Rounding Third and Headed Home with my Neurological Team

by Placerville Newswire / Aug 26, 2018 / comments

[Cris Alarcon]

A medical “Team” and a date for brain surgery…

My Care Team.  Now I understand why the testing has been intensive and coming so fast, they have decided that they are going to perform brain surgery and now are introducing me to the “Team”: Eniko Nagy-Wilde, MD, Neurology; Kimberley E Rose, PhD, Psychology; Lotfi Hacein-Bey, MD, Radiology Interventional; Samuel F Ciricillo, MD, Pediatric Neurosurgery! You would think I was famous.  No, they are just that good and that serious. I am grateful to have the best.

And the tests: MRIs; CT scan; fMRI; PET scan (Nuclear Medicine); Intensive Psychological test to determine How I think;  Provoked seizures in the EMU; WADA for Epilepsy. Those are just the major tests. These are to pinpoint the area and to prove any elimination caused by any uncertainty of the diagnoses.  I feel like some kind of test subject but if this is what it takes to be Certain, poke me some more. These docs don’t fool around. They are serious, frank, and at the top of their professions.  I am grateful to have the best.

And the drugs…  I take so many pills I can’t keep track so I had to get those pill caddies with days and time printed on them so I can be sure to take the right pills at the right times.  One little pill I call my “Gold Dust Pills” because of the color and cost! So expensive that they tried the insurance provider that said “no way” and they knew that I could not afford the thousands of dollars, each month.  So they did some magic and got the Epilepsy Foundation to pick up the bill! Turns out my neurologist is a Board Member and she helped make it happen! I am grateful to have the best.

After a car wreck and my wife pushing mountains to get me to the best, things got fast around June of this year.  My doctors had met me two years ago, but an insurance nightmare had stopped me from getting treatment, until another seizure put me in the ER this spring.  By the middle of june they found the exact area that needed attention as it was causing me many seizures, even on anti-seizure drugs. I was then classified as having “Intractable epilepsy” or a form that was not stopped by drugs.  My neurologist doubled my dose of my standard anti-seizure drugs and added the “Gold Dust” pills. That reduced my seizures to the point that my cognitive and memory function were better than they had been for years. I am grateful to have the best.

In June my neurologist said that if all went well with the tests, I would have surgery towards the end of the year.  That was a long ways off in mid-June. I told a friend that had brain surgery and he was surprised that I was getting surgery “so fast.”  That is when I started to get a clue that I was being fast tracked. Twice now I have had a doc asked me if [a test] had been done that had not.  By the time I got home from that visit I had a phone message asking to set an appointment to get that done in an expedited manner. Not the “in a month” kind of an appointment, but  “this week” kind of appointment. It was like a they wanted it done last week. And when the top docs make a call, things get done right now. I am grateful to have the best.

I knew that every seizure adds to a debilitating pattern that cannot be reversed, but I never heard of medical attention like I am getting.  After less than two months of many tests, they had eliminated all other possible causes and confirmed the diagnosis leading to the treatment, brain surgery!  They then began to introduce me to “my team” of neurological specialist at the high-end hospital. I never had a “team” of doctors before.

I met the neurosurgeon this week and he gave it to me the way I want, straight, frank and with no BS.  Maybe not the best bedside manner for some, but I want it without sugar coating, and I got it that way!  As he explained what he would be doing, and how, I sat at the edge of my seat gripping the seat so hard my knuckles turned white.  Part from fascination, and part from terror! My wife sat next to me but I could not take my eyes off the surgeon, a surgeon that specializes in area of Pediatric Neurosurgery focused on epilepsy.

He explained in a professional, and a calm manner how he was going to stick a probe in the back of my head and skewer my hippocampus to get to the front part of my Temporal Lobe to kill off the part of my brain that was causing the problem. He would use a second probe in the side of my head for a radiologist to make sure the first probe was in the right place.  He then pulled out his writing pen an clicked it to show me the working part size of the probe that would kill part of my brain with heat, the point. He then moved his fingers to the “comfort cushion” part of his pin explaining that the heat generated would kill a circle about that size. Since I needed more, he would then pull the working part back a little with aid of the radiologist and do the same thing with the brain killing part a few time until he had killed all of the brain that needed to be killed off.  About the size of the last two joints of my pinky. He added that this was a “sexy” surgery as the old method was to auger out and core the problem area, as he pantomimed the use of an old fashioned hand wood drill…

I don’t know if I breathed one time as he explained the procedure.  He would be using Laser ablation surgery, a minimally invasive technology that destroys problematic tissue in seconds at temperatures near 130 degrees Fahrenheit.

He then moved onto the impressive stats.  They had performed this procedure about 110 times.  Only three patients had to have a “touch up” to to get some fringe area at the edge of the first procedure.  It was a very successful procedure for the part of the brain where my problem is. Those are Great stats. As I was breathless and stunned, my wife asked if “skewering” the hippocampus as he described would damage it?  Naw, he said. The brain is like a ball of yarn and as you push the needle through the yarn it moves aside to let the needle pass, the brain is the same and the neurons would move aside as the probe was pushed through and would not harm the brain…

She then asked about the drug regime.  He said he would put me on steroids before and continue for some weeks after to insure the brain did not swell from the trauma of the surgery.  That I would stay on my current antiepileptic drugs so the plasticity of the brain did not resume the seizure habit in a nearby place. We then wrapped it up with this awesome doc that gave it to me without pulling any punches. He told me that the tentative date for surgery was Sept 28th or October 5th.  He had to coordinate the date with my two other doctors that would be there to help, my radiologist to help guide the exact locations and my neurologist to watch my psychological condition as they proceed… Three top doctors would be there to help with their specialties. I did not see that coming.  Nor was I prepared for surgery in 5 weeks, I was thinking November or December.

I don’t know if I had breathed yet, but I knew I was shaking, so I went down to the cafeteria so I could take some time to decompress.

Breath.  Breath. I am grateful to have the best. Especially my wife, the best.

Cris Alarcon.
8-26-2018

---

Part 1 "Provoked Seizures and what I learned from a week in an EMU"
http://inedc.com/14/provoked-seizures-and-what-i-learned-week-emu

Part 2 "Brain Surgery - It Just Got Real"
http://inedc.com/14/brain-surgery-it-just-got-real

Part 3 "Major Illness is Life's Best Roller Coaster"
http://inedc.com/14/major-illness-lifes-best-roller-coaster

Part 4 "My tiny part in a far reaching medical breakthrough"
http://inedc.com/14/my-tiny-part-far-reaching-medical-breakthrough

Part 5 "Rounding Third and Headed Home with my Neurological Team"
http://inedc.com/14/rounding-third-and-headed-home-my-neurological-team

Part 6 "Neuropsychological assessment before epilepsy surgery"
http://inedc.com/14/neuropsychological-assessment-epilepsy-surgery

Part 7 “WADA for Epilepsy, Cerebral Angioplasty, EEG”
http://inedc.com/14/wada-epilepsy-cerebral-angioplasty-eeg