My VNS Journal

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I have bi-frontal epilepsy and after doing a ton of research and speaking with my neuro, a second opinion from a neuro at the major teaching hospital in my city, and speaking with the ENT that will be performing the surgery...I have decided to get the VNS. I will be getting it mid January. I am a runner and a tennis player, so my main concern was how it will effect my ability to exercise. I have been on just about every AED, with the exception of pheno. I have gotten severe rashes, hives, increased seizures...just about every horrible reaction you can get. I take a very high dose of onfi, but I still have breakthroughs. I have weighed the pros and cons and have decided the rewards out way the risk. I am working hard to get in the best possible shape prior to surgery in order to have a quick recovery. I will add entries as the surgery draws near and through the recovery process. Keep your fingers cross that this will put epilepsy in the "background" of my life. I have a 7 year old and aging parents. My disability can not control my life anymore!!!

xoxo
Karen
 

Cint

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Good luck with the VNS. It may take some time to get used to and your neurologist may have to adjust the stimulation several times before it works/controls your seizures. It can also cause wheezing, shortness of breath. I hope your doc has discussed this with you.

I've had the VNS since 1998 and have had three replacement batteries now. It was the last resort for me after an unsuccessful left temporal lobectomy and trying numerous meds. It hasn't completely stopped my seizures, only lessened them.
 
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Nakamova

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Good luck Karen and keep us posted. As Cint mentions the VNS can sometimes cause hoarseness & wheezing, so keep that in mind.
 
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Thanks friends. Yes, I do know it's not a cure and I will experience hoarseness. I'll deal with. I played tennis for two weeks with a fractured tibia!
I refuse to let epilepsy define my and will do whatever I can to keep it that way!
 

Birdbomb

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Good luck to you. Just keep in mind a few things. Hoarseness may be the least of your worries. There is a laundry list of side effects, not only was I hoarse, I developed asthma, and Severe Obstructive Sleep Apnea. Doctors get antsy when oxygen saturation percentage drops below 90% Mine is 47%. My awakening periods are over 300. Never had apnea before the vns implant.

When you cut into the body, you forever change that area of the body. Even if the generator is removed, the electrodes may develop too much scar tissue to be removed and must stay in the body like mine did. I cannot get an MRI because of those electrodes. CT scans and x-rays don't give enough information on the mass in my abdomen, or the effects RA has on my body, or the nerve damage in my lumbar area or my hands and feet from Chronic inflammatory demyelinating polyneuropathy.

I had none of these problems before vns.

Side effects can be mild but the truth is most people will have problems.

Please be sure. Be very sure.
 
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Question-- did a neuro or ent do your surgery

I'm having an ENT do mine. My neurologist said that they are more well versed in operating around and near the vagus nerve. Makes sense to me. I'm getting it done at Medical City in Dallas.
 

valeriedl

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It may take some time to get used to and your neurologist may have to adjust the stimulation several times before it works/controls your seizures. It can also cause wheezing, shortness of breath. I hope your doc has discussed this with you.
I have the same problems with mine. I am still taking meds along with it too. It took a while to figure out what setting and meds/dosages to be on. But once we got things worked out my seizures have reduced greatly from about 15 a month to on average 4 and they aren't nearly as bad. Even now my neuro will still adjust the settings from time to time depending on if my seizures might be increasing or decreasing between visits. I've been able to have the meds that I'm currently on reduced too through the years.

I can't have an MRI either but I can't have one any way because I have screws in my back.


Question-- did a neuro or ent do your surgery
It was a neuro surgeon who did the surgery for the VNS, putting it in and battery replacement. It's my neuro who does all the adjusting of the VNS.
 
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Interesting. An ENT is doing my implant. My doc said that Neurosurgeons don't really like to do it and ent have more expertise working around the vagus nerve. This could be a fairly new practice. My epileptologist/ neurologist will of course make all the adjustments. After the surgery how long were you in bed? They told me it would be three days till I feel good enough to move around and the soreness will last two weeks. I play tennis and ai hope it doesn't mess up my back hand. Surgery scheduled for 1 week from today!
 

valeriedl

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After the surgery how long were you in bed? They told me it would be three days till I feel good enough to move around and the soreness will last two weeks.
I had my VNS done about 10 years ago and I have very bad memory problems so had to ask my husband. He thinks thinks I might have came home the same day as the surgery or maybe the next. I know I wasn't sore at all after the surgery.

I play tennis and ai hope it doesn't mess up my back hand. Surgery scheduled for 1 week from today!
I have no problems with my arms, neck or hands because of the VNS so you shouldn't have anything to worry about.

Good Luck!!!!
 

arnie

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Hi Karen. I had my vns placed almost exactly three years ago. I had done lots of research and was very hopeful that it would help alleviate the hundreds of partial seizures I was having each year. Unfortunately, it never really worked. There was a lot of pain whenever it cycled on, I had hoarseness, choking and shortness of breath, (which made it hard to exercise continuously) and I developed sleep apnea. The side effects were so bad that we never got it up to a therapeutic level and the doc shut it off after about 3 months. All of the problems have gone away except for the sleep apnea, which seems to be getting worse. I'll be going in for a sleep study pretty soon, and will probably end up using a CPAP machine at night. The other ongoing issue I have, which is relatively minor, is that there is occasional itching over the site of the generator. Maybe 3 or 4 times a day, or so.

I know that many people have had success with the vns, but unfortunately I am not one of them and would be hard-pressed to give it an endorsement. I got my seizures under control by figuring out a few dosing tweaks with my medication (Lamictal) and have been seizure-free for almost 3 years. Here's a link to my thread on my vns experience. I'd encourage you to read it and perhaps consider doing more research before getting the surgery. Also, if you do get the vns and have shortness of breath, you can probably just shut it off with the magnet while you exercise. I have also posted some suggestions on alternatives to the godawful magnet that you get with the unit. PM me if you have any questions. http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/
 

Cint

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Interesting. An ENT is doing my implant. My doc said that Neurosurgeons don't really like to do it and ent have more expertise working around the vagus nerve. This could be a fairly new practice. My epileptologist/ neurologist will of course make all the adjustments. After the surgery how long were you in bed? They told me it would be three days till I feel good enough to move around and the soreness will last two weeks. I play tennis and ai hope it doesn't mess up my back hand. Surgery scheduled for 1 week from today!
Good Luck. I hope you have visited the www.Cyberonics website. There is plenty of info you need to know.

I've had three VNS surgeries done, all by a neurosurgeon. But according to the Cyberonics website, an ENT dr. can do it as well.

www.cyberonics.com

Will my current doctor perform the procedure?

No, specially trained surgeons will perform the VNS Therapy procedure. An ear, nose, and throat (ENT) specialist; a neurosurgeon; or a general surgeon will perform the surgery. But you will continue to see your neurologist afterwards for help with your medication and VNS Therapy dose adjustments.
And remember, it is NOT a CURE!
 
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Thanks for all the input. As I have mentioned several times, I have done my research. I KNOW IT IS NOT A CURE. Five days from surgery, I am focusing on staying calm, being positive and optimistic. I have bi frontal epilepsy. I don't have any other surgical options. I don't have focal points. When I have a seizure, my whole brain lights up. ALSO, as mentioned before, I have severe drugs allergies and have almost died to adverse reactions from more than one AED. I would much rather try this out than take another medication that could potentially kill me. I'm sorry that so many have bad experiences with VNS, but it has helped many. Please do not message me your horror story or your opinion on how it is ineffective. I know what I'm getting into and don't need any negativity this close to the operation. Thank you if you are trying to be helpful, but this is MY VNS journal and if you don't have anything encouraging to say ..... don't say anything. AGAIN, I HAVE thoroughly researched the VNS and I have complete confidence in my Dr. that he has my best interest in mind.
Dont mean to be a bitch, but I'm over the negativity. Its going down and I am going in with a positive and optimistic outlook.
 

seagull

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I think your in righ place in your mind and body it will be successful when you in right zone.and you sound confident positive strong person that's half the battle won
 

seagull

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It something I going to research see help me It your post that kicked my arse to be more educated and get my mind and body healthy.your confidence has rubbed off on me your posivity is the kick I needed
 

Nakamova

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Good luck Karen, I hope all goes well.
 
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Thanks so much. As a single mom, I have no choice but to be determined and stay positive. It is all for my daughter!
 
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