VNS Journal. (Ongoing thread)

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Hello all! My name is Jeff. I recently had a VNS device put in. About 3 weeks ago. I wanted to start a journal of my ongoing progress. I am having quite many side effects, so I just wanted to give as much info as possible. I feel those that are considering the options need to be made aware of problems or benefit I receive from it. Through all of this my intent is not to deter anyone from the possibility of having one implanted. For some the device is a dream, for others it can be a nightmare. So far I am on the negative side. Here we go.

Feb 3) My Dr was going through all possible medication and could not stop or lessen my seizures, so he gave me the option for the VNS. I watched the videos and read the paperwork. Hey seizures in both hemispheres of my brain, why not. My wife was not thrilled, but reluctantly went along with it.

Got to the hospital, filled out the book of paperwork, put on the ever so lovely hospital attire and were ready to go. The Dr and nurse came in, gave me the rundown, off I went to surgery.

When I woke up, zero voice. Dr came in told me that this is a common side effect and it will subside. Out of the hospital I go.

It has been 3 weeks, my voice is still gone, headaches, difficult to breath and insomnia. During this period I decided to do some more research and found that what I was told in the hospital was more or less the half truth. My voice may never come back. It is a common side effect that your vocal cord becomes paralyzed permantly. When you are the father of five, that is not good news. My wife telling me "I told you so." was a wonderful addition. lol

I continued my research and found that the implant may cause sleep apnea, and there have been numerous deaths associated with the implant. Most of the deaths were attributed to unknown death and most of those people died in their sleep. There is a story of a man who had one and it malfunctioned causing his heart to stop and he would come back every 30 sec because the device would stop and his heart would start again. Fantastic! Yea, I am a little scared. Then I read about a mom who had her daughter die in her sleep. Not cool.

With all that in mind we called both Dr's and told them to take it out and leave me on meds. I was met with great resistance. Neither Dr want to remove it. Why not? Its that I am not used to it, all of this will go away. Called them both back and got this, "You may need to wear an oxygen mask to sleep." Um, no. I cannot even attempt to talk without losing my breath. This thing is not even turned on yet! Next week it gets activated. As I wait, I am very concerned. My family had to worry about seizures, now death. My wife is now scared to sleep in case something were to happen at night. I'm not going to panic quite yet, or should I say, not going to panic much. I will keep you posted. Jeff
 

Cint

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I've had the VNS since 1998 and am now due for another replacement. It has been a good alternative for me because brain surgery and numerous meds didn't work. However, I do know there are others who have had a rough time with the VNS, also. There have been many discussions in the past here on CWE about the VNS:

http://www.coping-with-epilepsy.com/forums/tags/vns.html
 
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Thanks for the feedback. The VNS, in reading, seems to be perfect for palsy victims, and others. It seems to be hit or miss with epileptics. Now I did read some great success stories as well. And I hope all goes well. :)
 

Bernard

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Hi Jeff, thanks for sharing your journey here. Hopefully the VNS turns out to be everything you hoped for. Reading about the negative issues others have experienced can be distressing, but it's not necessarily indicative of what you are going to experience. It's always good to be aware of the possibilities though.
 
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Feb 6) I go to get my VNS turned on Monday. I am still having headaches, insomnia, no voice. I was hoping I would be a little better at least. Monday we will see what the effect it has when functioning. Yeah! lol -Jeff
 
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Feb 11) Well it is turned on. It is set below normal and I feel it every 5 min. I am sure one can get used to it. The Dr told me it may hinder my ability to sleep. I told him that I do not sleep as it is. lol I had 7 mild seizures over the weekend so I am hoping for a few more to test it out. That sounds bad, I want to have seizures. lol The Dr was very surprised that my voice has not returned. He thought that it was turned on already due to my voice. I said nope, and gave me a surprised look. I was told that since the operation connected something to the nerve, that it may take awhile. Apparently nerves can take up to six months to heal, so we shall see. When it comes on (which is every 5 min) it makes you cough and gives a strange sensation in your chest. And remember, this is below the normal start up strength. This is my advice: If you talk for a living, i.e. business man, teacher, etc do not get one put in unless absolutely necessary. There is the possibility that your voice will be reduced to a whisper or non-existent. Yes, all situations are different, but the risk is there. If I had the choice again, I would have opted to stay on meds only. It is extremely difficult to be a parent when you cannot talk. I have to whisper to my wife what I need the kids to do. Its funny because it looks like I am a defendant talking to his lawyer. lol I will keep an eye on this thread, so if you have any questions, let me know. I visit my surgeon and neurologist the first week of March so if you all having questions for a Dr, I will happily ask. Part 2 complete: It is on.
 

Cint

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Yes, there is a risk with the VNS. But for me the risk is having bad seizures, so I would much rather have the VNS with a few of the side effects, including shortness of breath and change in my voice when it charges. I have mine at a high setting, charging every 3 minutes for 7 seconds. Remember, I had my first VNS put in back in 1997 and back then I had two kids at home. My husband was a pilot and gone a lot, so I had to whisper to my children at times. I'm going in this week to see my neurosurgeon again for my 3rd VNS. For me, it beats brain surgery!
 
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You seem to be one of the lucky ones. I still think that unless all else fails, VNS should be a last resort. The VNS would have a drastic effect on a person who talks for a living. It could potentially end a career. Doing the research and chatting with others of whom had a VNS implant online, it is more of a nightmare than a dream. I am very happy for your success, but for myself, I wish I never had it put in. Others need to see the reality of the surgery. Not everyone gets a happy ending. I would rather deal with the petit mals the rest of my life.
 

Cint

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Doing the research and chatting with others of whom had a VNS implant online, it is more of a nightmare than a dream. I am very happy for your success, but for myself, I wish I never had it put in. Others need to see the reality of the surgery. Not everyone gets a happy ending. I would rather deal with the petit mals the rest of my life.
I'm sorry to hear that. But the same goes for brain surgery, too. For some, that is a nightmare. I wish I had never had that done. The invasive brain surgery caused more damage for me than the VNS ever did. Everyone needs to see the reality of all surgeries!
 
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Feb 13) Well it is turned on. It is definately interesting. You can feel the VNS as it goes off, it sends a feeling from your neck to just above your chest. It gives you the coughing sensation everytime it goes off which is every 5min. I have had a chance to use it to no avail. I had 3 seizures yesterday. I told the Dr that it will be a good test time since I was having a bad weekend full of episodes. So the first setting is not going to work, so lets see what the next setting brings. I just hope it doesn't have a puree setting. lol
 
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Feb 26) I have a week and a half till my Dr appt. I have had around 20 episodes this month. Its funny, I have this VNS in and my seizures have gotten worse. My voice is still just above a whisper. I have tried to go out to see friends, but with any background noise I cannot be heard. The longer I have this device in, the more I regret ever opting for it. You never realize how important your voice is until its gone. I am just ticked. Is it my fault? I would say partially. I was the one that did not dig farther into research. And my Drs for selling me on it. I will give it til fall and if there is not any noticeable difference then its gone. I will be back soon to update. -Jeff
 

valeriedl

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I got my VNS in 2007 because I was taking alot of meds and unable to have brain surgery. To be honest with you brain surgery, even if I could have had it, scared me more than getting the VNS.

The VNS isn't something you can get, have turned on then go skipping out of the hospital being seizure free.

It took about a year for the neuro to figure out what strength and how often for the VNS to go off. He moved it up to far to fast once between visits once which was causing seizures. He then had to lower it back down and move it up more gradually. Even now he will sometimes adjust the settings on it.

I had a good bit of the tingling in my throat when it went off. It took a while to get used to it at first, and every time it is adjusted. But now I don't even feel it at all. I also have some shortness of breath but other than these things that's the only side effects that I seem to have from it, I'm sorry that you are.

I am still having seizures and have to take meds but it's nothing like before I had the VNS. Going from around 20 seizures a month to about 5 or less, and they aren't nearly as bad as they were, is great.

As Cint said there are always dangers when you have surgery. I had screws put in my spine last month for back problems that I had for years. The pain would get so bad I would sometimes end up in the ER by ambulance on a stretcher because I just couldn't move.

I tried everything, and I mean everything, out there to see if it helped with the pain but nothing did. I went to a ton of different drs too and they all told me that I didn't have any problems there and they didn't know what was causing the pain. They took x-rays and CAT scans but said there was nothing wrong.

I finally found a dr, who was in the same office as another dr I went to, who took an x-ray and said I had a herinated disc. The discs were practialy bone on bone so this something that was there for years and not something that just popped up over night.

He suggested the surgery because he knew that I'd tried everything else. I think all of the other drs that I went to didn't want to do surgery on me because I have epilepsy. I knew that I might end up with spine damage and not beable to walk again but I was willing to take that risk to get rid of the pain.

Surgery went great. The only problem I have now is numbness in one leg and my feet. The dr said that's normal and it should go away but it will take some time. If it doesn't then he said he will test for nerve damage. I can deal with this because it doesn't hurt to move now.

I hope things get better with the VNS. Your journal is very interesting though.
 
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Thank you Valerie. I know that my story is on the bad side, but I am glad that yourself and Cint have been able to add positive side to the VNS. With being able to start off with my bad experience so far, and you guys with positive stories, it gives the balance to this thread that I was hoping for. It has been hell for the past two months. I see my neurologist in about a week and a half, so we shall see how it goes. Sorry to hear about your back. If its not one thing its another!lol -Jeff
 

Chaz1

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screaminghelix,

Thank you so much for this post, will be following your journey closely.....

I had some major throat surgery many moons ago and my vocal cords were damaged, and I was silenced for quite some time, training brought them back up, took a while but for sure there is hope there..

sure hope and pray yoor seizure activity starts to come down....
 
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Thank you Chaz very much. I am impatiently waiting for that Drs appt. I will keep try to keep you guys informed the best I can. -Jeff
 

valeriedl

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One thing that was hard for me with the VNS was learning when to use it. Someone else can always use it on you if you are having a seizure but you need to know when to use it on yourself before the seizure comes on.

Alot of my seizures come on with out warning so I didn't know that I needed to use the magnet to stop the seizure. I have started to realize sometimes when a seizure is coming on now so I know to use it. If you think that a seizure might be coming on you can use it on yourself and it won't cause any problems, you'll probably just start coughing like crazy like I do. I've realized when I do use it and don't start coughing then there was a seizure coming on or I was having one.

It will still go off at it's set time during the seizure to help stop it but the main point of the VNS is to use it before the seizure comes on to stop it from starting.

This took me a long time to learn to do.
 
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Cint

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One thing that was hard for me with the VNS was learning when to use it. Someone else can always use it on you if you are having a seizure but you need to know when to use it on yourself before the seizure comes on.

......... If you think that a seizure might be coming on you can use it on yourself and it won't cause any problems, you'll probably just start coughing like crazy like I do. I've realized when I do use it and don't start coughing then there was a seizure coming on or I was having one.
I've never had a hard time learning how to use the VNS. I've usually had an 'aura', so I could reach for the magnet myself and stop the seizure. Only one time about 5 years ago did I go into a bad seizure without the "aura" and was unable to use my magnet and stop my seizure. But at the same time we had re-set the timing of the VNS because I was fighting a bad case of bronchitis and it was interfering with my breathing, causing me to wheeze really bad.
The only times I've coughed is when my neuro is testing the VNS settings or I swipe my magnet over the VNS to stop a seizure.

It will still go off at it's set time during the seizure to help stop it but the main point of the VNS is to use it before the seizure comes on to stop it from starting.

This took me a long time to learn to do.
:agree: That is the point of the VNS- to stop the seizure before it proceeds any further. I learned that immediately because this was my last choice. I've had enough accidents and injuries from seizures!
 

valeriedl

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I've never had a hard time learning how to use the VNS. I've usually had an 'aura', so I could reach for the magnet myself and stop the seizure.
I only wish I had some sort of aura before my seizures it would be so much easier to know that I need to use it. My husband has told me that I don't look right and to use it. He usually knows when the seizure is coming on before I do. I just wish I had auras before all my seizures instead of only a few.
 

Janus

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WOW, sorry to hear about the struggles. I am wondering if that device is right for me? But I am not rushing into anything. Keep us updated, thank you
 
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