my vns experience

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Thanks guys! I appreciate the good wishes. Q, you might be right about it being a cp instead of an sp. I guess that there can be sort of a gray area between those two seizure types. I know that loss of consciousness is cp, but we can certainly have screwed up consciousness in the sp szs, ya know? Oh well, I guess it doesn't really matter, does it? I have high hopes for the VNS. I know it may take a while for it to work, but I definitely want it to. I'm getting tired of the seizures and the meds!
Thanks again for all the good wishes. I'll be checking into the outpatient surgery dept in 12 hours. I'll try to update y'all when I get home tomorrow!
 
You may not be reading this till you get back from the hospital but I just had my second VNS put in a few weeks ago. I basically had no pain at all. The only time it hurt was when I touched it and it was like I was touching a bruise. Didn't have to take any type of pain meds.

I don't remember what it was like when I got my first one though and it was in 2007 and my memory isn't that great. I have a pretty good tolerance for pain and it's only because pain meds, no matter what, don't seem to do a thing for me.

I know my family didn't say anything like "I hope this one didn't hurt you as bad as the other one did" when I got the surgery this time.

Good luck, hope things go good!!!!
 
Thanks Valerie! I don't really anticipate that it will hurt much. My wife was wondering if the device makes a lump or anything under your skin. Is it visible at all? I can't have my career as a macho underwear model ruined!! (NOT!) :)
I'm kind of like you on the pain meds. Not only do they not do anything to take away the pain, they also make me really nauseated! I actually think that pain is easier for me to deal with than nausea. I'm feeling ok about the surgery now, but I was getting a little weirded out earlier today. I appreciate knowing that you guys here are in my corner. Thanks!
 
You'll have a scar about 2 inches long and maybe a 1/4 of an inch wide. That's the only thing that's going to be visible.

I don't know if I may have typed it wrong but you shouldn't have any pain at all. It wasn't a constant hurt only when I touched it and that was like touching a bruise. And I didn't take any type of pain killer, even when I came home from the hospital.

I did go without a bra (don't know if you model those?) for a week because it was putting pressure on it constantly it. And that wasn't even bad, more or less just uncomfortable.

There's basically no bump at all. If you didn't know the VNS was in there then you wouldn't even be able to tell. The only actual 'bump' was from the scar.

So you should be able to keep your job as an underwear model, just might have to wear a tank top to cover the scar - lol!

Let me know how things go.
 
Well, if my timing is right, you've probably just gone into surgery. Wishing you a successful surgery, your surgeon to have steady hands, and a speedy recovery! :tup:
 
lotsa hugs arn, we're here for you.
hehe you sexy underwear model you got a lot of girls rootin' for ya ;)
 
Arnie, I'm so glad you posted because I am in almost exactly the same place you are, with the concerns about losing my brain function, worries about long term effects of Dilantin, with a neuro wanting to do VNS or a lobectomy. Unfortunately we have very different types of epilepsy. My focus wasn't too hard to pinpoint--it took only four days and they found it--and I have generalised tonic clonics (temporal lobe) but I would really love to hear how things progress with your surgery because I still have to make the decision.
 
Kirsten,

I also have had two VNS surgeries and one lobectomy. Personally, I would go for the VNS surgery. I've had much better luck (if you want to call it luck) with the VNS than with the lobectomy (on the left temporal lobe). With brain surgery, there is NO turning back, and depending on where in the brain, it can impair your speech, memory, and lots of other issues. Or it can make it better. The brain surgery also made my seizures worse in the long run. The VNS can cause vocal issues for some and for some it may not work at all. But for me, it was the answer. I also have it at the highest setting because no meds or the brain surgery worked for me. Plus, I still take two anti-seizure meds along with it.

Do all the research, Kirsten, before you make a decision. Have you checked the www.cyberonics.com website?
 
arnie said:
My wife was wondering if the device makes a lump or anything under your skin. Is it visible at all?
I'm kind of like you on the pain meds. Not only do they not do anything to take away the pain, they also make me really nauseated! I actually think that pain is easier for me to deal with than nausea. I'm feeling ok about the surgery now, but I was getting a little weirded out earlier today. I appreciate knowing that you guys here are in my corner. Thanks!
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The VNS they put in me, there is a small lump and it's visible along with the scar. The scar on the neck where they wrap the wire around the vagus nerve is visible for a few weeks, also. I don't remember taking any pain meds when I went home after surgery. The VNS surgery is a piece of cake compared to BRAIN surgery!! ;)
 
Wow, Cint, great referral. Thank you. I did their quiz and I didn't have to click on anything because all my answers were negative. It made me think that i deserve a chance at a better life. I will research outside the site as well. It is SO good to hear you say it helped you. Actually, when the neuro mentioned it I teared up because I was so relieved. I put a little weight on that sort of response. Not that it's logical or based on evidence but that there is something to be said for intuitive responses.
 
kirsten said:
Wow, Cint, great referral. Thank you. I did their quiz and I didn't have to click on anything because all my answers were negative. It made me think that i deserve a chance at a better life. I will research outside the site as well. It is SO good to hear you say it helped you. Actually, when the neuro mentioned it I teared up because I was so relieved. I put a little weight on that sort of response. Not that it's logical or based on evidence but that there is something to be said for intuitive responses.
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You are welcome, Kirsten. And yes, you DO deserve a better chance at life! :tup: Don't let the negativity of others bring you down. Listen to your inner voice.
 
WOW, I am praying for you because its TODAY. Can't wait to hear from you.
 
Well, I'm back among the living, so to speak. The surgery went well, I'm back at home, had some food, am drinking tons of water and wishing the anesthesia "aftertaste" would go away. As I sad earlier, I don't take pain meds, and I really feel no need to at all. The worst pain was the stupid dressing pulling on my chest hair! The nurses said I could shower and take those coverings off today, so off they came! Feels better now. I'm still kinda groggy so I guess I'll drink some more water and go sit in my recliner again. Now I guess I wait some more until I can get it activated. One day at a time. I really appreciate all the good thoughts from you great CWE peoples! Cheers!
 
:hugs: yay so good to hear from you friend!!!!!

so, dressing pulling your chest hair and the yucky aftertaste, not too bad at all!
and YES you sit in your recliner and let everyone pamper you. bring food, water, hugs and a blanket if you're wiped out. staying warm is key.
more hugs! luv nat.
 
Thank you Arnie, That sounds great! Glad you among us now.
 
It may take awhile to figure out what settings it needs to be put to and if you are going to need to still be taking meds. It may take awhile to figure out what the right meds and dosages are that you need to be on too if you are going to have to take them.

Yep, take it one day at a time. But hopefully things will get figured out quickly!
 
I'm rallying again. I felt pretty good shortly after the surgery, but last night and this morning I started feeling horrible, like I had the flu. I looked up on the internet and found that many times people can feel that way after general anesthetic. I have felt super tired before but never sick like that. Getting better, though, and I don't have anything I need to do all weekend so that's good. There is absolutely no pain at all from the incisions, which is just fine with me!
I have a follow-up with the surgeon on the 17th and then with my doc on the 20th so he can turn this thing on. I know that it may take quite a while to get all the settings and meds dialed in, but that's ok. Time goes by quickly anyway, doesn't it? Especially as we get older!
 
arnie said:
Time goes by quickly anyway, doesn't it? Especially as we get older!
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:rock: you got that right!!

and i hear you re: anaesthetic. bad. after surg i was in ICU for 24 hours then my own room, where i puked repeatedly. in the first five days i maybe felt okay half a day, then right back in the bathroom. from throwing up coffee to water to a bit of food to drugs i easily was sick 100 times or better. losing 15 pounds haha wasn't so bad but still, we can only take so much wretching before we start losing our minds.
lol pardon the pun, guess i just had ;)
 
I am reading these posts this morning and am saddened that I didn't get to wish you good luck, Arnie. I, along with everyone else, look forward to hearing about your experience. I hope the procedure went well and that you're feeling comfortable and safe.
 
Arnie, glad to hear that the surgery went well, hope you are feeling better and taking it easy.
 
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