Tuesday, June 5, 2007

Doctor Doctor!

So, I saw the uber-neurosurgeon. He was very nice, intelligent, and concerned, the nicest of the specialists I have seen so far.

Just to back track... this is the kind of tumor I have...

So, I had the ct scan. And, I have results... The tumor/mass is this (copied from the ABTA ):

"Epidermoid cyst/tumor:

These cysts are more common than dermoid cysts. They are usually benign, but they will slowly recur if not removed completely. Unlike the dermoid variety, they occur more frequently in the brain than in the spine.

Epidermoid cysts are most common in middle-aged adults. The most common sites in the brain for these cysts are the cerebellopontine angle (see figure 3) and the pituitary area.

The treatment of choice is surgical removal. "

Dr. B, confirmed what I pretty much already knew... it is all about location, location, location.

This epidermoid or chordoma tumor is in the worst possible spot it could be in, very near the nerves and vessels that supply the ear and entire right face/throat area.

Surgery would be extensive and difficult.

There would be a high percentage of a chance of losing hearing in my right ear, and facial paralysis, as well as other posibble difficulties.

This is also the same prognosis if the tumor grows significantly.

His recommendation is this: Have the repeat 'closed' MRI, under sedation, in early December at the MS Center. Come visit him afterward with that new MRI, and the old ones, from April, that he reviewed today.

Dr. B. will then compare them and see if the tumor is behaving as expected, which is being very slow in growth and non aggressive.

If yes, then we will keep watching. If it's growth is extremely minute, less than a 1/2 a millimeter a year, it could be some 20-30 years or never before I have symptoms.

If it is slow moving, it will be a wait and watch for the rest of my life.

If the tumor has changed in size or appearance, in six months, or at any point it changes, then we will discuss options then.

All of which are not pretty. Which sucks. Chemo or radiation or other injection therapies will not work on this type of bony tumor. <sigh>

And, makes me feel like I have a time bomb in my head, well, because I do.

So, how am I taking this?

I am relieved and frustrated all at the same time.

I was hoping for a more concrete resolution. And, that is just not happening. I was hoping for a plan with a beginning and an end. Not a beginning and many options... but, it is what it is.

Relieved that I do not have to have my head shaved and brain cut into any time soon. However, the possibility still looms. Ugh.

It will take me a day or two to get my head around this, I guess. I feel like Cin's picture of the woman trying to hang on to the brain again! LOL

Thank you for all your prayers and support. I do feel you with me.

be well,
Dawn

31 comments:

gazker said...

We are with you Dear Dawn, we are. The biggest hug ever, Gaz......... Ps, getting ready with that helecopter of party people, for when you are on that cruise!
xx

pharmolo said...

It is not a nice situation, Dawn, but it could be worse. However, we are here to listen and offer as much support as possible and as needed. Be well.

sugarsweet056 said...

Got you in my prayers my dear friend. It could be a lot worse, but then we were hoping for better. {{{ }}}
Stay strong & hang in there...an Angel will look over you.
God bless,
Sugar

deshelestraci said...

Goodness.  It would have to be the most frustrating diagnosis.  Just sending up prayers.  
Traci

coelha said...

I'm glad you found a nice and caring doctor!  I'm hoping that is will stay non-aggressive and it will be something that won't effect you, EVER--keeping you in my prayers.  Be relieved to know it could have been worse--stay positive.  Try and relax the rest of this week now!!  Hugs - Julie

nana0014 said...

I'm sorry you didn't get any more definate answers. I am at least very happy that you don't have to do the surgery right now or else. We'll pray nothing changes and you'll continue on for that 20-30 years.
Take care, Chrissie

tenyearnap said...

But was the doc HOT? Jeesh, Dawn, why do you keep leaving out the important stuff ;-)

Seriously though, this is all very weird news. No closure. I'm sorry. But now you can act as crazy as you want and blame it on a tumor. Oh yeah, I'd milk THAT for all it was worth. Throw a red sock in with your man's whites..."I have a tumor, ya know!" Ketchup on the pancakes. Stalk that Bon Jovi guy you are so crazy about. Let you toenails grow reeeeeeaaally looooong.

Pick me up, Gaz. Let's go visit that crazy Tumor Woman! She rocks!!

I wish it had been better news but glad you are not having your head cut into right now.
Big Hugs,
Cin

nightmaremom said...

I'm sorry the results were not more concrete... good news is no head shaving :)  I am sending good thoughts and prayers...
hugs
d

tendernoggle said...

I forget, was the tumor causing pain or problems before you found out it was a tumor??? If so...won't it still? Or is there meds for it? I AM glad they don't intend on cutting into your head...
Take careand God bless,
love ya,
carlene

sdoscher458 said...

Oh dear, I can understand that you want resolution. At the same time, please remember that they are coming up with new things all the time. Possibly they will find something that can be injected into it to make it shrink? I will keep praying for cures...keeping you and yours in mine as well....Sandi

justplainbill said...

<<<relieved and frustrated >>>
Dawn, what an apt description. I often feel that way when I walk out of the doctor's office.
The indecisive decisions are tough to handle but that is what we must do.
Good luck and prayers, again, Bill

hsauls said...

I'm sure you want to just get it OUT... but... wow... if it could just be there and not really hurt you....  can you live with that?
hmmm...
*hugs*
heather

klconard1 said...

Let us all be praying there is a miracle of shrinking in the six months instead of any growth!
loving you
karyl

sangrialel said...

I willpray that it is VERY slow growing and you never develop problems with it>  Linda

jckfrstross said...

Dawn you are in my thoughts and prayers:) wonder why they want to wait till Dec?

Deb

rdautumnsage said...

The wait and see game is always the hardest. But if it should never grow much at all and give you symptoms, I could live with the wait. I know this is a difficult thing to hear and as you said wrap your head around. I'm here for you hon. Most of all I'm keeping you in my prayers on the smoke you never really have to worry about this tumor ever again. (Hugs) Indigo

eml625 said...

Praying for no growth on this ..... Your in my thoughts.
Hugs,
Ellen

sunnyside46 said...

oh, my friend....I dont' know what to say, but I care and I am there as much as I can be
Marti

cherry2sweet2eat said...

im sorry you have to go through this its ruff i know. hang in there i hope things get better for you.

toonguykc said...

I blame my rampant beer consumption for me thinking you were having THE surgery today (Tuesday).  I thought you wrote that once.  Anyway....I'm still hoping and thinking of you!

XX
Russ

psychfun said...

A colleague of mine had a brain tumor near her ear & had the surgery by some specialist in CA. If you want me to get the info just let me know. She is back teaching now.

jibaro6543 said...

please know that you are in my constant thoughts and prayers...I believe in miracles and perhaps this is something you will never have to worry about in your lifetime......keep positive and know that there are many people pulling for you!
-Ellie

thebaabee said...

Wow!!  I will continue to keep you in my prayers. Praying for everything the doctor wants.  Hugs, Lu

plittle said...

You know me and silly superstitions - aw, heck, I've got my fingers crossed for you.

And my toes.

Because...

...

you know...

...

don't make me say it, woman.
-Paul
http://journals.aol.ca/plittle/AuroraWalkingVacation/

astoriasand said...

Oh Dear I am so sorry to read of this news on catching up on my alerts.I will be saying prayers thousandfold for you.Try not to worry, though I know it is easy for people to say these things,but worry only makes things worse, it never heals thing. You Take Care God Bless you.Kath
Astoriasand http://journals.aol.co.uk/astoriaand/MYSIMPLERHYMES

emabecmar said...

I shall be keeping you in my prayers. (((((((((hugs))))))))))
Cindy

ksgal3133 said...

Its easy to say don't worry it will work out when your not in your situation. Just know your in  my prayers and I'm here if you need me.

Hugs,
Gretchen

gehi6 said...

I have just read about the tumour they have found.  My first cousin was diagnosed with a tumour, very slow growing in her brain which was causing seizures.  They said it was inoperable, but she has been doing very well and it has not changed much at all for quite a number of years.  She has even been able to resume her practice as a dentist, but not completely full time. I am hoping for you to at least have good luck with the progresss of your tumour.  I am so sorry though, because I know you will not be free of worry.  Something to get used to I guess.  Gerry

cacklinrosie101 said...

Sheesh, Dawn, nothing like non-answers and wait and see.  I'll be praying that everything goes as the doctor predicts and that it doesn't grow at all.  Hang in there...HUGS  Chris

erarein63 said...

I just got a chance to show David your MRI and he said it's difficult to tell anything from your picture.  But, he did say the same thing your neuro-surgeon said (which by the way I'm glad you saw one instead of ENT) that is could never change or cause you any more problems.  I hope and pray for you that is the case.  I know you are trying not to be too anxious and dwell on all this, but I also know it's got to be difficult to do just that.  Hang in there sweetie!  De ;)

canmbs said...

---------LOVE YOU--------------

All of us
Chris, Mickey, Brandon, Jordyn and Ryan