ANA Discussion Forum

Post-Treatment => Post-Treatment => Topic started by: ppearl214 on November 22, 2006, 01:27:41 pm

Title: too early for happy tears????
Post by: ppearl214 on November 22, 2006, 01:27:41 pm

Well, this past weekend at the AN NE brunch, was talking to jcinma (Jane) and shared with her the situation about my headaches (combo from AN and Chiari 1)..... so, she tells me about "exertion headaches".  She had the same symptoms that I currently have... had no clue there was an actual "name" to it.  so, I did my online research....

Well, with all going on, I called BI to my radio-oncologist, Dr. Mehatevan.... so, he says instead of waiting until Feb for my next MRI, lets get one done pronto.  I tell him about the MRI center near me that has been doing the MRI's (other than the ones done at BI for CK).  So, he has my primary care dr book the MRI for... 9:30pm last night!

So, I get the MRI done (with and without contrast), grab the films and 2 burnt CD's (one for BW for the Chiari, one for BI for Dr. M).... they tell me the "wet read" will be available in the am.

So, I bring home the films... and there are 3 really gorgeous views of my AN.... well.... are my eyes deceiving me?  Do I see the center area kinda "shadowed" and dark?  Naw... can't be... it's only 7-1/2 mos post CK!

So, I go the my primary dr this am to discuss the exertion headaches and how we can get them in line with meds and such... she orders other tests for me to rule out a few issues... of course, I brought the films with me.... so, I show her the 3 really good pics of the AN.....now, she knows her stuff and is on the ball.... so, she gets the nurse and has her contact the MRI center for the wet read.... was in our hands within 5 minutes....

so...what does the report say, you ask?

"There is a left proximal internal auditory canal now more rim enhancing mass, measuring 8.5 x 6mm, slightly smaller than prior study.  Central lucency (no, not LUNACY!) is perhaps the result of interval radio surgical treatment versus interval mild cystic change"

So, now I'm thinking... necrosis? Maybe?

So, off to the post office to expedite the CD to BI.  Dr. M will be in Monday to view it, as well as the wet read........

So, your thoughts? Necrosis?  Lit up from the radiation?  Too early to tell? Wait for dr on Monday?  Pour a stiff drink and chill out?  Thoughts?

Phyl

Title: Re: too early for happy tears????
Post by: ppearl214 on November 22, 2006, 01:53:16 pm

ADDENDUM:

MRI CONCLUSION:

"Interval presumed mild cystic central change in the left proximal IAC Vestibular Schwannoma, with some mild interval decrease in size as descrbed"

Title: Re: too early for happy tears????
Post by: Dealy on November 22, 2006, 02:03:59 pm

Boy-that was fast. I was typing a reply indicating that necrosis might be in progress. Sounds like it is to me. Wow and to think I am experiencing the same thing as you and I am onlycoming up on 5 months out. My next MRI is in 5 weeks. I posted under Radiosurgery this morn on results of my doctors visit yesterday. Have a feeling I will be on Steroids again by Monday. Good News to hear about your AN. I am apprehensive what my next MRI will show-but hey one always has the hope for the best. GOOD NEWS-LUCKy YOu.

Title: Re: too early for happy tears????
Post by: Gennysmom on November 22, 2006, 05:42:19 pm

Yea Phyl!!!!  You need some good news!!!!!!!!!  I do indeed hope that it is necrosis.  It does sound promising.  I think that at the very least, pour that drink!!!!!!!!!  Chilling out is always good, especially right before a holiday!!!!!

Title: Re: too early for happy tears????
Post by: Sue on November 22, 2006, 06:38:04 pm

Champaign for everyone!!  Woohoo.  Hope it is all good news, Phyl.

Sue in Vancouver

Title: Re: too early for happy tears????
Post by: Obita on November 23, 2006, 07:42:45 am

Phyllis:

HAPPYTHANKSGIVINGTUMORISDYING!!!!!!!!

Kathy

Title: Re: too early for happy tears????
Post by: krbonner on November 23, 2006, 07:53:40 am

That all sounds positive to me, Phyl!  Death to tumors!!

Happy Thanksgiving!

Katie

Title: Re: too early for happy tears????
Post by: ppearl214 on November 23, 2006, 09:10:05 am

cautiously optimistic folks... incidcators are there on report and films... why is it that we always seem to have to wait through weekends (and this one being a longgggggg weekend for me) to get answers????

I'm feeling good news coming!  I'm feeling it so much I can taste it!

Keep those fingers crossed!

Happy Thanksgiving all!!!!!!!!!!!!!

Phyl

Title: Re: too early for happy tears????
Post by: Larry on November 23, 2006, 03:27:46 pm

Phyl,

WOO HOO

i'M SURE IT'S "GUNNU BE GOOD"


laz

Title: Re: too early for happy tears????
Post by: ppearl214 on November 23, 2006, 06:10:20 pm

Quote from: Larry on November 23, 2006, 03:27:46 pm

Phyl,

WOO HOO

i'M SURE IT'S "GUNNU BE GOOD"


laz

I hope so Laz... I hope so.. .and sending you MAJOR huggles that you are feeling ok.

xoxo
Phyl

Title: Re: too early for happy tears????
Post by: marystro on November 23, 2006, 10:47:51 pm

Phyl - that must be IT!  I have a good feeling that it will be good news on Monday!!!

Early celebration in order!!!!!!!!!!!!

(http://i108.photobucket.com/albums/n26/nathangammons/cat_congratulations_lc.gif)

Title: Re: too early for happy tears????
Post by: Battyp on November 24, 2006, 12:54:21 am

Geesh, I break my puter and see what happy news I miss out on!  Doing a happy dance to celebrate and keeping all my toes crossed you get the good news esp after such a long weekend! :-*

Title: Re: too early for happy tears????
Post by: Patti UT on November 28, 2006, 03:12:36 am

Hi Phil,
  What a scare, So happy the news was good. No more bad news allowed!!!

Patti Ut

Title: Re: too early for happy tears????
Post by: Obita on November 28, 2006, 06:21:31 am

Did you get the official report Phyllis??  KO

Title: Re: too early for happy tears????
Post by: matti on November 28, 2006, 10:12:49 am

Hi Phyl - I've got fingers, toes and eyes crossed, anxiously awaiting the good news!!

it's the magical healing farts from princess Beanie ;)

hugs,
Cheryl

Title: Re: too early for happy tears????
Post by: Captain Deb on November 29, 2006, 12:36:27 pm

Quote from: Larry on November 23, 2006, 03:27:46 pm

Phyl,

WOO HOO

i'M SURE IT'S "GUNNU BE GOOD"


laz

Gosh Larry, you're not doing what I think you're doing, are you? :o

Capt Deb

Title: Re: too early for happy tears????
Post by: Captain Deb on November 29, 2006, 12:40:04 pm

(http://i108.photobucket.com/albums/n26/nathangammons/blue_star_of_david_lc.gif)(http://i108.photobucket.com/albums/n26/nathangammons/50s_girl_dancing_lc.gif)(http://i108.photobucket.com/albums/n26/nathangammons/blue_star_of_david_lc.gif)
 Capt Deb (doing the "Jewish Dance of Joy" in my poodle skirt!!!)

Title: Re: too early for happy tears????
Post by: ppearl214 on November 30, 2006, 12:29:14 pm

Quote from: Captain Deb on November 29, 2006, 12:40:04 pm

(http://i108.photobucket.com/albums/n26/nathangammons/blue_star_of_david_lc.gif)(http://i108.photobucket.com/albums/n26/nathangammons/50s_girl_dancing_lc.gif)(http://i108.photobucket.com/albums/n26/nathangammons/blue_star_of_david_lc.gif)
 Capt Deb (doing the "Jewish Dance of Joy" in my poodle skirt!!!)

Do you know just how much I lurve you, Capt't? LOL!   And to the rest of you.. thank you so much for the wishes.

Ok, here goes...

UPDATE:

Well, the films are definately showing something going on... dr doesn't want to use the term "necrosis" BUT, did comment that "the CK radiation is definately working! Just too soon to say more"  UGH!!!!!!!!!!!!!!!!!!!!!!!  He also confirmed it shrunk.  YAY!  So, as of today...... it's looking positive.... I tried to get him to say "so, you are seeing beginning stages of necrosis? and he would not say it".... I think he's just playing it safe.  Dang dr's and malpractice insurance! Double UGH!!!!!!  BUT, knowing he said "the CK radiation is definately working as there are indicators of it AND it has gotten smaller".... I think extra mug o' grogs are in order for everyone!

I'm seeing the CK team on Monday for some headache issues... so, will tell them what a great job they did, the films and me are living proof and heck no... no way am I questioning my decision... as neither should you!

Stay healthy folks... onward and upward to wellness! :)

Phyl

Title: Re: too early for happy tears????
Post by: HeadCase2 on November 30, 2006, 03:15:00 pm

Congratulations Phyl!  It's time to open the champagne!
(http://i93.photobucket.com/albums/l46/HeadCase2/thcork_screw_lw.gif)
Rob

Title: Re: too early for happy tears????
Post by: Larry on November 30, 2006, 08:04:07 pm

Oh Girly,

You have given so much of your love, time and huggles (you should patent that) that we are all rapt that the good news is heading your way.

Without wanting to be repetitive

WOO HOO

Laz

Title: Re: too early for happy tears????
Post by: flier58 on November 30, 2006, 08:16:17 pm

Phyl,
It is  a wonderful news.  Congrats.
Flier58

Title: Re: too early for happy tears????
Post by: krbonner on December 01, 2006, 07:20:37 am

 ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D

Katie

Title: Re: too early for happy tears????
Post by: ppearl214 on December 06, 2006, 09:17:28 am

Ok, here goes! OFFICIALLY!!!!!!!!!!!!

The CK is working! We have beginning stage of tumor death!!!!!!!!!!!

[/color] [/b]

(Captn', you and your chants of Die, booger, Die have paid off!)


HECK YA! I saw Dr. Mehatvan (btw, I am his "AN CK BI Poster Child!). He walked in all smiles..... the films show confirmation and I just got the best wedding/holiday present ever. My folks were in tears when I told them. As you all know, I lost a sister to an astrocytoma (malignant brain tumor) and my family wanted me to have micro-surgery on my AN.... but I opted for CK and so dang thrilled I did. I am walking proof that radio-surgery does work, that this booger is dying and my life is moving on as best as it can.

time to celebrate folks. It's official and the booger is dying.... Thank you all SO very much for the love, support, mug o' grog, huggles, shoulders I have soaked with tears, good ears that are now deaf from me talking into, etc..... I just can't thank you all enough!

xo
Phyl

Title: Re: too early for happy tears????
Post by: matti on December 06, 2006, 10:38:55 am

Up on my feet doing the snoopy happy dance and singing "another AN bites the dust"  YEAH!!!!!!!!!!!!!!!!!!!!!!

hugs and :-*
Cheryl

Title: Re: too early for happy tears????
Post by: ppearl214 on December 06, 2006, 10:40:59 am

Quote from: matti on December 06, 2006, 10:38:55 am

Up on my feet doing the snoopy happy dance and singing "another AN bites the dust"  YEAH!!!!!!!!!!!!!!!!!!!!!!

hugs and :-*
Cheryl

Me likey snoopy happy dance!!!!!  I'm sure Beanie and Cosmo are doing it as well!

Thanks Cheryl... for ALL of your love, support, your good ear, your shoulder.... well, you know...

xoxoxo to you and your spouse and most of all, belly rubs to Cosmo!
Phyl

Title: Re: too early for happy tears????
Post by: Obita on December 06, 2006, 02:59:44 pm

Dear Mrs. Cheeky Bloke:

The Irish are dancing in Minnesota fer ya!!   :o    Congrats!!

Kathy

Title: Re: too early for happy tears????
Post by: ppearl214 on December 07, 2006, 08:46:24 am

*blush*

thank you all SO very much for the support and love... I really appreciate it.. now that the booger is dying, time to start 2007 on a good note!  YAY!

Thanks again!
Phyl

Title: Re: too early for happy tears????
Post by: Larry on December 07, 2006, 03:11:09 pm

Hey girly,

The woo hoo'ing is getting boring but

WOO HOO!


LAZ