When were you diagnosed?

[Kaybo]

My brainstem was all the way on the left side of my head - I also was very near death!!  YIKES!    They used 2 pints of that precautionary blood that my BIL & I gave that they "NEVER use"...

K   
*just happy to be alive!*

[chelsmom]

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,
Michelle

[TP]

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.

[Kathleen_Mc]

I had been told after the first resection the entire tumor was removed......it 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.