Author Topic: Newly diagnosed – frightened, depressed and anxious  (Read 17542 times)

jtd71465

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #15 on: February 03, 2008, 02:55:29 pm »
Unfortunately even when the percentages are low as a total, they are 100% for the person "lucky" enough to be dealt the bad hand.  So when Steve "rants" that the percentages are low for death during surgery he is correct....but for those few people it's 100%....the same holds true for radiation and cancer...when it happens to you it's 100%.

Educate, educate, educate yourself and once a decision is made regarding treatment have the faith that the decision made is the best for you and your family.

Joe-
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

edhayes

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #16 on: February 03, 2008, 04:14:05 pm »
Thanks so much Steve.
You are 100% right.

Esperanza

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #17 on: February 03, 2008, 05:40:34 pm »
I am so hating having this thing.  The havoc it has already caused to my day to day life and the headache it causes when trying to work out how best to deal with it! 
Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

elise

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #18 on: February 07, 2008, 02:30:24 am »
edhayes (?) i loved the car dealership comparison...and very much identify with marymom BUT have been reading this long enough now to know how complicated the whole thing is....i guess this site was born in the very womb of indecision that this growth thrusts us( back?) into ...
to "Newly diagnosed – frightened,  depressed and anxious"...you probably have way more time than you think you do for a decision....this site has turned decision time into a whole continent...enjoy your plunge / opportunity to learn

Dana

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #19 on: February 07, 2008, 03:05:00 pm »
Reminder to discuss with docs the current size and location of your AN ... BECAUSE you also want to know if one of your options is 'wait and watch' (that is, get periodic MRIs).  Because almost all ANs are very slow growing, 'wait and watch' gives you time to come to the decision that you feel good about.  Of course, I'm assuming here that your symptoms aren't overwhelming -- that is, some people have very bad balance problems, or headaches that sort of 'demand' they do something immediately.

I guess I have to add my two cents about radiation vs microsurgery.  Please note I am biased toward radiation.  But, despite my bias, I think it's fair to say that radiation is less invasive, and the body generally reacts less.  I know some people have unforeseen negative consequences from radiation therapy (you can search this Board for some stories), but in general the radiation simply targets the tumor, whereas microsurgery involves many surrounding parts as well.  Fellow board members such as Steve have researched the actual research, but as someone said, if you're the rare one  that has the aberrant consequence, research becomes meaningless.  On the other hand, it's the best factual input we have to help in our decision-making.

I'm really for including ALL the factors -- your particular medical AN situation, what's important to you, the 'facts' as we best know them, AND your gut feelings.  Try using a decision T-chart to outline the positives and negatives of each option for you.  In general I think it's fair to say that each of us "knows" when we've settled on the plan of action for us, even though the intervening decision-making time can be nerve-wracking.

I guess I'm rambling on because I really do want to tell you my honest perspective, acknowledging at the same time that each of us is different.  My AN was/is 1.6 cm.  I fairly quickly decided to do GammaKnife, based on:  1) The medical fact that this is a size that's treatable with radiation, whereas as it gets larger and larger, microsurgery is required.  2) I've had quite a bit of family experience with brain surgeries.  On the one hand, my mother had one major brain surgery to clip burst aneurysms and then several more minor ones to get a shunt in place.  These saved her life, although she was brain-damaged throughout the rest of her life.  On the other hand, my first husband had another kind of benign brain tumor that intruded on the medula.  He was an older man, 74, but very vibrant and healthy otherwise.  He lived through the surgery, but (in my opinion) the glare of ICU lights, being awoken at all hours, etc. etc. wore him down and he died two months later.  (BTW, the whole issue of lights, awakening at night, etc etc is starting to be studied as bad for health...... DUH, as I say!!).  This is a long way to say that I KNEW I wasn't doing to have microsurgery unless my life depended on it.  My whole gut was saying "no surgery", but I trust you can see why I had that prejudice. 

Don't get me wrong, I trust base skull microsurgeons; it's just not for me.  My local doctor sent me to the team at Univ of Wash in Seattle.  I was satisfied with their team approach - I met with all three of them at once, they respect one another, etc etc.  There are other teams in the Seattle area that are highly respected, but I felt good about this team, so I stayed with them.  They use Gamma Knife, and, although I researched the other radiation options a little, I was satisfied to choose Gamma Knife.  The microsurgeon is actually the one who placed the head rack the day of my treatment; I had 'la-la' drugs so the whole thing was no more painful or uncomfortable than having a tooth filled.  I was a bundle of energy for the three days afterwards when I was on steroids!  I had fatigue and slight headaches during the next month or so.  My symptoms are about the same now as before (some hearing loss right ear, some tinnitus, some balance problems).  Anyway I'm satisfied.  Of course, we have yet to see if radiation kills the tumor, but I can live with that uncertainty.

Well, like Steve said, I feel better.  I know I go on and on, but I thought it might help to hear one story.  Find others here, and continue soul searching.  Be grateful that it's not a life-threatening prognosis, take lots of deep breaths, and keep reading !!  Do try to find others in your NY area from whom you can get opinions of local teams.

Dana
1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.

ppearl214

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #20 on: February 07, 2008, 03:17:15 pm »
Hi Ed,

Well, just wanted to say hi.... as you can see, everyone is awesome at offering experiences and thoughts/inputs.  Great suggestions made by all... and take it easy on the info overload.  It all can be overwhelming some times, so hang tough.

So, anyway....  you know how to find me..... hang in there... and as you can see, what a wonderful bunch of new "friends" you have here. :)

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

edhayes

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #21 on: February 07, 2008, 10:14:05 pm »
Tomorrow is my 1 week anniversary of my diagnosis.
I will say that without question everyone on this message board has helped me immensely.   While I am still somewhat frightened and anxious, I now have a road map and a plan, thanks to all of you.


leapyrtwins

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #22 on: February 07, 2008, 11:57:09 pm »
Ed -

I'm glad you're finding some "relief" here - that's what this forum is all about  ;D

We may all have different opinions about treatment options, physicians, etc., but in the end we're all here to help and support each other.

I'm glad you made it through your first week - diagnosis can be overwhelming.

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

ppearl214

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #23 on: February 10, 2008, 11:09:14 am »
ed, its the 1 wk anniversary of your new journey in life :)  But, know that we are all here for you during this journey.... hang tough! :)

Phyl

Tomorrow is my 1 week anniversary of my diagnosis.
I will say that without question everyone on this message board has helped me immensely.   While I am still somewhat frightened and anxious, I now have a road map and a plan, thanks to all of you.


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

jerseygirl

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #24 on: February 10, 2008, 09:12:34 pm »
Ed,

Sorry for the late reply. I live in NJ and unfortunately, my AN had to be treated last year again, for the second time. You are lucky that your AN is still small. I understand how scared and anxious you are but in the end you will be OK and that is what matters. I visited quite a few doctors in NY and there are so many who have done hundreds of AN surgeries (micro and radio) so that means for anybody who has a small AN and goes in the first time (YOU!), they are very qualified. If you are leaning towards radiation, I have only investigated GK in NY. CK is available somewhere else but not in NY to my knowledge. There are two doctors who do GK I would recommend you speak to:
          Dr. Golfinos of NYU (a neurosurgeon who does both micro and radio) and
          Dr. Isaacson of Columbia Presbyterian (he does only GK and works with Dr. Sisti, a neurosurgeon).

The GK installation at Columbia Presbyterian is the oldest one in NY but you should really make an appointment with both of them and ask a lot of questions. Please, read all you can on radisurgery forum here to educate yourself. Keep us posted!

                    Eve

Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

edhayes

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #25 on: February 11, 2008, 05:47:56 pm »
Columbia and NYU are 2 of the places that I plan on talking to.
NYU has a GREAT reputation.
There is a guy there named Kelly (he could have retired by now) that is an icon in the neurosurgical world.

candtlaw

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #26 on: February 13, 2008, 04:52:12 pm »
Hi edhayes..... have you visited the cyberknife site? There is a wealth of info and some great docs who know docs personally as well that could help steer you to a good ck consult. Personally biased to ck, smallish tumor myself, however did consider the surgery to just get it out! .......... In the end I am pleased so far with my decision.
Cyndi
post CK for AN 1cm 04/30/07


Loving my life today :)

edhayes

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #27 on: February 13, 2008, 07:39:44 pm »
I am also looking at CK.
It seems like a good plan.
Within a few weeks I will have all the facts.
The last guy I spoke to at UVA told me to do nothing for 6 months except - make a plan, decide on a therapy and than do it.

sgerrard

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #28 on: February 16, 2008, 12:23:34 am »
Hi Ed,

I must say, for two weeks in, you are moving along through the process quite nicely. It took me that long just to find this forum.  :)  It sounds like you are onto some good doctors to talk to. I like the advice of that last guy: make a plan, decide on a therapy, and then do it. You can gather and digest only so much information; then you just have to decide and set sail.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

LADavid

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #29 on: February 16, 2008, 08:24:01 pm »
Hi Ed
Not much I can add to the rest of the group.  I understand the frightened, depressed, anxious -- and I'll add a bit angry to that.  When the ENT pointed out my tumor it hit me with a thud.  I opted for surgery after discussing the options with the House Clinic surgeons.  As you will see on this board, everyone's experience differs.  In my case, the surgery was a piece of cake and the hospital recovery was a breeze.  But that was just the start.  Know the full scope of what you're getting into and the associated risks with each option.  I can't remember who said it above -- but my decision for surgery was based on the idea that I wanted to get rid of the thing too.  At almost 60 and knowing there would be other medical issues to deal with in the future, I didn't want to have to deal with one more.
Best wishes.
David 
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

 


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