Author Topic: Newly diagnosed  (Read 3849 times)

Meshell201

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Newly diagnosed
« on: March 09, 2012, 01:32:48 pm »
In February 2012 I was diagnosed with a right sided AN that is 0.5x0.4x0.4cm (very small compared to some of the posts I've seen on this site).  The symptoms I have are a pulsating roaring wind like noise in my right ear, slight pressure in the head and my ear feeling full.  I do get a little lightheaded at times and recently the right side of my face seemed a little numb for 3 days (almost like after having dental work and the affects of the novaine were wearing off...that kind of feeling).  I have been referred to the University of Virginia, Dr. Hashisaki.  My appointment is not for another 6  weeks.  I've been searching the internet reading everything that I can so that I know what questions to ask.  I'm really concerned with the outcomes I've read on different web-sites when the actual surgery is done...so I've been reading up on Gamma Knife.  Since my tumor is so small, I believe Gamma Knife would be an option, but many of the web-sites say this is for "older" people.  Although I'm 48 years old...I don't consider myself "older"....you're only as old as you feel, right?!  :)  I'd love to hear your thoughts and from people that have gone through Gamma Knife.  thank you!

leapyrtwins

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Re: Newly diagnosed
« Reply #1 on: March 12, 2012, 07:52:02 am »
GK isn't just an option for "older" people and with a small AN like yours it should be an option for you.

I say "should" because location is also a factor when it comes to radiation.

If you've only seen a doc who does surgery - that is what he/she will most likely recommend.  If you haven't consulted with a doc who uses radiation to treat ANs, I suggest that you do. 

In the meantime, if you haven't already, contact the ANA for their informational brochures.  They are very well written and you'll find them helpful.

Good luck,

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

sunfish

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Re: Newly diagnosed
« Reply #2 on: March 12, 2012, 10:32:09 am »
I have a friend who is in his 20s, and he had GK, with great results.  So it's not just for "old" people.  I was 50 years young when I had CK, and so far it has stopped my tumor dead in its tracks.
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

Meshell201

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Re: Newly diagnosed
« Reply #3 on: March 12, 2012, 02:45:32 pm »
Thank you for the information.  I will request an information package.  I have an appointment on 11 April at the University of Virginia -- they do have the Gamma Knife available, so I will find out more then. I'm so glad I found this site, it offers a lot of great information and insight into what I call the "unknown".  Before I was diagnosed, I had never heard of an AN.  The posts have helped me a great deal in understanding what I could face down the road, my options and what questions I need to ask when I go see the specialist in April.  Thank you for your replies!

Jim Scott

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Re: Newly diagnosed
« Reply #4 on: March 12, 2012, 02:45:41 pm »
Hi - and welcome ~

Many doctors shy away from offering radiation for folks that are under 60 or so based on outmoded thinking.  The one-time 'conventional wisdom' regarding any AN-related radiation treatment was that a possible future medical condition might require radiation and the patient would have reached or be near their safe lifetime limit, taking more radiation treatments off the table at that point.  However, the radiation used in AN treatment is very localized and unless a patient developed some form of brain cancer that required direct radiation of the skull, this should not be an issue. 

Another concern was that radiating the AN had the possibility of causing the benign tumor to become cancerous and metastasize.  Because Gamma Knife has been in use since 1988 with no conclusive evidence of GK patients radiated ANs becoming cancerous, this concern is pretty much baseless at this point.  However, many doctors, probably preferring to err on the side of caution (and avoid a potential lawsuit) will try to steer an AN patient away from any form of radiation treatment if they are not yet eligible for Social Security retirement benefits.  :)

I was 63 when I underwent AN debulking surgery that 'cut down' my large (4.5 cm) AN and severed it's blood supply.  Following a plan set up by my neurosurgeon and a radiation oncologist, I underwent 26 fractionated radiation treatments  ('FSR') 90 days post-op.  The surgery was completely successful and I suffered no complications.  The FSR was uneventful - no side effects - and also successful, causing necrosis in the remaining tumor within two years post-radiation.  Today, six years hence, I'm doing great.  As a side note, at no time did my neurosurgeon or radiation oncologist mention any danger of my radiated AN becoming cancerous..  I did ask about it and they said it wasn't a concern.  Of course, I was in my early 60's at the time which may have been a factor in their sanguine attitude but still, I'm certain these two doctors, highly skilled and very experienced with AN cases (the neurosurgeon had 3 decades of AN experience) would not have proceeded had they held any real concerns about the long-term safety of the FSR treatment.  Of course, this is anecdotal but I thought it might be illuminating for you as you deal with how to treat your newly-discovered AN. 

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.

YACEAS

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Re: Newly diagnosed
« Reply #5 on: March 12, 2012, 03:52:03 pm »
Meshell,

Be sure to check out the Cyberknife (CK).  It's a whole different experience from the Gamma Knife (GK).

Y
Yet Another Cyberknife Experience At Stanford
Diagnosed with right-side 2.2 cm AN on Jan 16, 2012.  Stanford cyberknife from Feb 6 to Feb 10, 2012.

Meshell201

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Re: Newly diagnosed
« Reply #6 on: March 12, 2012, 04:28:50 pm »
Some how my first reply to you didn't post, so I'm trying it again........Thank you Mr. Scott for the information.  From what I have read on line, I find the information to be somewhat dated (1990's - 2000).  Many of the articles that I have read mention the possibility of a radiated benign tumor turning malignant (less than 1% chance), but other articles say that they don't have enough evidence to support it....like you said, it's baseless.  With the advancement in medical technology, one can only hope that the use of the Gamma Knife is an excellent option for trying to manage/shrink the tumor without traditional surgery.  So many people on this site have had succesful, you yourself are a testament to that.  I plan to ask my doctor at UVA this question in April when I see him, along with many other questions that I have written down.  Since my tumor is so small (.5cm), I'm not sure if he'll want to watch and wait or go forward with a treatment.  My hearing is actually pretty good in my right ear.  One doctor has told me that he was surprised that I presented with problems so early, many times the tumor is much larger before someone even notices the symptoms, so I'm thankful that I presented early -- I can only assume that it will make a difference down the road and hopeful that it perhaps mean that I would have a good chance of saving some hearing.  I do have one more question, I have noticed that pressing on the right side of my throat (I believe it's the caratoid artery) seems to quiet the pulsating wind like noise....did you experience that or have you heard of anyone experiencing it?  It's on my list of questions to ask.  Again, thank you for the information -- it means so much to hear from people that have gone through this.  I don't feel like I'm walking into this without any knowledge at all of what to expect now.   
« Last Edit: March 12, 2012, 06:00:57 pm by Meshell201 »

leapyrtwins

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Re: Newly diagnosed
« Reply #7 on: March 15, 2012, 09:04:02 pm »
Before I was diagnosed, I had never heard of an AN. 

You aren't alone in this - I had no clue what an AN was until I was diagnosed; and I was 45 1/2.

We are truly a rare, unique group of people!

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

Meshell201

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Re: Newly diagnosed
« Reply #8 on: March 16, 2012, 11:58:16 am »
From what I've read, we are rare and unique...but the support from this site helps so much!  thank you!