Amygdalohippocampectomy. Or crash course in brain surgery.

For years I kept having weird experiences. Weird tastes in my mouth. Feelings like things around me weren't real(derealization.) Feelings like places I was familiar with was somewhere I have never been before. (jamais-vous)
The damn weird tastes in my mouth...for no apparent reason were horrible. I can only describe it as putting the back of your tongue..and only the back of your tongue, on a rusty railroad track. I can first remember tasting that railroad track back in 1991. Sometimes it would be many, many months between events. Sometimes it was only weeks. Occasionally I have visual disturbances with it. A double vision.

I wrote it off to eye strain. 2 optometrists and 3 physicians over the years however decided it was migraines. But I never had the headaches. So they called them feign migraines. Or fake, not fully formed migraine headaches. I never really believed it. I actually knew all along what it was. Although I never had any additional reason to believe the events were what I knew they were. During the mid 2000's, I would have a rare occasion of losing some time during the day.
Who doesn't lose time occasionally? Or wishes they could at times.
Let me explain something though before we go any further. My work days since the early 1990's have consisted of hours upon hours of boredom, broken only by the occasional all hell breaking loose of someones SHingTF. See, I am a paramedic. And for the last 8 or so years been trained at an even higher level than most, and it doesn't do me any good at all to lose time while at work.

Most people think EMS stands for Emergency Medical Services. Those of us who are in it, however know it means Earn Money Sleeping. My point here is while I may have to wake up to go to work, I started finding myself waking up while AT work and with a patient. Very rarely, but it did happen.
On December 10th of 2009, I woke up in the ER. Not that unusual for me, but this time, I was the patient. I had had a generalized tonic seizure while asleep, that had been witnessed by my wife. I had said it before to people that the weird experiences I wrote about earlier seemed like seizure aura's. Which are actually seizures themselves. Called Simple Partial Seizures(SPS) for those which don't involve a loss of consciousness, or Complex Partial Seizures(CPS) for those which do. Well, they were. I knew all along they were. But other than that, really had no reason to suspect that's what it really was.

After several MRI's and an EEG I was diagnosed with having some sort of tumor or lesion inside my left temporal lobe of my brain. The problem was it is so deep, the neurosurgeons where I live don't want to touch it. The area where this is is right around the hippocampus which is used at least in part in storing and retrieval of long term memories. It wasn't that so much as the left side of my brain is my dominate side. A lot of language abilities are located on the dominate side of your temporal lobe. Since the tumor is in my dominate side, my neurosurgeon was too afraid of affecting my language skills to attempt to even biopsy it. Much less try to resect(remove) it.

For those of you who don't have to deal with it, epilepsy SUCKS! I rarely have generalized or full body seizures. What most people think of when they think of seizures. Mine are now mostly Complex Partials. I basically just fade out for a few minutes then usually have a several hour postictal stage where i need to sleep it off. I have tried 2 different medicines over the last year and a half without much success at all to control this. I can not drive, therefore I can not work. I often times can't even do simple things without screwing them up like cooking. If you were to see me while still conscious after or during a CPS you'd think I was very stoned.



I finally had enough. After having my daughter find me on the floor Monday afternoon 2 weeks ago, I woke up to look for a way out. The definitive way out is...surgery. They way that has been done when done involved a fairly large...6cm incision into the front/anterior temporal lobe. There is a new way though. A smaller incision and area removed. The 6 cm incision still tends to cause too much damage...especially with language. The other way is a proven method, but....few surgeons know it.
Basically the difference is the standard anterior lobe resection versus the newer amygdalohippocampectomy which involves less risk to the rest of my temporal lobe and less removal. The surgery has been tested, but since few surgeons know of it, or how to do it, I will be participating in a national research project to teach the surgery to neurosurgeons. Here is an image that shows the differences in accessing the area: [atsimg]http://files.abovetopsecret.com/images/member/e7509de62ec9.jpg[/atsimg]

And here is a view of where/how it's done. lol..it isn't as simple as it looks.
[atsimg]http://files.abovetopsecret.com/images/member/78f118da0840.jpg[/atsimg]

It's sponsored by the National Institute of Neurological Disorders and Stroke which is a division of the National Institute of Health. So they pick up the tab. Free brain surgery! Now what could possibly go wrong with free brain surgery? I go to the DC area in about 2 1/2 weeks for extensive testing to make sure I qualify for the surgery. Basically testing my brains ability to recover potentially lost language skills and/or brain mapping using the Wada Test. Also 24 hour EEG monitoring. There is a high success rate with temporal lobe surgery for temporal lobe seizures. The trick is to balance the potential complications versus the patients current quality of life. Well...as long as I don't end up like the focus of Metallica's song One, who is basically a vegetable trapped in his own mind, it has to be better than this hell I've been living with. If they decide for some reason NOT to attempt the surgery on me, then my next step will probably be to attempt the resection myself...which may not go so well....

One..of course this guy got this way from war....

go for it. worst thing that happens is that you never regain the ability to spell your operation again

reply to post by Kaiuk


lol...I didn't spell it this time either. I copy and pasted!

reply to post by webpirate


ha there so no risk! go fer it

OP, thank you for your post. As the parent of a young man with intractable partial and generalized seizures, it is so helpful to hear your descriptions of the experiences. I can tell they're no picnic, and it's enlightening to hear it from another person's perspective.

My son had brain surgery last year (a different kind--corpus callosotomy which disconnects the cerebral hemispheres) and it did reduce his seizures to some degree. The recovery was quicker than I imagined it would be, and he suffered no reduction in mental capacity or change in personality.

I know that everyone and every situation is different, but I wanted to encourage you, and tell you that I admire your bravery in making this decision. I hope that your experience is also a good one. Would you please keep us posted (pardon the pun) on how things are going with you?

reply to post by Kaiuk


Yeah...my wife was like...maybe they will screw it up some so I do lose some language skills so maybe then I can tell shorter stories!

Webpirate, I'm so sorry to hear you are suffering with this condition and hope that it can be resolved for you soon.
You're smart enough to know that performing any sort of surgery on yourself (other than clipping toenails) is NOT
wise. Self brain surgery? Out of the question.
Kudos to you for educating the medical community! Best of luck to you in finding a qualified surgeon. Let us know how it goes.

reply to post by webpirate


What did I miss? What leads you to believe you can do this yourself? My heart goes out to you and your family

reply to post by graceunderpressure


First off, being a Rush fan nice screen name. I see Signals beat me to it though on your profile..lol.
Part of why I decided to post this was to help educate people on here about this. I admit, even as a paramedic, I was not as educated as I should have been on epilepsy before this all started. I have a bad habit of paying less attention to things that aren't interesting to me. It became interesting really fast though! So I do want to keep everyone posted on how this goes....I hope!

reply to post by SirClem


lol...you didn't miss anything. I was just trying to illustrate how frustrating this has become to me, by saying I would do it myself if they don't. About the only reason they wouldn't is if they decide too much of my language skills would be lost if they were to proceed.

reply to post by webpirate


Gotcha, you had me sweating for a minute

My dad died of brain cancer about 6 years ago and it wasn't until recently on this site I came across some great natural cancer cures. My favorite cure - pot. I realize that cancer isn't what you have, but pot sure can help out most situations...regardless...

Keep us posted, best of luck to you. "no man is an island" - John Donne

Originally posted by whitewave
Kudos to you for educating the medical community! Best of luck to you in finding a qualified surgeon. Let us know how it goes.

It's actually more educating than I may have made it seem. While a qualified surgeon should be overseeing the surgery, a "qualified" surgeon probably won't actually be performing it. Yes it will be a trained neurosurgeon. No it won't even be a resident. It will be a neurosurgery fellow, but one who is learning this procedure. Not necessarily very skilled in it. This is a 7 year research project. And it just started. So I will be one of the first in this project to undergo this.

I have always been into education. As a whole. I would be pretty damn nervous though if this was gonna be done by a second year resident! It's by a already practicing neurosurgeon though. This is funded by a medical part of the US government. They must feel there are enough people with temporal lobe epilepsy who can benefit from this new surgery to go ahead and train more surgeons on it. This being a conspiracy site though I'm sure I will get those who will say "you're gonna let the government into your brain??" Well sort of....but...the only other alternative now really is a vagal nerve stimulator.

My current doctors have already tried to sell me on it. I have refused. There's a really old Pink Floyd song called If. There's a line that goes:

...and if I go insane, please don't put your wires, in my brain.

No wires. They can take something, but not put anything...lol

Metallica fan here too..awesome dude! played alot of electric guitar in my day, and played alot of thier music. sorry too hear abuot the tumor dude. my parents both deceased now, passed from stage 4 lung cancer, my mom in 2001, 52 years old, and my dad 2007, 60. the tumors had gone through thier lymph nodes, and spread all over the body, starting in both cases their left lung. in both cases, it had spread to thier brains, near the ear. my mom at leat, to save her, we attmpted a doctor to remove the tumor..they were able to get 80% of the tumor out then staple her head closed. they couldnt get anymore of it, becuae it was too close to her hypocampus i think.
all i can say, n my research on cancer and tumors, almsot as an obssession, obviously i was so angry at the cigg makers, and chemo therapy...is ive read vitmain d over 1,500 mg a day gives promising results..but everyones body is different, so its a hit or miss* ya know? its not technically a cure, but has been shownt o reduce tumros or kill em off in early stages. cayeen pepper is another...thiers some hot red pepper form south america thats supposed to be really good at fighting tumors. its on this site somewhere....
best wishes dude, and keep early metallica blasting man*

reply to post by ziggy1706


I actually am on prescription vitamin D supplements already. And I was when this was discovered....lol.
It's also directly in from my left ear. It could be argued that cell phone use caused it. And, I might even be tempted to believe it. Except for the fact that I know the smaller seizures started years before cell phones really came into their own. I didn't even own a cordless phone at the time they started. My left ear IS the ear I always use for the phone....or have used since an unfortunate incident with my right ear involving a lot of alcohol, some butter, a friends girl friend and a drinking straw, in the late 90's but that's another story.

This might actually turn out to be scar tissue left over from embryonic tissue when my brain was forming. We won't even know until after they can get to it. My current neurologist however seems to think it's a low grade oligodendroglioma.

ought

Originally posted by webpirate
...the only other alternative now really is a vagal nerve stimulator.

My current doctors have already tried to sell me on it. I have refused. There's a really old Pink Floyd song called If. There's a line that goes:

...and if I go insane, please don't put your wires, in my brain.

No wires. They can take something, but not put anything...lol

I've heard these help some people but our experience with the device has not been that good. My son had a vagal nerve stimulator implanted about 5 years ago. It didn't help his seizures at all, and now his voice sounds hoarse with every other sentence he utters (a known side effect). They're afraid to remove it, so he just lives with the "Rod Stewart effect."

With a name like "vagal stimulator" it ought to be more fun!

reply to post by graceunderpressure


Yeah. You actually wear it like a pacemaker. The wires go to the vagal nerve which is a cranial nerve, or one of the 12 pairs of nerves which originate directly in the brain instead of the spinal cord. The vagal nerve is the one usually associated with fainting also. If you bear down to push, like trying hard to go to the bathroom, you are stimulating your vagal nerve.

This also will slow your heart rate down. As a paramedic, it isn't unusual to find an elderly person passed out while trying to go to the bathroom because they strained too hard, stimulated their vagal nerve and slowed the heart rate down so much they then passed out. Notwithstanding the wires into my brain, I have issues with stimulating a nerve which is also known to decrease your heart rate.

I'm obviously oversimplifying things a lot here and in my other posts on this thread. But still...

Besides...I have enough trouble getting through airport security as it is. The last thing I need is a metal object implanted under my skin to complicate things even more!

Seek And Destroy My Friend ...

Here is a video on the vagal nerve stimulator for everyone who had a question about it.



I still would rather be cut open and have something taken out than having wires put in.

It was not all that long ago that the split brain procedure was common for this sort of ailment...and actually it is still used a bit today but with a different procedure. Instead of seperating the two sphere's they cut the blood supply off to one side and let the other "plasticitize" in the other sphere. I'll see if I can find some information on this split brain procedure and link it.

The corpus callosum is a band of nerve fibers connecting the two halves (hemispheres) of the brain. A corpus callosotomy is an operation in which all or part of this structure is cut, disabling communication between the hemispheres and preventing the spread of seizures from one side of the brain to the other. This procedure, sometimes called split-brain surgery, is for patients with extreme forms of uncontrollable epilepsy who have intense seizures that can lead to violent falls and potentially serious injury.

split brain procedures

Found some of the information...still hunting down some of the actual video of someone after the procedure is done...it's pretty interesting.


Here's a video:

reply to post by jerryznv


Yeah. That's the kind of surgery GraceUnderPressure said her(?) I hope that's right! son had.

Seizures will normally originate in a single area of the brain. Mine begin in my left temporal lobe. If it stays right there, it will produce a simple partial seizure. When it spreads to the other side, and crosses the corpus callosum, that's when the simple seizure becomes complex. And these are the ones that involve the retrograde amnesia, or loss of memories during and just after the event. Also generalized seizures generally cross this mid-brain line too. I would assume severing this link helps prevent the smaller seizures from becoming the larger ones.

Thanks for that update too. I wasn't aware of the different procedures for accomplishing the severing.