Tuesday, December 25, 2007

Merry Christmas!!!

I wish you all a very wonderful Christmas!!!

Tuesday, November 06, 2007

Epilepsy Shot

I got my yearly flu shot today... if only they had a yearly epilepsy shot... one can hope? right?

Thursday, October 11, 2007

PET Analysis Report

I finally got a copy of the report from my P.E.T. scan. The good Dr.s at WFUBMC provided me with this:

FINDINGS:
There is evidence of prior right frontal craniotomy. An area of encephalomalacia is identified deep into the craniotomy site. No metabolic activity is identified in the region of the encephalomalacia. The remainder of the brain demonstrates normal and symmetric activity. No addiional areas of hypo or hypermetabolism.
**************CONCLUSION**********************
1. Status post right frontal craniotomy with underlying encephalomalacia.
2. Otherwise normal and symetric metabolic activity within the cerebral and cerebellar hemisphers bilaterally.
**********************************************


Wow, so that is a lot of stuff. So I looked up all the funky M.D. words (and provided links for your pleasure) and determined that:
1. I have had brain surgery before and there is scar tissue.
2. My brain does not have any crazy activity with regards to blood flow.
3. Both sides of my brain are functioning in the same way.
4. No tumors detected.
5. I still have idiopathic epilepsy - that is: the M.D.s don't have a clue as to why I am having seizures.

Tuesday, October 09, 2007

Blogger V. Squirrels

Evidentlly I'm not the only Epilepsy blogger that took time to blog about their squirrel issues. Sicilianna, a My.Epilepsy.Com blogger, writes this:

I woke up at 4:30am to the sound of some sort of critter making noise in the ceiling. Last February we captured a family of flying squirrels that had nested in our attic. I fear some little cousins may have heard there was a vacancy and taken up residence. Once I realized the rolling of acorns and scurrying of tiny feet was not going to stop any time soon, I gave up on falling back to sleep and decided to get out of bed.


Check out her blog: Sicilianna's blog : Always move forward! My Life (So Far!) With Epilepsy.

Off Topic: Blogger V. Squirrels


I arrived home yesterday to the unmistakable sound of a Squirrel in the wall. Yes, a squirrel stuck in an interior wall of the house - scratching and clawing at the wall in a vain effort to climb the Sheetrock. Why unmistakable? Because the same thing happened last year - one of the neighborhood squirrels managed to make his way into the attic and then, due to an odd architectural feature of the house, managed to slip down one of the gaps into the wall.

So I proceeded to listen carefully against the wall, make a guess as to which section of the wall in which the squirrel was trapped, then cut a hole in the wall. Once the hole was opened, Ryan and I gave fair warning to Christa that she may want to exit the room for a moment while we extracted the vicious beast. After a few minutes of chasing the squirrel around the room, I managed to bag him and then let him out the front door.

I was pleased with the work until I went upstairs to cover the hole and heard a second squirrel scratching away in a different area of the wall. Ug. Same routine as before, except this extraction required two holes as my first guess was wrong. After the beast was released, I covered up the holes and called it a night.

This morning I awoke to the dreaded sound of scratching. One of the little beasts was trapped again... this time in yet another section of wall. I did not have time to get him out this AM, so he is still there. Hopefully I can get him out tonight...

Monday, October 08, 2007

Brain Radiator

I'm not sure if you will see any clinical trials on this little gizmo, but it is still pretty cool. The idea is that by cooling the brain, you can reduce seizures. I found this at the New Scientist Invention Blog.

In severe epileptic fits, over-excited brain cells fire at such a rate they can raise the brain's temperature in that area. This causes more nerves to fire in a feedback mechanism that makes the fit even worse. One way of preventing such escalating fits is to cool the area of the brain that is susceptible.

So Takashi Saito and colleagues at Yamaguchi University in Japan have developed a heat pipe that is surgically implanted into the affected region of the brain and then connected to a heat sink on the outside of the skull. This device carries heat away from the affected area, keeping it cool and reducing the chances of severe epileptic fits in future.


Here is an image from the patent application:

Get some sleep

This article I found on Epilepsy.Com contains some interesting info on sleep & epilepsy. Check it out.

Thursday, September 27, 2007

Wednesday, September 26, 2007

PET....

I'm still awaiting the report from Baptist Hospital regarding my PET scan. I'll probably call tommorow to find out what is taking them so long.

Friday, September 21, 2007

PET Scan Pics

Here are a selection of my 147 PET scan images that they put on a CD for me. I can't really tell much from them... so I will have to wait for a Dr. to analyze them for me.


Wednesday, September 19, 2007

Epilepsy Awareness Day

The local epilepsy awareness group with which I participate, NC EASE (North Carolina Epilepsy: Awarness Support Education) has organized an Epilepsy Awareness Day in November:

NC EASE and the Epilepsy Institute of North Carolina invite you to join us for our first annual Epilepsy Awareness Day.

The event will take place at the Epilepsy Institute, 1311 Westbrook Plaza Dr. Winston-Salem. From 10 A.M. to 2 P.M. on November 3rd, 2007.

There will be activities for children.

We will have a number of presentations and information on the following topics:
* Epilepsy and seizure disorders.
* First Aid instructions for seizures
* Tests for epilepsy
* New treatments for seizures
* Clinical trials for new treatments for epilepsy
* College scholarships for people with epilepsy or their family members
* Epilepsy support dogs

If you have any questions please contact us via email: coordinator@epilepsysupportnc.org

Tuesday, September 18, 2007

One month...

I am seeing my Dr. today. Hopefully the PET scan will provide some information of use. I have tried looking through them myself, but am obviously not qualified... as I can't tell a thing by examining the images. I'll try to get some posted soon.

My last seizure was exactly 1 month ago. Hopefully I can make it a few more decades without another. Wish me luck!

Monday, September 17, 2007

8 Thousand Hits

I got my 8 thousandth page hit today. Someone visiting from Proberta, California.

I started this blog so that I would not have to call up everyone I know to tell them what was going on with my seizures... they could all just check on me here. I never thought I would end up getting 8 thousand hits. This new-fangled Internet thingy is pretty cool. ;)

Thursday, September 13, 2007

PET PICS

Here are the pics of me with my EEG leads wrapped tight to my head.

And the two techs who wrapped it.

This is me about to go into the PET scanner.

Wednesday, September 12, 2007

The PET Experience

I just got back from the imaging center at Baptist Hospital. The procedure was not that bad. Here's how it went:

I went and got EEG leads placed. They then wrapped my head tightly with gauss so that the leads would not fall off as they took me over to imaging. I get there and go over some paperwork and they request some cash before doing the test. Then they stick me with some saline fluid and a "butter-fly" needle. After a wee-bit of saline, the tech brougt out the radio-active stuff, glucose with radioactive flurine. Not much... just a few ml. He had to bring it out in a case about the diameter of my arm and perhaps 10" high. After inserting that, they had me sit in the dark for 45 minutes. The instructions were to try to rest and not think too much. THAT was rough. After about 30 minutes my head started hurting really bad. I'm not sure if it was lack of food, the EEG leads pressing into my head, or the radio-active positrons flying out of my head. But I made it through and then they removed the portable EEG & Leads. Then they put me in the tube detector thingy. It was a bit larger than an MRI, but not nearly as loud. I only had to stay in that for 10 minutes. And that was it!

I got a copy of the images. I'm still figuring out how to get the things off the disk and onto the net. Soon as I figure it out, I will post. I won't know any news about the test until my dr. or another Dr. gets to do the analysis.

Food v. PET scan

For this PET scan, they have instructed me to not eat after 7:00 A.M. All I get is water! I am going to be so hungry. But Christa said she would take me out for food after the test is done. I am thinking of a Texas Jack burger from Back Yard Burgers. Yum!

I suspect that they will attach the radioactive material to glucose and then since I have not had anything to eat, my body will send the sugar to where it is most needed in the brain. From there, the radioactive stuff should emit the positrons which are detected by the PET gizmo. I'll ask the techs and let you all know if I am correct.

Tuesday, September 11, 2007

Testing Tommorow

I'm getting a PET Scan and EEG test done tomorrow at Baptist Medical Center at their Epilepsy Monitoring Unit. I've never had a Positron Emission Tomography scan before, but as I understand it, they pump some radioactive stuff in your body and then use a detector to determine where it went... well, it is a bit more complex than that, so here is some info off a Radiology site.
Before the examination begins, a radioactive substance is produced in a machine called a cyclotron and attached, or tagged, to a natural body compound, most commonly glucose, but sometimes water or ammonia. Once this substance is administered to the patient, the radioactivity localizes in the appropriate areas of the body and is detected by the PET scanner.

Different colors or degrees of brightness on a PET image represent different levels of tissue or organ function. For example, because healthy tissue uses glucose for energy, it accumulates some of the tagged glucose, which will show up on the PET images. However, cancerous tissue, which uses more glucose than normal tissue, will accumulate more of the substance and appear brighter than normal tissue on the PET images.


I'll post more tomorrow. Hopefully with some pictures!

Tuesday, August 21, 2007

Grateful for the Past 11 Days

Scott had another tonic clonic seizure this evening around 6:00 pm while at the Epilepsy Institute. He did not injure himself (thank the Lord!) but had to be put on oxygen for a while. He is resting now. We are grateful for the past 11 seizure free days and realize that 11 days is more than most epileptics have without a seizure. Dr. Dean is going to send him for some more tests - presumably some time later this week. I'll keep you posted as soon as I learn more. Please join us in saying a prayer of thanks that Scott was not injured this evening. Please also keep him in your prayers as he undergoes additional testing.

Thanks everyone,
Christa

Monday, August 13, 2007

3 days...

Well, I have to start again... 3 days no seizures. Discouraging, but a lot of people would be thrilled to make it that long. I count myself fortunate. :)

Friday, August 10, 2007

Another Day.... Another Seizure

Scott had another tonic clonic seizure this evening. Our son found him seizing around 8:00 pm in our living room. During this seizure he only stopped breathing for a minute or so. Luckily Scott's only injuries seem to be a bruise on his right jaw and a slight headache. He is resting now. We will try to update everyone again tomorrow on his condition.

Christa

Monday, August 06, 2007

RNS Discussion with Dr. King-Stephens (Part 5)

Part 5 of my RNS discussion with Dr. King-Stephens:

The RNS is able to detect brain activity that could indicate a seizure. How does it know the difference between normal activity and seizure activity?

The physician decides what is normal and abnormal for that individual. By looking at a number of records of brain activity from that patient, the physician can identify the specific patterns that characterize that person’s seizures. The device is then programmed by the physician to detect those specific patterns. Thus, the device is programmed differently for each individual.

If the RNS is able to distinguish between different types of brain activity it is essentially reading your mind. Can it detect emotional responses?

The RNS detects the brainwave activity but does not "read the mind". It would probably take a supercomputer with millions of electrodes placed over every cell in the brain in order to be able to "read" peoples thoughts. After all, the mind is the expression of all the brain cells activity at any given time.

For what other purposes is the RNS technology being used?

Right now, the RNS is only being used in a clinical trial for refractory epilepsy. It may be used for other conditions in the future.

Previous Posts (Part 1 Part 2 Part 3 Part 4)

If you have epilepsy and are interested in finding out if you are a good match for the RNS clinical study, Call: 1-866-904-6630 or go to: www.seizurestudy.com

Sunday, August 05, 2007

RNS Discussion with Dr. King-Stephens (Part 4)

Part 4 of my RNS discussion with Dr. King-Stephens:

How does the RNS “know” to send an electrical pulse to the brain?

The RNS uses very sophisticated computer programs to recognize abnormal brain electrical activity and distinguish it from normal activity. The data (or EEG) is stored in the RNS and by communicating with a laptop computer, similar to a heart pacemaker, it can be retrieved and sent to a computer at NeuroPace and stored for future review.

Once the patient downloads the activity that is stored in the device to the main computer at NeuroPace, the doctors can review it and make changes in the detection programs to improve the ability of the device to recognize the seizure activity. The better the device gets at distinguishing the abnormal from normal brain activity, the better it works at blocking the seizures and improving the control of the epilepsy.

The RNS must acquire a significant amount of data about your brain. How is that data stored and how is it sent to your physician?

The data is stored on servers and is password protected, that is, the physician can access the information only for his or her own patients.

The pulse of a VNS has to be powerful enough to reach the activation threshold of the Vagus nerve and cause it to “fire”. How powerful do RNS pulses have to be in order to interrupt seizure activity in the brain?

The magnitude of the electrical activity delivered to the brain to control the seizures is much lower with RNS than VNS, (probably around 15% of what is needed for VNS). Since there are no pain nerve fibers in the brain, the patient does not feel the "shock" applied by the device.

Previous Posts (Part 1 Part 2 Part 3)
More tommorow.

If you have epilepsy and are interested in finding out if you are a good match for the RNS clinical study, Call: 1-866-904-6630 or go to: www.seizurestudy.com

Saturday, August 04, 2007

RNS Discussion with Dr. King-Stephens (Part 3)

Part 3 of my RNS discussion with Dr. King-Stephens:

The VNS has a number of possible side-effects, the main one being that it affects your voice. What are some possible side effects that you have already discovered during your studies?

Some patients have had mild tingling and/or pain of the scalp or face but by reducing the intensity of the stimulation or repositioning the electrodes, the symptoms disappear. So far, the side-effect profile has been excellent, i.e. few side-effects, and the patients do not have any sensation when the brain is receiving the therapy, which averages about 600 very brief pulses a day!!!

One of the things that most concerned me when deciding to get a VNS is the whole concept of being a Cyborg: Part man – part machine. The RNS seems to be more invasive and more “cyborgish”. How would you address these concerns to potential study participants?

The RNS in no way can change the personality of the person or "take over" their feelings or thoughts because it is only stimulation; less than 1% of their brain. There is no chance of becoming the "Terminal Man".

If you had epilepsy, what treatments would you try before electing to have a RNS implant?

If I had epilepsy, I would try at least 2 medications, alone or in combination, before looking at the possibility of having "curative" surgery. If I was not a candidate for curative surgery but could have the RNS, I would go for it. If not a candidate for surgery or RNS, then I would try VNS or an investigational medication.

Previous Posts (Part 1 Part 2)
More tommorow.

If you have epilepsy and are interested in finding out if you are a good match for the RNS clinical study, Call: 1-866-904-6630 or go to: www.seizurestudy.com

Friday, August 03, 2007

RNS Discussion with Dr. King-Stephens (Part 2)

Part 2 of my RNS discussion with Dr. King-Stephens:

I have generalized tonic-clonic seizures. My EEG shows that the electrical activity does not start at one point in the brain and spread, but occurs on both sides of the brain at once. Would I be a good candidate for an RNS?

At this time, only patients who have focal onset seizures, 1 or 2 foci, are candidates for the study. It might be that in the future, people with generalized seizure onsets might be candidates for this therapy.

The VNS has been around since the nineties and has been implanted in over 30,000 patients. It is well studied and effective for many people. Why would I want to consider an RNS as opposed to the VNS?

VNS is indicated for patient in whom we do not know where the seizures are coming from, have more than 2 foci or have generalized onset seizures. Thus, the indications for using VNS or RNS are very different at this time.

How do you find the specific point on the brain at which to place RNS leads? Is an EEG or regular MRI sufficient?

In order to determine where the seizures are originating in the brain, we do EEG, MRI and occasionally PET studies. If the non-invasive studies can not give us the answer, we sometimes introduce (implant) the EEG electrodes into or placed on the surface of the brain, to capture the seizures and investigate whether we can find the focus or foci. This requires a surgical procedure and observation in the hospital for 7 to 10 days.

Once you have received a VNS, Cyberonics recommends that you not have any further MRIs as the strong magnetic field could heat up the leads wrapping around the Vagus nerve. As an MRI is required to determine the locations to place RNS leads, could a person with a VNS have an RNS implanted?

A person with a RNS generally should not have a MRI scan of the brain because the device creates so much artifact that the information given by the scan is often useless. Also, the MRI may cause heating of the leads. If an imaging procedure is necessary, x-ray based technologies such as a CT scan should be used whenever possible. Hopefully, future RNS devices will be MRI compatible.

The study website indicates that the leads & electrodes are implanted in the brain and that the neurotransmitter is placed in the skull. When you say “in the skull”, does that mean in the cavity with the brain or under the scalp?

The device is embedded in the skull and does not go into the brain. It is then covered by the muscle, fat and scalp and is therefore not visible. The EEG electrodes do go into and/or sit on the surface of the brain and therefore are under the skull.

Previous Posts (Part 1)
More tommorow...

If you have epilepsy and are interested in finding out if you are a good match for the RNS clinical study, Call: 1-866-904-6630 or go to: www.seizurestudy.com

Thursday, August 02, 2007

RNS Discussion with Dr. King-Stephens (Part 1)

I recently had the opportunity to candidly speak with Dr. King Stephens about the Responsive Neurostimulator (RNS), a new treatment for epilepsy that is currently in clinical trials. Dr. King-Stephens is the Director of Clinical Neurophysiology at the California Pacific Medical Center in San Francisco.

(As the discussion was quite long, I'll split the transcript into 5 posts.)

Neurology is probably the most complex of all sciences. The amount we know about the brain is far outweighed by the amount we still have to learn. So what in the world possessed you to go into neurology? Surely you could have chosen something more lucrative and less frustrating… like podiatry or plastic surgery?

My interest in neurology is due to the complexity of the brain. Every patient is challenging and keeps the work interesting. Having the opportunity to do research and take care of patients is a privilege and rewarding when we can improve someone's life.

How much have you been involved with the development of the RNS?

I was not involved in the preclinical development of RNS but have worked in the clinical study for almost 2 years.

Experiments with direct neurostimulation and neuro-feedback to the brain have been going on for many years now. What technology specific to the RNS has moved the device to the point where you think it will be practical as an implant.

Improvement in the microprocessors (smaller size and increased speed), reduction in the size of the battery and specially in the algorithms that help recognize the seizure activity have made possible the development of this device.

I had brain surgery about 15 years ago to remove some tissue that was hemorrhaging on my brain and was causing simple-partial seizures. The surgery involved opening a hole the size of a playing card in order to remove the tissue. I had to stay in the hospital for 5 days! What size hole is required for the RNS leads to be placed? And have brain surgery techniques advanced much in the last 15 years?

The size of the (burr) hole to implant the electrodes is about the size of a quarter. The opening of the bone for embedding the RNS device is about 1 x 1/2 x 1/4 of an inch. The advancement in surgical techniques has involved better and safer anesthesia medications, MRI studies during or after surgery and post-operative care.

More tommorow.

If you have epilepsy and are interested in finding out if you are a good match for the RNS clinical study, Call: 1-866-904-6630 or go to: www.seizurestudy.com

Wednesday, August 01, 2007

ADA Restoration Act of 2007

On July 26, the anniversary of the passage of the Americans with Disabilities Act, House Majority Leader Steny Hoyer (D-MD) and Representative James Sensenbrenner (R-WI) introduced the ADA Restoration Act of 2007, H.R. 3195.

Recent court decisions (Sutton v. United Airlines - 1998) have dramatically limited the scope of the Americans with Disabilities Act (1990) such that most people with epilepsy are deemed not to have a disability and therefore cannot seek legal recourse if they are discriminated against because of their epilepsy.

Why are they deemed not to have a disability? Because the Supreme Court decision in Sutton v. United Airlines required that the effect of mitigating measures (such as taking medication) be considered in determining if someone has a disability under the ADA... Of the more than a million people living with epilepsy, about 60 percent have their seizures controlled by medications. That is great, but anti-epileptic drugs (AEDs) by their very nature are designed to reduce brain activity and the potential side effects of these medications can go on for pages. Many times, the negative side effects of AEDs can exceed the advantage of having seizure control. But let's assume that one has a seizure at work, goes to the Dr. gets on meds that control the seizures completely with few side effects. Well, the person is still likely to be discriminated against because his boss is scared he will have another one.

Take John Roberts for example, you can bet that when court gets back in session, even if he is not diagnosed with epilepsy, those other 8 Judges are going to be quite apprehensive that their Chief Justice might just have another seizure. A perfect example of the discrimination he already faces are all the questions posed by the media concerning his ability to perform his job. If he did not already have the top spot on the bench, chances are that if he was diagnosed with epilepsy, he would be less likely to get promoted.

Until 1999 there was little fanfare about whether a person with epilepsy is covered by the ADA, or its model counterpart, the Rehabilitation Act of 1973. Most cases presumed that epilepsy was a covered disability.

Since then, courts have recognized that epilepsy is a disability in only a few cases. As a result, people with epilepsy are questioning whether they are even entitled to the protections of the law. Even more troubling is that employers, public accommodations, schools and state agencies have also begun to ask the same question.

Many people who are trying to work despite having an impairment are not being given a fair chance. The ADA Restoration Act of 2007 would correct this injustice. This legislation restores the basic right of people who have a disability to be judged based on performance – just like women, minorities, and the rest of the American workforce.

The Epilepsy Foundation of America makes it easy to take action by sending your Representative the ADA action alert.

Tuesday, July 31, 2007

Judging With Epilepsy

I awoke this morning to the news that John Roberts, Chief Justice of The United States, suffered a seizure yesterday while vacationing at his summer home in Maine. My first thoughts were, "Dude... that really sucks to have a seizure on your vacation." Evidently they dragged the poor chap to the hospital and ran him through a battery of tests that did not indicate any underling medical conditions that might cause a seizure. It was diagnosed as a benign idiopathic seizure - this is doctor speak for: "We have no clue as to what caused it, but it doesn't appear to be life threatening." Further information came out that he had had a seizure about 14 years ago while playing golf.

This is where the fun starts... CNN brings in some commentator that starts blabbering about how Roberts might not be able to do his job now that he had a seizure, and what if he could not make it back to work after his vacation. Not content to just be stupid, the commentators continue their moronic rant, After all, he has had one before and the Chief Justice has a lot more responsibilities that the other justices... maybe he could work from home...

If you ever wondered why people with epilepsy are discriminated against, it is morons like this. They have no idea what they are talking about and turn epilepsy into a condition that would prevent you from doing your job.

Monday, July 30, 2007

Harry Potter Full Review


Part 1 of 7
I finished Harry Potter and the Deathly Hallows late last night and after reading it, I felt drawn to write a "no spoilers" review of the book and the series (in seven parts of course). The final installment in this long running quest is definitely the best, but most importantly, it is the capstone of an amazing tale.

How good is it?
Earlier in last week I heard tales of people at my office finishing the book within 2 days of their purchase. I assumed that they must be die-hard Potter fans with nothing else to do. I am not one, but I borrowed a copy from one of those aforementioned die-hard fans on Wednesday and read a chapter then and another one on Thursday. By Friday night I had reached around page 100. Saturday evening I had reached 350. Sometime Sunday afternoon, I picked it up again without the intention of finishing it that day, but there is a tipping point in the novel around the 400 page mark where you simply can't stop reading. Rowling, after penning a few thousand pages of Potter, has finally mastered the art of pacing a novel, and for the next 349 pages it is non-stop edge-of-your-seat nail-biting action. So good that I would say it is absolutely worth reading the previous 3 thousand pages just so you can savor reading those last 349.

There won't be any spoilers in the review, as most of us Muggles who are fans of the book take their cue from Potter and are respectful... but, our patience only lasts so long. My co-worker summed it up perfectly this morning when she shouted over her cube to fellow readers in surrounding cubes: "What's wrong with you people? You've had a little over a week to read the book. What's taking you so long?"

If you just want the bare bones review of the 7th novel: 5 out of 5 stars. If you want to find out why the Harry Potter series is one of the greatest tales ever spun, I'll be covering that in the next six parts.

Monday, July 23, 2007

69 Days... No seizures

Today marked the 69th day since my last seizure. I wish I could point to any one thing that keeps me from having them. If I had to guess, I would say getting more sleep. I have been very carfull about getting enough rest. Although there are days where I only get 6 or 7 hours, I try to rapidly balance that out with additional sleep the next day.

Friday, July 20, 2007

VNS Side Effects

I had my VNS current setting moved from .75 mAmps to 1.0 mAmps about 6 weeks ago. As always, when you have your settings adjusted "upward" there is a period of discomfort as your body adjusts to the increase in energy being sent to the bundle of nerves in your neck. One of the typical side effects that I experience is a tightening of the throat and increased hoarseness during stimulation. I have finally adjusted so that I no longer feel that, however a second side effect has not gone away.

When I have my neck turned in certain directions or when I am laying down in particular positions, the pulses cause a muscle in my neck to constrict or flex. It is just one muscle bundle about 4 inches long and it will activate during the 30 second pulse. My thought is that it only occurs if the muscle is pressed against the area where the leads are located. So if my pillow is pressing the muscle against my neck, it activates more often. It is quite aggravating and can make it hard to get to sleep unless I can get my pillow situated just right.

I am going to get my pulse width turned down to see if this will help. I'll keep you updated. If anyone else out there has this side effect, please let me know.

Tuesday, July 10, 2007

RNS Clinical Trials

NeuroPace is currently conducting clinical trials on their RNS device. I have posted about this device last year, but now, thanks to a representative of FischerHealth, I have some more information about the device and how to find out if you are a candidate for their clinical trials.

NeuroPace has set up a Web site and toll-free numbers specifically to allow people living with epilepsy to easily learn if they are a candidate for the RNS System. Both are staffed by nurses who can give information on the trials and the closest trial site.

Toll Free Number: 1-866-904-6630
OR
Website: www.seizurestudy.com

Tuesday, July 03, 2007

Completely Off Topic: Baby Bird

In short, I am a big fan of birds. I happened to come across two of these little birds that were living in my garage. Evidently their mother decided that the dilapidated bird house I had tucked away in my garage was sufficient for her nesting needs and decided to lay some eggs there. I managed to get a picture of this baby bird when it flew out and landed on the car.

Monday, June 25, 2007

41 Days - No seizures!

I've now made it 41 days since the last seizure. I'm pretty psyched about it. Now, if I could make it another 41 years...

Friday, June 08, 2007

Kick it up a notch!

I got my VNS turned up earlier this week. The current has been changed from .75 mAmps to 1.0 mAmps. The rest of the settings have remained unchanged (the are listed on the sidebar) I have definitely noticed a difference in the amount of interference it has on my speech. Due to the placement of the lead, the VNS activates the muscles in my neck as well. Although this does not hurt, it is somewhat bothersome as it causes a number of muscles on the right side of my neck to flex during the activation. Interestingly enough, the muscle activation does not occur with every activation of the VNS. A the moment, it is only happening perhaps 15 times a day.

Also, today marks 4 weeks without any seizures! Whoo hoo!

Monday, May 14, 2007

Update.... Feeling Better

Just wanted to send a quick update to let everyone know that Scott is recovering from his latest seizure. He is still tired but seems to be feeling better. His only injury is a stubbed toe - which is a nice shade of red and black. Thank you all for your calls and concern.

Christa

Saturday, May 12, 2007

Yet Another Dreadful Tonic Clonic Seizure

That's right... Scott had another tonic clonic seizure this evening around 9:40 pm while cooking in the kitchen. Our son, Ryan, and I were able to get the kitchen gadgets out of his hands and help him keep from hurting himself too much. Luckily, I was wearing my bracelet which holds a VNS magnet and was able to swipe it early on. Scott did stop breathing for a few minutes but came out of the seizure much more quickly than usual. He is resting now and has only complained of stubbed toes, a sore neck and fatigue. I will try to post more tomorrow to let everyone know how Scott is doing.

Christa

Thursday, May 10, 2007

No Seizures... since the last one...

I haven't had any more seizures since the one on April 13. So nearly a month now. My goal is that I won't have any more ever again. Wish me luck!

Tuesday, April 24, 2007

Eslicarbazepine (ESL)

It is always good to see new epilepsy medications being developed. This article from eMaxHealth describes Eslicarbazepine (ESL).

A new study appearing in the latest issue of Epilepsia shows that a new drug called Eslicarbazepine (ESL) shows promise as a treatment for epilepsy patients whose symptoms remain uncontrolled with existing medications. A once-daily dose was shown to be most effective, offering patients added convenience as current treatments can involve several doses per day.

The trial was conducted across 19 locations in five European countries: Croatia, The Czech Republic, Germany, Lithuania and Poland. Patients with at least four partial-onset seizures per month, in spite of treatment with other medications, were administered Eslicarbazepine doses ranging between 400mg and 1,200mg. The study demonstrates that ESL is well tolerated and effective when used as adjunct therapy for adult patients with partial epilepsy, fully eliminating seizures in 24 percent of tested patients. The occurrence of side effects was also low compared to other current treatment methods.

No age- or gender-related differences were found in the effectiveness of the treatment. "Our study shows that ESL was safe and well tolerated," says PatrĂ­cio Soares-da-Silva, co-author of the study. "We believe that Eslicarbazepine may have the potential to become an important new central nervous system drug not only for the treatment of epilepsy, but also for patients suffering from bipolar disorder and neuropathic pain."

Thursday, April 19, 2007

Recovery from a Seizure

How long does it take to recover from a tonic-clonic (gran mal) seizure?

I believe the time varies by person, but in my case, it has changed with medicines, VNS treatment, and age. I first started having seizures when I was 12, I think that first tonic-clonic seizure was strong enough that I slept the entire day... maybe part of the next one as well. As one typically falls down when having a tonic-clonic seizure, recovery time depends a lot on what you hit and where. Those times when I have banged my head up very badly, it took longer to recover - if only because the physical wounds have to heal. Of course, if you fall hard enough on your head, you can get a concussion and that can increase the recovery time as well.

Further complicating things is the intensity of the seizure. Before I got my VNS, tonic-clonic seizures always caused me to stop breathing for as much as 4 minutes. After about a half-year of VNS treatment, when I have had a tonic-clonic seizure, I don't stop breathing. I think this has reduced my recovery time dramatically. So, I think I would have to put recovery time into 4 different categories:

Pre VNS Tonic-Clonic with head injury:
A few hours just to regain coherent speech & though. Time at hospital or with icepack on bruises. At least a full day of sleep and maybe another couple to rest.

Pre VNS Tonic-Clonic without head injury:
A couple hours to regain coherent speech & thought. A day of sleep.

Post VNS Tonic-Clonic with head injury but no cessation of breathing:
A half hour to regain coherent speech & thought. Time at hospital or with icepack on bruises. Extra sleep needed - at least a few hours of sleep after the seizure.

Post VNS Tonic-Clonic without head injury or cessation of breathing:
A half hour to regain coherent speech & thought. Extra sleep needed - at least a few hours of sleep after the seizure.

Now, as a side-note. A few months ago, I had a tonic-clonic seizure and hit my head, but not too bad as I was sitting at a table and did not have far to fall. I did not stop breathing and was able to stand up after perhaps 20 minutes. I did not feel too bad, but I took a nap for a few hours and then got up and was active for the rest of the day. But, the next morning I had another tonic-clonic seizure - I believe because I did not rest enough after the one from the previous day. So, last week, I had a tonic-clonic seizure and I made sure that I slept much more and rested for the next 2 days.

As a further side note, I will probably have to revise the post after my family reads it and tells me the times are wrong. See, that is the other thing, I remember very little from the days when I have tonic-clonic seizures.

Monday, April 16, 2007

Recovered...

After a lot of TLC from my wife and rest, I have finally recovered from the tonic-clonic seizure I had last week. Nothing like a seizure to interrupt the perfectly good streak of blogging I had going from last week. Now I have to try to catch up on all three of my blogs...

Friday, April 13, 2007

Another Tonic Clonic

Scott had another tonic clonic seizure while in bed this morning at 1:00. I was awakened to find him seizing on top of me. Luckily, I was able to get out from under him and grab a magnet to manually active his VNS. He came out of the seizure shortly thereafter. He doesn't appear to have any bumps or bruises from the seizure. However, he did complain of a headache and nausea. He is resting now. I will post more tomorrow to let everyone know how Scott is doing.

Christa

Thursday, March 29, 2007

Pulsing light silences overactive neurons

This article sent to me in the comments (thx matt) is pretty interesting. MIT engineers have figured out ways to control neurons using light and modified genes. It looks like it has a long way to go before it can help with epilepsy, but I am hopeful! Check it out:

Scientists at the MIT Media Lab have invented a way to reversibly silence brain cells using pulses of yellow light, offering the prospect of controlling the haywire neuron activity that occurs in diseases such as epilepsy and Parkinson's disease.

Conversly, it reminds me of the novel, Snow Crash, by Neil Stephenson. A computer program flashes a pattern of lights into a programer's eyes which causes them to die. Great book - great author - always about 20 years ahead of his time.

Wednesday, March 28, 2007

More Blogging...

Yet again I am starting another blog. I like to write about a variety of different issues, but I feel that the best blogs are those that focus on a specific topic. So I plan on continuing to blog about epilepsy here while starting a separate one on philosophy, physics, and religion. Stop by at emeriol.blogspot.com

Tuesday, March 27, 2007

MEG

Wake Forest Baptist Medical Center is getting a MEG device that scans the brain for activity and can map it on an MRI scan. It is pretty complicated, but essentially it makes a map of the brain that can identify the exact location for surgery. Below is the description from WFBMC.

MEG measures the magnetic fields created by electric currents generated by the brain’s neurons without the aid of injected radioisotopes or even attached electrodes. An array of 260 magnetic sensors surrounds the head, allowing induced brain magnetic potentials to be recorded from the entire head. These magnetic signals are then projected onto the patient’s own MRI scan, making it possible to localize a given function to a precise portion of the brain. MEG is used for the presurgical localization of critical brain regions (such as the location of language or motor function) and to help locate the site where epileptic seizures begin.

Nerve cells directly generate the magnetic signals detected by MEG, as opposed to other functional imaging tests such as positron emission tomography (PET), single photon emission tomography (SPECT) and MRI, which record secondary changes in blood flow or glucose utilization from which nerve cell activity must then be inferred. Therefore, MEG measures changes and activity not detectable by these other tests. Unlike electroencephalography (EEG), MEG is unaffected by intervening tissues such as the scalp and skull, so signals from deeper areas of the brain that are not detectable by EEG can be identified with MEG.

By identifying the precise locations within the brain that are responsible for the senses, language and other vital processes, doctors can ensure preservation of these functions by avoiding these important areas during surgery. The non-invasiveness of MEG permits it to be used for repeated follow-up measurements without adverse effects.

Thursday, March 15, 2007

National Walk for Epilepsy


On March 31, the Epilepsy Foundation will be hosting the first-ever National Walk for Epilepsy. As many as 5,000 walkers, including Greg Grunberg, star of NBC’s “Heroes,” DJ Hapa, and the “New York Subway Hero,” Wesley Autrey, will convene at the National Mall in Washington, D.C., to celebrate one of the greatest events ever for the epilepsy community. The goal is to help eliminate the stigma associated with epilepsy and raise more than $1 million for research toward a cure. More information is available at www.walkforepilepsy.org.

Wednesday, March 14, 2007

No seizures

Not much to say this week except that I have not had any tonic-clonic seizures in like a month. Always happy about that.

I have been considering starting yet another blog... yes, I know it sounds crazy being that I already have 3 of my own and one upon which I guest-post. But I like to write ... I'll keep you posted. :)

Monday, March 12, 2007

Survivor’s Guide to VNS: Part 10 – Effective Settings

The Goal
The object of the settings is to cause your nerve to send signals to the brain. The electrical energy sent to the nerve from the generator has to be enough to cause the nerve to “fire”. Kind of like a spark plug. One key thing to understand is that not everyone’s nerve NEEDS the same amount of electricity in order to cause it to send a signal. This is why the settings need to be adjusted for each person individually.

Unfortunately, there is no real clear chart that says that indicates what setting each person needs. Fortunately, there are some studies that rule out various settings.

Signal Frequency
Studies have been done that show that stimulation to the Vagus Nerve at frequencies of 10 Hz or less do not cause the nerve to send signals. So, your signal frequency should be around 20 to 30 Hz. I keep mine at 20.

Signal ON Time
The Signal On Time should be set to 30 seconds. Although I have seen a few studies that have set it to shorter On Times, the standard is 30. I would keep it at that.

Signal Off Time
I read about a lady who’s psych dr. set her off time to 3 hours! Because it went off so infrequently, she was completely stunned whenever it went off. Don’t let that happen to you. This setting should be between 5 minutes and 1.1 minutes. In addition, the Signal Off Time should not be less than the Signal On Time. I have mine set to 1.1 minutes off.

Output Current & Pulse Width
The two settings that seem to have the most direct impact on side effects and efficacy are the Output Current (OC) and the Pulse Width (PW). One study I have read shows a direct correlation between the two settings and age.

A typical setting that doctors use will be 500 PW and then increase the OC in .25 mA intervals until it gets to 1 or 1.5 mA… regardless of the person or what side effects it causes. Don’t let them adjust your settings this way! Each person is different and needs different settings.

Start with a 130 PW and .25 OC. This is as low as it goes. If you can’t feel it, bump up the PW or the OC one notch until it gets a bit aggravating. Don’t let them put you on a setting where it physically hurts or it causes you to choke. When you get it adjusted up, the VNS should be annoying, not painful.

Efficacy
Remember that the goal is to get your nerve to activate and send a signal to the brain. Start by slowly increasing your settings. Each time, increase them only to the point where the side effect is annoying, not painful or choking to the point of not breathing during activation. Over time, the annoyance will reduce and hopefully within a few days, you will barely notice it.

It will take a while before you start to get any results… if it works for you. You may even have to wait a whole year. Slowly increase your settings over the first few months. Make note of how many seizures you have. The VNS can cause some people to have more seizures. I found that at a higher pulse width and current, I had more seizures. When I lowered it, I had less.

Greater Efficacy over Time
The VNS has somewhat reduced the number of seizures I have, but has definitely reduced the intensity of my seizures. For example, I had a Tonic-Clonic seizure last month, and for the first time, I did not stop breathing. My recovery time after the seizure was immensely reduced. Instead of days or hours of recovery time, I was able to function after only an hour of rest. Amazing.

Thursday, March 08, 2007

Blogging is Hard Work

I started this blog because I enjoy writing and I felt that I could provide some insight into epilepsy that isn’t found anywhere else. I think that I have achieved my goal, but unfortunately, epilepsy is a very small topic upon which I have posted over 250 entries. It has been over a year now, and keeping the topic fresh and interesting is quite challenging… and at times tedious. Ug. Woe is me!

Well, enough of that. Thanks to anyone who took the time to listen to me whine and moan. I’m sure I will come up with something more interesting tomorrow.

Cheers!

Friday, March 02, 2007

Medication Sheets at Epilepsy.Com

Epilepsy.Com has posted a few medication sheets on common AEDs that are more helpful than the stuff handed out by the parmacy or drug companies. I checked out the one for Lamictal (one of the AEDs that I take) and it had some info of which I was unaware.

Epilepsy.Com has a lot of great info and seems to do a better job promoting awareness through their webiste than does the Epilepsy Foundation.

Wednesday, February 21, 2007

VNS Settings Changed

As I had 2 Tonic-Clonic seizures last weekend, I decided to get my VNS settings adjusted. Dr. Dean suggested reducing the off time from 1.8 to 1.1. She thinks that the more rapid cycle of the VNS will improve the effacacy. Nurse Cindy made the change last night... hopefully this will help.

Tuesday, February 20, 2007

Tuesday, February 13, 2007

Survivor’s Guide to VNS: Part 9 – Device Settings

You need to know about your device settings before your Dr. turns it on. Not all physicians, nurses, or technicians know their device settings well. In fact, you may be their first patient… Or you may be the 10th patient that they have mis-programed in a row… Errors in device settings could be completely accidental… maybe the doctor forgot to bring his reading glasses that day and confused a 0.2 with a 2 and confused a Signal Frequency with a Signal OFF time.

So understand the settings, and make sure that you check them out before they activate or change settings on the device. Take responsibility for your own device settings. It’s your life. It’s your device. It’s in your body.

What are the settings?
The settings you need to be concerned about are: Output Current, Signal Frequency, Pulse Width, Signal ON Time, and Signal OFF Time. Doesn’t make much sense, right? Here is the layman’s description of what each is:

Output Current
This is one measurement of the amount of electrical energy that is sent to your Vagus nerve. It is measured in milli-Amps (mA). If you think of electricity as waves crashing against a beach, this would measure the height of the wave.

Signal Frequency
This measures how many times per second that those waves of energy are sent to the nerve. The frequency is measured in Hertz (Hz). Imagine again those waves crashing against the beach – how many waves per second is the frequency.

Pulse Width
This measures the width of the electrical signal. It is measured in uSec… which is a number hard to comprehend, but it is another indication of how much electrical energy is sent to your nerve. Just imagine the water waves again and think about how much water comes with each wave. This measures the part that you would have to dive through to get to the other side of the wave.

Signal ON Time
How long the pulse generator sends electrical energy to the nerve. Using the water analogy again, the waves might wash against the beach for 30 seconds and then stop for a while.

Signal OFF Time
This is a measure of how long the VNS waits between sending signals again. No electrical energy is sent during this time.

Sunday, February 11, 2007

Good Weekend... Not So Much!

Scott had two gran mal seizures over the weekend. Two in a 20 hour period, one on Saturday afternoon and another this morning. Both came as he was eating here at home. I am grateful that Scott was not injured too badly. Other than a few bruises, no one would ever know that Scott had had a seizure... or two. Scott seemed to recover quite quickly after the seizure on Saturday but less quickly this morning after the second seizure. There does not seem to be a clear pattern as to why these seizures occurred. Scott has been taking his medication regularly and has not missed any doses. Perhaps he is still not able to get the rest his body needs. Dr. Dean has stated before that his seizure activity increases when sleep spindles form during his EEG. Scott has turned in early this evening in hopes of getting a good night's rest. Hopefully, tomorrow will be a seizure free day!

Wednesday, January 31, 2007

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.

Monday, January 29, 2007

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.

Wednesday, January 24, 2007

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.

Monday, January 22, 2007

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.

Thursday, January 11, 2007

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.

Wednesday, January 10, 2007

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.

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.

Monday, January 08, 2007

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.

Friday, January 05, 2007

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.

Wednesday, January 03, 2007

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:

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Tuesday, January 02, 2007

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.

Monday, January 01, 2007

Happy New Years!

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