Pages: [1]   Go Down
Print
Author Topic: VNS issues with 12 year old disabled son  (Read 6439 times)
0 Members and 1 Guest are viewing this topic.
theathorne
Newbie
*

Karma: +2/-0
Offline Offline

Posts: 10


« on: December 30, 2008, 02:21:45 AM »

Hi to all, I am new to this message board. I happened to come across you guys when I was researching my son's newly developed health issues. He was born with microcephaly and therefore has spastic cerebral palsy with varying types of seizures presenting. He has been on every seizure med known with little success and he was implanted in 2007. I had no idea there could be so many problems!!! He developed worsening of his seizures while in the hospital in August after spinal rod surgery so they ramped up his VNS and had it firing every 30 sec and off for .8 min..... within one month he developed severe respiratory distress, heart rate variants from 45-155...had to start him on oxygen during the day and CPAP at night....I thought we were going to lose him....his neuro wouldn't listen to me and refused to turn it back down so I taped the magnet on it to turn it off and took him to the surgeon that put it in. He adjusted it back down and said now we know his high parameters!!!! He has been to heart and lung doctors and no one has an answer as to what happened to him...but I know...it was the VNS:( As a Registered Nurse I am very dissapointed in the medical profession of today. Do you guys still have yours in and just monitor closely? I am torn as to what to do for my son...he is nonverbal and can't tell me when things are wrong... thanks for your time. Thea-mother of Michael  
Logged
labrat
Global Moderators
Hero Member
*****

Karma: +7/-0
Offline Offline

Posts: 2547



WWW
« Reply #1 on: December 30, 2008, 05:03:32 AM »

Welcome to the board! In answer to your question, I have had my VNS for over 4 years, but I haven't had any problems except the battery going dead.

I'm sorry your son is having so many problems with his VNS and can't tell you how it feels.

I wish everyone could have success with it, but it isn't so.

Keep us posted on how he is doing. We care!
Logged

Birdbomb
Head Cheese
Administrator
Hero Member
*****

Karma: +9/-1
Offline Offline

Posts: 7791


Head Cheese


WWW
« Reply #2 on: December 30, 2008, 08:35:29 AM »

Welcome Thea :Welcome:

What you are experiancing with the doctor's refusal to believe it can be the VNS is very common. I don't know if it's out of ignorance or greed but IMHO it a LOT of both.

This is your child, no one knows him better than you.  Our first gut instincts are usually right.  Taping the magnet to his chest proved this.  Even though the VNS may be fuctioning 100% as programed, the human body's response cannot be 100% predicted.

This site has been up and running 5 years this Feburary. As the site owner, I have spoken to 100's of VNS patients over the phone from all over the world. What your little boy has have to deal with isn't all that rare.  When VNS is good, it'a all good, but when it's bad, no one wants to believe it, yet this site is filled with pages and pages of people who have had horrible experiances and most of those same people had to struggle to get their physicians to accept the VNS was the root of the problem, NOT the solution.

The medical profession has gone to hell.  It's about the almighty dollar.  VNS is very profitable and most doctors just don't or can't take the time to educate themselves.  

Have you downloaded the Physician and Patient Manuals?  These are just a tool to use in getting his doctor to LISTEN.  Printing up sections of known  side effects and cases of respitory and cardiac issues can be an eyeopener for a lot of these doctors.

Read about Scott in our pediatric section and about Dennis's heart stopages.  These are CLASSIC cases.  Dennis has been reserching all the MAUDE reports of cardic reported side effects and suspicious deaths and reposting them in the Legislative forum

Deceiding to remove the VNS is a personal decision.  Each person has their own reason.  Mine was to be able to have MRI's done(the electrodes could not be removed) but I have NO regrets about removing mine.  I feel better and many of the side effects have ebbed.

VNS has helped many. It's been a miracle for  people like Labrat and for that we are grateful, but doctors need to listen to the flip side too, for every success there are 2 failures (following the 1/3 formula)  They have to be willing to accept that failure and try to make those people more comfortable intead of calling them liars and fakers.  LISTEN to the patient, not the puffed up statics!

I hope you keep posting here, you seem like a very nice person and very intellegent.  It's getting the medical profession to be RESPONISIBLE for reliable medical care that's the struggle.  Good luck to you, I do hope your son isn't in too much discomfort.

Birdbomb
Logged

"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!
oreo
Moderators
Hero Member
*****

Karma: +5/-0
Offline Offline

Posts: 595


WWW
« Reply #3 on: December 30, 2008, 11:07:08 AM »

Hi Thea,

I'm glad you found this site.  You'll find so much information that may be helptul in making decisions for Michael.

My VNS has been in for 2.5 years (for depression).  I have had some very good results, but also some pretty crummy side effects.  Overall, the benefits are worth putting up with the other stuff so far.

Each person with VNS has a unique story, but there are many shared challenges.  That's why this forum is so helpful.  At times, even if you can't get relief from a specific problem, at least you will have the support of someone who had the same or similar experience.

My youngest child (who is now 26!!!) is also named Michael.  I know your Michael is dear to you and seeing him in distress as a result of a "therapeutic device" creates such pain and suffering.

You're obviously already a strong advocate for Michael...I know you'll be able to make things happen in regard to the VNS.

Please keep us posted!      Oreo
 
Logged

The most successful people are those who are good at plan B.
~James Yorke~
Dispatch
Riding Shotgun
Global Moderators
Hero Member
*****

Karma: +14/-3
Offline Offline

Posts: 2263



« Reply #4 on: December 30, 2008, 01:39:57 PM »

:D HI Thea-Mother of Michael & :Welcome: to the VNS Message Board!  We are glad you joined us, and hope you keep coming back so we can get to know you & your Michael.  I would have never known 1/2 as much as I do now about VNS if it wasn't for this message board, and I am glad you found us & became a member!

You can read about me in the Your Story section under the topic VNS for TRD Traumatic Brain Injury (or something close to that).  To sum it up, I was implanted and now have had complete removal.  I, like your son & so many others have suffered due to VNS.  I could not get the doctors to listen to me either until I taped the magnet on my chest and handed them the information they and Cyberonics failed to tell me from the beginning.

What I don't understand is there have been so many side effects & adverse events that have happened with this device that Cyberonics & doctors have failed to make public knowledge.  Their marketing does not fully disclose everything that can go wrong.  The things they do make knowledge are sugar coated (ie: saying the side effects disappear in time with adjusting to the device).  Their statistics are dummied up & not current.  I also agree with everything everyone else posted to you.

Your son's situation is quite unique in that he is non-verbal and can't tell you when something is wrong.  I am so happy you were able to see what was happeneing to him and shut that device down with the magnet.  Now that the device settings are lower, is he any better?

Have you thought about making a MAUDE report on the FDA website reporting what has happened?  You have that right, and I hope you consider doing this.  Dennis is our resident MAUDE report investigator.  He too developed serious cardiac issues and almost died.  Birdbomb now has serious health problems due to the device as well as myself.  There are success stories here like Labrat and Oreo although it has not been an easy road for them to get better because of the side effects.  There are other Mom's as members who's children have had success and horrors as well.  Please read in the Pediatric forum about Scott (Fay's son).  Then there are folks here who's device malfunctioned, and some it just plain didn't work for them as a therapy option.  My honest opinion is the more I research, the more convinced I am that if a person already has health issues, the device is not as effective if it is even effective at all.

I applaud you for being such a strong advocate for Michael!  Your being a nurse is a bonus because of your watchful eyes!  I wish you, Michael, and your family  :goodluck: in the upcoming times you face having to make tough decisions about this treatment option.  We are here for you, and I will keep you all in my good thoughts & prayers!

B)          
Logged

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
theathorne
Newbie
*

Karma: +2/-0
Offline Offline

Posts: 10


« Reply #5 on: December 30, 2008, 04:08:26 PM »

Thanks to all of you who replied to my post. Yes, Michael is doing better...but just has some residual effects left, ie still needs oxygen and breathing treatments prn but am still trying to wean him off that and the CPAP. At least he isn't struggling to breathe now and sweating profusely, etc. Yes I will download the manual...thanks for that and yes I will certainly report to the FDA...I just wasn't sure how to do it, but I will figure it out now that I know who to report it to....thanks. To all of you a Happy New Year!! Thea-mother of Michael
Logged
Dispatch
Riding Shotgun
Global Moderators
Hero Member
*****

Karma: +14/-3
Offline Offline

Posts: 2263



« Reply #6 on: December 31, 2008, 04:02:40 AM »

:D HI Thea-Mother of Michael!

I am really happy to hear Michael has gotten better with lower settings.  Sometimes that is what it takes to reduce the severity of the side effects.

Kudos to you for wanting to pursue making a MAUDE report.  I think the site address is www.fda.gov/cdrh.  The FDA site isn't too hard navigating around, and you can even pull up all the MAUDE reports made regarding VNS and any other devices you are interested in looking into.  Sometimes people get lucky and their doctors make a MAUDE report.  Even if Michael's doctor(s) make one, you can as well.  Also, you can request Cyberonics to do an investigation by calling their Clinical Technical division.  The FDA is supposed to request them to do that once they get your MAUDE report...yep, Cyberonics investigates themselves so I don't want to give you false hope that they will take the blame and consider their device caused your son these problems although it is clear.

Hope to hear from you again soon with an update on how you guys are doing.  Take great care & have a wonderful beginning to a brand new year!

B)
Logged

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
labrat
Global Moderators
Hero Member
*****

Karma: +7/-0
Offline Offline

Posts: 2547



WWW
« Reply #7 on: January 05, 2009, 06:02:17 AM »

My VNS is for TRD, but I've found that the longer I've had it, the lower it is set.
Logged

Pages: [1]   Go Up
Print
Jump to: