Author Topic: Newly Diagnosed with AN  (Read 8305 times)

Warm_in_MN

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Newly Diagnosed with AN
« on: September 23, 2009, 07:02:13 pm »
Hi Everyone,

You are a great group of inspired, intelligent, and caring people!  I'm so glad to have come across this board.  So, I am coming to you all for support and advice as I decide what to do while traveling this new path my life has taken.  

I've been reading this forum since last Friday when I was diagnosed with a 2.2cm x 1.6cm AN on my right side.  I'm currently experiencing Tinnitus and on occasion some fullness.  My hearing is at a loss of 20dB's and is more in verbal recognition.  So, it could be worse.

Today I saw my MRI while meeting with my Dr (E.N.T.).  He was leaning more toward surgery because of my age (44) and the size of the growth.  But, he didn't rule out a GK.  He said 4 out of 5 patients he sees opt for either a GK or WW.  But, typically they are older in age and the growths are smaller.  He said it's not a pressing thing to take care of but I should make a decision on a form of treatment in the next couple months.  One of his greatest concerns regarding radiation is the unknown future of the effects of the radiation on the human body.  He said that during the 1960's radiation was used in acne treatment and it was later found to create thyroid cancer.

He's recommended having the Retrosigmoid approach which he said will give me a 50% chance of keeping my hearing. What about GK or CK for preserving hearing?  What effects can come using GK or CK vs. microsurgery?  I'm weighing the risks vs. long term disability effects since I hope to be around another 30-40 years.  I realize that personal comfort has a lot to do in the decision as well.  I'd love to hear from those of you who will share why you made your decision. Did you check out all the options?

I can't thank you enough!

Best wishes in your current situations.

Bob




« Last Edit: September 23, 2009, 07:19:13 pm by Warm_in_MN »
AN 2.2cm x 1.6cm right side.  Diagnosed 9/09.  CyberKnife treatment at St. Joseph's Hospital St. Paul MN 11/09.  Single Sided Deaf (SSD) Living with Trigeminal Neuralgia since 06/13

sgerrard

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Re: Newly Diagnosed with AN
« Reply #1 on: September 23, 2009, 11:57:29 pm »
Hi Bob,

Welcome aboard. I think you will find people here are happy to answer any questions and generally provide support as you take your own AN journey.

I'm glad to hear your doctor is supportive of radiation treatment as an option. I do want to comment on the reference to 1960's radiation treatment. Many doctors, including ENTs, are not aware that modern stereotactic radiation is quite different from the "wall of radiation", or whole brain radiotherapy, they used back then, and still use today for some brain cancers. With GK or CK, only the tumor itself receives a high dose of radiation, with the rest of your head getting 1/100 of that or less. This causes cancer so rarely that no one can really pin down the percentage, it is too small to measure.

GK and CK can cause tumor swelling, which sometimes is a nuisance, and sometimes can be medically significant. The chance of hearing preservation is usually given as 65-75%, with the usual "it all depends" caveat tacked on the end. Various other symptoms such as dizziness can also linger around for a while. And yes, you still have a dead tumor inside you, versus having it removed by surgery. Those are the kind of considerations that I think you should be most concerned about.

Enjoy your research phase. :)

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.

Tumbleweed

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Re: Newly Diagnosed with AN
« Reply #2 on: September 24, 2009, 01:11:32 am »
Hi, Bob:

Here are links to two threads that contain some of the information you are requesting (please see my posts under these topics):
http://anausa.org/forum/index.php?topic=6670.0
http://anausa.org/forum/index.php?topic=6657.0

I trust you'll find these helpful in answering some of your questions. Please follow up with any other questions you may have, and we'll all try to help you.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

leapyrtwins

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Re: Newly Diagnosed with AN
« Reply #3 on: September 24, 2009, 07:30:22 am »
Hi, Bob  ;D

As you say, personal comfort has a lot to do with your treatment decision.

I had the choice of radiation (GK) or surgery - my neurotologist does both.  I waivered for a little while and I originally told my doc that there was "NO way I could have surgery  :o " but in the end that's exactly what I did.

I chose surgery for many reasons, but first and foremost was because I wanted the AN removed from my head.  I'm a very impatient, very black & white type of person - and I knew if I chose radiation I couldn't handle the stress of not knowing whether my AN was growing or dying (this is just me - not everyone).  This was also the reason I chose to have surgery 6 weeks after my diagnosis - I knew that watching & waiting wasn't for me either.

I also wanted to find out what side-effects my treatment would cause up front - not wait for 12 to 18 months to see what I might encounter.  If I was going to lose my hearing, I wanted to know that right away.  If I was going to have eye issues or facial nerve damage, I wanted to know that right away.  I'm the type who likes to know what I'm facing and deal with it - when it came to my AN, I wanted it gone and I wanted to move on with the rest of my life.

But I want to reinforce that this is me and my personality and my choice.  It's good to ask others what they did and find out why, but ultimately you need to do what is right for you.  This is one of the things my neurotologist stressed to me.  I was hoping he'd make the choice for me - in fact, I tried everything I could think of to get him to make the choice - but he refused.  He clearly felt it was my decision and he was absolutely right.

Read everything you can find, consult with as many doctors as you feel you need to, weigh the pros and cons of each treatment, and then make your decision.  Lots of people, including me, go with their "gut" in the end; you just know when it's right.  Not to put any pressure on you, but I should mention that making your treatment decision may be one of the hardest part of your AN journey.  But, you'll get there.

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

Warm_in_MN

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Re: Newly Diagnosed with AN
« Reply #4 on: September 24, 2009, 09:26:35 pm »
Thank you all for your replies. I hope to return the favor to others someday as I'm moving forward out of treatment.

I'm sure I'll be back in touch with more Q's.  I am meeting with at least one neurosurgeon and have sent my scans to the Cyberknife team in the Twin Cities.  I'm probably head down to the Mayo Clinic as well.  I'll keep you all posted.

Bob 
AN 2.2cm x 1.6cm right side.  Diagnosed 9/09.  CyberKnife treatment at St. Joseph's Hospital St. Paul MN 11/09.  Single Sided Deaf (SSD) Living with Trigeminal Neuralgia since 06/13

imnocleaver

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Re: Newly Diagnosed with AN
« Reply #5 on: September 25, 2009, 03:33:06 pm »
Hey Bob,

I'm pretty new here, too, and being just a few weeks shy of 40, with every intent of having another 40 or more years after, I'm also trying to weigh all the options from both a short- and long-term perspective.  As the type of person who finds it incredibly difficult to even decide what to eat for dinner, I'm finding that deciding what to do in terms of my head (dig it out?  zap it?  let it ride?) darn near impossible.

Sorry you had to join us here, but welcome, and best of luck in your decision making process...in the end, I'm sure you'll make the right one, which will ultimately be the one with which you're most comfortable.

Michelle
5mm left IAC AN dx 7/13/09
January 2010 MRI showed no measurable growth
W&W!

loose screws (tightened)

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Re: Newly Diagnosed with AN
« Reply #6 on: September 25, 2009, 04:03:42 pm »
Hey Bob; I was just diaganosed 4 days ago. I had a day and a half of vertigo then my hearing in my right ear started going bad 2 weeks later. Your tumor is bigger then mine so I don't know if the same possible surgeries  apply. From the information I'm reading the
retrosigmiod surgery has a 60% chance of hearing loss. There's another surgery called the middle fossa that has a 40% chance of loosing hearing. 20% better odds? As everyone has told me if you have time take it slow and it will all work itself out. Just keep asking questions I'll do the same. You may ask a question that I hadn't even thought about that may be important to me and others at our stage.
We'll figure it out.
--Mike
47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/

CHD63

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Re: Newly Diagnosed with AN
« Reply #7 on: September 26, 2009, 10:22:01 am »
Bob .....

Welcome to this Forum.  So glad you found us.

My tumor was almost exactly the same size yours is when I was diagnosed.  Because I had had an MRI 13 months before with no hint of an AN, mine fell into the category of a rare rapidly growing AN.  Thus, I had very little time in which to explore my options.  However, like Jan, I really did not like the idea of the thing staying in my head following GK or CK so I rather quickly dismissed those options.  Also, I am one of those unlucky ones who had radium treatments following an adenoidectomy in the mid-1950s so I was skittish about more radiation to my head.

I had 80% of my hearing left pre-surgery and I now have 20%, which is also boosted with a traditional hearing aid.  I had retrosigmoid surgery at Duke University with absolutely no regrets.

It sounds like you are doing your research and exploring your options.  Keep us posted on the progress and ask away.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

rm516

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Re: Newly Diagnosed with AN
« Reply #8 on: September 26, 2009, 01:43:18 pm »
Bob,

It is very difficult to make decision, especially when it's your body / skull.
6 months ago, i too had incidental finding via CT scan. Later MRI showed 2.7Cm2.6 cm growth in CP angle. With no symptoms except minor hearing loss & ear fullness.
 
MRI pictures shows very little IC involvement. My Hearing is also fine (15 dB's & 88 % speech discrimination)
Doctor said , if I was 65+ years old, he will consider GK but asked me to consider retrosigmoid surgery now.
Recent MRI shows no growth with a possibility of Meningioma. I decided to W&W..
Why rush if things are not deteriorating .. :)

Raj
Diagnosed AN in 2008,  3.2 cm CPA round, retrosigmoid surgery performed by Dr. M. Sisti, Columbia Pres.Hospital  NY, in Jan 2013, After surgery no major issues, Hearing retained (>50% ). However, 2 YRs post surgery MRI shows a further decrease in the size of residual AN! No GK or any therapy needed.

ppearl214

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Re: Newly Diagnosed with AN
« Reply #9 on: September 28, 2009, 06:00:56 am »
Hi Bob and welcome. Well, you've certainly been given some terrific info to help with your research, so not much more for me to add with that.  I can say that I'm respectful of your dr's notation that its not emergent and to take this time to do your homework, which I can see you are most certainly doing.  If the info becomes too overwhelming, please... take a step back, let all the info sink it... then continue with the research.  Having multiple options is great... yet, can be overwhelming.  In the end, go with your gut once you have all of your info..... guts usually have a good idea of which direction to take.

Wanted to say hello, welcome to the forums and we're here to help (as you've already witnessed).

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: Newly Diagnosed with AN
« Reply #10 on: September 28, 2009, 07:50:54 am »
I decided to W&W..
Why rush if things are not deteriorating .. :)

Bob -

I just wanted to say that this is a very good point by Raj.  If your symptoms aren't too debilitating and/or your AN isn't growing, you had afford to watch & wait.  I'm not the kind who could handle that personality-wise, but lots of AN patients do and it works very well for them.  Once again, it's a personal choice.

However, if you do decide to watch & wait and your MRI shows growth, you experience an increase in symptoms, or your current symptoms worsen - you should commence treatment.

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

SML

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Re: Newly Diagnosed with AN
« Reply #11 on: September 28, 2009, 03:17:18 pm »
Hi Bob,

My AN was 2.5 cm and cystic. The neurosurgeon told me he felt surgery was the best option for me, but if I really wanted to go the radiation route, I could. I wanted to check out all options, so I made an appointment to see a radiologist. After reviewing my charts and taking my age (50) into consideration, she (in no uncertain terms) told me surgery was the best option for me. I was already having issues with the right side of my face (tingling and a tight/full feeling) and my hearing was just about gone. My taste was off and I had been dealing with the balance issue and dizziness for about a year at that time. She said she could do the fractionated stereotactic radiotherapy, but even if the radiation worked, the overall size of the tumor would not shrink by much (if at all) and furthermore the fluid inside may even increase thus making the tumor larger and intensifying the symptoms I already had. Also, from what I was told there was only about 10 years of data history on the fractionated stereotactic radiotherapy (FSR).  My only option (IMO) was to have the surgery which would give me the best chance to alleviate some of the symptoms I was already having. I have no regrets with my choice.

I wish you, and all the other newbies, well in your AN journey.

Scarlett
SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.

Vivian B.

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Re: Newly Diagnosed with AN
« Reply #12 on: September 29, 2009, 08:27:44 pm »
Hi Bob,

Welcome to the forum. You will feel very comfortable here as we all have experiened many of the same symptoms and feelings. Decisions are not easy to make. Steve explained it very well. That's exactly what my Neurosurgeon told me about radiation when I saw him today. He also advised me to stay on W & W for another 6 months. He said, at best it will grow 1 mm which won't make any difference in the outcome of the treatment. However, personally, it could be nerve racking as you know that there is something that has yet to be treated and you are still walking around with it. But on the other hand if no treatment is required as of yet,  why have it? It could be a hard decision but everyone comes to terms with it slowly. Good luck on your journey.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Warm_in_MN

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Re: Newly Diagnosed with AN
« Reply #13 on: September 29, 2009, 08:49:25 pm »
Thank you all for the wonderful advice and shared experiences.  I have an appointment with a fes Drs.  One is a neurosurgeon who does only microsurgeries, another Dr. at the Mayo Clinic who does both radiation (GK) and microsurgery, and I'm waiting to hear from a CK office in St. Paul about if I'm a candidate.  

I'd be willing to do W&W but I am concerned that I may get additional symptoms??  I wish I knew at what rate it was growing.  

Has anyone's tinnitus improved after treatment?  What steps have some of you taken to live with it better?  In the grand scheme of things, it's not the worst thing to have to live with.

I'll keep you all posted.

Thanks again everyone.

Bob
AN 2.2cm x 1.6cm right side.  Diagnosed 9/09.  CyberKnife treatment at St. Joseph's Hospital St. Paul MN 11/09.  Single Sided Deaf (SSD) Living with Trigeminal Neuralgia since 06/13

sgerrard

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Re: Newly Diagnosed with AN
« Reply #14 on: September 30, 2009, 12:28:34 am »
What steps have some of you taken to live with it better?

Darn, I just noticed my tinnitus again.  :P

Seriously, one of the strategies is just not to think about it - which also means not even talking about it. There are no sounds there, so you might as well think about something else. For many, doing that regularly reduces the impact of tinnitus to something very manageable - in time, of course, like everything else with ANs. These days, I rarely notice it, except when someone brings it up. :)

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.

 


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