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Got brain tumor and got it removed

Posted: Sat Dec 01, 2018 6:53 am
by kensuguro
Very eventful past 2 months. My family was in Tokyo so kids could try going to school in Japan. I stayed in NJ to stay watch over my project at work. A week before my flight to Tokyo, I got a major headache. Smoke alarms had been doing the low battery blip 24/7 so I just took all of them down, and figured several nights of poor quality (or zero quality) sleep was the root of the headache. The headache was bad like I'd never had before. Like roll around on the ground and groan bad. I seriously thought I'd been cursed.

So boom, took the flight to Tokyo and told my mom about some lingering pain behind my right eyeball. Few days later I went to the eye doctor who whiped out 17 different gadgets to digitally CSI the hell out of my eyes. After lots of bipping and bleeping, the result is that my optic nerves were inflamed to the point of bleeding. And the Dr. urged me to go get a CT scan since having pressure on the optic nerve in both eyes usually means the pressure is coming from the brain, which is not nice. And right away the eye Dr. made arrangements to get a CT, I zip over on the train and get an array of CT and MRIs. That hospital happened to be my alma mater so that was kind of cool. I'm Keio univ., but didn't even know we had an impressive medical department. Apparently they're famous.

Impressively, the neurosurgeon was still around in the middle of the night to decode the CT and MRI scans. It's a tumor, high cranial pressure, and there's been some bleeding, which most likely was the source of the major headache curse. And the neurosurgeon was much more freaked out that I was, and he made it a point to let me know he wasn't going to let me out of his sight since I could drop in to a full blown coma at any time. I was like "uh, ok, if you say so" and just played along. No talk of surgery yet, but it was obvious that was the only real way to directly fix things. I'm started on some IV meds to drop cranial pressure, which didn't really have any tangible effect.

Basically I was hospitalized for all of October so the neurology dudes could keep an eye on me. I was in the room right infront of the nurse station in case the "coma at any time" really happens, but of course, nothing happened. I just got to know the nurses very well. 10/27 I had the surgery.. the strategy was pretty much "get rid of the crap", with a bit of live pathology testing to see how far the tumor had spread. The procedure went as planned and I woke up in the ICU, massive headache, and almost the entire surface of my head and face in pain. Japan's attitude toward pain management was very interesting. Drs and nurses would come around to ask if I'm in pain, and I'm like "this is living hell". The medical staff, instead of getting actual pain killers, would give me the equivalent of a tylenol and tell me "you just had an open brain surgery. The pain will come, and it will be very, very bad". Ya, thanks guys, that's very encouraging. The pain meds here are about as effective as tic tacs in term of doing anything about pain. It's like telling your wife something hurts. (no help, what so ever)

After about 2 weeks of battling with the hospital staff to get actual pain management, I think my body recovered, and the pain subsided on its own. Sleeping was much easier when the nurses weren't freaking me out by quietly staring at me from between the privacy curtains. (that image will stay with me forever) The winds must have changed, but the Drs suddenly started talking about discharging, and from there, it was only 2-3 days to being discharged. I think there was a final MRI scan, but all was fine and on the agreed upon day I was like "eff this $hit" and took a cab home. I was quite sick of the hospital environment after a month's stay, though I really appreciated all the hard work the nurses put in to make all the patients feel comfortable. (and less dead)

Re: Got brain tumor and got it removed

Posted: Sat Dec 01, 2018 9:45 am
by Ripper
Cool you're fine after that sh1ty #$%&/!/!$&%$%& thing.
Hope you recover completely and strong as steel!
Cheers mate!

Re: Got brain tumor and got it removed

Posted: Sat Dec 01, 2018 10:21 am
by garyb
wow, heal up!

Re: Got brain tumor and got it removed

Posted: Sat Dec 01, 2018 10:32 am
by t_tangent
Sorry to hear you've had a rough time lately Ken, but great news that you are now on the mend, and I wish you a quick and full recovery.

Re: Got brain tumor and got it removed

Posted: Sat Dec 01, 2018 11:02 am
by dante
Yes Ken that all sounds nasty but as long as its fixed with no permanant damage that's what counts. Sorry you had such a bad month ! Ive never heard of nerves bleeding. Bet you learnt a lot from that experience ! Now get home and write some music about it !

Re: Got brain tumor and got it removed

Posted: Sat Dec 01, 2018 12:36 pm
by yayajohn
Ken; Sorry to hear about your trauma. I had an extreme case of pancreatitis 3 yrs ago and they had me hooked up to a morphine machine for 2 wks and then was on oxy for 6 months thereafter. Can't imagine the amount of pain you had to endure. Very glad you are still here with us. I hope for a speedy and full recovery for you.

Re: Got brain tumor and got it removed

Posted: Sat Dec 01, 2018 10:33 pm
by Marco
OMG, you are such a super talented guy! I wish you a quick and full recovery.! I am a pro nurse working on a neuro station in a hospital every day since 10y. Keep it up man!

Re: Got brain tumor and got it removed

Posted: Sun Dec 02, 2018 1:34 pm
by jksuperstar
Damn, glad you are ok now, Ken. That's one hell of a scare! Truly, I am glad you made it through ok. I appreciate your less technical and more artistic insights here...which is to say the humanity you bring! Please keep bringing it into the world.

Re: Got brain tumor and got it removed

Posted: Tue Dec 25, 2018 4:31 pm
by astroman
That story read frightening like hell.
Thumbs up to your attitude fighting through it and my very best wishes for recovery.

Re: Got brain tumor and got it removed

Posted: Wed Dec 26, 2018 2:26 am
by wayne
Wishing you all the best, K