Survivor's Guide to VNS: Part 8 - Steri-Strips

When your VNS surgeon stitches up your neck and chest, he or she, may use Steri Stips to keep the wound closed. These actually turned out to be one of the most annyoinging parts of the surgery... There were not any decent instructions on how to remove the stupid things. I did as much research as I could, but never found anything that gave practical advice. So here is my best recomendation for dealing with Steri-strips:
Steri-Strips (Steristrips) are a nifty skin-closure product produced by the innovative 3M company. They have been commonly used to hold incisions together after surgery for many years now. Interestingly enough, there is not a lot of information on the web about the product. Evidently, the manufacturer and doctors assume that everyone knows exactly how to deal with the strips after surgery. Not quite so cut and dry. My surgeon, Dr. Brown, gave me a paper indicating that the strips should come off after about 7 days. That was it.

I went to pull them off after 7 days, but could not get them to pull away from my skin. I called the surgeon, but got useless instructions about them - "they can come off in 7 days". So I went searching on the internet... not much useful there either. So... I'm going to post my best recommendation, based on my experience, on how to deal with removing the strips:

1. Don't try to remove them until the time when your doctor says that you can, (3M recommends 7 - 14 days) and when you can get your wound wet.
2. Moisten the strips with warm water.
3. Pull very gently at the edges. Odds are, that you wont be able to pull very far.
4. Stop, take a scissor and cut off whatever part of the strips that are loose.
5. Wait till next day.
6. Repeat steps 2 through 5 until you have removed the strips entirely.
7. You will probably be left with some of the 3M glue stuff stuck to your skin. If so, you can remove the glue carefully with a cue-tip swab & rubbing alcohol.
8. The skin around the incision was still sore when I was trying to remove the glue, so I took several days to get it all off.

To anyone trying to remove Steri-Strips from their wound, take your time and don't let anyone try to pull them off for you!

When I did this post originally back in 2006, I got a few comments about other peoples experince with the SteriStrips. You can read them here.

Survivor’s Guide to VNS: Part 7 – Recovery

Recovering from the surgery depends on your overall health and age. Younger people heal a bit faster than older. People in poor health heal slower than those with good health. And of course, if there are complications with the surgery, that can increase the healing time as well.

Remember that Out-Patient surgery does not mean you are going to be feeling fine the next day. Your need to rest and take it easy. Four a few days you won’t want to turn your head to far – it feels like the wire-lead will be pulling on your neck… which it is, you just won’t be used to the feeling for a little while. Also, the area where the incisions are will be sore.

I had my surgery on a Thursday and planned to take five days to recover before going back to work. By the fifth day, I was feeling ok and thought I would be fine to work, but on day 6, I was feeling week again and decided to stay home. So on Wednesday I went to work. I managed to get through the day, but was exhausted. Although I had been able to get around and do just about everything, I had not been up and about for 11 hours straight… so by the end of the work day I was feeling not so good. I took the next day off and went back on Friday. I made it through O.K., but was still quite tired by the end of the day.

If I had to do it over again, I would leave at least 8 days to recover before going back to work full time. Although the cuts are small, they cut a lot of stuff under the skin and it takes a lot out of your body to heal.

Here are few questions I have seen on the VNS Message Board and elsewhere:

I’m having my VNS surgery on Friday. Will I be able to lead my Bible study class on Sunday?
No! Stay home on Sunday. Say a prayer the night before requesting a speedy recovery with no complications and sleep in on Sunday. Really, you won’t feel like talking for extended periods of time right after your surgery. Nor will you be feeling like going anywhere…especially with those stitches in your neck.

I’m having my VNS surgery on Friday. Will I be able to sing in the church choir on Sunday?
No. Stay home. You need your rest. As for the singing, get in as much as you can before your surgery and before they turn on the VNS. You aren’t going to be singing in the choir for much longer. Once your device is turned on, whenever it activates, your voice is going to be scratchy and you wont be able to sing, much less talk without “breaking up”. If singing is a major part of your life, you probably want to reconsider getting the VNS.

Can I go swimming the week after surgery.
No. You got to keep your incision site dry. The stitches will act like a wick and draw bacteria into the wound. Wait until the wound is healed and stitches are removed.

When can I start shaving my face again?
You can shave all around your face, just don’t get the incision site wet. Also, shaving on the left side of your neck is going to pull against the stitches and hurt for a few days.

How can I avoid having a scar on my chest and neck?
Some people recommend rubbing Vitamin E oil on the incision site – after the stitches or steri-strips have been removed. You can also get some anti-scaring stuff from your drug store as well. It is pretty expensive, but I have seen a few people that have used it and their scars are much less visible than mine… I didn’t use vitamin E or the anti-scaring stuff.

Survivors Guide to VNS: Part 6 – Day of Surgery

Your surgeon will call the VNS surgery: “out patient surgery”. In this case, what out-patient means is that your hospital will be your own bed at your own house and that your nurse will be a family member or friend who is willing to take care of you for a couple of days.

My surgeon offered local anesthesia or general anesthesia for the surgery. General has more risk as they put your body completely to sleep. I opted for this method as I really did not want to be awake as they were cutting into my chest & neck.

You will probably get some sheet with a list of instructions on what to do and not to do with regards to your surgery, here are a few tips they may have left out or did not emphasize enough:

Driving Home
You won’t be able to drive home after surgery… in fact, if you got the general anesthesia, you will be lucky to get in the vehicle without help, so make sure you have someone to cart you back to your domicile and feed you some well earned pain medications.

Phenegran
Remember that Phenegran that I recommended getting? Take that when you get home along with some of that “sick food” crackers & sprite. The general anesthesia and any other meds you took may cause you to get nauseaus… best to stop it before it starts.

Pain Meds
Hopefully you got your pain meds the day before like I suggested, because you are going to need them. Take them as prescribed and you will probably end up sleeping most of the day… and through the night.

Seizure Meds
Still got to take those too. So make sure that someone is around to keep track of all the pills you will be taking.

Rest
Don’t plan on doing anything but laying in bed the day of your surgery. Pile those pillows up and try not to move your neck too much.

Survivors Guide to VNS: Part 5 – Pre-Surgery Shopping

Before you have your surgery, there are a number of items you should purchase to make your post-surgery life a bit easier.

Pain medications
Have your doctor give you prescriptions for your pain meds. Pick them up the day before surgery so that you wont have to go out to get them or pick them up on the way back home from surgery.

Phenegran
General anesthesia tends to make people nauseous. It definitely did me. From first hand experience, throwing up everything in your system is not fun after just having surgery. Get the phenegran before you have surgery.

Lozenges
If you have a breathing tube in your throat while under general anethesia, your throat is going to hurt. Go ahead and get your throat lozenges. Any menthol based lozenge will help, but my favorite is Ricola!

Pillows
For a few weeks, you are going to be sleeping in strange positions in order to avoid pressing on your fresh wounds. Many people on the VNS Message Board recommend those beanie pillows. I ended up just mixing and matching pillows from around the house. In any case, make sure you have a bunch, and of different sizes.

Sick Food
Get a bunch of that food you eat when you have a cold. Crackers, chicken noodle soup, Sprite, yada yada… You really won’t feel like steak and potatoes for a few days.

Survivors Guide to VNS: Part 4 – Can my cat hear it?

I was surfing through the VNS Message Board when I found this controversial question:

Will my cat be able to hear when my VNS activates?
One lady claimed that her cat appeared to notice when her VNS activated. My response was that there was no way that could happen and that she and her cat were just imagining things. However, on further reflection, although the human ear does not pick up on any sound from the device, it might be possible that when the Vagus nerve stimulates the voice box, that the vocal cords emit sound that is inaudible to the human ear, but is able to be heard by a cat. So I suppose it is plausible that her cat could indeed hear when the VNS activated. In my personal experience, neither my dog or cat have seemed to notice anything when the VNS activates.

Can I still use a post hole digger?
Yes… after a while. Here is the deal, the implant isn’t stapled to your chest or clamped onto any bones, so it can move under the skin. Although it is mostly round, it does have a flat side with wires coming out of it. So when you make movements that cause your muscles or skin to rub against the device, it can be uncomfortable. For about 6 months, it was very irritating to my chest if I did anything that required repetitive movements that caused the VNS to move. But just last weekend, I dug a few holes with a post hole digger and did not have any problems. My recommendation: wait a few months before using your post hole digger.

Where can I go to get more answers about the VNS that aren’t contained in the Patients Manual or Physicians Manual?
First, make sure you read both of those manuals before you decide to have surgery. They are the official instructions from Cyberonics.

Second, ask your neurologist or surgeon. Odds are that neither of these has a VNS themselves, and won’t be able to answer very personal questions, but they are usually familiar with what their patients report.

Third, if you want information from people who actually have the VNS, post a message at the VNS Message Board.

Survivors Guide to VNS: Part 3 – Does it work?

This is probably the most asked question about VNS that I get.

Will the VNS cure my seizures?
I think that most people simply want a Yes or No answer as to whether it completely stopped you from having seizures. Unfortunately it is not that simple. The VNS will not cure you of epilepsy, but it can help control seizures or reduce the intensity and after-effects. The level of effectiveness varies between persons.

The studies by Cyberoics indicate that most people take anywhere from 3 months to a year before they get meaningful results from the device. In addition, many people report increasing effectiveness the longer they have the VNS.

Given all that, rephrasing the question would be the best way to get a meaningful answer. Instead of "Does it work?" ask, "What type of results are you getting from your VNS so far?"

Answer:
So far, the VNS has drastically reduced the intensity and severity of my seizures. I have had mine a year now and it has also reduced the number of seizures I have. I have high hopes that the device will bring additional improvement over time.

Survivor's Guide to VNS: Part 2 - Activities

More questions about VNS.

Will I still be able to play football?
Not so much. Although the pulse generator is encased in titanium and has about a zero chance of breaking open from a hit by a linebacker, the delicate leads are not so invulnerable. The leads are carefully wrapped around your vagus nerve and can come loose or break if you got hit in the neck by a ball or arm or leg or whatever. Use some common sense here and avoid activities that may involve objects colliding with your neck.

Can I swim with my VNS?
Sure can! That thing is completely inside your body and fluid-proof to boot! Granted, if your seizures are not completely controlled, you probably don’t want to be out there doing laps by yourself...

Can I still ride roller-coasters?
I rode the Top Gun roller-coaster at Carowinds about 6 months after my VNS surgery. I made it through ok, but the harness rubbed against my pulse generator and I was nervous about my head being jerked around. I survived just fine and my VNS system did not encounter any problems… but I don’t plan to ride any other coasters. Unfortunately, that was my last time I will get to experience 5 gravities while going 55 miles per hour through an inverted loop. Final answer: Not so much.

How about plane flights? Can I do those?
Yep! I have taken several flights since I have had my VNS. I haven’t had any negative effects from it.

Will the metal detectors go off at the airport screening?
Nope! The case is made of titanium and the battery is lithium. Neither will set off the alarms.

How about the magnet? Will the airport people give me problems?
I have carried my magnets with me on the plane. No questions about them at all.

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.

Survivors Guide to VNS

On January 12th of last year I had my VNS surgery. Although I had done a significant amount of research on the device and the surgery, there were a number of things I learned during the experience. I’ll be posting them over the next few days.

Wes Autry and Invisible Epilepsy

I watched an interview by David Letterman with Wes Autry last night. Evidently, the subway rescue incident did not start with the young man falling, but with him having a seizure on the platform. Autry and two other ladies helped the young man, Hollowpeter, because he had a seizure. Excepting the pen that Autry said they stuck in his mouth, his description of the methods they used when caring for him were quite good. After the seizure eneded, Hollowpeter recovered some, but then had a second seizure which caused him to fall off the platform.

It is interesting that the news coverage really doesn't mention any details about epilepsy. Call me bitter, cynical, or just plain grumpy, but if it was any other disease or condition, CNN would have Dr. Sanjay Gupta on the tube telling us all about it... for days on end.

Subway Hero Saves Man Having Seizure.

Cameron Hollowpeter, 18, fell onto the tracks at the 137th Street and Broadway Station after apparently suffering a seizure, according to authorities.

Wes Autrey, a Navy veteran and construction worker, was standing nearby on the platform with his children when he saw Hollowpeter fall. Autrey jumped down to the track area and lay on top of Hollowpeter as a train passed about "2 inches" from his head.

In the split-second he had to decide as a southbound 1 train approached, Autrey said he chose to stay in the "gutter" between two sets of subway tracks instead of trying to pull the victim back up to the platform.

"I chose to dive on top of him and pin him down and myself down," said Autrey, 50.

Autrey said the rescue was especially difficult because Hollowpeter was confused and frightened.

"He didn't know who I was," said Autrey. "He was incoherent. The train comes and I have to make the decision whether to struggle and try to get him up to the platform or dive for the gutter and just push him back. So my thing was to just push him back and lay on top of him."

Blogstuff - Blogspot II & Feedburner

I converted the blog to the new blogspot format. It wasn't hard, but it did require a good bit of cutting and pasting to get all the links correct. Today I added a Feedburner link down at the bottom. You can now easily add this feed to your RSS readers now. Here is the link:

Subscribe to Living With Epilepsy

Mistletoe a cure for epilepsy?

I am always on the lookout for a cure for my epilepsy... never did I imagine that it would be hanging right above my head. Evidently, some cultures believe that mistletoe can cure epilepsy... along with just about everything else. The passage below is from the A. Austin Amerine Spiritual Retreat Center website and represents only a small portion of the many uses for mistletoe.

From the Middle Ages to the last century, the literature is filled with examples of different uses for mistletoe plants, especially among rural people. It was cut, tied in bunches, and hung in front of cottages to scare away passing demons. It was hung over doors of stables to protect horses and cattle against witchcraft. In Sweden, it was kept in houses to prevent fire. Swedish farmers hung mistletoe in the horse's stall and the cow's crib, to protect against evil trolls. They also used the wood to make divining rods. In Italy it was believed to be able to extinguish fire. It was widely held to be a universal healer. As a potion it would make barren animals conceive. Even Pliny had known it was a cure for epilepsy, and that it could be used to promote conception. It healed ulcers if chewed. In Wales, mistletoe gathered on Midsummer Eve was placed under the pillow at Yuletide to induce prophetic dreams. Norwegian peasants hung mistletoe from the rafters of their homes to protect against lightning. There are various customs in several countries that utilized mistletoe plants in rituals to find treasure. Collectively, these customs prove that mistletoe had a profound effect on people's lives and imaginations since the remotest past of human history.

Happy New Years!

I hope everyone out there had a great Christmas and a seizure-free New Years!