Tag: vagus nerve stimulation

Jun 23 2014 June 23, 2014 June 23, 2014 5Comments by bikeleptic

7 Months Later – VNS Device Surgery

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Well, it’s been a long road (I say, as if I’ve reached the end of it, but really, I’m like 2 blocks into a journey) – as of May 23, 2014 I have had my vagal nerve stimulator implanted for 7 months! That’s right. I became a cyborg on November 23, 2013. You can read about it here. Complete with video!

The reason why I don’t talk about my specific medication is because I am not a doctor or a health care professional. Everyone has specific needs and diagnoses. While I totally encourage research when your doctor talks to you about a new option, your body and individual cocktail is going to react differently than mine. Positive and negative side effects or reactions are based on your own personal chemistry, allergies, diet, exercise, sleep and more. I don’t want you becoming biased (if even unconsciously) due to something that happened to me. I DO recommend that you check out the community forums at Epilepsy.com if you want to ask or read about specific medications and numerous other sites.

Now onto the good stuff.

My most recent tune-up was on the 2nd of June, a couple weeks ago – which reminds me that I need to get some blood work done this week to check my new levels for my antiepileptic meds. At that point we lowered my meds again. We’ve been lowering my main antiepileptics for about 2 months now very slowly. I still have my “emergency pills” in case my VNS device fails or I need additional support. These generally are a quick acting anticonvulsants. However, I have been maxxed out on my main meds for a long time. Like, concerningly maxxed out. To toxic levels. So, in 2 months I have gone down 20% for my nightly dosage and 40% of my morning dosage!  My neurologists have told me that I will probably always have to take meds, but this is substantial!

So what about my VNS device? Again, same as medication, people’s devices are set to what is therapeutic to them. This may be higher or lower than what mine is at. I am going to provide you with my settings only because I have a lot of engineer friends and it’s pretty cool information! If you’re reading this and have a much lower setting or a much higher setting, remember that there are other factors – medication, body size, seizure frequency, tolerance, etc.

Output current: 2.5mA / 20Hz / PW 250 microsec
Impedance value 3050 ohms
Magnet current: 2.75mA

*NOTE: For some reason this video filmed mirrored, which is apparently a common issue with my laptop. I didn’t have a program that would do this simple flipping task. I realized that it probably only annoys me. My sleeve tattoo is on my left arm and the device is implanted on the left side.


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Jan 30 2014 January 30, 2014 January 30, 2014 NoComment by bikeleptic

First Ride of the Year & Seizures

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I rode my bike for the first time on Sunday since mid-October.

Say what?

Yeah. Really.

freakfall

Original Photo ©Dropout Bike Club

Back in October there was this little event called Freak Bike Fall, complete with freak bike alley cross racing. It was a gorgeous warm day and I dragged myself out of the house, hauled my aching bones onto the tall bike and pedaled my body over to hang out with a bunch of crazy bikers from the Dropout Bike Club and friends. I rode a bit over 18 miles that day and assisted in marshaling the cross race. Pedaling as fast as my little high-heeled feet could get me back to my boyfriend’s work before he closed shop as I was having a little too much fun and lost track of time.

Then it got too cold.

And I had surgery.

And it was rainy.

And cold.

Which brings us to Sunday. 45 degree Sunday. Deceptively blue skied and gorgeous Sunday. I was determined to ride my bike, garshdamnit!

I was concerned about how my VNS device was going to respond to my riding, as a diligent over-worrier and researcher the information stated that it can with strenuous exercise breathing could get restricted during the device intervals. Having been a couch potato for the last 4 months, literally eating potato chips, this was a very real threat. So, I dug through the First Aid kit, found the bandage tape and adhered one of my magnets to my device on my chest.

Why tape the magnet to the device? Because holding a magnet to the device for longer than a few seconds will, instead of activating it, will temporarily turn it off. This will not effect the function of the device, nor seizure prevention.

It was cold and my legs ached. And what I did learn is that I traded the every 5 minute inconvenience of the device going off with the continual inconvenience of my face mask hindering my breathing by the very essence of it being, well a face mask.

I got to work alright, and when I took the magnet off, I learned that the cold rawness of your throat that you get while riding combined with the activation of the device brought on by removing the magnet is really not that fun a feeling. So, if/when I turn off the magnet again, I am going to totally wait until my core temp warms up until I remove the magnet.

I met with my brand new epileptologist the next day. He is very thorough and combined with his use of the word, “optimized,” of which he wants to make me – and his desire testing including a newer ‘sleep deprived EEG’ – and if my schedule will allow it in the future, come into the hospital for a week for an epilepsy lab. That includes taking me off all of my meds and just let the seizures happen. I jokingly asked him if they could run me through rigorous stress testing during that time, because I wasn’t that confident coming into a hospital for a week-long vacation was going to cause me to have seizures. I explained to him my definition of the epileptic “Three S’s.” (Not to be confused with the LDS When Not to Wear Your Temple Garment “Three S’s”: Sports, Sex & Swimming.) Mine are the triggers to seizures: stress, substances, or sleep. My new doctor like my simple explanation so much that he said that he was going to steal it.

Patent Pending. Patent Pending. Copyright. Patent Pending. 

He understood what I was saying and said that after I do the EEG he would check out the results and maybe if coming in for a week wouldn’t work that an ambulatory EEG would be a better idea.

Because wearing an awesome hat of wires for a week wouldn’t stick out like a store thumb. At that point, I would rather go to the hospital. 

Anyway, after we tuned up my VNS device to 1.0 mA he mentioned that if I wanted to hang out until after his next appointment he could give me another boost. I would have loved that, but I had to rush off to work.

And then Tuesday happened. I can’t talk much about Tuesday. Or Wednesday really. I know some seizures happened.

Sigh.

I went to work on Tuesday. I remember that. I had a couple meetings that day, and thank goodness I took notes and did a bunch of stuff where I have footnotes of that stuff, because it’s not there in my brain. I don’t really remember work. I don’t remember Wednesday as well. I slept off and on all day, so there’s that. But I know that I did some stuff because there’s little records of me doing that. But I remember waking up on the couch a little after 8pm.

And that brings us to the end of the week and today. So, it’s a progress. And it’s still a learning one.


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Nov 23 2013 November 23, 2013 August 4, 2016 NoComment by bikeleptic

Post-OP: VNS Device Installation!

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Friday, November 22nd, I came one step closer to becoming the bionic woman! It wasn’t the most smooth sailing of experiences getting the damn thing implant. In fact in the 24 hours prior to the surgery, St Vincent’s called and changed time on me three time.

Yeah.

So that happened. I mean, I can understand the first time. They pushed it back due to an “emergency situation.” If someone gets their carotid artery slashed or something and needs to jump line; by all means. But then I had this much later time, which technically means I get to eat until 6am. I told the nurse I’d just stay up late to eat because there’s no way I’ll be getting up early for breakfast.

I get a call at 10:10am this morning from the scheduler asking if I can come in as soon as possible. . . I was asleep and she had woken me up. My alarm was set for 10:15. I explained very politely yet firmly that it takes us an hour to get there. “Okay, so we’ll see you at 11 then?” The final word on my check-in time as of yesterday evening was 1:30pm, and I asked her if maybe she was confused by some paperwork because they had changed it so many times. Nope. They were changing me again.

Wait, what?!

This has been my week actually. With all sorts of people, not just this scheduler. Instead of explaining her faulty math and the fact that we weren’t going to run out the door NOW NOW NOW, I let her know that she had woken me up, I needed to shower and that time plus dressing and then driving; we probably wouldn’t get there until about noon at the earliest.

She said that she would let the nurses know.

While driving there my boyfriend’s mom called and she asked how I was doing and his reply was; “Pretty pissed.” I think that summed it up pretty neatly. I am generally OK with fluid schedules but I had set my alarm in the morning based on a time, ate yesterday based on a time, wasn’t expecting them to switch it up. . . again.

We arrived just about 11:20am.

Check-in went pretty smoothly. I received a little GPS bracelet so instead of swiping my bracelet every time I went into a new part of the building I was just auto-tracked. Kind of cool.

Like they do with runners on marathons.

I have a little post-operative amnesia. That’s pretty normal, but generally I can remember some of what the OR looked like. I don’t even remember leaving my little pre-surgery room to be wheeled down by the anesthesiologist. I sometimes have issues with general anesthesia; but I guess everything went fine and dandy.

First night: My throat is sore. Probably from the breathing tube scraping its way down there. The side incision keeps sticking to the side of my shirt which is annoying to say the least. My neck is very stiff. I don’t have full range of motion at all. To the left, I can turn my head to face my shoulder and to the right, I can turn to face about 45 degrees  (if the shoulder is 90). Then the scar tissue starts to pull. As for tilting my ears to my shoulders, that is pretty sore. It seems to be equally sore on both sides about halfway to touching the shoulder. I can lift my left arm straight up in the air with only minimal soreness in the breastical area. Same with sticking it straight forward and sideways out.

I busted out the heating pad and have been resting that on my chest to soften up my aches!

My superhero boy friend stopped at the grocery store with me while I whimpered around for sustenance for the week. While I am fully capable of chewing food, I opted for soups, chip, apple juice and ginger ale. Because I feel puny.

Also I am getting some dental work done on Monday which will probably appreciate it as well.

I still hurt like crap, though.

And I wonder how it will look once the swelling goes down.

I’ve been online shopping for scarves.

The Vagus Nerve Stimulator is not activated yet. They apparently did a test activation once they put it in. I was not awake for this, I don’t think. They just wanted to make sure the wires were all connected and the battery worked.

I just have to get through the the next two weeks until I meet up with my Neurologist’s Physician Assistant and she will get me all turned on and set to base stimulation. Two weeks later I will get turned up to maybe therapeutic level.

On a side note: I just got a letter in the mail that my neurologist is leaving the practice at the end of the month. She was the only epilepsy specialist at the clinic so I either have to deal with a generic neurologist until they replace her or find a new clinic with an epilepsy specialist. This happens to me like every two years. Be happy with your job, people!

Interested? You can also read my lead-in article: Getting the Buzz on the Vagus Nerve Stimulator, posted 11/1/2013


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