ANA Discussion Forum

Post-Treatment => Cognitive/Emotional Issues => Topic started by: phx on December 21, 2010, 10:08:18 pm

Title: When were you diagnosed?
Post by: phx on December 21, 2010, 10:08:18 pm
I was diagnosed at 23, one year ago. I remember the doctors telling me they didn't really see AN's that early on. This is probably why I feel like it's death sentence for me because the otologist said with my age, if I didn't get it taken care of, it would kill me. I can remember sooooo well how he said that and how he looked like when he said that to me. I still get anxiety thinking about it. Looking back now, I wish he would not have said that to me because I felt like it was a life or death situation. I had only been diagnosed 3 months prior to the surgery. Talk about feeling rushed!
Title: Re: When were you diagnosed?
Post by: Tod on December 22, 2010, 06:06:57 am
Phx, I was diagnosed a year ago on the morning of New Year's Eve. Surgery was six weeks later. Every doctor was very clear that I had three to six months to have surgery otherwise I was facing coma and death. So I hear what you are saying.

But there are 25 years between being 48 and 23. I have certain perspectives developed from experiences that you have not had yet. So, for me, and I emphasize this is only *my* experience I don't want to speak for anyone else, I've been able to face this with a certain amount of equanimity. That is to say I accepted rather quickly that this is the journey I must take and it was up to me to make the most of it.

I'm not sure I can put myself in your shoes and understand what it would have been like to face this so long ago. I do understand your concerns about the future and feelings of anxiety. I'm sure many others do as well. This is not easy stuff.

Also, a year is really not that long of time. At the same time your body is healing, your mind is still trying to come to grips with both the physical healing process and the process of understanding how your life has changed. Even though it is very clear that these tumors are eminently survivable, the only time the phrase "brain tumor" is not scary is when it is the answer on "Wheel of Fortune".

I guess what I am trying to say is this: you are not alone.

Title: Re: When were you diagnosed?
Post by: kiwi on December 22, 2010, 02:17:20 pm

I was diagnosed 2nd Dec 2009 - then saw my ENT 10 days before Xmas who told me if I don't have it removed I would die, it was a terrible xmas last year. I was 38 so a bit older but what made it worse was it was already a big tumour and he also told me that I was more than likely going to suffer facial paralysis but he did give me a 60% chance of a recovery.  All in the past now - still have facial issues to remind me but I am alive and Im happy.

Title: Re: When were you diagnosed?
Post by: Jim Scott on December 22, 2010, 03:13:15 pm
Phx ~

I'm not certain if you're asking what the date was when we were diagnosed or what our age was, so I'll answer both questions.

I was diagnosed in mid-May, 2006.  I was 63 at the time. 

I was also informed by my neurosurgeon, who had performed hundreds of AN removal surgeries, that the tumor was operable but that if I ignored it, the AN could eventually kill me.  I did not feel rushed, just duly warned of the seriousness of the situation.  I scheduled my surgery for two weeks later and have never regretted the decision.  I just wish I had acknowledged my symptoms sooner and possibly avoided becoming SSD (pre-AN, I enjoyed excellent hearing).  However, on balance, I've had very few medical problems in my life and this one had a relatively good outcome so I have no complaints.

Title: Re: When were you diagnosed?
Post by: lori67 on December 22, 2010, 04:17:25 pm
I was diagnosed at the end of January, 2007 and had my surgery about 3 weeks later.  I was 39 at the time (but if anyone asks, I'm only 29   :-X).

I consider the short wait prior to surgery a good thing, as I had less time to stress out about it.  I'm sure given more time, I would have found more things to worry about.  As it was, I was cool as a cucumber the whole time.  Even my primary care doctor who had to tell me the results of my MRI was shocked that I wasn't a blubbering mess while I was in his office.   I remember he looked at me and said "Ok, I kinda thought you'd be a little more emotional right now".  Of course, this was only the second time he'd ever met me, so he probably didn't know I'm not overly emotional to begin with.  I just said, well, we know what it is, we know we need to get rid of it, so let's do it and get on with it.  I had two little ones at home (4 years and 9 months) and a husband who is Active Duty Navy, so not getting back to being functional was not an option.

I'm not going to say I didn't have my days when I felt sorry for myself.  I do miss my hearing and dealing with the facial paralysis issues are certainly a pain in the neck, but I allowed myself to mourn my losses (and that wasn't until well after one year post-op) and accept the new normal.  I also find it helps to keep things in perspective.  No, I can't hear out of my right ear anymore, but I can care for my family, I can enjoy my friends and I can do things to help others.  I've found there are lot of people out there with much bigger issues than mine.  I've also learned that I am bothered more by my facial paralysis than anyone else is.  We are our own worst critics!

So, I agree with Tod - you are not alone.  And I also know that like me, you probably feel that after a year you should be "all better".  When it comes to brain surgery, a year isn't a long time at all.  Don't be so hard on yourself.  Things will get better!   :)

Title: Re: When were you diagnosed?
Post by: Nickittynic on December 24, 2010, 08:56:25 am
I was also only 23 when diagnosed. It was just before my 24th birthday. And I had surgery 1 month after diagnosis.

My surgeon actually said he sees a fair number of people our age with ANs, and that usually when people in their teens and 20s have them, they have big ones (I guess the reason being we [the 20-somethings with tumors] "grow up with" our tumors, so we adapt around them and typically don't have symptoms until the tumors are really big and bothersome).

I wasn't exactly told that I would die without surgery, but was told that given my age and size of my tumor, W&W wasn't really an option and it was better to get it out sooner rather than later.

I didn't realize we were so close in age!
Title: Re: When were you diagnosed?
Post by: leapyrtwins on December 24, 2010, 09:19:35 am
phx -

regardless of age, if an AN gets large enough it can kill you.  Doesn't matter if you're 23 or 43.

I was diagnosed about 3 months after I noticed diminished hearing in my left ear.  I was 45 1/2. 

I answered the phone one day and realized that the person on the other end sounded muffled and far away.  I also noticed that my ear felt "full" like when you're on an airplane.  I thought it was just a sinus infection or a cold coming on, and decided it would go away on it's own.  Wrong.

I kind of forgot about the issue, but when I went to my internist for a regular check up and he asked about problems, I mentioned my ear.  He said it was probably just wax, but that he'd take a look.  When he saw nothing, he gave me some ear drops and we decided if things didn't improve in 10 days I'd see an ENT.

Drops were ineffective, so I went to my ENT who did a hearing test and told me the hearing in my left ear was definitely "going".  He looked into my ear, didn't see anything, and scheduled a MRI with gadolinium contrast.

A day or two later he called me and said there was "something" in my ear.  He refused to spectulate about what it might be and surprisingly told me he didn't know how large this "something" was  :o  He then referred me to a neurotologist who he said was one of the best in my area (thankfully he was right about this).

I went to the hospital and picked up a copy of my films, and though I couldn't see the AN that was staring me right in the face, the radiologist's report told me what it might be and it also told me the measurements. 

Long story short, my neurotologist told me that I could have radiation, surgery, or I could watch and wait for a time, but not too long.  We discussed all the options - which quite frankly scared the hell out of me - and I went home to decide what I'd do.  My neurotologist flat out refused to tell me, despite me asking him repeatedly.  At the time this frustrated me - I was looking for a way out of making my own decision - but in the end I realized he was completely right.  It was my decision, not his. 

Although I initially told my neurotologist there was "no way" I could have surgery, that's ultimately what I chose because I felt it was best for me.

I scheduled my surgery about 6 weeks after my diagnosis because I had a business trip out of town and my doc puts restrictions on flying.  I had my surgery at the end of May because I wanted to be on a plane to Denver the first week in August.

I have never doubted or regretted my decision.  I had total confidence in my neurotologist and my neurosurgeon and would do it all over again if I had to. 

Title: Re: When were you diagnosed?
Post by: Kaybo on December 24, 2010, 09:33:30 am
I was 25 and the ENT that ordered the MRI called me himself at school (I was a 1st grade teacher) the very next day - it was the Tuesday after Thanksgiving.  I had been married just over a year and we had just taken steps to start trying to begin a family.  I was in Houston the VERY next day and surgery was scheduled for the following Thursday!  Apparently, my brainstem was all the way over to the left side of my head and I was very close to death!!  EVEN though I felt fine!!

It is certainly not what I had planned for my life (sometimes I feel sorry for my husband for a different life for us), but the "new normal" is workable - I have gone on to have 3 wonderful daughters who are our pride & joy and think I am very active...just a little more give & take and planning required on my end!

K   ;D
Title: Re: When were you diagnosed?
Post by: Mickey on December 24, 2010, 10:45:44 am
Kaybo that is very inspirational and probably a model for all with the worst case senerio AN. Pesonally I don`t believe a doctor should scare a patient out of there wits. Especially for people who have AN`s with todays technology find yourself a good doctor do your homework and for the most part everything will be fine. God bless + happy holidays, Mickey
Title: Re: When were you diagnosed?
Post by: Mark241 on December 24, 2010, 06:34:56 pm
(39 yrs) I was diagnosed 2 weeks before Christmas 04, my wife was out of town helping our son move into his new apartment at college.  After the MRI i went home, and the imaging center called me to return. Once I walked in, the Radiologist asked me to come into her office and offered me to sit down. She showed me my scans and told me I had two large brain tumors, one on my brainstem that had "bent" my brainstem nearly in half, and was partially into my brain. the other was a right side AN. All I could thimk about was cancer, my close friend had just undergone surgery for a malignant brain tumor, (since passed). I was assured that they were benign. I was operated on at Barrows 2 weeks after for the first tumor, then again 6months later for the AN. As much as I dispise NF2 , that AN saved my life. 
Title: Re: When were you diagnosed?
Post by: opp2 on December 24, 2010, 10:41:35 pm
I was 43. I had been having very funky head aches, was then diagnosed with migraines. Then my face started to tingle and go numb starting at the left side of my lip. It gradually got worse (the numbness). I was being seen by a neurologist for the 'migraines' and he told me to come back and see him if my face got worse. Then I went to the dentist, who sent me to a dental surgeon, who recommended an MRI. I asked my family Dr for an MRI, and the appt was for 4 months hence. I decided to hop the border (I'm from Ont Canada), and pay for an MRI...

April 14th, 2008 I took the CD of the scans home and looked at them. By the time I saw my Dr 3 days later, I was fairly convinced that I had an AN from my research. 
Title: Re: When were you diagnosed?
Post by: cin605 on December 28, 2010, 11:21:41 am
I was diagnosed on my 42 Birthday...May 6, a about a bomb dropping.
Vertigo,hit in the back of head w/ a baseball batt feeling,nausea....side swiping cars and doorways..for 10 long years..loads of steroids antibiotics....they thought inner ear infection...then changed it to Meniers Disease...then the tinnitus came...i went to ER and got cat scan,,,2cm in inner ear canal,extending into cerebellar pontine angle pressing on brain stem...
Got the news over the phone....then the next month i was at dartmouth Hitchkock for a 81/2 hour surgery.
What a long ,strange trip its been....
Title: Re: When were you diagnosed?
Post by: KimLyle on December 29, 2010, 09:03:11 pm
I was diagnosed in feburary when I was 21...I had the surgery in march of 2010 soo almost a little under a year ago. I was also told that surgery was really my only opption. It has been a crazzy year I had AN surgery, graduated college, lost my hearing in my left ear, have no facial movement on my left side soo had 7-12 and cross facial never a mouth ago, In the middle of this I been working part time and applying for grad school or a job next year, not sure which one i want to do yet. but ya its def made me feel like I have to grow up and not go out to bars like most my friends do when they turn 21..I was plaining surgeries but now I trying to move on and still go out and live it up because thats what you gotta do in ur 20s  ;D
Title: Re: When were you diagnosed?
Post by: Kathleen_Mc on January 15, 2011, 12:42:22 am
like yourself I was 23 when finally diagnosed, it was presented to me if I didn't have surgery I would not live much longer (tumor within mm of the brain stem), I had surgery a week and a half after diagnoses. At that time my doctor told me they hadn't seen such a large AN in anyone so young in Toronto
Title: Re: When were you diagnosed?
Post by: phx on January 19, 2011, 07:40:12 pm
Really? Wow, your story sounds similar to mine also. Mine is still pressing on my brainstem too. How much of your tumor was removed? They were able to remove 15% of mine. Yup and Doctors said they didn't see many people around 20's with such a big tumor also and even after surgery, Doctors were even suprised by how bloody it was. I feel like I still don't know know enough about my tumor, but then again, I feel like this keeps my anxiety from going all the way up too. I guess it's one of those things that I will continue to learn about. I really hope that things will get better. How long has is been since your surgery?


like yourself I was 23 when finally diagnosed, it was presented to me if I didn't have surgery I would not live much longer (tumor within mm of the brain stem), I had surgery a week and a half after diagnoses. At that time my doctor told me they hadn't seen such a large AN in anyone so young in Toronto
Title: Re: When were you diagnosed?
Post by: Kaybo on January 19, 2011, 08:41:36 pm
My brainstem was all the way on the left side of my head - I also was very near death!!  YIKES!  :o  They used 2 pints of that precautionary blood that my BIL & I gave that they "NEVER use"...

K   ;D
*just happy to be alive!*
Title: Re: When were you diagnosed?
Post by: chelsmom on January 19, 2011, 09:34:03 pm
Hi Pxy,

I'm sorry you are feeling so much anxiety about this life and death diagnosis.  I know my daughter Chelsea really does not want to talk too much about it because it stresses her out at times.  She seems to look at it as, "well at least they found it and got me into surgery to take care of it before it was too late"! 

She was like you in that she was young when diagnosed (17) and it was a big one..5.5+cm.  Her surgeons at UCLA also said that they had never seen an AN tumor that size in someone so young.  Her brain stem was being pushed over into the left hemisphere and she had severe hydrocephalus because the tumor had blocked her 4th ventricle.  She was admitted 2 days after meeting the surgeons, 1 week after diagnosis, and was in the hospital/neuro-rehab for 3 months because of every complication possible.  They were able to get approx. 70% of the tumor.  She started 28 FSR-Novalis radiation treatments 3 weeks after being released from the hospital.
Her surgery was also very bloody-which they did not expect-and she was given 2 or 3 units of blood (I don't remember now) during surgery and another unit 2 days after surgery. 

After all of this...the dang thing grew back and in June 2009 she had another surgery that got 95%.  Because of the bleeding during the first go around they admitted her 2 days before the AN surgery and did a cranio-angiogram which cauterized (sp) most of the blood vessel feeding the tumor.  When they did the surgery they said she had very little bleeding.
It took her a couple of months to recover and then she went back to school to start her Junior year.  She is now in her last semester of her Senior year.  The last surgery left her with facial paralysis and she is now facing a nerve graft surgery in the next 3-5 weeks.  Depends on the outcome of some tests at the end of the month.

I am the one that does all the researching about the tumor and its effects on her life (our lives).  Again, she said she would rather me filter it for her and live in denial about other stuff. 

This is hard for anyone to have to educate themselves about but knowledge is power and that power is what will get results.  One of our motto's around here is:
"be a survivor not a victim"!   This does not always work but most times it helps.

I hope you can find some peace that they found your tumor when they did and were able to treat you.  Try not to let this consume you and fill you with anxiety.  You are alive and young and ready to take on the world with an experience that can make you appreciate things so much more than before your diagnosis.

Here's to peace of mind,
Title: Re: When were you diagnosed?
Post by: TP on January 20, 2011, 07:24:07 am
I had been treated for pain in my neck for about a year. Nothing was helping because the neck MRI showed some bone degenerative issues (they didn't see the tumor sitting on top of my neck on my brain stem when they reviewed the MRI). At my age a lot of folks have bone degenerative issues in their neck so they just assumed that is what was causing the pain in my upper neck. In looking back I had eye spasms and fortunately for me I didn't get headaches until the very end. Finally I noticed that my hearing had diminished quit a bit in my left ear.

Went back to my pain doctor and he felt something was not right. Ordered the brain MRI and the next day I was sitting in a neurosurgeons office. My Dr told me I had to have surgery within the month otherwise I could stroke and possibly die. Having strong faith I was not really upset, a little scared but was more ticked off that I had to cancel a trip that I had scheduled a month later. So, I booked my surgery within 3 weeks. Those 3 weeks were not good. I had a lot of pain and major headaches. Fortunately I had some good pills but only had to take them a few weeks once the tumor was removed, Bayer aspirin was the pill of choice for me.

In looking back I am glad I had my surgery quickly, my only regret was not finding this forum until about a year later AFTER my surgery. Therefore I missed out on reading all the good stuff on what to ask your Dr and how to prepare for surgery. I went into surgery really not having a clue.

Title: Re: When were you diagnosed?
Post by: Kathleen_Mc on March 08, 2011, 02:56:45 am
I had been told after the first resection the entire tumor was was a long surgery (15 hours) however when I ended up with a regrowth they doctor supposed he had left only a cell or two (can't blame him for missing a cell or two).... I had the regrowth removed fully as well (hopefully they didn't leave a cell this time)
My first surgery was in 1990, the regrowth was removed a couple of years ago.