Tuesday, January 09, 2007

Survivors Guide to VNS: Part 1 – To Cut or Not to Cut

Here are some questions I had for my surgeon, neurologist, and Cyberonics that I didn’t feel were answered adequately. I don’t think that it was due to ignorance or deception, but only that none of them had actually had the surgery themselves.

Does the surgery hurt?
Yep! It feels about like what you would expect from someone slicing open your neck and chest and then inserting foreign objects. Luckily, some clever people have developed some very effective pain killers that will help you until the wounds heal.

Will anyone notice the scars?
They sure will until they heal! The wounds will look like any other cut. For many weeks, the cuts will be red and swollen. For the first week or so, it will look quite bad. But what can you expect from getting significant incisions in your body?

Will the scars eventually go away?
They never “go away”, but they do get less noticeable over time. From my experience, the young people I have seen have the least noticeable scars. Unless you know exactly where to look and suspect that they may have a VNS, you won’t see it on their neck.

Will I be able to sing?
Not so much. The side effects of the device are such that when it activates, you will not be able to sing pleasantly during that time. Don’t plan on doing any long solos. And if singing is your greatest pleasure in life… you may want to reconsider having the surgery.

Will I be able to talk well?
Yes. Although it may take some time to get the settings to a point where you can talk easily during the time when your VNS is sending a pulse. A year after my surgery, and I still have difficulties talking for long periods of time or during the time when my device is sending a pulse.

Can people see the VNS wire/lead?
Yes… barely. In fact, so faintly that I had to argue with my father several times before he finally believed that the wire was not just another vein or ligament normally found on a neck. For the most part, unless you lean your head far to the right and then point at the lead, no one notices.


feldeee said...

Is there anywhere that the VNS incisions can be viewed. No, I am not a freak, I had VNS surgery 3 days ago. When the procedure was explained to me... "just a small incision under the collar bone to insert the device, and a small incision on the neck to attach the lead." Looking at myself in the mirror with the steristrips used... holy crap! I guess I should have had someone define "small incision". Both incisions are about 4" horizontal, very red and puffy. Is this the norm, or was my surgeon in a bad mood?

feldeee said...

One correction, while trying to research wounds and wound care- it looks like my wounds were sealed with dermabond or something similar. (Nothing was mentioned to me about how in the heck they fixed the cuts, or what to do. First look in the mirror scared the heck out of me, looked like an open wound with no tape or stitches! Excuse me, nurse... umm, you are sending me home. Are bandages not included in the price?!? lol)

Emeriol said...

I don't have pictures of mine. You should try the VNS Message Board (listed over on the left sidebar). However, my incisions are much smaller than "4. 2 inches for the chest incision and about 1.5 inches for the neck incision. There are a number of reasons that a larger incision might be needed - the nerver may be further below the skin. There may be more muscle or fat to cut through in order to place the device or leads. I would expect the chest incision to be larger for women in order to deal with any mamaray tissues which may be present in the chest area. I hope this helps.