Author Topic: many questions  (Read 2691 times)

james e

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many questions
« on: January 18, 2010, 06:00:35 pm »
Does House do any radiation?
I have sent my MRIs to them to review. Do they try to "close" you into having the surgery there?
My ENT at Scott and White in Temple Tx (which is a teaching hospital) does both surgery and radiation. His first opinion last month was for the gamma knife. I am meeting with him again on Wednesday. Who else has an ENT that does both procedures, and did you do surgery or radiation? Shed some light here if you can.
I am 60 years old and understand that our brains get physically more tender as we age...easier to damage. Is this true? If this is true, is it a  reason to lean towards the gamma knife rather than having someone probing around my tender old brain?

JimC

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Re: many questions
« Reply #1 on: January 18, 2010, 06:20:24 pm »
Hi James,

My ENT is also a surgeon. I opted for gamma knife, he obliged. My procedure was done 2 1/2 weeks ago, and other than feeling a little fatigued,  I'm doing fine.

Jim
45 year old male. 3.3 cm left side AN. Gamma Knife at Cleveland Clinic on 12/31/09 - Happy New Year!

Sue

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Re: many questions
« Reply #2 on: January 18, 2010, 06:36:37 pm »
Yes, House does do radiation now, to answer that question.   I was 60 when I had my GK.  But that was in Portland, OR.  Best of luck to you.
'
Sue in Vancouver, USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

james e

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Re: many questions
« Reply #3 on: January 18, 2010, 07:37:33 pm »
Thanks to both of you. Sue how was your out come?

JSC

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Re: many questions
« Reply #4 on: January 18, 2010, 07:45:07 pm »
Hi James,
My daughter had gamma knife (Dr. Slattery/Good Samaritan Hospital) at age 21 in Dec. 2007.  It was a very positive experience.  She's doing great 2 yrs. out from GK.  Just had her 2yr. MRI and just sent CD to Dr. Slattery. 
Best of luck to you!
Jan

leapyrtwins

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Re: many questions
« Reply #5 on: January 18, 2010, 08:06:12 pm »
James -

I don't know if House does radiation or not, but their speciality is surgery.

If you are looking to have radiation in California, I'd check out Dr. Chang @ Stanford.  He has an excellent reputation.

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

james e

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Re: many questions
« Reply #6 on: January 18, 2010, 08:25:18 pm »
I don't know what I want!!!!???? I really want to find out if the ENT can do both, how did you and the doc come to the final conclusion.

sgerrard

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Re: many questions
« Reply #7 on: January 18, 2010, 08:50:23 pm »
James,

I understand why you want to find a doctor who does both (actually Dr. Chang, the one Jan mentioned, does do both). But I have to tell you, at the Symposium in Chicago last August, we all watched as a case was presented to a panel of top doctors, and heard Doc A say "this patient should have surgery", and Doc B say "this patient should have radiation."

And when you find the doctor who does both, they will say "you can do surgery or radiation."

There is no medically accepted universal definitive criteria for deciding when a patient should have one or the other. If you qualify for both, as many but not all patients do, you simply have to choose. Which sounds better to you? Many of us end up going with our gut instinct, because we are the ones who will have to live with the decision.

First you should find out if both directions are open to you. If they are, then it is time for a little soul searching. The good news is that they are both good choices, for somewhat different reasons.

And welcome to the forum, too.  ;)

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.

leapyrtwins

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Re: many questions
« Reply #8 on: January 18, 2010, 09:27:15 pm »
James -

Steve is correct.  My neurotologist does both radiation (GK) and surgery - and he did, in fact, give me the choice based on the size and location of my AN at the time of my diagnosis.

You need to weigh all your options, the potential side-effects of each, and then decide what is right for YOU.

There is really no need to travel to California - unless you want to - there should be some very good, very qualified doctors closer to home.  I only mentioned Dr. Chang because you mentioned House and I assumed you wanted to go to California for treatment.  My docs were local and I had a very good outcome.

The ANA has some excellent brochures that can help you make your decision; you should contact them.  We also can give you our two cents worth, but ultimately in the end it's up to you.

I chose surgery because, among other things, I wanted the tumor removed from my head.  I didn't want it "zapped" because I'd have to wait to see if it died and stopped growing. 

I tend to be very impatient  ;)

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

Sue

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Re: many questions
« Reply #9 on: January 19, 2010, 02:11:24 pm »
Hi James,

My outcome was good - the darn thing is dead and no longer growing.  That's the purpose of the GK, and it did it's job.  I still have "symptoms" and these will be my life long companions, I'm sorry to say.  That's just the way it is.  Or "it is what it is", as folks are saying now!   I have tinnitus, hearing loss, and for me, since my trigeminal nerve is doing a tango with the AN blob, facial numbness on the AN side.  Kind of a bummer, but what are ya gonna do?  Count your blessings and move on, is the only option.  :)

Hang in there James,,

Sue in Vancouver, USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

Jim Scott

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Re: many questions
« Reply #10 on: January 19, 2010, 02:32:44 pm »
James ~

I can't imagine anyone wanting AN removal surgery if non-invasive radiation is a viable treatment (it wasn't for me) but then you have the worry that the tumor will regrow.  As fellow moderator Steve noted, on smaller ANs, there simply is no definitive criteria for choosing radiation or surgery.  Doctors will have their preferences and, yes, biases.  However, in the final analysis, the decision is the AN patient's and he/she will have to live with any negative consequence that may occur.  As for age being a factor in avoiding microsurgery, I was a healthy 63 at the time of my debulking surgery and, 90 days later, FSR.  I came through the whole thing just fine.  My age was never mentioned by my doctor as having any relevance to the procedures.  My good health was mentioned.   

The quandary you're in is something every AN patient who has a tumor much below 3 cm has to struggle with.  No one wants to make a 'wrong' choice.  Research and consult doctors but never allow a physician to 'bully' you into one or the other.  As one who underwent the surgery, I can tell you it's a chore but hardly the worst thing I've ever endured, just one of the more serious.  The radiation (FSR) was painless, boring and uneventful - but effective.

Consider this website and the forums as a resource.  We're not doctors but our members have a wealth of practical experience to offer as well as their understanding and support.  We're all eager to share our collective knowledge with you as you struggle with a treatment decision.

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: many questions
« Reply #11 on: January 19, 2010, 05:44:07 pm »
I can't imagine anyone wanting AN removal surgery if non-invasive radiation is a viable treatment (it wasn't for me) but then you have the worry that the tumor will regrow. 

While I respect Jim immensely, I am one who chose surgical removal over non-invasive radiation - for lots and lots of reasons - and I don't think I'm the only member of the Forum who made that choice.  Chances of regrowth with surgical removal are 1 - 2% which is a comfortable "gamble" for me to take. 

To play both sides of this equation, radiation doesn't always mean necrosis (tumor death).  I know more than one person who had radiation and then had to have surgery at a later date.

As I said in my previous post, treatment decisions - if you have them - are personal decisions.  We all make our decision based on certain factors that are important to us. 

Regardless of the decision you ultimately make, James, we are here to support you.

Best,

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