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Author Topic: VNS Battery replacement and now I am in trouble...  (Read 15485 times)
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spider66
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« on: April 11, 2011, 02:07:12 PM »

Hello All,

I have had three VNS surgeries. I was doing fine until this last one. I had it done at one of the best Medical Hospitals in the U.S.
I do not understand what has happened. I am not even sure the doctor is telling me the truth.
When I went in I was 100% fine. When I came out into recovery I sounded like I had laryngitis, I had trouble catching my breath and I could not swallow liquids right.
The neurosurgeon never came back into the recovery area to see how I was doing or to tell me what took place. I never got the customary magnets, ID card and instruction booklet. I do not even know what model it is! This has not been my experience with the prior two surgeries.

It has been 10 days and I have had the magnet over my chest but I have not had good results. My voice is not normal, I feel like I have a bump in my throat, I have to be careful with liquids and breathing when I talk only is difficult. Everyone around me has said there is a problem. I live in Oklahoma and Cyberonics says there are no doctors here that deal with the VNS. The neurosurgeon swears he was no where near the leads so he does not know why I have this problem.

He also says when the magnet is placed over the device for any length of time it permanently shuts the device off. My literature does not say this. He states given this fact he does not feel it is the VNS. HE suggest I go see an ENT surgeon for my vocal cords.

The closest neurologist is in Texas or Kansas. Is it possible that just changing the generator could have done something?

Any advice or thoughts are greatly appreciated,
L
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oreo
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« Reply #1 on: April 12, 2011, 09:04:59 AM »

Welcome Spider66,

I'm sorry to hear you are having problems following surgery.  Sounds as if you had the generator replaced; is that right?

I'm sure you'll hear from members who have far more experience than I do...but I thought of two possibilities after reading your post.  Even when they only replace the generator, the leads have to be detached and then attached to the new generator; so of course there is movement of the leads.  Perhaps the vagal nerve was "disturbed"/possibly damaged during this process.

I also wonder if all the parameters were set correctly for the new generator.  Many symptoms come up as a result of changes there.

Sounds as if someone dropped the ball in getting you the typical info you mentioned...magnets, manual, etc.  It doesn't matter if you had this surgery previously, you should have those items.  As you know, it's especially important that you know what model you have.

If I were you, I'd be writing all this to the neurosurgeon so you have documentation of what happened.

Who do you see for follow-up?  I hope your symptoms improve...if not...you need to be your own best advocate and document all action you take in getting this resolved.  Good luck!
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Dispatch
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« Reply #2 on: April 12, 2011, 10:07:46 PM »

 Smiley HI spider66 and a HUGE WELCOME!  Glad to have you here, and hope we can help!

Oreo mentioned several great points!  I wanted to add something to bring up with your doc-during your surgery, you most likely had an airway down your throat which could cause your symptoms in the throat.

Although I was implanted for depression, I thought the magnet worked the same if it was held over the generator sire for a period of time would shut it off until it was removed.  It is my understanding in use for epilpsy that a person would swipe the magnet over the generator for increased stimulation.  I have never heard or read that holding the magnet over the generator would permanently shut it off.  I would think you would have gotten a new magnet this last surgery because it would need to be programmed to the new generator and miliamps adjusted if you're using VNS for seizures.

I don't get why Cyberonics has people implanted when there isn't proper medical care in the area.  So, do you have to travel far to have a doc manage your VNS?

Bestest of luck to ya!  Hope to hear from you again!
Cool
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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
spider66
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« Reply #3 on: April 14, 2011, 03:16:54 AM »

Hello and thank you both for commenting Smiley

I got home from the ER just a little bit ago after spending the night there. I went to the urgent care and my breathing was so bad they would not treat me and asked me if I wanted an ambulance to go to the hospital! I said no and they called ahead to the ER who after seeing me admitted me right away.
The E.R. doctor was very thorough in exams and x-rays, he called another neurosurgeon who performs VNS surgeries and a respiratory doctor.
The consensus among the three was that I am having problems with my vocal cords and it is only being drastically worsened by the VNS going off. They said it needed to be shut off ASAP and referred me to an ENT.

I am having my VNS turned off tomorrow morning. The neurologist that Cyberonics referred me to told me."let the surgeon who did this bail you out." He would not shut the device off since he was not my doctor but would only lower the settings my .25 Ma. After hearing about the E.R. visit he has agreed to turn it off. The device itself is working properly and he even set it to zero with no difference in my breathing ability.

Oreo: The parameters were set lower in surgery than they were prior to surgery. I do not know what happened during surgery or with the VNS this time but it sure was not a simple procedure.  I have emailed both my neuro and neurosurgeon concerning this whole mess with everything.

Dispatch: the magnet does not turn the device off permanently. The surgeon told me it did in his email to me!  This really made me question him. Yes, I travel from OK to CA for my VNS.

The surgeon that performed this on me swears he did not do anything to disturb the leads. He said he would mail me the magnet kit. All I know is I was fine before and came out a mess.

Thank you for your help and input-I appreciate it!
L
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Dispatch
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« Reply #4 on: April 18, 2011, 11:08:40 PM »

 Smiley HEY Spider!  I so hope you are getting better with having the device off!!!

Ha, I've had docs pull the same thing on me--go to the one who screwed me up.  Well, no thanks!  For real, he screwed me up and I tried to sue him, so ya really think I'm gonna go back LOL!!!  Hang in there!  Hope you get some good news soonest!

Cool
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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
Birdbomb
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« Reply #5 on: April 27, 2011, 07:05:49 PM »

Spider, you need to contact the Anesthesiologist ASAP.
http://www.surgeryencyclopedia.com/Ce-Fi/Endotracheal-Intubation.html
It sounds like your intubation during your surgery was very damaging! Some of those guys are just brutal! You'll want to ask to see the actual anesthesiologist records of your surgery.  Ask were there any problem? Was intubation done correctly and without incident.  And you need to report all your current problems with swallowing, breathing, talking and vns problems.
And you might need an attorney. 
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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
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« Reply #6 on: May 03, 2011, 06:35:14 AM »

Hi spider!

I`m sorry for the mess you`re in to....

 
Quote
I would think you would have gotten a new magnet this last surgery because it would need to be programmed to the new generator and miliamps adjusted if you're using VNS for seizures.
After each new generator, you should have a new magnet, and the card etc...
But the magnet is not programmed. All the programm is in the generator. The magnet is just a magnet.

If the software and the device is all right, you`ll never can switch it off. Only temporarily.

I agree with BB that the intubation could be the reason for your problems.
I hope you will be have some help, very soon.
Hang in there!
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 Mom of a 16 years old son, vns since 2002.
apache_spirit
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« Reply #7 on: May 27, 2011, 06:26:48 AM »

HI ,

I am Nancy.

I have had 2 VNS surgeries.  My first VNS was woring really well until it wore out just before it was 3 years old.  IT was  then replaced on August 25th of last year.  Doing jsut fine again.  The stimulator amps are set at 2.25 adn the magnet swipe automatically goes up with so that went up to 2.50 amps.

THere are times where I have set-bakc and times where I can go almost a months with NO szs.  Ihave Complex PArtial szs in my left temoral lobe.

I really didn't get a choice.  IT was offered up to moe on 2 serate occasions and I turened it down and the 3 time he made me take it becuase my quality if life was really and getting worse.  not a candate for brain surgery lesions deep in the brain, so that would not solve a thing so in went the VNS doneby a very well know VNS surgeon in my area.  My vopice s tays haorse probably at this point in time wil lstay that way, adn I still can feel it a little bit when   the stimulator fires.
 I sot for the most par t knw it is there.  I have to sell only on my back, no side sleeping or on my stomach.

sorry for the mistakes.I go in a they way I should and come out the way I should  NOt problemsawioth it.

my neruo wanted mine turned on before I left teh OR and it was at .75 amps.  Then he kept turing it up everytim I saw him.  Wverthing over 1.75 becuase thepeuticall.well I better get going.

Nancy
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dlb1101
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« Reply #8 on: July 17, 2011, 06:20:37 PM »

Hi Spider66, I live in Oklahoma too and had my VNS surgery on May 16, 2011 at the OU Physicians Medical Center in Oklahoma.  The surgeons name is Nilesh R. Vasan.  Dr Vasan came highly recommended.  He seems to have done a fair job with mine; no serious side effects so far.  Thank God.  Truthfully, although he's a nice dr he doesn't seem to care about my concerns and issues I've tried talking to him about.  He just writes me off. 
I also know of a dr in Tulsa who does the surgery too. My phychiatrist told me about him.  His name is Ben Benner.  Hope this helps. My phychiatrist, Jackie Neel, monitors my depression and the vns equiptment, but says she can not help me with the medical issues.  My primary doc told me she knows very little about vns, but she offered to help me by learning more about it.  I greatly appreciated that. 
Hope this helped a little.  dlb1101
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