Agreed to the VNS

seizuregirl

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I had a bad seizure last week and was brought in to the ER because of it, the dr’s there found that since my neurologist had left the hospital, no other neurologist would allow a refill on my meds because l’m not their patient, I had tried to find a new dr but no one has been accepting new Patients since he had left. (I love dr’s, don’t you?)

I got my meds refilled, and 1 increased too by 1 of the ER dr’s, and had an appointment set with a new neurologist. I had the appointment with her yesterday and finally agreed to have it put in.

I just don’t want it! But it shut my Father and sisters up.
 

Nakamova

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I'm sorry that you were cornered into getting the VNS. If you're not 100% on board it's okay to say no. After all, it's your body that would be operated on, not your Father's and not your sisters. They should be supportive -- whatever you decide.

Make sure to get enough info about the procedure so that you feel confident with your decision. As you know, there are several CWE members who have had the VNS, and I'm sure they would be happy to provide advice.
 

seizuregirl

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The surgery will be on June 25, I was told it will be an outpatient appointment, if it’s longer for any reason, I won’t care.

So far, my Aunt is the 1 who’s the most worried about this, I’ve talked with her about it, showing her websites’ too, but is still worried, mostly because of the last surgery.
 

Nakamova

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Your aunt sounds like she has your back -- let her do the worrying for you. :) And keep us posted!
 

finalpoet

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My Dad is the most worried of all people. But I don't make decisions to please him. Every medical decision I make I consider his opinion and even if he disagrees I will always go with my decision not his. Because yes it's my body, he sees me have a seizure every so often but I deal with the side effects of the meds and VNS every moment of my life. So I will make the final decision.
As for the VNS it has helped me tremendously but it is all dependent on the person. I do hope it helps. Just know that I've heard that the VNS becomes more helpful over time.
 

seizuregirl

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Some of my agreeing to my sisters is that when my Father finally admits to being unable to take care of my twin and I, I’ll have to have a sister agree take me in and take care of me because of my epilepsy and short-term memory problems, being unable to drive is a big part of it too. And since I’ll be with them, I also have to make it easier to deal with me too.
 

C0urt

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talked to my derm about it, his neice has one, and it was obvious by the look on his face he wasnt happy about the choice. changed the entire mood of the visit to his office after i brought it. and he was just sour. told me to think about it first
 

Topcat

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It works well for me. At first it did hurt every time my neurologist turned it up, but as the seizure numbers started to decrease I didn't care. When I went to him I kept saying: "CRANK IT UP!"
Now I think I have the settings as high as they will go and although I still have some the number and intensity of them has decreased.
Now that Cyberonics (the place that makes them) is run by LivaNova they seem to be very supportive. There was a a woman from LivaNova named "Tracy" who kept calling me to make sure everything (which it was) going okay.
I'm on my third unit. Like other things powered by batteries they ran out of power.
I'm sure that the VNS Unit isn't for everyone but it sure was for me, and apparently your neurologist thinks it's for you as well.
 

Jeanbean

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Seizure Girl
I have a VNS and sometimes wish I didn't due to side effects-voice, heartburn, not being able to have MRI except with Dr's permission for special coil, other doctors being so unaware of what you can and can't have done medically etc. But on the other hand I think it has worked for me as my seizures became worse over the years and when I got the first one I noticed a difference. I got a new one two years ago and it has a special feature of noticing if your heart rate increases just prior to a seizure and will send an extra jolt. Just wondering what your doctor thinks about your decision? Good luck and hope all goes well. Jeanne Let me know how you are doing.
 

suebear

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I have a VNS that has done wonders for me and lowered my seizures quite a bit. We didn't think it would do much with the type I was having but in amazement it actually showed much promise and I felt like a new person. I was very happy with knowing we finally found something that could keep me going. Wish you the best of luck on this journey! Keep in touch!
 

seizuregirl

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I have it in now, the surgery itself went fine, I had problems with my voice being hoarse but that is fading thank goodness but my voice is very soft now and my family is having a hard time hearing me.

I had an appointment with the pediatric neurologist to have it set, my father was with me and was shocked that he could see it pulsing in my neck after it was done.

It’s feeling fine, just the skin from the cut on up to my chin is irritated and numb which I hope fade.
 

valeriedl

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I got my first VNS in 2007 and the second in 2013, only because the battery died in the first. It has helped me a with my seizures, I'm still having them but not that many and not that bad. It took a while to figure out what meds and settings to be on. He still adjusts the VNS settings from time to time depending on when he thinks it would be a good idea because of how my seizures are.

Hope thing go good for you and let us know!
 

Fedup

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Well you heard everybody, get more information and remember its your body. Valeried knows and can tell you much more about it.
 
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