Author Topic: Newbie  (Read 11867 times)

lifeofbrian

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Newbie
« on: January 25, 2010, 01:42:42 am »
Hi. I am having a hard time deciding what treatment option to choose, like most of you I'm sure.  I lost my hearing in my right ear years ago and the CT scan showed nothing at the time.  Recently, I have had facial numbness.  I had an MRI and Happy New Year, I have a brain tumor.  It is AN 2.6cm x 2.0cm.  I have lost my hearing forever but I would like to feel my face again :)  . I would like to relieve the pressure that the AN is putting on the facial nerves. If I choose the GK or the CK  from what I have read, the tumor will swell and then maybe reduce in size, maybe.  That wont help the pressure situation.  If I have surgery , who knows what might happen.  I may not be able to feel anything.  If anyone has any thoughts, then please respond.


Thanks!!!

leapyrtwins

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Re: Newbie
« Reply #1 on: January 25, 2010, 06:54:16 am »
Brian -

first of all I recommend you contact the ANA for their informational literature.  It will explain a lot about ANs, your options for treatment, and the possible side-effects of each.  They will also send you a WTT (willing to talk) list that will be very helpful.

A tumor your size generally means you have the option of surgery or radiation, and the choice is a personal one based on what you think is best for you.  The doctors you consult with will also have their opinions which will help you in making your decision. 

Swelling is common with radiation, but in the end the majority of ANs stop growing and die (aka necrosis).  Sometimes the AN doesn't stop growing and die and in that case you'd typically have to have surgery to remove it.  There are other side-effects associated with radiation, just as there are side-effects of surgery.

I had surgery, and while you are right, you don't know what might happen it's a very good option for some.  It was for me.  My only permanent side-effect is SSD (single-sided deafness) and it sounds like you've already got that issue.  My SSD has been helped tremendously by a BAHA; there are other options available.

You need to educate yourself on both types of treatment and then make your decision.  Make sure you consult with doctors who do both surgery and radiation - some do both, some don't - but basically you want a well-rounded medical opinion.  We can give you our thoughts on what you should do, but in the end it's your choice.  We'll support you regardless.

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

cindyj

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Re: Newbie
« Reply #2 on: January 25, 2010, 02:43:30 pm »
Hi, Brian!  Glad you've joined us...are you David's co-worker?  I'm in the Atlanta area also - I sent you a PM with my phone number and info about our next support group meeting, in case you'd like to join us.

I second everything Jan just told you!  The decision making process is the hardest thing, but you're in a great place with a great group to help you along the way.

Hope to perhaps meet you next month,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Jim Scott

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Re: Newbie
« Reply #3 on: January 25, 2010, 02:50:19 pm »
Hello and welcome, Brian ~

I'm sorry you received such a lousy New Years 'present' but I'm glad you found the ANA website, decided to register and post your question.

My advice is simple: read Jan's post (#2) and follow her suggestions. She covered all the possibilities and I can only echo her assertion that we'll support whatever treatment choice you ultimately make.

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.

Doc

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Re: Newbie
« Reply #4 on: January 25, 2010, 03:56:38 pm »
Brian,

All good advice. My two cents, avoid surgery at any cost. I had a left Translab to De-Bulk a nearly 5 cm in diameter AN just so I would be a good candidate for CyberKnife Treatment.  I was hospitalized for three (3) weeks after surgery which included time in rehab.  I completed CK earlier this month on the 3 cm of Tumor that was left behind on my Brain Stem during surgery on July 30th, 2009. It was left due to proximity to the brain stem and nerve involvement which precluded any more being removed via surgery.

Again, one man's opinion here, avoid surgery if you can...I'm in far worse shape since surgery...all the common side-effect...facial paralysis, swallowing difficultly, bum left eye that has required four procedures already...got it all. I've been deaf for a few decades now and left the hospital without a Left Vestibular Nerve. Your Tumor is relatively small and should respond well to CK.  I'm in Atlanta too.  Had my Surgery and CK at Kennestone in Marietta.  I hope you take Cindy up on her offer to join us at our group meeting next month.  Don't be scared by my story, the ride wasn't any fun but the results are certainly better than the alternative.  

I'm probably going to get reprimanded by the Hero's around here for my bluntness...oh well...!

You're in my thoughts Pal.

Take Care!
  ;)
Doc

Always Blogging: www.wonkyhead.com
« Last Edit: January 25, 2010, 03:58:57 pm by Doc B »
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

Pooter

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Re: Newbie
« Reply #5 on: January 25, 2010, 05:18:15 pm »
Okay, I couldn't let that one pass..  Doc's opinion is one person's opionion about surgery.

I sit here as a product of surgery and aside from being SSD, I'm certainly no worse after surgery; in fact I'm better.  I'm not pushing you into deciding surgery versus radiation or vice versa.  You need to come to your own conclusion about treatment choice based on what works for you, comfort level with the doctors that would treat you, and size and location of YOUR tumor.  No two ANs are alike... no two AN patients are alike either..  with that in mind, you come up with the choice of treatment that works for YOU and YOUR TUMOR.  In my opinion, surgery is not something to totally discount for fear of the unknown..  You get that same unknown with radiation as well.

Jan did a good job of going over the various treatment methods available so I won't attempt to say it all again...

Welcome to the forum...

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Doc

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Re: Newbie
« Reply #6 on: January 25, 2010, 06:30:24 pm »
Okay, I couldn't let that one pass..  Doc's opinion is one person's opionion about surgery.

And I was perfectly clear on that point...MY OPINION...only!

Doc
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

DR

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Re: Newbie
« Reply #7 on: January 25, 2010, 06:59:20 pm »
Brian,

I can't (and won't try to) say it any better than Jan, but I wanted to add one thing that helped me immensely during my research - don't be afraid to just walk away for a day or two.  There is so much information and so many widely varying opinions that it is easy to become overwhelmed.  Sometimes the best thing to do for a few days is nothing at all.  I did this and it made a huge difference.

Best wishes,
Dennis
AN right side 12mm x 9mm x 9mm
Middle fossa surgery 11/4/09 at House (Dr. Brackmann/Dr. Schwartz)
Tumor removed, no facial issues, hearing intact!
http://denvstumor.blogspot.com/

"The greatest trick the devil ever pulled was convincing the world he did not exist."

leapyrtwins

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Re: Newbie
« Reply #8 on: January 25, 2010, 11:10:17 pm »
Pooter beat me to it, but I also was going to say Doc B's opinion is just his opinion.  And in all fairness, Doc B did say that in his post.

I had surgery and I've never regretted it one day of my life.  Even though (like Pooter) I am SSD, I made the right choice for me.

I've also never regretted having BAHA surgery after my AN surgery.  In my opinion, it's one of the best things I've done in recent history.  It's not for everyone, but it was definitely a great choice for me.

After doing your research, Brian - go with your gut.

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

jaylogs

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Re: Newbie
« Reply #9 on: January 25, 2010, 11:18:33 pm »
As you can see Brian, everyone has their own personal feelings about which way to go...unfortunately when you talk to the doctors it is the same with them.  I saw two different doctors who suggested doing a trans-lab (guarenteed hearing killer there!) and then another doctor suggested doing middle fossa...he thought my hearing could be saved.  So I went with that doctor knowing that the worst that could happen would be that I would lose my hearing anyways but if there was a chance..well..why not?  In the end, I was lucky and they saved my hearing.  Of course, every person's case will be different...as Jan said, in the end trust your gut and go with what feels right.  And don't ever second guess that decision IF it feels right!  Good luck and please continue to ask questions or just vent!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

sgerrard

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Re: Newbie
« Reply #10 on: January 26, 2010, 12:06:26 am »
Okay, I think we have established that it was just Doc's opinion.   ::)

Brian, I think you are at the point where you need to consult with a surgeon to see what they think about your chances of having facial nerve issues, and also consult with a radiation oncologist to see what they think about the same question. It could go either way, and only a doctor looking at the MRI can give a meaningful assessment of what the chances are in your particular case. It may turn out to be a better prognosis than you think for both treatments.

Also take heed of what Dennis said, and try forgetting this thing for a day or two. It does wonders.

Best wishes as you work it out.

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.

Doc

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Re: Newbie
« Reply #11 on: January 26, 2010, 08:11:14 am »
Brian,

Listen to Steve, he's the smartest guy on the forum; in my opinion!  That Blue Watch-Cap covers a very, very level head!  Pay attention!

Thanks!
  ;)
Doc

AKA: Not so level headed and quite opinionated!
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

moe

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Re: Newbie
« Reply #12 on: January 26, 2010, 09:59:53 am »
Brian,
Welcome to the forum!
Need some more female vibes coming in!!!!!!!
IMO, this forum  is a great place to vent, seek info, advice (yes, do take a break from time to time).
I didn't even join until AFTER all my fun and games- probably would have scared the bejeesuz out of me!

Surgery was my only option. I had a sneaky insidious AN that had been lurking against my brainstem for who knows how long, so my results were not the norm.

We are a great sounding board, so don't be afraid to ask anything. No question or concern is too trivial or silly. You should be able to tackle this thing either way you go. Any brainstem involvement?
If not, then CK,GK or an excellent option, (IMO) ;D
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

moe

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Re: Newbie
« Reply #13 on: January 26, 2010, 10:03:06 am »
lifeofbrian,
Forgot to ask: Are you a Monty Python fan? If so, I'm sure you've seen Life of Brian......
Moe
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Debbi

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Re: Newbie
« Reply #14 on: January 26, 2010, 02:08:20 pm »
Hey Brian-

I see you've already been warmly welcomed by my fellow AN-ers, but I did want to add my welcome.  I know that this is all probably very overwhelming right now - it certainly was for me right after I was diagnosed.  After all, who among us ever thought we would have a brain tumor!!?? 

My best advice - gather information, talk to several medical experts.  The choice between radiation and surgery isn't one to be made lightly, so give yourself time to process the information.

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com