Creating Passionate Users: Naked Conversations on a Bus

When starting my Living With Epilepsy blog, my primary intent was to be able to share with my friends, family, and strangers my experince with epilepsy. Updating everyone on my epilepsy was simply taking too much effort and having to repeat it over and over again in a consitant manner was difficult. Epilepsy & the drugs you have to take really mess up your memory, so keeping a consistant report of your health & progress is pretty futile at times. As I have developed the blog further, my aim is to educate as best as I can as many people as possible about epilepsy and how it affects one. Is this a "fools errand"? As a certified skeptic, I am not fully conviced that one can make much of a difference using a blog... but, I do have a few readers and most of them seem to think that blogs can change the world - one reader at a time. Kathy Sierra (a former skeptic) recently posted about her changing thoughts on blogging Creating Passionate Users: Naked Conversations on a Bus. It is a great read and highly inspiring to those who read or post to blogs.

From her post:
To those of you blogging (or commenting on other blogs) who may be thinking of giving it up... don't. You never know how the "butterfly effect" of that one sentence on your blog or a comment you leave--that someone found serendipitously (or even randomly)--can change a life. As a result of blogs, I've both changed--and been changed by--the lives of those I'd never have met in the pre-blogging world.

As for me...

I way under-estimated the amount of time it takes to fully recover from this surgery. Really, I thought since they said "out-patient" that it meant "better in no time at all"... not exactly what they meant. Evidently, having a metal disk shoved in your chest takes more than a couple weeks to deal with...

Still sore, parched mouth, intermittent mild pain in neck and chest.
-scott

Side Effects?

As for me... Last two days I have experienced some interesting feelings in my throat and chest area that seem to fit some of the side effects listed for VNS Implants. The "parched" feeling I noted on Friday is still there, but I notice it less. In addition to that, I have now begun to feel a small amount of pain at the area of the Vagus nerve, along the area of the wire, and at the pulse generator itself. The pain is intermittent, and seems to occur for about 5 - 20 minutes at a time. It does not always occur in each of the three areas at the same time. Very infrequently do I cough. For now, these feelings are meerly distracting.

As for seizures, since the device was turned on, I had two simple partial seizures on Friday. One in the afternoon and one in the evening, both while working on the computer. I don't expect the device to provide any seizure reduction for some time, but am trying to document seizure activity to provide quatitative data to measure.

My energy level is still a bit low, but I hope to be able to work a whole week straight. We shall see...

Coping With Epilepsy

I came across another Epilepsy Forum website today. If you are looking to join a community or get some advice, you may wish to take a look.

Side Effects?

A few hours after I had my VNS turned on, my throat & mouth started to feel... hmmm... I can best describe it as "parched"... a feeling that I just haven't had enough to drink and need to get a little something to sip on... it does not go away either. Some people have described similar side effects, but only when the device is on. If anyone with a VNS is visiting, I would be interested to know if this is a common side effect, or just my imagination.

VNS Activated!!!

Today I got my VNS Pulse Generator (model 102) turned on. I have to admit that I was a wee-bit nervous about it, but when it was turned on, I did not feel a thing. At this particular setting, I don't seem to experience any side-effects. Currently (pun intended) the device is pushing through .25 MilliAmps of electricity to stimulate the nerve... not so much current. I will be monitoring the effects of the device over the next 2 weeks, then going back to have the power and timing adjusted. According to the studies by Cyberonics, it takes most people quite a while to get any effect from the VNS device, so I won't hold my breath...

Hmmm... I seem to be having some tickling / scratchy feeling at the back of my throat... maybe it is the device going off. Don't know... more on side effects later

Jenelle's Journey

I found this blog about a little girl with Lennox Gastaut Syndrome - a severe and rare form of Epilepsy. It is called: Jenelle's Journey

Healing

I am still recovering. My external incisions are pretty well healed, but it seems that it takes quite a while for the insides to deal with the implanted plastic & titanium VNS implant. Both my neck and my chest are still quite sore to the touch. My energy levels are quite low as well. I definitly did not think it would take this long to be up to full strenth. I went into work yesterday and did alright, but if I had to be up and walking around for more than 10 or 15 minutes I would get a bit week. Today I am staying home from work to rest.

As for me...

Still not quite fully recovered. I tried to remove the steri-strips that function as stitches. But even after soaking them in water for quite some time, they were not quite ready to be removed. Maybe tommorow...

Seizure Alert Dogs

I found another site about dogs that can detect seizures. This lady is lucky enough to have one that can. I am skeptical about the ability to train dogs for this, but I suppose it may be possible. For me, the jury is still out. Check out her site - Seizure Alert Dogs

Epilepsy Chronicles

I found this blog tonight. A guy in Croatia recently started it to inform others about epilepsy. It is quite good. I highly recomend a visit -- Epilepsy Chronicles

SavingSara

A few months ago I found another blog where a lady had written about her daughter, Sara, that had epilepsy & VNS surgery. During lunch today I tried to find it, but it was gone. I was able to find another website by the same lady. I emailed her about her blog site. She said it had been deleted by Google because she had too many blogs. From her email:

"I wish you the best with your VNS. Beyond sad-- Sara died suddenly of heart attacks. She was 25 and I miss her too much."

She did not mention if her daughter died from VNS complications but did mention that there were problems using AED (Those heart-shocking devices) on people with the VNS implants.

Whew...

Made it through Friday. I carried around that picture I mentioned yesterday. It worked quite well. People were able to understand quite quickly what it was that I had implanted.

Almost there...

It has been 7 days since surgery. Today I was almost recovered. My energy level was much higher than yesterday. My recomendation for anyone having this surgery is waiting at least 7 days before going back to school or work. The general anesthesia really takes a lot out of you for two or three days, then you finally get to lay down flat and get some serious sleep. Not much pain from the wounds anymore.

I had a few people ask me if I got bit by a vampire... funny... the first three times... All in all it has not been too bad explaining the surgery. I have been using the picture posted a few days ago to show people. This seems to help a lot. I think that tommorow I will print out a picture on the color printer, it should make it a bit easier when walking the halls. I'm headed to bed now. I think some extra sleep will do me good.

First day back...

Today was my first day back to work. I had hoped to go back to work yesterday, but just did not feel as if I could make it. So I went today.... just barely made it through the day. It was very tiring. I had to explain the slash on my neck about 20 times, but it was not too bad. I even ran into one person that knew what VNS was... that was a relief as I was getting tired of explaining.... anyway, the day is done. It is 7:30; I am going to take some pain meds and go to sleep. :)

Neck hurts a bit

I seem to be healing up pretty well, but if I move my neck in certain ways, I will have a bit of pain. It is not too bad though and I am still deciding whether I will be going back to work tommorow. It will just depend on how long I can go without taking some pain meds.

Still recovering...

It has been three days since I had the VNS device implanted. I am finally able to lay down flat... which is very nice as sleeping in a sitting position is not so fun. My wounds are itching pretty bad. I think that means that they are healing. Best of all, I am able to go longer without needing pain or nausea medication. In two weeks I will be visiting my neurologist to get the VNS turned on. I don't remember the actuall date, but will post it as soon as I can find the paper.

Recovering

I am finally able to eat!!! For the last two days, I have not been able to keep any food down. Starting this morning, I have been able to keep down saltines, apple juice, sprite, and water. This evening I was able to eat some actual food. Christa cooked up a ham, mashed potatoes, peas, and hot rolls. It was delicious.

I gently touched the VNS Pulse device through my skin. The area around the implant was quite sore, but there was not any bleeding or brusing.

The pain medication I have been taking about every 4.5 to 5 hours seems to be working quite well. It makes me a bit sleepy after about 1 hour after taking it.

Another side effect of the surgery is that ZAP!! (Simple Partial Seizure) I have to sit up at a 45 degree angle for 72 hours. This is not so fun. All in all the surgery is not so bad. The pain levels seems to be comparable with what you would expect for having cuts in the neck and chest.

The Morning After....

I made it through the night... barely. I ended up waking up about every hour as I have to sit up while sleeping at a 45 degree angle... not so easy! (No wonder no one ever mentioned that piece of information BEFORE the surgery!!) I am able to take my pain medication, Hydrocodone, which works quite well. I've only gotten sick once so far... messy! Hopefully, I won't get sick again! I have to leave the bandages covering the two incisions on for 5 days. The steristrips which cover the incisions have to remain on for 10 days. Unfortunately for me, they are aalready starting to itch like crazy!!

Off topic - our cat, Domino, finally came back home this morning. He escaped early yesterday morning - before the surgery - and we weren't able to search for him.

The Hydrocodone is starting to kick in. I'll have Christa write more for me later.

VNS Surgery Complete

Scott just returned home from having the VNS surgery. The surgery lasted a bit longer than originally expected - 1 1/2 hours total - but Dr. Brown said that all went well. Scott is in a bit of pain right now (a 7 on the pain scale) and is resting while watching (er.. listening to) an episode of CSI. I'll try to post updates on Scott's condition over the next few days.

Thanks again for your thoughts and prayers!
Christa

VNS Surgery Scheduled

I just got the surgery time from the Dr. I will be going in at 6:00 AM EST. There will be about 75 min prep time, 60 min of surgery, and 60 to 90 min of recovery. If all goes well, I should be out by 10 or 11. I'll be sure to update this when I get out... er... or have Christa do it! :)

The Surgery

Here is how the surgery works...

Specfically, this is the procedure for cutting open the neck:
The electrodes are implanted in the left neck by either a "carotid" incision or a transverse "collar" incision. A 3-4 cm incision should be centered at mid-neck level (cricothyroid interval) and on the anterior border of the sternocleidomastoid muscle. The skin is incised with a #10 scalpel and the skin edges undermined with Metzenbaum scissors. The platysma muscle is divided in the direction of its fibers and the deep cervical fascia is opened to identify the sternocleidomastoid muscle. This muscle is mobilized and retracted laterally to expose the neurovascular bundle. This bundle is then incised to expose the carotid artery and jugular vein. The vein is retracted laterally and the main trunk of the vagus nerve is usually found deep between the artery and vein. Approximately 3-4cm of nerve should be mobilized from surrounding adventitia. Stay sutures in the carotid sheath can be utilized to deliver the nerve towards the surgeon. Mobilization and handling of the nerve should be done with fine forceps. Care must be taken to avoid injuring the main trunk or one of the branches.

I'll be doing this in about 48 hours. Wish me luck!

Late night with Monk and Wolf Blitzer

It is about 1 A.M. EST. I am in bed watching some late night cable shows and am having some simple partial seizures. ZAP... ZAP... they sort of interrupt your thoughts for just a second and make it hard to concentrate. ZAP... not sure why I am having so many right now. I suspect that it is a combination Zap... Zap... Zap... of being sleepy, taking medicine kind of late and Wolf Blitzer. Zap... His inane reporting and stupid questions are only rivaled by those of that lady reporter on MSNBC... ZAP... what is her name? Zap... She is on too. Still cant think of it. I'll try to fill in later (Rita Cosby). Zap... Zap... Zap... Turning to watch some Monk... does not seem to Zap... be helping. Although his character and dialog are much better scripted than the two talking heads mentioned Zap... before. These seizures are really bothering me. Only a few more days till Zap... Zap.. that VNS is installled. Zap... Zap... I have really high hopes for it. It is time for sleep. I will clean this mess of a post up in the morning. Maybe try to fix some of the grammer... add a link or something of interest. Not many people even read this anyway, I know, I put a little tracker on it. The seizures seem to be subsiding a bit... Good Night.

VNS v. Grim Reaper

Here is the scoop on unexplained deaths for patients with VNS implants:

During one of the clinical trials for VNS, some patients died. "Analysis was made of the Sudden Unexplained Death in Epilepsy (SUDEP) rate compared with the expected baseline rate. A group of 791 patients with implanted vagus nerve stimulators were followed for an average of approximately 2 years each. Among this group, 15 deaths occurred during stimulation, of which six were considered to represent SUDEP. The incidence of definite/probable SUDEP was 4.5 per 1,000 person-years, and the standardized mortality ratio was 5.3 times the baseline population rate. These mortality and unexplained death rates are comparable to those seen in recent studies of new antiepileptic medications, performed on a population of patients with severe seizures. No increased risk of mortality could be attributed to VNS."

A follow up study was done. The Sudden Unexplained Death in Epilepsy Population (SUDEP) and Standardized Mortality Ratio (SMR) was less in the second study which included more patients over a longer period of time. Summary of both studies:

Sudden Unexplained Death in Epilepsy Population
Mortality/SUDEP study to FDA (6/97) Epilepsia (2/98) Annegers, Hauser
~800 patients, ~1,400 patient years VNS SMR (5.3/1,000 yrs) and SUDEP rates(4.5/1,000 yrs) consistent with refractory epilepsy population
Two year follow-up study completed Epilepsia, AES 99 Annegers, Coan
~1,800 patients, ~3,200 patient years 30% lower SMR (3.6/1,000 yrs) Lower SUDEP rates after two years of VNS (1.7/1,000 yrs > 2 yrs vs. 5.5 < 2 Yrs)

The numbers are a bit hard to follow, but essentially, if you have epilepsy and get the device, you are no more likely to experience an unexplained death than if you have epilepsy and don't get the device. What the second study shows is that if you make it more than two years with the device, you are much less likely to have an unexplained death than if you didn't get it.

Both studies were done in the late 1990s with the model 100 device and model 100 leads. I have not been able to find any such studies using the Pulse 102 device and model 300 leads.

Sources:
Annegers JF, Coan SP, Hauser WA, Leestma J, Duffell W, Tarver B. Epilepsy, Vagal Nerve Stimulation by the NCP system, mortality, and sudden, unexpected, unexplained death. Epilepsia 1998;39:206-212

http://www.southshoreneurologic.com/clinical/epilepsy/vns/vns-results.html

Implant picture

This is the coolest looking diagram of the VNS implant that I have seen. Check out the close-up of the leads wrapped around the Vagus Nerve. Very slick.

VNS v. MRI

Once a VNS device is implanted, one can no longer get a standard MRI of the head or upper chest as the MRI may cause the leads to the Vagus nerve to become hot. As I had not had an MRI since my brain surgery in 1997, I decided to have one done to check and see if there was any other stuff in my head that might be causing my epilepsy... possibly something the doctors missed. Thankfully, there was nothing out of place. I did get some great MRI pics out of the deal though. Below is a slice of my brain... straight down the center. I will try to post more. Click on the image to enlarge:

VNS Surgery Pics

With out a doubt, these are the best images I have found so far of what the surgery looks like... odd that you have to go to Slovenia to find them.

Pediatric Neurology [Ljubljana, Slovenia]: Witnessing the first implantation of the vagus nerve stimulator (VNS) in Slovenia

VNS Here we come...

After much though and extensive research, I have decided to have the VNS device implanted. I will be getting Model 102. Surgery is scheduled for January 12th. Lots of news to follow... as I plan to blog my experiences with getting the device implanted and it's effects over time.

HAPPY NEW YEAR!!!