Author Topic: Info. from appointment and blues....  (Read 4182 times)

Kaybo

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Re: Info. from appointment and blues....
« Reply #15 on: August 21, 2008, 08:50:55 am »
Jan~
Until I got on this forum, I NEVER thought about that they "didn't get it all" - in 12 years!!!!!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: Info. from appointment and blues....
« Reply #16 on: August 21, 2008, 09:32:06 am »
Kaybo -

well don't start thinking it now!

We have enough things keeping us up at night - kids, posting on the forum, etc.  ;)

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: Info. from appointment and blues....
« Reply #17 on: August 21, 2008, 10:54:05 am »
I may be strange, but I don't worry that my surgeons "got it all".  They said they did, and although I know no doc is 100% infallible, I take confidence in their confidence.

Jan:

I agree.  Of course, in my case, I had the surgery plus the radiation and my MRI shows the positive results (necrosis).  However, with the possibility of AN re-growth following surgery being in the low single digits, I hardly think post-op AN surgical patients need fret over the possibility of re-growth.  I'm sure some do, but if so, that becomes a choice with little basis in fact to support the angst.  I think your attitude is sound.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: Info. from appointment and blues....
« Reply #18 on: August 21, 2008, 09:58:16 pm »
I think your attitude is sound.

Thanks, Jim.  Right back at ya!  :)

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

JulieE

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Re: Info. from appointment and blues....
« Reply #19 on: August 25, 2008, 04:37:55 pm »
I was going to keep my nose out of things, but here I am, and opinionated - of course.  I respectfully disagree with those that state "maybe you shouldn't watch and wait."  It may be true that watching and waiting might not be for you, but I would encourage you to try a little harder.  Many of the people responding did not have the option as the size was to large to wait, and I'm in that catagory, but surgery and/or FSR might still leave uncertainty, so it is imparative (where is the spell Checker?)  that you develop the coping mechanisms spoke of earlier.  I strongly recommend the book "The Places That Scare You - a Guide to Fearlessness in Difficult Times" by Pema Chodron, prayer, this forum, etc. to turn to to help you get through.  I do agree strongly with the recommendation someone else gave that said to get a second and maybe even a third opinion.  One thing I find curious, and I don't want to get your hopes up here - so pass by your Dr(s), but rarely (like 4%) these tumors spontaneously die!  They theorize that the cause might be blood supply getting cut off: you already mentioned your Dr. putting this forward as a possibility.  This is one of the goals to debulking and other treatments: to cut the blood supply.  You won't know if this is a possibilty unless you watch & wait, hence risk getting treatment redundantly.  Forgive me if I am out of bounds here, but I think you can do this.  I don't mean to diminish the anguish waiting might cause, and whatever you decide, we'll be here for you. 
Julie

AMD

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Re: Info. from appointment and blues....
« Reply #20 on: August 25, 2008, 07:03:51 pm »
Esperanza,

I think everyone here has very valid points and gives you a lot of things to think about.  I am sorry to read that you are feeling so down, and I sure hope you come across something to brighten things up for you :)  We all know what having an AN can make you feel like. As far as my cheap two cents, I think it would put you more at ease if you did see one or two more docs, that specialize in AN's, and see what they say, just hear them out.  In matters that upset you, it is good to have different opinions from experts so you can see different options.  Only you know what will make things better for you.  Don't give up and don't be afraid to voice your feelings and concerns to your doctors. Tell them how you are feeling.  There are thousands of people on this forum and thousands of ways to go about treating your AN and/or symptoms.  For me, watch/wait and radiation (which were both an option) didn't get me to the place I needed to be, both physically and mentally, so I chose to go forth with planning surgery.  Just take your time to think about everything.  Weigh pros and cons, and I am sure things will be better for your shortly. Wishing you the best...

Amy D. :)
Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.

ppearl214

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Re: Info. from appointment and blues....
« Reply #21 on: August 25, 2008, 07:29:38 pm »
Hi Esperanza and all,

FYI... a little birdie told me that the next copy of the ANA Newsletter is going to have an article about depression and our journeys... I am thrilled that the ANA is recognizing that depression can affect us and that they are noting it in the newsletter. I'll be interested to see what it has to say.... my hope is that it is very helpful with having AN's in our lives and coping with it.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Re: Info. from appointment and blues....
« Reply #22 on: August 25, 2008, 09:19:56 pm »
I was going to keep my nose out of things, but here I am, and opinionated - of course.  I respectfully disagree with those that state "maybe you shouldn't watch and wait."

Julie E -

never be "afraid" to voice your opinion on the forum.  Part of what we're all about is different opinions, different AN journeys, different advice, etc.  There are no right or wrong decisions here as far as treatment goes - unless the size and/or location of the AN precludes certain options. 

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

JulieE

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Re: Info. from appointment and blues....
« Reply #23 on: August 25, 2008, 09:40:08 pm »
Thanks Jan,  I just want to be balanced - in opinion as well as literally!
Jules

robynabc

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Re: Info. from appointment and blues....
« Reply #24 on: August 26, 2008, 10:05:21 pm »
Hi Sweetie,

I know you are having a hard time and I am sorry.  I think that W and W has got to be difficult.  I would have a hard time with that too because you just don't know what is going to happen.  You know what,  and take it for what it is worth,  if it were me I would get a second opinion.  In my very humble opinion,  your doctor does seem to be saying some strange things about how your tinnitus is going to get better and not that it won't but how does he know this for sure.  one thing I know about some of these symptoms is how unpredictable they are.  That was one of the first things our doctor said.  Everyone's story is different.  There is no normal for AN"s.   My son had a gigantic tumor and had no hearing loss at all and then I see someone with a 5 mm one with no hearing.   

Good Luck.  Don't be too hard on yourself. 


BTW,  did I see a Spelling Nazi on the Board?  LOL.   

18 yr Son 4.5+ CM AN  surgery 6-27-07 at CU in Denver.Drs Lillihei and Jenkins. Complete removal on facial nerve with no paralysis at all. Paralized vocal cord that is causing swallowing & voice issues.  SSD. Went to a movie theater 11 days after surgery. Great Doctors!! That is most important.