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Question for VNS patients: Should I be concerned?

Hello everyone, I've had my VNS surgery on October 15th so I'm not sure how to look at this. On one hand I'm feeling really good but on another I have been loosing a bit of energy. The pain is subsiding like they said it would and I'm not taking the pain killers as much so that's a good thing. I am getting a bit concerned though about this recovery time from the VNS surgery though. The surgeon said two to three weeks when I had my follow up last week. UGH! For example, someone called me yesterday for a job interview; long story but anyway. I was on the phone constantly talking for at least a half-hour if not more than that. After I got off the phone with the employer, my voice was pretty much gone to froggy heaven. I could barely speak! I had to give a five minute live lecture that evening for my graduate class and was unable to do that so someone else had to speak for me which was very frustrating but anyway. I was so tired from the long lecture last night, I stretched out on the couch and think I fell asleep within 20 minutes. ha ha ha! A few questions to those of you who had gone through the VNS surgery. Question one, how did you go about regaining your energy? Question two, was it normal to take nap during the day because you need that hour recharge? Question three, have you had an increase in appetite since surgery? Sorry for the small bit of venting, I'm getting frustrated. Any helpful thoughts are greatly appreciated!

Comments

Re: Question for VNS patients: Should I be concerned?

Sorry you didn't get a response to this when you wrote it. Let me share a few thoughts now, though hopefully you have gotten some answers before now.

First is that having a VNS implanted doesn't mean that the seizures are solved. It takes a while to get the VNS programmed to an acceptable level - it may take weeks to months or more. People who have a VNS placed, should prepare to give it a year or more to see how well it works or doesn't. 

Second, the settings of stimulation are increased gradually according to how a person tolerates any side effects. Side effects do go away with time or lessen alot, but in the meantime, if voice change or other side effects are interfering with daily life there are a few things that can be done. For example, the programmer could adjust some of the settings to see if this lessens the side effect. Or, the person can tape the magnet over the generator - if this is lefft in place for over a minute, it will turn the device off for as long as it is held there. Once taken away, the generator goes back into delivering the stimulation. Thus, if the side effects bother a person when they are teaching a course, singing,exercising etc, they can turn the generator off during that time. People who have an implanted VNS should talk to their doctor and the person who is programming the device and go over when and how to trigger the VNS to deliver stimulation as well as how to turn if off temporarily to manage side effects. 

Here is basic info on using VNS for first aid and side effects. Hope this helps!

 http://www.epilepsy.com/101/vns_therapy_101

Epi_help, 
Resource Specialist

Re: Question for VNS patients: Should I be concerned?

Karl W. Greulich

I understand your frustrations. As for myself, I live in a relatively small city, although we have the only hospital within 90 miles here. There was one neurologist at the time I got my VNS but she left shortly thereafter and the replacement had no idea how to handle them. That doctor has now moved on to a larger city also and I have to go 100 miles each way to the nearest neurologist. To this point I have had only one appointment with him, but already things are going better. I am still taking 3000 mg of Depakote and 1000 mg of Primidone daily and with the adjustments he made my seiaure frequency went down and they are less severe.

 The doctor we had here had the voltage too high and it was very painful when it fired off. This new one lowered the voltage but made the VNS fire off for 7 seconds, pause for 40 seconds and then start the cycle over.

I do find that it seems like I really get winded after just walking a half mile or so. I am also tired all the time. I just hope that I will be able to get the seizure medication levels reduced and hopefully that will give me more stamina.

My history, for your information includes spinal meningitis, hydro-encephylitis requiring 2 surgeries in the 1950s and I had a left temporal lobectomy about 4 years ago.

Re: Question for VNS patients: Should I be concerned?

I have an urgent request for help. I am a VNS'er myself and have a friend who is hoping to get one. He has talked to several people who's VNS you can hear go off as well as have their voices dramatically affected when it goes off. This surgery will save his life, but living with an altered voice is a hard thing to reconcile with as younger person. If you don't have those side effects and would be willing to speak with him, please let me know. He is willing to call you on his dime and we will both be eternally grateful. Thanks, Yvonne 2879@sbcglobal.net

Re: Question for VNS patients: Should I be concerned?

Karl,

Sounds like it might help if your pulse width was turned up and your setting down'

I've had a VNS since 2000 and don't feel it come on, so I don't know when it goes off.

It works with my meds an dI've had E since I was two had brain surgery in 1982.

I'm on my 20th epilepsy drug.

a)abort (b)fail (c)retry (d)throw computer against the wall
southern and proud of it

Re: Question for VNS patients: Should I be concerned?

I had VNS surgery May 22, 2008 and it went well. I had these cuts that I didn't like made me look like I was some gang banger that got cut and the magnet seemed like I was on house arrest. I told me doctor, he was laughing. I told him with a straight face it is not funny, people are looking at me and then I am black. Then I just broke out laught, I said I am just playing. He told me you are funny. It felt funny to have a big round thing sticking up out of my chest. I didn't have any problems but breathing kind of funny and a little tired like I ran a marathon. No I didn't gain any weight and I don't sleep a lot. I didn't have any grand mals for a few months but Sept, Oct, Nov, and Dec. I did. So I started to wonder about it but the nuero-surgeon and the distrubutor of the VNS said it will take a year to really help you. So we will see. But a month ago I have been having a real bad time breathing. every five to ten minutes I barely can breath for a minute, so I can't talk, eat, or drink. It passes but it is so weird and when I talk to people it so embarrassing. At night my husband says I breath real funny. I went to my neurologist last week and he turned it down to see what happens in the next week, but I am scared because I don't want to have a grand mal. I don't know what will happen to you or anyone else but this is with me because everyone is different. Like you have different symptoms than I do. Just write down all your symptoms so when you do go to your doctor he will know everything. That is what I did. I hope you get better :).

Re: Question for VNS patients: Should I be concerned?

I also have a VNS. I got it Feb 08. It has taken it's time till they found the right combo of meds and number on VNS. It first when I got this I still slept , cause they were changing my meds. my breathing was ok, I am lucky I also have asthma. 1 thing you can do to help your seizures do not have anything with caffine it causes seizures. My Dr  told me and I read it. My VNS does  not stick out and u can not see were he cut me. I had to show my boys so they know. With he VNS. I hate to say it but your voice will always come and go,this something  I had asked my Dr.about. Take care, Kathy

Re: Question for VNS patients: Should I be concerned?

I had my VNS installed in Nov. '07.  I also had a concussion 10 years ago.  My seizures may be related to the concussion.  It took about 10 months to recover from the surgery.  I've had the setting adjusted a number of times.  The higher the setting, the more I had shortness of breathand fatigue.  I had a sleep study done.  The sleep Doctor said I had "terrible sleep architecture."  He let me try a c-pap machine.  It's normally used for sleep apnea.  I wasn't getting into a deep sleep plus woke up quite often during the night.   Consequently I was tired during the day.  The machine helped alot so I got one.  I use it every night for about 5 hours and then go back to sleep without it.  It also makes me more alert during the day.  My neurologist said it wouldn't help but I pursued it with the sleep doctor and got the machine anyway.  I'm glad I did.  It may or may not help you, but it's been great for me!  Good luck.

Re: Question for VNS patients: Should I be concerned?

hi,  i had the adventure in nov.  i have had the increase in the setting.   from my experience.  yes i take the nap to recharge.  i just get tired, and to do anything else is not productive.  the more you use you voice, as the vns is active, the more froggy your voice gets.  the weight gain yep.  mine is from the nap.  decrease in activity.   i have got to change my eating.  most any type of surgery can take six months to a year for recovery.  it is a physical and emotional recovery.  it will also take that amount of time for the results of the surgery to stabilize.  the sleep issue.  The same things happen when you sleep.  my wife says that my sleep is different.  it is on the five minute setting the vns is at, and resolves after 30 seconds. the concern about the grand mal seizures is normal, and the risk is there.  anytime you change anything in the treatment it can have adverse results.  the good thing with the vns, it can be reset to the previous effective level.  then it will be finding a way to deal with the other problems.   now on to the second big issue.  the venting.  the first thing i get here is information.  the second is support, with the ability to let loose with people that are there.  and get the kick in the pants, or pat on the shoulder.  so vent all you want.  hope it helps.  rikk

Re: Question for VNS patients: Should I be concerned?

I have had VNS since  aug 2001 it took this long for them to get to regulate with my brain  because everyones brain is different if they do it to fast it can fry our brains.  It has helped me tons I no longer have grandmals seizures. Some I talk to in the doctors office have seizures at all. It is harder for me cause I have scar tissue on my brain. I went from 18-22 seizure week  to 8 month  I wish everyone best of luck.

Re: Question for VNS patients: Should I be concerned?

It has helped me tons now that my health is better since I had other body issues  I am doing good.

I am very entergetic I am so hyper with the new med I have as well as ones I have been on

As far as feeling the vns well till this year i felt it always going off. When i went to the denist I got very strong antibotic  to heal me with bad teeth to what ever else was wrong. So anyone else whom has the VNS done make sure the antibotic is something strong to work with your body. An the vns is set the highest it can go.

Re: Question for VNS patients: Should I be concerned?

I've been getting depression counseling for the last 2 years and finally seeing a better psychiatrist.

Re: Question for VNS patients: Should I be concerned?

I have had a VNS since Feb. 2003.  I just recently stopped feeling it go off, my family and people that I speak to professionally say that they can hear it in my voice I never feel it anymore.  Concerning the fatigue yes, mine has increased since then and it gets even worse when I get a headache or sinus cold.  My doctor says that taking a hour nap in the afternoon can acutally be very good for our bodies.  The increase in appitite can also be a side effect but it usually decreases with time.  When you are going to give a presentation take some throat spray or drops right before and after it helps alot.

Re: Question for VNS patients: Should I be concerned?

I have had a VNS since Feb. 2003.  I just recently stopped feeling it go off, my family and people that I speak to professionally say that they can hear it in my voice I never feel it anymore.  Concerning the fatigue yes, mine has increased since then and it gets even worse when I get a headache or sinus cold.  My doctor says that taking a hour nap in the afternoon can acutally be very good for our bodies.  The increase in appitite can also be a side effect but it usually decreases with time.  When you are going to give a presentation take some throat spray or drops right before and after it helps alot.

Re: Question for VNS patients: Should I be concerned?

But to answer your question, if you are faced in a situation where stress will provoke a seizure, then yes, your seizures are considered to be uncontrolled.

Re: Question for VNS patients: Should I be concerned?

Is there somebody, who has had DBS to stop seizure...Is there much dirrerent  between who it works VNS and DBS ?

Re: Question for VNS patients: Should I be concerned?

I have found very useful information over there, thanks for sharing this. please try to add more informative posts in order to keep us in touch.

 

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Re: Question for VNS patients: Should I be concerned?

I have had the VNS since 2001. 

It is a challenge!  I thought I would be super woman w/ it.  My temperment is better but my seizure duration lessened which was good.

I can teach and be w/ students better.  My speech still is not clear at times when the VNS goes off but people understand me.  I rarely use the magnet.

I love to teach and help people !  Presently I have learned to be patient and let my system settle down before I go own.  Get my rest!    I wish you the best!

Re: Question for VNS patients: Should I be concerned?

I have had the vns surgery actually a couple and I have the voice thing happen to me when I am least expecting it and as far as nap yes I take more, eating yep I think it depends on the person myself it has helped my E after the others did not so I am glad I did it

Re: Question for VNS patients: Should I be concerned?

The VNS has worked to a point but it isn't exactly what I need. Now I'm looking at the next level of surgery because the VNS is not enough. For example, the VNS has been tweaked out to the point when I use the magnet it goes off and one of two things has occurred 1) I get the sting that goes up my neck which lingers or 2) sometimes the magnet cannot touch the seizure because it is way too forcefull. 

This has been an ongoing issue we've been fussing with for awhile between using medication and so forth. Now, we are seeking another option to replace the VNS that is stronger and has more settings that will provide higher output and better control for my needs.

I appreciate your feedback however, happy to hear it has made a difference. 

Re: Question for VNS patients: Should I be concerned?

I had mine installed on June 29 and I have to admit it didn't take me very long toget my energy back  I did feel very slow  for a few days but I was back at work within 2 weeks, I don't recall napping at all even though I went to bed much earlier than usual and my appetite has been fine since I had my surgery!!! Another problem I haven't had badly is my voice. It was hoarse after the VNS was put in now the only time I loose it is when I'm having the amps upped as I'm coughing very heavily. What sort of pains are you having as I'm having a pain problem too!!!

Re: Question for VNS patients: Should I be concerned?

   I had vns therapy for 3 years, and it caused seizures, migraines. I was not happy so i had it removed in 2008. The surgeon could not rmove the wire lead from my throat.

   I had to go in for an MRI 1 year later for some other health issue i i then found out i could never again get an MRI because of the wire lead still in my throat, it would burn my vocal cords up.

    I hope you think this procedure through carefully because it did nothing for me but cause pain and discomfort, and totally ruined my chances at having another MRI scan in order to diagnose another health problem.

    If i would have known that the wire lead in my throat couldnt be removed i would have never had tried this awful therapy. 

     Please think this through all the way.

                                                                                good luck,

                                                                             Joe, washington state

Re: Question for VNS patients: Should I be concerned?

louise

My son has the surgery for his VNS 10 years ago, he was 12 years old. The battery went dead in January of this year. We decided not to replace it. You are right about the wires, you cannot remove them. If I knew this 10 years ago, I would not have agreed to have the VNS put in. 

Re: Question for VNS patients: Should I be concerned?

   I had vns therapy for 3 years, and it caused seizures, migraines. I was not happy so i had it removed in 2008. The surgeon could not rmove the wire lead from my throat.

   I had to go in for an MRI 1 year later for some other health issue i i then found out i could never again get an MRI because of the wire lead still in my throat, it would burn my vocal cords up.

    I hope you think this procedure through carefully because it did nothing for me but cause pain and discomfort, and totally ruined my chances at having another MRI scan in order to diagnose another health problem.

    If i would have known that the wire lead in my throat couldnt be removed i would have never had tried this awful therapy. 

     Please think this through all the way.

                                                                                good luck,

                                                                             Joe, washington state

Re: Question for VNS patients: Should I be concerned?

" I hope you think this procedure through carefully because it did nothing for me but cause pain and discomfort, and totally ruined my chances at having another MRI scan in order to diagnose another health problem.

If i would have known that the wire lead in my throat couldnt be removed i would have never had tried this awful therapy.

Please think this through all the way."

I've had epilepsy since an infant, have taken over 20 medications in my life time, and the type of seizures I had been experiencing are not pretty. I had already had one brain surgery which did fail so yes, this was the only option because no other type of surgery was able to be done. Please know this was not taken lightly and due to the fact my epilepsy runs my life and has been running my life since infancy this is a matter that needed resolution.

Some people cannot tolerate how the VNS works. In your case, you chose not to deal with how it was going to work with your vocal chords even though it could work with your medication. In my case, I found another doctor who knew how to operate the item and could find the right settings. Something that we also discovered due to my type of epilepsy was the VNS was not enough. Because my seizures were implanted so deep inside my brain I needed to go one more step. After major testing was done of mapping the location was discovered where the seizures were coming from. I had a team of neurologists working together with one another to discuss my case and situation because this is was so intense.

Every person's case of seizure disorder is different and managed with the information that is maintained by the patient and the documentation from the testing achieved. Should a patient not be satisfied, he or she has the right to ask questions until they are comfortable and understand the situation. Worse case, the patient seeks out another neurologist that can better handle the situation which a patient has the right to do.

Because I was patient and willing to work with my neurological team of doctors and neurosurgeons we were able to get this issue resolved. I am now recovering very nicely from my most recent surgery of the DBS and update VNS battery in 2011. Because I am doing so well, I am actually looking at obtaining my driver's license at the end of summer.

S. Elvins

Re: Question for VNS patients: Should I be concerned?

So glad to hear this. My grandchild is only 9 and has the VNS. And now is having some complications. I have some questions and concerns in which I hope some one can share. He is not eating, no appetite. And so restless at night, lots of tossing and turning. And tired throughout the day. Is this common? Will this pass? Any suggestions, please. I hate to see my precious grandson in so much turmoil. Plus he is a child with autism, and not able to tell me if he is in pain

Re: Question for VNS patients: Should I be concerned?

I had the original VNS that came out for surgery done in the 90's.  It was a large VNS and I still had to take a lot of medications.  I now have the smaller one that got put in 3 months ago.  It's not a problem to take naps, I sometimes need to.  My apetite comes and goes with the implant.  I know that I need to eat but can't decide what to eat.

At times I feel tired but not so much.  I still have seizures with the implant and after one I feel more tired than usual.

I can't drive or work because of the seizures.  When I went in to my neurologist for a brain scan, he said the only way to get a full xray of other medical issues is by a CT.

Re: Question for VNS patients: Should I be concerned?

Hello wmgmather,

Did you get the DemiPulse VNS  or Pulse VNS on your new implant surgery? I guess I will have lots of questions while I am considering surgery but not sure which VNS to choose.

Did you feel better before your new implant and your negative symptoms began after the new implant? Please share any symptoms you've had since your post that you think can help me.

Thanks for your consideration.

 

Re: Question for VNS patients: Should I be concerned?

Greg

I had the VNS implanted in 2001, the battery replaced in 2007, replaced again in 2011, and the entire VNS replaced just into this year, 2012.  I did not have any side effects the other times, but when the entire VNS was replaced, since then my throat has felt like it does when I have a cold.

Re: Question for VNS patients: Should I be concerned?

I had my vns inplanted in 2005. For the next 2 yrs I had the device adjusted for duration, miliamps, etc. The good news was I was having little side effects. Bad news was I had no decrease in seizures. The vns showed to be operating correctly according to the readings my neurologist got on her monitor. I continued to contact my dr and they agreed to test the device in another way. While in his office, the vns settings were increased dramaticly. The dr told me I would experience a lot of disconfort. The only thing I experienced was an involontary twitch in my throat. He then determined that there was a break somewhere in the line. I choose the option to have another surgery by another surgeon. While in recovery, the dr told my wife that the wire comming from the vns had not been attached to the vegal nerve but to something else!

Since the new device has been installed and adjusted, I find I have to be a lot more concious while talking to make sure I am talking loud enough and that the inpulses are not impairing my speech too much. I have always had sinus and alergy problems, but now I seem to have to cough and clear my throat more often. I just had mine adjusted in april and plan on having it toned down some in june. I hope I was able to give u some infor you can use.

By the way, when I need to have my vns adjusted, the charge seems to be about $700. My blue cross insurance does not pay it. Have you ever had that experience?  

Re: Question for VNS patients: Should I be concerned?

First of all everyone has different experiences with the VNS. I had mine in may 2010, and from the time they put it on I had benefit from it. Like for instance on the lowest level I wasn't sick after every seizure anymore wich improved my appetite. They turned it slowly up and now it is one minute off and 15 sec. on. I still am hoarse every time it goes on, but I don't care because I used to have 30 seizures a month and now about 12 !!! So if people don't like me with a hoarse voice they are not my friends? They have also reduced the phenobarbital (wich was impossible without the VNS because it is a very bad barbiturate and I would have seizures untill I got into a coma) but with the VNS it wás possible! I must say that it takes me over a year but I had a very high dosis of the phenobarbital. Now they want to preform surgery when the barbiturates are all gone because I am not seizure free, but I knew that before I started with the VNS. It is already wonderfull that the barbiturates are almost gone because before I was just "sleepwalking" all day and now the world goes "open" for me.

That you cannot have an MRI is not quiet thrue, because if they have a special MRI they cán preform an MRI but they shut off the battery. From what I read above there is no battery at all, and the wires are not just metal they are from titanium, so you cán have an MRI. ( I know because I will have several MRI's before my surgery)

With regards,

Silver5 

Re: Question for VNS patients: Should I be concerned?

"That you cannot have an MRI is not quiet thrue, because if they have a special MRI they cán preform an MRI but they shut off the battery. From what I read above there is no battery at all, and the wires are not just metal they are from titanium, so you cán have an MRI. ( I know because I will have several MRI's before my surgery)"

Before surgeries it was fine but now things are quite different. My VNS was installed in 2007. I got used to that. But when issues began to get worse with it things needed to change. Now, I no longer have just the VNS. As of Sept 2011, I received a Deep Brain Stimulator for Epilepsy.

A lot of problems come into play at this point. The DBS cannot be shut off because that is what controls my seizure rate so no, I cannot just walk into an MRI as if it was nothing.

My VNS was turned off before the last MRI and I was double covered in order for me not to be shocked from the neurons. That is how sensitive my research hospital's technology equipment works. It is the best in the world but we did find a way to make it work. What I have been reading all over the place however is that should I ever need any type of testing such as a Cat Scan or an MRI done, that will be difficult to take place because the DBS has total control of my seizure threshold. I no longer take large amounts of medication because of this implant and my seizures are no longer occurring because of the settings.

-S. Elvins

Re: Question for VNS patients: Should I be concerned?

Titanium is a metal. It is just not a metal which is affected by magnets (like any iron alloy, such as steel). The "M' in MRI stands for "magnetic". So a non-magnetic metal, like titanium, should not be a problem in an MRI.

some people after or when

some people after or when they get shot get garbs talk to your doctor about post traumatic stress too that can cause problems if that helps

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