ANA Discussion Forum
AN Community => AN Community => Topic started by: Don on February 28, 2008, 12:33:59 pm
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Still fooling around trying to repair the damage from my brain adventures and the results of practicing medicine. In August of 2000 two weeks after my 47th birthyday I had a brain aneurysm burst. I was in a coma for 6 weeks and was told by the neurosurgeon when I finally awoke that I had a brain tumor this is why my hearing was almost gone in my left ear?
Well since I am a no nonesense guy I asked him after he said it needed to be removed that if he took it out would I hear again? He said no but that it would kill me?
Well until my brain aneurysm burst I had only spent one night in a hospital so I was very anxious to get away and get my life back but now in retrospect I wish I had asked when the tumor would press on my brain stem and shut me down for good?
You have to realize I live on a small island in Hawaii the island of Lanai, population less than 3,000 and at the time 1 doctor and I feel this works to my advantage somewhat as their is nobody to try to tell me what I can and cannot do?
I still drive here even though they damaged my left eye during the surgery and I am now totally deaf in my left ear. I had the crainiotomy to remove it on July 31 a little shy of my aneurysm anniversary at the time I weighed about 100 pounds not to good as I am 6'2", Due to the fact I live on another island I had to fly to Honolulu for the surgery and spend the night in a flop house as they wouldnt check me into the hospital early so I had a tooth brush in a paper bag and showed up for the surgery at 6:30 in the morning, well they drugged me up and the next thing I remember is coming to in a brightly lit room and some nurse chirping, "Well Mr.D your awake! Do you know what time it is?" Things like this really annoy me as Im naked in a paper gown what does she think I have keestered a wrist watch? Anyway she goes on to tell me my surgery lasted over 9 hours and my blood ran cold at the thought as I had walked away from a 6 week coma and brain aneurysm I wasnt feeling lucky then.
The next day when I saw the neurosurgeon I got on his case as he had assured me the operation would be a piece of cake but it turned out that all my nerves that control my left side were imbedded in the tumor and it took ages to get them out so goes the story, to make matters worse they didnt get it all and I had to undergo a gamma knife in Jan. 2001.
For those of you that have just been diagnosed leave no stone unturned as my life as I knew it was ruined and the aneurysm was the easy part also a warning about Steroids they caused me to develop oseoporosis and I suffered 5 compression fractures in my spine as a result and spent 4 moths on morphine IVs in bed till I underwent experimental surgery that allowed me to walk agai I am blessed that I have 4 health care options to choose from others may not be so lucky ENSURE you get a bone density scan before under going steroid therapy. I am now 8 yeas after the fact almost blind in my left eye, deaf in my left ear and walk with a cane but I live on a beautiful island and am now an international man of leisure so its OK but if any of you are told that this stuff is routine DO NOt believe it once they cut your skull open you will never be the same dont know why this is but it is so.
How am I sure about this well prior to my brain surgery I used to hunt here on our island, deer and sheep also free dive and spear fish but since my surgery I cant even begin to think about it as just the sight of an animal being hurt depresses me instantly as I know what that pain is like I cant even watch certain TV shows now it bothers me so much, very strange anyway if anybody has any questions feelfre to ask Im always around these days......Don
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Hi Don! Welcome!
OK...here is the big question everyone is dying to ask, but doesn't have the courage so I will do it...
CAN I COME VISIT????????????????
K ;D
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LOL if you dont mind riding around with a one eyed one eared Viet Nam Vet, Ex postal worker in my electric truck! Warning my PTSD kicks in around the TSA goons at the airport so you might get back on the plane!
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Hello Don,
Welcome to the ANA Forum. It sounds like you've had a rough go of it, although I like the "international man of leisure" part 8) .
Regards,
Rob
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Don, Aloha to you too - and I think we'd get along just fine!!
I am a one-eared, slightly damaged right eyed surgery veteran who complains about the postal service and the TSA alot. See, we have more in common than you would think! :D
I'm sorry to hear about all you've been through. It does sound like you've been able to maintain a sense of humor through it all though.
I do like K's suggestion of coming to visit. Maybe surrounding yourself with others like you will boost your spirits. If not, we'll order some Mai Tai's all around - that ought to do it!!
Hang in there!!
Lori
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Don it is nice for you to join us. I'm sorry about all that you have experienced and I wish I could make it all better.
I have a great idea I will hope the plane with K and Lori. We will meet you away from the airport so you don't need to worry about the PTSD. I will bring my son with as he to has left sided paralysis. He is also going to start retraining to drive and I think the island and you teaching him would be a good idea as it scares the heck out of me.
He to has had so many addional problems after surgery. They ended up leaving the tumor so he went through surgery and the massive post op stroke for nothing. He has a great attitude almost all the time and has showed us how to live our lives without being bitter angry and depressed. He is a great son and only 19 now and has always wanted to go to Hawaii! 8)
Kisses to your forehead. :-* 16
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Like I alluded to earlier not being around doctors has its advantages and this island has NO traffic so as soon as I could walk I started driving again I gave my 4x4 standard shift pick up away and opted for an electric pick up truck as we here pay the highest gas prices in the nation, I no longer drink as I was a heavy duty saucier prior to my aneurysm but now somehow the idea of being disabled and drunk doesnt appeal to me so the last beers I drank were on August 27th 2000, I have to stay upbeat as depression will ruin your day if you let it besides I have a large family now who needs me my black Lab Oprah and my striped cat Pablo and my African Gray Parrot Bongo if you are able get some pets they like brain damaged people sometimes I feed Oprah twice and she loves that! My Parrot likes the fact Im home all day and is learning new words all the time as I have time to spend with him right now Im trying to teach him Ebonics so we watch Judge Joe Brown everyday together, Pablo cat enjoys my company all day also the wife is now semi retired so it helps the few days she does work
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Hi Lori 67 you are not alone, one of the stupidest things I have ever seen in my life was our countries reaction to 9/11 picture this, the island I live on is only serviced by twin engine turbo prop little planes and yet we had national guard troops with machine guns watching every move and since my aneurysms were coiled I now have metal in my brain which sends them into a feeding frenzy and they want to strip search me since I live in nice weather my flying attiire is shorts, T shirt and cheap rubber flip flops that they x-ray? Its insane and they dont realize what they are doing as when I fly I use my retired Navy ID card which allows me access to the bases all over the world and to think that when President Reagan visited Guam when I was there I was part of the armed security detail now Im a terrorist? I got on em so bad they sicced the FBI on me as I was the one who started the no water thing as I told them I could fill a sports water bottle with muratic acid and hose coffee juice or Bruce if I wanted and what about what a fine flame thrower a cigarette lighter and a can of Right Guard make? These Sponge Bobs forgot that until 9/11 the most successful terrorist in US history was Timothy McVeigh and he only did 2 years in the Army, I can make Bin Laden look like the Easter Bunny if I want to. As far as the Post Office goes dont worry they wont exist in 10 years due to backward thinking and PC nonsense trust me on this one just think back dont know how old you are but I recall a wire rack with Kodak film next to almost every cash register in the USA all types, 35mm 110 instamatic you name it. Its all gone now as Kodak was smart enough as a private agency to embrace the technology and are OK The Postal Service on the other hand dropped the ball and thinks it can compete with this if they had some folks with brains in the operation they would have developed an e-mail writer to use with a national internet service provider for e-mail only and gotten rich but they instead thought people would line up to buy Bugs Bunny stickers for their envelopes at almost 50 cents each while ARP can mail you truckloads of trash for a dime? They are a sinking ship and if you work for them like I did retire NOW before they lose it all. And forget about that ADA nonsense the site where I worked consisted of 4 employees of which I was the youngest and most able but they gave me the boot, I can still work circles around 3 of the staff so dont believe they will assist you it works to my advantage though as I am now an international man of lesiure and do OK as I have my military retirement to fall back on plus I put in for and got my SSDI so if you were working dont let em try to soft soap you get on their case and get your dinero I dont see em asking teen age unwed mothers half the crap I was tormented for get used to the fact that if you worked they dont want to lose your income to raid for taxes.
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Aloha Don... good to see you here. If you don't mind me asking, what kind of growth was it (ie: AN, Astrocytoma, Meningioma, etc). I'm sorry to hear you have endured so much and just sending wishes of wellness to you. I've had the lovely opp to visit Maui and Oahu but Lanai has been on my list of must sees. If you got any Peaberry coffee beans sitting around, let me know....
Wellness to you... time for you to be healthy!
Mahalo!
Phyl
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Hi Phyl Im not sure as me and my neuro surgeon dont see eye to eye believe it or not he is a Peruvian Chinese guy sounds like something out of a Hunter S. Thomson article his name is Gonzalo Chong and he knows that I know he wanted to kill me as they were lobbying to remove me from life support like that poor Schivo girl and I am living proof of just how wrong he was? I guess I can find out if it is important I started having problems with that ear back in 1977 as I remember I was at sea on the Uss Midway in the Persian gulf at the time and feeling dizzy at night on the flight deck is no fun? Good thing I went to sick bay about it they thought I had an ear infection and gave me antibiotics but the symptoms kept up and life went on and by the time I was ready to retire from the Navy they couldnt figure out why I was almost deaf in my left ear, the only thing I could figure was that many times trouble shooting a jet aircraft I would climb up to the cockpit and remove my hearing protection from the left ear to shout to the pilot over the roar of the right engine? After retiring I used to self medicate drinking at least a 6 pack of Bud a night to make the whooshing sound in time to my pulse go away it turned out whenever I lay down my BP went out of control but how would I know this? First I had a very bad nose bleed then a few weeks later the aneurysm burst? How does one prepare for this type of stuff? I guess the bottom line is if you feel anything is different in your life go see a doctor but dont just see one, see two at least so you can see if the stories and ju ju add up as I quickly have learned that sadly among the medical professions the first liar dont stand a chance, believe it or not I was even biled for a psych eval while in a coma? The guy must be related to Madame Cleo!
On a positive note the young MD who saved my life that day and flew on the medi-vac keeping me alive told me had he known of my unilateral hearing loss he would have sent me for an MRI a well if it wasnt for hindsight I would be blind I suppose thats why these sites work as they provide thoughts to prospective victims.
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One other thing Phyl is that Lanai is a 45 minute ferry ride from Maui so the best thing to do is visit Maui and make Lanai a day trip as if you dont like solitude and lack of fast food and stores Lanai is not for you Kelly Ripa was staying at one of our resorts and bought her son a box of cereal for xmas as we have only 4 dinky general stores you cant even buy shoes here?
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I hate shopping... for real.
Phyl
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Hi, Don:
Thanks for your contributions to the forum.
You have every right to be somewhat cynical but your posts are amusing to read because you've kept your sense of humor (and irony) in spite of a near-fatal medical crisis (the burst aneurysm) and some serious physical setbacks (unilateral hearing and eyesight loss) as a result of your AN. I certainly thank you for your notable military service. Your post office experience seems to have been less than rewarding but your forced retirement - and decision to move to Lanaii (a Hawaiian island) is fairly good revenge, if not perfect justice.
I concur with your assessment on the dismal future of the USPS. As usual, when a government bureaucracy is in charge of anything, they usually screw it up. There is no real incentive for excellence, much less to make a profit, and it shows. If the demise of the U.S.P.S. is imminent, as you predict (I won't argue with your reasoning as it appears sound) few will mourn it's passing.
The FAA's reaction to 9/11 was probably well-intended but like so many government-based programs, annoying and ultimately ineffectual. I hardly feel safer from the possibility of having to confront terrorists on an airplane because bored TSI employees are inconveniencing travelers while missing plenty. However, the urge for politicians and the bureaucracy to DO SOMETHING following the unprecedented attack on our nation back in September 11, 2001, was simply too serious to ignore. The ease with which a determined terrorist could board, commandeer and crash a commercial airliner was appalling. I'm not positive it still couldn't be done - but it hasn't - which is a good sign. Too bad commercial aviation has suffered and the airlines desperate cost-cutting has made flying a struggle. On time? Amenities? You've got to be kidding. Feel safer yet? Don't get me started on the worthless ADA, it's manifold flaws and inadequate implementation. Well, enough ranting.
Say hi to Oprah, Pablo and Bongo for us. Again Don, thanks for your military service and your entertainig, sardonic posts. You're a welcome addition to the forum. Good to have you aboard. :)
Jim
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He's like the 'John Corey' character in Nelson DeMille's books!
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Don
I wish you had posted a little earlier than this. I just got home this morning from Maui. I had an AN removed from my right side 6/28/07. I have problems with my right eye but I can still see out of it. I still have right side facial paralysis and I frequently get shooting pains in my head and sometimes just dull constant pain (right sided of course). My balance has gotten really good though, I still have problems when its darker out and I did have a bit of a problem up in the mountain. Other than people looking at you funny and a few comments I had a great time. A couple of things I didn't get to do was a fishing trip (cost) and some snorkeling (wasn't sure how I would handle it yet)
Ellen
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Wow, Don, this is quite a story! I am sorry you went through so much. I heard about steroids and osteoporosis but that involved long-term steroid administration. How long were you on them and how big was your tumor?
Eve
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Yeah Ellen you missed out as Lanai has some of the best snorkeling in the world within walking distance of the ferry landing it is a marine preserve so the fish are plentiful and tame snorkeling shouldnt be aa problem I used to spend 5 to six hours in the water somedays spearing fish and grabbing lobster but following my aneurysm I couldnt see so I sat on the beach and cried I was so bummed as this is one of the main reasons I live here and Jim I was working at Lanai's PO and was happy about it as it was a no brainer job and the max I worked was a 40 hour week around Christmas the rest of the year was 32 hours which suited me fine plenty of time for off road motorcycles , fishing, diving and surfing. Eve I suppose I was on cortico steroids for a couple months as the morons at the re-hab hospital were trying to train me for the olympics following my aneurysm, the fools would lay me on a mat and bend my leg and I would scream out in pain and they would get dumb looks on their face and say, "Well that shouldnt hurt?" Never knowing I have degenerative bone disease in both knees after repeated traumas from racing motorcycles so they started injecting me according to my son 1 shot was supposed to do it, two was iffy, but no due to their need to torment me they gave me three? They used to keep me tied up in bed on video 24/7 as I would have loved to escape I would have died there if my Son had not listened to me and had me moved to a nursing home where I was like a premature baby and the average age was 80 something and its hard to recover when folks around you are dying I can assure you I never want to go to one of those places again but they had one commodity that the re-hab didnt an excellent nurse who knew why God gave her two ears and one mouth and listened to her patients and within 4 weeks I had conned em into letting me go as I KNEW if I didnt get back home I would die so my wife had to learn how to tube feed me even though I knew I could eat and drink and would have my boy sneak me water and food and I tore that stupid tracheotomy thing out of my neck and threw it out the car window on the freeway for cryin out loud I know if I can breathe or not. Then a year later I had to deal with the tumor BS no rest for the wicked I suppose. Dr. Chong told me it was the size of a golf ball and I wanted to see it but they said they had to do a biopsy on it? About a week after I got home a woman called and told me my tumor was benign? So I told her in my best black voice"What you say? Why caint it be ten o sumthin what you talkin bout I be nine? she told me this meant I didnt have cancer I guess the term is malignant so far the big C has avoided me and Im keeping my fingers crossed as my sister died from brain cancer and it was not a pretty thing.
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Don,
My mother had a stroke a couple of years ago and because of her and my experience I found that therapists are under pressure to perform even if it means a complete disregard to the patient's pain and well-being later. I believe that pain is the nature's way to tell you that something is wrong and you should change things. I just refuse to put myself through more!
Gosh, you have been through a lot! I hope things are finally stable and you keep making a recovery.
Eve
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Well Eve recovery is possible it just takes longer at my age, the newest wrench was I found out I was Pre Diabetic last april? I sure as hell dont need no Diabeety to add to the mix so I had to change the way I eat and force myself to walk at least a half mile a day, my number is down now but short of starvation my tool shed wont go away I even do 100 sit ups every morning? I think the brain is messing with my metabolism and even if I eat granola I gain weight granola and yogurt?
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Hi Don,
Even in Paradise, nasty things happen. So sorry about all your troubles. Do have to mention that I lived in Hawaii for three years. I have a lot of wonderful memories of that time period. This was when I was but a young lass of 20, back in 1966, when Hawaii was ruled by another Don. Mr. Ho, that is! It was an interesting time to live in Hawaii. Of course, Lanai was owned by Dole and was not a destination point at that time. Maui was barely a destination point! Of course, I lived in Honolulu. Take care of yourself and I wish you all the best aloha to you.
Sue in Vancouver, WA
(Where, surprisingly, there are a lot of Hawaiian people living here.)
PS. I got the "Diabeety" also. Got that diagnosis Winter of '03, and AN diagnosis, March of '06. Bummer!
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Doesn't PT stand for "PAIN & TORTURE"??
K
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Doesn't PT stand for "PAIN & TORTURE"??
K
My Moderator Middle name! :D
*skips off merrily*
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I prefer the term "Physical Terrorist", thank you very much. :P
I had the cutest little old man patient introduce me to his family as that once. Nearly fell over laughing!
Lori
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Don,
It took me fully 10 years to recover from the first AN surgery... only to find out that the tumor is back! I was only 25 at the time. I am also taking my time recovering after the second AN surgery. It is official: I am a slow poke!
Eve
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But at least you recovered it has been almost 7 years now and Im still wobbly? If I think back its way better than being in the wheelchair but Ive always been impatient and just wish my body wood cooperate?