Brent Gearhart (DBS August 2001)

Hi,

I had DSB in August 2001 and just found your website via Medtronics newsletter. I can't tell you how glad I am to hear other's stories. I had beginning to wonder if it was worth it as my symptoms have begun to change and become very hard to manage. Hearing others accounts of their woes with "adjustment" makes me realize what an ongoing process this is. I have excellent doctors at Duke Medical center, but there is nothing like hearing from someone who has been there. If only I had been aware of your org. before surgery, it (at least the emotional part), would have been much easier!
I am including an email that sent to all my friends, etc right after surgery. Feel free to do with it what you want- trash it , share it , edit it or whatever. Thank you so much, Brent.

Ps: the DBS did help greatly. I am typing myself. Impossible before.

Hi, Sorry I haven't been very good at talking to everyone individually that has been so great with support, prayers and thoughts for me and Carol, but needless to say things have been a little hectic around here. I wanted take the opportunity to thank everyone beyond words. I am a firm believer in "good Karma" and am sure that you all helped make this a tolerable and so far successful experience! For those interested,following is a blow by blow account of the whole mess. For those wanting gory details ,I've got ‘em, but Carol might read this and that would be it for her! Monday was a long day of xrays, urine samples, blood tests, insurance papers, and what I would call pre-op counseling. The nurse who met with us for the counseling was so nice and helpful, but it was weird to have him include info on why we should switch to a different hotel across town to save money, (which we did not do) and how to cheat the hospital parking garage out of a day's fee (which we did not do). Monday evening we ate out and that night I slept pretty well, but I can't say the same for Carol.

Tuesday, we arrived in the OR registration area at 10 til 7 for our 7:00am appt. only to learn the surgeon had just left us a message that he had emergency surgery and there would be a 4-hour delay. They gave us a pager, so we took a drive around Durham and Chapel Hill and found apts. where we used to live and places we used to hang out. I wasn't allowed to eat, so what else can you do early in the morning? About 9 we decided to walk thru the Duke gardens, and stopped for a bathroom break at a gas station before going over there. That's when the pager went off. We found out later, the surgeon did the emergency surgery but then his next appt. was cancelled. So it wasn't the long wait we anticipated. We headed right over to the medical center.

Carol was allowed to stay with me most of the time until noon- a great emotional plus for us both. Carol helped get me into my lovely hospital garb, and talked with me until time to start. The first order of business was to attach a magnesium frame to my head that would be used for calibrating exact positions during surgery. Here I'll skip details but let's just say that if you ever hear the words "these screws must go in to the skull " in reference to you -run! Then Carol came back and went to the MRI area with me and waited while more plastic hardware was attached to the frame until I looked like the top of a food processor. Carol stayed while the MRI was done, and went back to pre-op with me until they told us to say bye about noon.

The operating room looked like a Chinese fire drill for the first 20 minutes with about 20 people running everywhere, but seeming to do their respective jobs very well! Of course the surgeon's time was too valuable to be present yet. When the interns first wheeled me in they faced me the wrong way-feet and head reversed. . not exactly a confidence builder for me! When I asked if a pedicure was scheduled and pointed out their mistake they thanked me profusely for saving them their mentor's correction. The part of the surgery during which I was awake took about 4 hrs. most of which was interesting . It did get boring now and then. The resident/anesthesiologist sent for a deck of cards so we could pass the time at one point. The surgeon frowned on that. I did suggest that they work on a new vocabulary for patients that are awake. "Get me some more bayonets" just doesn't sound good! Nor does " I need some sterile stuff". And I decided that I definitely did not want to know what "bone wax" is.

They put three probes in to locate the proper areas they wanted, all the time listening to a microphone that broadcast the sounds of neuron activity . End of my technical knowledge.. When they were satisfied they put the permanent lead in and put me through a series of tests to get the best adjustment of current. Then they spackled up the hole or something and told me it was time to be "put out."

I woke up 2 hrs later with a wire from my head under my skin to a battery pack in my chest and one other incision behind my ear for a "connection" (I picture wire nuts and black electrical tape) . If you have been there you know that the only thing I could think of was something to drink. The nurses insisted on water even though I made it quite clear that gin and tonic was appropriate. Their next questions were Do I hurt anywhere? and would I like a hit of morphine for pain?--DUH! I politely told them yes on both accounts. Side note: do some of you women actually say no to this stuff during labor? Go figure. Then I went to my room and after about 10 minutes that seemed like 10 hrs Carol came in. In 25 years I have been glad to see her countless times but I can't remember when it felt better! I felt good Tuesday evening (it was Wed that I learned to appreciate the morphine- when it was stopped) especially since I hadn't eaten for 24 hrs and finally got fed. I ate everything the hospital gave me ,a sandwich, juice, and milk as well as two Hershey bars, and a pack of Ding Dongs from a vending machine! I slept surprisingly well given that one kind of alarm or another woke us about every half hr.. We finally figured how to reset them ourselves after repeated waits for staff. I tried telling them that according to the monitors ( and every medical TV show I'd ever seen) that I was dead. Didn't help. Some senses of humor needed work. Carol stayed in the room that night, very nice for both of us. I can't speak for Carol's comfort though.

Wed was another hurry up and wait day. Both the neurosurgeon and the neurologist (who was present during part of surgery) came by and talked with us about how pleased they were with the outcome so far. They predicted we would be discharged by noon, after a CT (CAT) scan. Well….

It was 3 pm before the scan occurred. Turns out the hospital usually does in-patient scans in the evenings, so we were lucky to get one that early. And I had more IV antibiotics at noon. So it was 5 pm before they discharged me. Carol went to get the car as they ordered a wheelchair to take me to the main entrance. And then….in Carol's words…..

"As I crossed the road, I saw black smoke coming out of the parking deck and two police cars pulling up alongside. As I walked up to the entrance two fire engines arrived. I walk into the deck as the smoke appeared to be coming from a higher level. Security guards and other "civilians" gave me differing accounts, but apparently there was a car on fire somewhere in the deck. As I walked over to my car, they were placing orange cones directly behind it to block anyone trying to drive out of the garage. I stood around long enough to hear everyone's theory on how long it would take the fire dept to put it out and give an all clear, then the black rubber-burning-smelling smoke turned toward us and I went back across the street. I found Brent along the entrance circle drive, and we went to the cafeteria for a coke/coffee. In 45 minutes, we returned to the deck to find it was just then reopening. So it was after 6 when we finally left Durham."

We got home after 8 pm last night, watched the Cubs win their game against the Astros and went to bed shortly after 10. Slept until the alarm went off at 9am! So we caught up on some much needed sleep. Went to Carol's hairdresser for 10:45 appt. that we'd made by calling him yesterday afternoon and begging a favor. He used an electric razor to cut all, I repeat ALL, of my hair off. That is, all except a few strands here and there that are caught under bandages. It looks so much better than the wild look of a shaved front all the way over the top of my head, and a shaved side behind my right ear but leaving the hair above and in front of the ear intact. At least it looks intentional now, not like I let a 2-year old have fun with a razor. I know hospital staff would think this is beneath them, but I think they should ask patients before surgery whether they'd prefer to have it all cut off-or tell you that's your option before you even arrive for surgery. It leaves one in an awkward position later to deal with the odd if not grotesque condition they leave you in. Getting it cut off boosted my spirits immediately , altho when I put my cap back on I said I wanted to call the Make a Wish Foundation and ask to see a ballgame except I'd worry they'd send me to Carowinds or Disney World instead.

The last few days have been mostly a little headache, itchy bandages, and a sore chest. Carol let me loose Friday to go to auctions by myself and all has gone well. I go to get stitches out tomorrow and will return to Duke on Sept 6 to get this gizmo actually turned on. Then we will know how successful this whole deal is.

Once again thanks for everything and we will keep everyone posted.

Brent

PS For any of you who are ever tempted to share sonograms or childbirth videotapes with me-I can retaliate with a 4 hr audiotape of neurons that sounds like the space messages in Jodie Foster's movie "Contact."