I was'nt scared

[thecakes]

   I was never scared when I found out about the tumor.  Weeks before my DR. told me there was this binign tumor you can get in your head.  He went on to discribe just what I had.  Then he said about 9 hours operation, about a 5 day stay and he made it sound real simple.  I was fearless.  I did'nt think about any complications that could be involved.  Now I know better.  This is a big deal.  I do'nt mean to scare people off.  Its truely wonderful what the Drs. can do, but do your "homework" ,educate yourself well.  This is your life.       {sorry for the negitivity}

[Kathleen_Mc]

The Cakes : I too was not scared (consciously at least) during the 1 1/2 weeks I waited for surgery, I actually bacame somewhat "high" and went on s spending spree. I didn't ask any question of the doctor. I was in a situation of no options and the only thing I remembered after meeting with the doctor was I only had a 50% chance of getting off the table alive and even then I may not be able to walk....after that I didn't see the sense in asking anything else (nothing else mattered at this point). I got a little nervous the night before and they gave me an Ativan and then again in the morning to keep me from running out of the place (little gown or no).
Yes I agree that knowledge is a great thing, I wish he had explained the "little" things that might happen should I survive the operation. I may not have retained it but my father was with me and he would have (his nature to cling to the good things).. I wish we had of had a computer and the internet, maybe in the nights I couldn't sleep I would have researched it myself and found some things out. I was free to call the doctor to ask questions as I needed but I always felt the need in the middle of the night, in the daylight I was too busy getting lost in shopping.
Kathleen

[thecakes]

  kathleen,  Thats scary 50% .  Why?

[Raydean]

I'm not Kathleen, but my guess is because we heard the same things that due to the size of the tumor and brainstem compression cranial  nerves are affected,these nerves 10, 11 12 have the ability ot affect many parts of the body including heart functions, ability to walk and so on.  Google in Cranial nerve functions for more info.

Raydean


PS hey I'm a full member now

[matti]

When I was finally diagnosed, my GP called with my MRI results and he made it sound as if this was as simple as having a splinter removed and it was not a big deal. The surgeons would make a very small incision and BAM there's the tumor, very straightforward.  Boy was he ever wrong  >:(  Needless to say, he in not my GP anymore.  The moment I met my surgeons, I can honestly say I was not scared, they were awesome. Luckily, I had my surgery one week later, and in that time period, I was so busy with tests that I literally did not have any down time to think about what was going to happen and I am very happy for that.

Hey Raydeen, congrats on turning 100. 

[stein78]

I wasn't scared at the beginning, just very concerned, but I knew it was serious.  Once I saw the MRI film, I totally paniced.  I didn't expect the tumor to be so far in there, and looking at my brain being distorted by the tumor...YIKES!  Then when I met with my surgeons I was feeling better, until they started explaining the surgery. 6-8 hours, we cut here, we drill there, take some fat out there and put it there, monitor this nerve, monitor that nerve, 1 day in ICU, ~4 days in the hospital....etc etc...  Then I started panicing again. 

The thing was, I had three months to wait for surgery.  I had many highs and lows, but on the day of surgery I was ready.  I was almost excited to finally get it over with.  I gave my family thumbs up as they wheeled me away and when I saw the docs for the first time I said "I'm ready to rock and roll!  Let's do this!" 

[Jeanlea]

I didn't know enough to be scared.  Up to that point in my life I thought that I'd been perfectly healthy.  After hearing I had a benign brain tumor (can't die from something benign was my thought) I just wanted to know what I had to do to do take care of it.  I knew so little that I relied on my doctor.  There was only one month between my diagnosis and surgery.  The tumor was too big to wait longer.  Now I have the rest of my life to comtemplate the after effects.  I'd smile about it if I could only do so.

Jean

[Battyp]

I think I was too busy being mad at the doctor who misdiagnosed me for 6 mos causing me to lose my hearing and have balance issues.   After I met with the surgeon I was ready to take care of business.  Besides I felt so bad I just wanted to feel better..hmmm still waiting for the later to happen.

Stein...how did you have translab with a 2.5 tumor?  that wasn't an option for me did you have brain stem involvement? 

[Captain Deb]

I had gone to my GP for what I thought was an ear infection--stuffy ear hearing distorted, and by the way--my headaches are becoming frequent and severe. He said I could have an acoustic neuroma (a what?) He gave me some migraine medicine and scheduled me for a hearing test the next day next door at the ENT.  I showed up for the hearing test with a headache that bloomed into a real whopper during the test.  After the ENT, I couldn't drive, so I walked over to the GP crying and told him I was having a really bad migraine and the meds hadn't worked (didn't take it in time, apparently) He immediately got me into the hospital across the street.  I was so dehydrated it took 8 pokes for them to start an IV.

They pumped me full of drugs and I spent the night and had an MRI the next day.  My GP came down and stayed with me thru the whole MRI.
He's a great guy and has since become a good friend.

That evening the ENT came up and told me about the AN. I was alone in the hospital room--hubby was teaching.  Boy, was I freaked out when he mentioned the words loss of facial nerve function, hearing loss,  and described the 8 hour surgery and the permanent headache I could have.

The next day was Thanksgiving and my very pregnant daughter-in-law came and cooked most of the dinner.  I was totally freaked until I got on the computer and found the ANA sight and the listserve and started talking to other AN survivors. 

I chose to have surgery because it was the best fit for me and the 2 month wait was agonizing.  I couldn't work or sleep and had a few panic attacks and was really really scared.

ME!  Been in a 32 foot sailboat in 20 foot seas breaking spreader-high 700 miles from land and I was terrified of a little booger-sized goo-goo in my noggin!  Go figure!

 I did go to the best place IMO for surgery House Ear in LA.  I talked to several of Dr Friedman's patients before I went, which helped a lot.

When I finally got to House, all the people and docs were sooo wonderful-even the paper-pushers.  I felt so relieved and reassured I went into the surgery with a positive attitude.  Besides, at the guesthouse there was an entire floor full of nuns praying 24/7 for all us patients!

I wore my leopard jammies, leopard robe with tiger trim, and my cheetah slippers and all the nurses called me Jungl Girl!
Well, my facial nerve was unfazed except for a little rash I had for a couple years, and the surgery was 2 1/2 hours, not 8, and I have had a lot of headache issues, and I did lose the hearing in that ear.
 
Anyway, that's my story and I'm sticking to it.

Captain Deb

[ppearl214]

Jungle-Girl/Capt'n Deb, thank  you so so so very much for sharing that with us all... my already-established respect for you just grew 10-fold!

BTW, I wanna borrow those jammies, you hot ticket!

xoxo
Phyl

[Kathleen_Mc]

The Cakes: The 50% survival rate off the table was because of the tumor being so close to the brain stem and the rest due to potential loss of more nerves than what I did lose. The really scarey thing was that I wouldn't have survived long without surgery as the tumor was so close to the brainstem and if that got compressed yikes! Canada didn't have gamma knife at that time and even if we did I wouldn't have been able to have it so there was no room of a decision on my part.... not even the surgeon, I got the guy who had the time soonest. Kathleen

[Boppie]

I picked up my own MRI and interpretation report at the hospital and carried it to the ENT's office.  I read and knew the whole paper before the ENT came out and said, "I am afraid I have bad news for you."  I kind of felt sorry for the guy..what a bad thing to say to a patient.  But the tumor and 2 cm size was a total shock to my husband and me, no symptoms except creeping hearing loss over a long time.  I figured at age 63, I had to get rid of the tumor so I'd trust my doctor and have translab surgery.  This is attitude I had.  Oh, yes, I prayed, I fidjeted for two months' waiting, but cry?..I couldn't ....felt like "be a brick" as my Mother would say.  I went through all of the motions as if I were a zombie.  I learned everything I could  because my ENT and surgeon sent me to this forum.  I sat in a room full of girl friends and told them I had a brain tumor and that I would loose my hearing but not my life.  They were mute and mesmerized.  I cleaned my house, took care of my affairs, had a photo made of my smile, and went into the surgery with total trust in my doctor.  He is a jewel!  On waking up I thought I'd died... Couldn't hear, the room looked crooked! :-\ 

So now my old life is the back with adjustments, what? .   How wonderful it is to be here!

It has been a while since I was able to put these words down because I like to write about the positives.  So, please, if any of you feel hurt or confused by my words, please post me.

[stein78]

Stein...how did you have translab with a 2.5 tumor?  that wasn't an option for me did you have brain stem involvement? 

I had retrosigmoid, but translab was an option.  The tumor was pushing on my brain stem.

[Static]

I had a suboccipital, mine was pressing on the brainstem.  I was given 1 month after my initial consult and the ENT contacted me and told me I needed to make a decision.  The compression was too much and I needed to do something ASAP.  I decided I wanted that alien outta my head.  With all that I read, it still didn't prepare me for what lied ahead of me.  I was sooooo depressed after having to use a walker to walk,  I never thought walking could be so difficult.  I did read all of the information and knew what I was facing but I think I was in denial and felt like it wouldn't be as bad as it ended up being for me.  The surgery was 9 hours and that tube really ripped up my throat.  I couldn't  believe what had  happened.  I was in denial again.  After I got home, it took me so long before I could hold my head up and function for any length of time.  I completely isolated myself for quite some time, even stayed away from this site that originally had given  me so much information.  I thought something was wrong because it was taking me so long.  4 months after surgery, a CSF leak was found.  I knew about it sooner but was afraid of more surgery  because the first one was horrible.  I've had other surgeries before, 2 c-sections, emergency surgery for a perforated ulcer, various sinus surgeries, etc.   I wasn't afraid.  I was stupid, I was in denial.  Finally had the CSF leak repaired, it wasnt as bad as the first surgery (I think the test to find the leak was worse than the leak being repaired) but this time I was afraid, really afraid.  The emotional changes I had gone through and still go through at times are a roller coaster ride.  I'm not trying to scare anyone, I think I just needed to get this out.  Do your homework,  be prepared.  Anything can happen.  Be prepared, not surprised!  Maybe it was just me 

[ppearl214]

Due to other health issues, I was suffering massive migraines with no answer why (could it have stemmed from my other ailment?). Went to the ER and doc (after administering a 50mg dose of demerol that did nothing for my head) suggested a head MRI to rule out Constrictive Blood vessel disease.  I call my (then) primary care physician and ask him to order the MRI.

I go have it done and requested a copy of the report for my dr treating my other ailment.  Well, I got the report before my then-primary care doc saw it.  Of course the minute I see Schwanoma and Chiari 1 Malformation, my little fat fingers started typing all over the internet to see what they were.....  I call my dad, asking to meet me for lunch.... we need to talk and figure this all out.

My then-primary care physician calls me.. and what does the twit tell me? That the MRI was "normal".  Guess he was wrong, eh?

So, I find the ANA website, call them for info, see the discussion forum on their home webpage and voila, you all are stuck with me now.

I was scared in reading the report when I first got it. (remember, already had a sibling with malignant brain tumor who we lost in 1969) but another sibling with one (albeit benign)?  I was scared the first 6 mos.  Still am, in all honesty.  I think the "fear of the unknown" does bother me at times, but then... I usually kick myself in the buttocks and pick myself back up and just remind myself that if it weren't for folks like my sister or you all... then modern medicine wouldn't be where it is today and I'm glad that I live in the age of medical wonders. 

Phyl