOW you have gotten the dirty end of the stick here, and I am just trying to help you.  Many of us have been down the rocky path you are on.  I just hate seeing people taken advantage of by so called professionals.  Professionals we entrust our very lives to....[/color] B)



IMO=in my opinion
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
Herb
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« Reply #2 on: May 04, 2004, 02:40:31 AM »

Dear Anita,

I just read your message above that you
« Last Edit: May 04, 2004, 02:43:18 AM by Herb » Logged
nitarita34
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« Reply #3 on: May 06, 2004, 03:28:50 PM »

Evening friends, tis me again and I am beging to fell like a whiner. The unit came loose again and is back up at my collarbone. I am a loss as to what to do at this point. I have called the surgeon but have yet to hear back from him, I have called Cyberonics and they said they would get back with me too but haven't heard from them as of yet either. I have returned to work today and am just dealing with manipulating the unit out of my collarbone when it moves up there(caused by raising my arms up or when I bend over). I am begining to wonder if mabey this just isn't meant to be. I followed instructions and layed flat for three days doing no activity, yesterday evening I got up and drove to the sotre and I believe that is when they pulled loose. I have to get on with my life. I am going to start calling around tomorrow to find another surgeon that will take this on and will go the route of a Neuro surgeon instead of an ENT at this point. I think I am going to just take the time to heal before going forward anymore. Herb and Birdbomb thank you both and all others for your words of wisdom and support.
Tired and Frustrated,
Anita :wacko:  
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38 y/o female with pseudo seziers as per new neuro-who the heck knows (my seizure issue still on debate 10 years later), BiPolar, May Turner Syndrome, newly high blood pressure, DVT, PE's and an unexplainable blood clot disorder.
FORMER VNS implant patient
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Birdbomb
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« Reply #4 on: May 06, 2004, 04:05:59 PM »

Oh, Anita,

I am so sorry this is happening to you, but you are not alone with your fustrations.  Many others have had problems with surgeons and Cyberonics as well.  I personally know what the migration problems are like.  My unit floated around for 3 months, but it would slide into my armpit.  I couldn't lay on my side because it would flip.  God, what an awful sickening feeling.  Cyberonics was no help and my surgeon was always booked up.

There ought to be someone there in Houston to help you out.  Your ENT is a fool and a quack.  Your posts to this message board make en excellent log of your plight.  Save them to your hard drive as it will come in handy at a later date for you.  Right now your focus is getting things in the proper place and just dealing.
God bless you and give the strength to endure.  You are much stronger than you think.

Sincerely
Birdbomb
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
Herb
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« Reply #5 on: May 06, 2004, 07:01:36 PM »

Anita,

I really am at a loss for words.  It seems some folks just have gone through the trials and tribulations longer than others.  I don
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nitarita34
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« Reply #6 on: May 08, 2004, 10:25:21 AM »

Have an appointment Monday with surgeon for surcigal follow up as I have stated before and suture removal. I am going to ask for my med records, thank him for his attempt, let the body heal and then move forward after I contact and INTERVIEW a few different surgeons before going under the knife again. At this point I cannot say if I will just eventually have the unit removed or contiue to move forward with sucessful implant and eventual turn on. But HEALING is my number one priority right now. I can deal with the aggrivation and pain it is causing but am staying positive and that and personal meditaion is helping me more and more (something my younger sister reccomended that I try and I found it to work for me). I will keep you up to date. HAPPY MOTHERS DAY TO ALL!!!!!!!!!!!!!!!!!!!!!!!!!!!
Anita
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38 y/o female with pseudo seziers as per new neuro-who the heck knows (my seizure issue still on debate 10 years later), BiPolar, May Turner Syndrome, newly high blood pressure, DVT, PE's and an unexplainable blood clot disorder.
FORMER VNS implant patient
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