ANA Discussion Forum

Treatment Options => Radiation / Radiosurgery => Topic started by: RamAir on June 01, 2005, 11:06:15 am

Title: My story...3cm AN.
Post by: RamAir on June 01, 2005, 11:06:15 am

I haven't posted here in several years, but thought it relevant to retell my story for the "newly diagnosed".

About five years ago (1999), I was admitted to the hospital due to severe head pain.  The doctors quarantined me, thinking I had bacterial meningitis (eek).  After five days of poking and prodding, they discovered I had a raging sinus infection which invaded my skull.  "Oh yeah," as I was told at 10:00 pm by an idiot intern, "we also noticed a good sized tumor on your brain stem...have a good night, we'll tell you more in the morning."  This was, what I thought, the beginning of the end for the ripe old age of 28!!!

The doctors informed me that the head pain and the tumor were unrelated.  They were actually surprised that I had not suffered balance and hearing problems since the tumor was slightly over 3 cm.  Anyway, they scheduled me to be transferred to Robert Wood Johnson Hospital in New Brunswick, NJ for immediate brain surgery.  Ummm...Not!  I explained to them that no one was cutting into my head without allowing me to "do my homework" first.  Of course, the lead neurosurgeon (arrogant old SOB that he was) balked at the idea that I didn't trust him...but so be it.  Over the next two weeks, I soon discovered that my diagnosis was not a death sentence.   You must understand, I had four doctors standing over my bed telling me that the only viable option was brain surgery.  They casually told me that I should not worry, even though I would be left completely deaf in one ear, have moderate facial paralysis, lose the ability to blink in one eye, most likely have slurred speech, balance problems, and chronic headaches, I would be able to qualify for permanent disability since working for a living would probably be quite difficult.:-\ special!

I soon discovered the technological wonder known as LINAC,  which stands for Linear Accelerator.  One can think of it as the next evolution of the Gamma Knife.  Instead of using a radioactive source with a shutter, like an X-ray, it uses a Particle Beam Accelerator to generate highly focused electrons (radiation) with pinpoint accuracy.  Over the next few days, I scheduled appointments with five neurologists, to hear what they had to say on my condition.  First off, they all agreed that I was able to mask my balance issues due to my age and physical condition.  I was actively involved in several sports and my reflexes were compensating for the "wobble".  But, they felt brain surgery was the only "real" course of action I should be considering.  When I asked them about GK or LINAC, they all said basically the same thing, "It doesn't work", or, "It's not really tried and tested", or "It might cause cancer...since it's know". Long story short, I was force fed a load of crap by every one of them.  Since they were or were affiliated with traditional brain surgeons, the only thing I could figure was they were defending their profession and turf by misleading my decision.  In essence, since they couldn't do it, they dismissed the option.  In hindsight, it really disgusts me, now that I think back on the experience. >:(

This leads me to my first visit with Doctor "G.L.", who at the time, was pioneering the treatment at Staten Island University Hospital.  He explained to me in simple terms how LINAC preserves the function of the facial nerve, and in his experience, saves most if not all of hearing.  After much discussion, he explained that by using LINAC in a Fractionated Stereotactic Radiosurgery approach, where the dosage is divided up into several treatments, he has seen nearly a perfect recovery rate.  I of course said, "Doc...perfect??" He admitted that while there can be no such thing as "perfect", so far, his successes were overwhelmingly more than his failures.  I respected his candor and continued the questioning.  He explained that the beauty of LINAC FSR is that if the treatments have not reduced or destroyed the tumor as expected, further treatments can be conducted.  Radiosurgery does not rule out having future surgery, if necessary.  This is not true with traditional surgery, as once the tumor is removed, any nerve damage caused by the extraction is usually permanent (or at least not repairable by further surgeries). ANs are considered "sticky" tumors, and removing them tends to rip healthy nerve tissue away. Additionally, physical removal is risky and will require a prolonged recovery (heck, it is brain surgery!).  However, with LINAC, there is a very good chance that I should not have any real issues.

I decided to go for it!  ;D Three weeks later, I began.  I was scheduled for five treatments, over the course of two and one half weeks.  More treatments would be prescribed, but only if necessary. The FSR required a mouth piece to be fashioned. It was similar to the "goop" used to make a bite impression in the dentists office...yummy!  Since the machine, which looks like an open MRI, rotates around the patient and tumor, the patient is required to locate himself in X,Y,Z axis 0,0,0 every time.  In the "old days" this required screwing in a head frame to your skull.  However, with the mouth piece (or face mask) approach, you can go home after the treatments.  

Over the next two weeks, I proceeded to be treated. The actual treatments lasted only 2 minutes or so.  It took about fifteen minutes to get in position on the table.  The machine buzzed a bit like a smoke alarm...quite relaxing actually. I drove myself to and from the hospital each day. The only post treatment issues I had were a slight (100 degree F) fever the next day, which was easily handled by two Tylenol.  I continued playing hockey and going to work during the problems whatsoever.  All in all, not much to talk about.  I felt as good as always with no funny affects.

I believe my first MRI was 3 months later.  The tumor had swelled a bit but all looked fine.  My hearing had worsened slightly, but this was normal.  At 6 months, my hearing returned to "normal" (which for me, was a 30 dB shift in the mid-range frequencies) and the swelling had decreased.  The tumor was back to it's original size of about 3 cm.  At 1 year, the tumor began to shrink...a great sign.  My hearing remained the same, as did my balance.  At year two, the tumor had shrunk some more, and my hearing improved.  It's worthwhile to note that my hearing in the effected ear was never that bad to begin with.  As the audiologist told my after I had my first test, "You have the hearing of a normal 28 year old, slightly decreased in one ear in the mid frequencies."  The other ear was above average for my age.  I then told her I had a 3 cm AN, which she refused to believe.  She tested me again...for giggles.  ;) I was more than happy to play along (LOL). Years three through five proved uneventful, as the tumor became darker on the MRI...a good sign it was scar tissue.

I'm now at year 5 and have stopped getting annual MRIs.  The tumor has not regrown or changed in size.  My hearing has stabilized, and my balance is about the same.  I occasionally have to catch myself, usually when I'm tired, but for the most part I have no long term issues.  I truly consider myself lucky, since it was detected prior to suffering long term issues.  The doctors are amazed that I had it at all since I was so young.  Again, I consider myself many people get to say they are in a group as exclusive as us (10 in a million chance).  

I guess my point is this...being diagnosed is not the end of the world.  Research your options, and take the source of the information into consideration.  The beauty of today's treatments is they can be done more than once.  While traditional surgery has it's value, in my opinion, it should be the last option, after GK and LINAC have been exhausted. I've met and spoken to too many people that had small tumors removed through surgery who now have permanent disabilities. I only wish I could have talked to them before they jumped at the first neurosurgeon they spoke to...a real shame.  You can always have surgery if radiation fails.  GK has been around over 40 years, so it has been perfected.  LINAC is newer, but is/can be a bit more focused.  Surgery is the oldest, but for some, is the only choice.  Just make sure you realize a doctor is still human, and some will defend their turf till the end even though the treatment they are recommending may not be the best for's a fact of life.  Yeah they should have the best interest of their patients in mind, but guess what...if they consistently send the customer to the "guy down the street with the better technology", they won't have a job for long.  Most insurance companies jump for joy at the GK/LINAC treatment since it's a fraction of the cost of traditional surgery.  I know mine did (Aetna/US Healthcare).  I paid my $100 deductible and never looked back. Keep this in mind. Traditional brain surgery costs a fortune.  The long term disabling effects can get rather expensive as well. For that reason, insurance companies tend to approve radiation therapy without much push back.

I'm posting my story to try and ease the anguish you may be feeling.  If you would like to contact me, please feel free to do so.  I am by no means an expert, but I am a survivor who decided to take matters into his own hands.  I've never regretted that I did...

Good luck...and stay positive.  You could have been diagnosed with much worse ;D
Title: Re: My story...3cm AN.
Post by: Russ on June 03, 2005, 01:54:24 pm
  Congratulations on having successful 'therapy' of a borderline sized AN. I hope the necrosis continues!!
  The NSs sound like most of the 'cut happy' people they sometimes are. As if we were Thanksgiving turkeys...
  Are you a Dr. Gil Lederman success story? He doesn't report the failures...of which there are plenty!
  Best wishes to you! My first AN came out surgically at 27 ( 1977 ) and I did lose hearing and balance and had facial paralysis for a while. That was mild, thank goodness.
Title: Re: My story...3cm AN.
Post by: RamAir on August 09, 2005, 09:34:36 am
Title: Re: My story...3cm AN.
Post by: Crazycat on November 14, 2006, 08:48:10 pm
Bumped to front. Interesting story. Should be read by everyone. It was originally posted on June 1, 2005.  This should not be covered over in the archive.

Title: Re: My story...3cm AN.
Post by: matti on November 14, 2006, 09:17:18 pm
WOW! Very interesting. Wish RamAir would check back in with us, would love to see how things are doing.

Thank you Paul.

Title: Re: My story...3cm AN.
Post by: Crazycat on November 14, 2006, 10:30:43 pm
Fantastic information Bruce and thanks!!

  My father went through the prostate experience as well several years ago. He also lucked out with state of the art treatment. He had the hormone therapy with the radiation. His PSA shot down to below zero before they even administered the radiation just with the hormone therapy.
This was five years ago. He's 79 now and in excellent shape! Back to normal.
  On the other hand I know of several guys in thier 40s that have had thier proststes entirely removed and have suffered terribly from it.  Seems that the younger a person is when afflicted with this, the more virulent and aggressive the disease is.

   RamAir's story is unique. To think that many of us in this forum with growths up to 3cm could have fared better with radiation is as disheartening as it is inspiriing. I mean, are these doctors so interested in plying their trade that they're deliberately giving people a bum steer? Or maybe, or most likely, the preference of surgery for anything over 2cm is just a little too conservative but with the best intentions?

   Whatever the case, the bottom line is that it worked for RamAir and there's something to be said for that. If it worked for him it would most likely work for a lot of other people as well!

Title: Re: My story...3cm AN.
Post by: Palace on November 15, 2006, 06:21:50 am
RE:  YoYo Syndrome is what I call it!


I can't thank you enough for your story.  I was almost "talked into" cancelling my Cyberknife dates by my family doctor in turn, consulting with my ENT.......JUST YESTERDAY.  I just read your story and it is four in the morning!  (the next day)  This "YoYou Syndrome" of OK, I've decided.......I'm sure, I will go with this or that........then you learn more data putting a monkey rench in your plans, is staggering and mind-boggling within itself.  I have made my decision and I'm sticking with it.  Granted, I'm taking the conservative route but, even my ENT finally agreed with me once he heard how much research I had done and how much I knew by now.  He fully respected my decision.  I came home yesterday to a message from the family doctor saying, "I will call you later to tell you the details but, I spoke with your ENT and we both agreed on the same thing.........meaning instead of CK, going with the traditional surgery."  All that can make you crazy.  I called the ENT and he was nice to take my call while patients were waiting.  THAT SETTLES IT FOR ME........especially after reading your story.  Now, here is one last snag.  I think I'm getting a cold.  Will they take me on the 27th for my Ct scan and then the rad appts. to follow directly that week.  *(or will they put me off until March of next year at their next opening)  Does anyone know the answer to that one?  If I have a cold can I keep my CK appointments.  My cold should be much better by them if indeed it is coming on.  I have a sore throat, sneezing and I'm taking Airborne as a helper or preventative.

Again.........thank you for your story and thanks to the other AN helpers,

Title: Re: My story...3cm AN.
Post by: Derek on November 15, 2006, 06:39:10 am
WOW! Very interesting. Wish RamAir would check back in with us, would love to see how things are doing.

Thank you Paul.


Hi Cheryl...

I note that 'RamAir' posted yesterday in the thread ' A newby with millions of questions' and is apparently maintaining fantastic progress.

I personally found that the original post of 'RamAir' was an inspiration to those who are fortunate enough to have the opportunity to decide what treatment options are available to them and graphically outlines compelling advice as to how important it is not to totally rely upon the advice of those experts who specialise only in the microsurgery aspect of AN treatment. The fundamental moral of the advice is to do your own in-depth research and make your own ultimate decision as to what you consider to be the best method of treatment for you.

 Having decided that radiosurgery (GK) will be my ultimate choice  of treatment, when and IF that time arrives, I too would welcome further input from 'RamAir' and anyone else who has a similar success story having selected radiosurgery as their treatment option.


Title: Re: My story...3cm AN.
Post by: RamAir on November 15, 2006, 08:15:47 am
Funny story:  Since being diagnosed, I no longer believe in coincidence.  While I'm by no means a bible-carrying fanatic, I do believe destiny is guided by a higher power..if we would only listen.

So, what is my point.  Simple.  I decided to doubt the doctors I spoke to and ultimately choose LINAC just felt "right". Everyone around me said to trust the doctors...they wouldn't steer you wrong. Even my wife urged me to follow their guidance. But, deep down, it didn't feel right.  For each of us...there is a right decision.  What that is, I can't answer.  But ultimately, it's the choice that not only stands up to rigorous scrutiny, countless hours of research, and discussions (both for and against) with both must feel RIGHT to you.  Listen to that little voice of doubt.  I don't know where it comes from...but it has never steered me wrong.  If you take the time to listen to yours, my guess is it won't steer you wrong either.  It's your's your greatest possession.  You owe it to yourself...your family...your kids. Don't trust it with anyone you don't feel comfortable with.  

Medicine is forced to improve because of people like us...those not willing to accept anything but the best. ;D

As always, I'm here for anyone who wants to talk.  Don't hesitate to contact me at:

Looking forward to my 8th anniversary ;)


Title: Re: My story...3cm AN.
Post by: Derek on November 15, 2006, 08:30:17 am
Hi there 'RamAir'...

Great to hear from you and thanks for your inspirational posts. Its always good to hear from folks like yourself who have been on the long AN 'journey' which they have successfully concluded via their own endeavours, zeal and tenacity and, most importantly, who are prepared to pass on their wisdom and sound advice for the benefit of others.

Best Regards

Title: Re: My story...3cm AN.
Post by: matti on November 15, 2006, 10:10:23 am
RamAir - Well ask you shall receive!! I had posted yesterday that I was hoping you would check back in with us. Thank you!!

I too believe that I am here today because I listened to my "gut" feelings. I went from doctor to doctor for almost 2 years looking for a diagnosis. Each time I left their offices, something kept telling me it wasn't right and I moved on to the next. I finally found my diagnosis in a dentist's chair. From the first moment I met my surgeons, it felt right and I felt at peace, finally.

Throughout my life, my "gut " feeling or intuition has never steered me wrong.

I am so happy to hear that you are doing great and congratulations on the arrival of Bella Rose. Beautiful Italian name!!! (I'm Italian ;))

Please continue to post, you are very inspirational!!!

Title: Re: My story...3cm AN.
Post by: Crazycat on November 15, 2006, 01:20:32 pm
Hi RamAir!

      So good to see that you're still there for us! Talk about inspirational posts!!

You were talking about "coincidence" vs. synchronicity. I'm Italian as well - 100%. Your email.... is Lupiano your last name? I know that lupo translates to "wolf". It's funny because my email is: "cyberwolf" - going back to my internet, multiplayer gaming days. I once worked with a woman with the last name "Lupachino" which translates to "little wolf". Also,  my grandmother's name was Ann and I had a great aunt named Rose! (Ha! I caught myself....I was going to say "great grey aunt" as in great white shark)
Oh wow!!!! :D ;D


Title: Re: My story...3cm AN.
Post by: Jim Scott on November 15, 2006, 03:04:33 pm

Allow me to join the ranks of those who appreciate your account of how you decided to manage the way you would have your AN treated. 

With a 4.5 cm AN, I had no option but microsurgery.  However, I was fortunate enough to find a neurosurgeon who, although a 'veteran' of performing AN surgery (30 years) was open to new - and more efficacious - methods.  He opted to use the retrosigmoid approach to 'de-bulk' the tumor and, during surgery, employed nerve monitoring to preserve my facial nerve functions, which had been basically unaffected, pre-surgery.   Although the hearing in my AN-affected ear had been lost, my surgeon still has hopes that at least some hearing may yet return in time.  We'll see.  Three months after my surgery, I entered 'Stage 2' of my treatment plan and underwent 26 LINAC 'fractionalized' radiation sessions (spread out over 5 weeks) . My 63-year-old, otherwise healthy body handled both the surgery and the radiation quite well and I'm doing fine, today.  You would probably have no idea I was staggering, fatigued and, ultimately, on an operating table having my skull cut open less than six months ago. 

I'll have a new 'updated' MRI scan at the end of the year (another 6 weeks) and that will constitute my 'baseline'.   Semi-annual MRI scans will follow for the next few years, and if nothing shows up, that will decrease to an annual MRI in about 3 years or so.  Both my neurosurgeon and my radiation oncologist are very pleased with my outcome to date and confident that the tumor has been basically rendered dead, while I'm enjoying the rest of my life.  :)

Just thought you would enjoy reading a similar success story and in the process, I might offer some hope to 'newbies' that being diagnosed with an AN in this era of advanced treatments is, as you stated, far from 'the end of the world', whether you are 28 or 63.


Title: Re: My story...3cm AN.
Post by: Captain Deb on November 15, 2006, 03:31:11 pm
Thanks for bumping this'n to the top Crazy, and thanks for updating us, Ram. Last night I watched a new show called "3 lbs" and it is about brain sugeons starring one of my ffavorite actors, Stanly Tucci (another Italian!) There was this young girl with a brain tumor, not an AN, and a radiation oncologist got ahold of her mother and talked to her about Gamma Knife, and of course the surgeon was outraged. The cute younger doc finally talked her into surgery again, and boy did it put the GK in a bad light.  However--it's just TV. Sort of reflected the egotism of your basic brain surgeon, as opposed to the radiation oncologist who was referred to as a "glorified technician."


Capt Deb 8)
Title: Re: My story...3cm AN.
Post by: RamAir on November 15, 2006, 06:47:32 pm
Paul...Yes. My last name is Lupiano. And yes, I'm 100% Italian (Avellino as a matter of fact).  The closest translation I could get is "Quiet Little Wolf."   Cyberwolf...Lupiano...this board...more coincidence??? ::)

Anyway, I'm glad I can add a bit of levity to an otherwise traumatic event.  In hindsight...I think being diagnosed with my AN was the best thing that ever happened to.  Funny how things turn out, huh? ;D
Title: Re: My story...3cm AN.
Post by: ppearl214 on November 15, 2006, 09:39:49 pm
Amazing story.. thank you so much for sharing this with us all... truly inspriational.. and welcome back!

Title: Re: My story...3cm AN.
Post by: RamAir on May 01, 2007, 12:31:07 pm
Well, another 6 months have passed.  Thankfully, I'm still not experiencing any issues.  I still have the occasional "bad balance day", but all in all, I feel like the luckiest man in the world! ;D

Talk to you all soon...stay strong!

Title: Re: My story...3cm AN.
Post by: er on May 02, 2007, 12:54:40 am
Thank You for your story
I wish I could have done the same
But if mine comes back I will look into the treatment. I do not want to go through the same thing again.
Title: Re: My story...3cm AN.
Post by: yardtick on July 05, 2007, 06:48:22 pm
This is off topic here, but my husband's family is from Teggiano and his Aunt married a wonderful man from Avellino.  By the way I have AN located on my facial nerve.  I've had one surgery and awaiting another.  Your journey is amazing. 
Anne Marie
Title: Re: My story...3cm AN.
Post by: Sue on July 05, 2007, 08:46:05 pm
This was an interesting story from RamAir and I applaud his remarkable ability to look his doctors in th eye and tell thanks.  Not many of us would do that with the news that brain surgery is imminent! I'm sure most of us would just whimper and let them do whatever to us!  There is a lesson in this, that's for sure.  I've learned a lot this last year or so...from my own experiences and from others.   

Thanks for bringing this story back in the limelight.

Sue in Vancouver USA
Title: Re: My story...3cm AN.
Post by: RamAir on November 08, 2007, 09:38:03 am
Hello everyone...

Just a quick update.

Recently had a full hearing test.  My "good" ear continues to compensate for my "bad" ear.  The tests actually showed that the hearing on the good side is better than it was last test.  My other ear is still holding.  I'm still showing a mild loss in the mid and high frequencies, but amazingly, it has not changed in all this time.  Staying in shape has helped with the balance all in all, no real issues.

On a personal note, I ran for City Councilman since last we spoke.  While I was unsuccessful, my AN has given me new strength to try anything (at least once). 

Looking forward to the next 6 months.  Keep up the faith...tomorrow will be here before you know it. ;D

Title: Re: My story...3cm AN.
Post by: ppearl214 on November 08, 2007, 01:06:30 pm
Hi RamAir and glad you checked in with your update. I'm glad to hear that you are doing well (and sorry to hear about your political run) but sounds like you are on the right track for wellness... hang in there... and you are right about tomorrow.

good to see you,
Title: Re: My story...3cm AN.
Post by: RamAir on August 24, 2009, 01:00:56 pm
Hello all...been a couple of years since last I updated... :o

Anyway, this November will be 10 years post-op since my LINAC treatment.

I am happy to say...all is well. There has been no further growth, no further hearing loss, no balance problems...overall...everything is the same.  I still feel blessed to have my AN (yeah...go figure) since it opened my eyes to a whole new world.  It's still amazing how something so tragic (at the time) can now be a point a laughter.

For all of you considering know where I stand on the issue. 

As always, if you'd like to door is always open.   ;D
Title: Re: My story...3cm AN.
Post by: sgerrard on August 24, 2009, 08:18:46 pm
I love this post, and have not seen it before. I hope it is okay with you to move it to Radiation. A 10 year story is worth having around for those looking at radiation treatment.

I mostly like the great attitude. I hope I feel this way in 8 more years. :)

Title: Re: My story...3cm AN.
Post by: leapyrtwins on August 24, 2009, 08:20:35 pm
Ram -

thanks for returning to update us on your status.

Lots who posted a long time ago never check back in - leaving lots of us to wonder what the latest developments might be.

Title: Re: My story...3cm AN.
Post by: suboo73 on August 27, 2009, 04:18:06 am
I love this post, and have not seen it before. I hope it is okay with you to move it to Radiation. A 10 year story is worth having around for those looking at radiation treatment.

I mostly like the great attitude. I hope I feel this way in 8 more years. :) Steve

Ram,  Thank you for the update! 
I think you are very wise for a 'young' person!

Continued wellness!

Title: Re: My story...3cm AN.
Post by: mimoore on August 27, 2009, 08:50:51 am
Life is simply amazing isn't it?
Thank you for sharing your great detailed story with us, it most certainly will help others. It is so great to hear you are doing so well.
Michelle  ;D
Title: Re: My story...3cm AN.
Post by: DR on September 01, 2009, 08:09:05 am
Great thread.  I really appreciate you providing updates on a regular basis.
Title: Re: My story...3cm AN.
Post by: RamAir on January 13, 2010, 10:40:25 am
Hello AN family! 

Time flies when life is good!   ;D  As I've promised, I'm here to provide another 6 month update.

Nov. was my 10 year post-op anniversary.  Amazingly, I forgot and only realized a few weeks later (LOL).  But, that's not necessarily a bad thing. 

Let's has been good.  My son's soccer team, which I am the Head Coach, finished undefeated!  It took us four years to finally do it, finishing with one loss the previous three seasons, but we did it!  What an amazing group of kids I had...loved every minute of it. Can't wait to do it all over again in a few months! Hard to believe, this year I will be celebrating 25 years of coaching youth sports.  Looking forward to 25 more!

As you can see, having an AN is not the end.  Heck, it's not something you had any control just happens.  Life goes on...better or worse.  We have to remember to always look forward to what tomorrow brings.  I won't lie...For me, it's an ongoing process.  Yes, there are some days (especially during the cold, winter months) when I feel life has it in for me. :'( (I don't remember asking Santa for a case of the Shingles...ouch!)  But you know what, as long as we remember that sun will rise tomorrow, things will get better.  :D

Before I forget...Yes, I did have another MRI since last we talked.  I am happy to report...well, nothing!  That's right, nothing has changed.  Still just a dark spot where a tumor used to live.   My hearing and balance have not deteriorated any further, so all is well.

I have been contacted by several people since the summer...keep it coming.  As always, I am here to talk, listen, offer options...whatever you need.  You are not alone! ;)

Talk to you soon friends!

Be well...
Title: Re: My story...3cm AN.
Post by: leapyrtwins on January 13, 2010, 12:54:35 pm
RamAir -

I'm happy to see that you're a man of your word - and even happier to see that life continues to be great for you.

Keep up the good work  ;D

Title: Re: My story...3cm AN.
Post by: Jim Scott on January 13, 2010, 07:54:07 pm
Ram ~

I wish every newbie could read your last post to see that an AN diagnosis isn't a terrible tragedy, even though some AN patients do have it rough. I applaud your dedication in posting a 10-year update (at 6 month intervals) and I wish you continued success in your post-AN life.  :)

Title: Re: My story...3cm AN.
Post by: Vivian B. on January 14, 2010, 10:35:55 am

I had preivously read your story and wanted to express my appreaciation to you for posting and keeping us updated and to know that you are there for us for support. I am glad that you are doing o.k.

Sending you thanks from Canada

Title: Re: My story...3cm AN.
Post by: RamAir on February 24, 2010, 11:04:19 am
Well, after 10 years post op, looks like we may have an issue. 

I've been experiencing severe head and neck pain for many months.  Kept thinking it was stress from work and family...but now I'm not sure.  Finally went to the doctor and will have to undergo a battery of tests.  After all these years, and my bi-annual ramblings, where I've tried to always be a positive as for others...I find myself in the difficult position I currently am in.

The pain has become almost unbearable, and has started radiating into my right ear canal, down my back, and into my arm.  My doctor thinks it may be a herniated disk, or arthritis in my cervical vertebrae, but I can't discount the neuroma is growing/spreading. :-[

Anyway, I suddenly find myself right where I was in 1999 - scared, nervous, all these thoughts going through my mind...

I'm hoping for the best...but can't ignore the possibility.   It's not easy being positive at times like this...but I'm trying.  My emotions are are a mess right now...with ups and downs every few minutes.  However, just knowing that a message board like this exists is comforting....

If you believe in the power of positive thinking...I sure can use some directed my way.  The next few weeks of waiting are going to be rough.

Thanks for listening... :(

Title: Re: My story...3cm AN.
Post by: moe on February 24, 2010, 11:45:16 am
Just now reading all your posts from 2005. What a great recap of everything. I joined about a year ago.....

Of course you are thinking that your new symptoms could possibly be the AN re-growing and I know how the subconscious works- I think we all tend to "think the worst" when new symptoms come around.

You have such a positive outlook and great faith and  hopefully this is a disc related issue. Sounds like it to me. The AN symptoms would present themselves a little slower, and you mentioned it was a "black spot" where the AN used to be. PLUS the fact that you are very active/athletic with your kids sports and whatever else- the body sometimes pays for it.

So I am optimistically thinking it is NOT the AN :) :) :) 

Let us know what the docs say. When are you having an MRI of your neck(I hope that is one of the things they do first).

Thinking positive for you :)

Title: Re: My story...3cm AN.
Post by: Jim Scott on February 24, 2010, 01:48:30 pm
Ram ~

I'm sorry to learn of your recent pain issues and, like you, I hope and will pray they are not AN-related.  Like Maureen, I suspect that your pain is disc-related but of course, that's just a supposition.

Please remember that you'll be in the hearts, minds and prayers of many people as you deal with this latest challenge.  You have a large contigent of folks 'rooting' for you.  :)

Title: Re: My story...3cm AN.
Post by: sgerrard on February 24, 2010, 10:49:24 pm
I have to say, those symptoms don't sound very ANish. Herniated disk sounds more like it, not that that is a good thing.

It is possible that you can still blame it on the AN, though. Some studies suggest that one way we compensate for lost balance function is to hold our head and neck tighter and stiffer all day, to avoid movement. Doing that for ten years may have led to a pinched nerve situation. ANs really can be a pain in the neck.

Ram, we are certainly hoping this is something that can be fixed up in a reasonable way. We want you back as our 10 year veteran!

Title: Re: My story...3cm AN.
Post by: suboo73 on February 25, 2010, 05:21:48 am

I just re-read this whole thread - your story IS amazing!

Now i am sorry to hear your are having some pain issues and hope they are resolved after some valuable testing!
Thank goodness for the type of diagnostic testing that is available today.  Many of us would still 'be in the dark' without it.

And here's a fact i don't like - i am not getting any younger!   :o 
So i have those aches and pains i don't want to admit, and have to sometimes re-invent the way i do things or ask for help. 
[Not because of my AN!]

We are all so glad you have expressed your concerns here - giving us a chance to send lots of good vibes your way!

Many thoughts and prayers to you and your extended family.
I know you will get through this...  Stay strong!

Title: Re: My story...3cm AN.
Post by: lalehjg on February 25, 2010, 09:45:39 pm
Hi Ram.

I'm no doctor, but your symptoms really don't sound like they're from an AN.  If the AN were growing, it may have caused hearing loss, tinnitus, vertigo, dizziness, balance issues.  Head and neck pain just don't seem to fit the bill with an AN.  I know you went through such a rough time in 99 when you were diagnosed, and, after a shock like that, we're really not totally the same.  So it's understandable that you are scared.  In your shoes, I would do this:  get my tests done, try not to think about it or worry about it until results come BECAUSE, those symptoms just don't sound consistent with a growing AN.  Take comfort in that right now.  I'm sending you good vibes.  Your story has inspired me to seriously look at CK for treatment of my AN 12 mm x 5 mm.  So keep on keeping on.

Title: Re: My story...3cm AN.
Post by: RamAir on November 03, 2010, 09:15:55 am
Hello all...sorry for not updating sooner.

Well, the pain I've been experiencing does not appear to be related, in any way, to my AN.  So, thank you to everyone for your positive thinking and prayers. ;D

I spent the last 6 months working in the Gulf on the oil spill. Unfortunately, the pain still lingers.  It seems to be stress related and may be due to a pinched nerve.  I manage to ignore it on most days, and have learned to cope.

Anyway, I'm doing fine overall. My hearing has continued to remain unchanged, as has my balance issues (very, very minor).  I have started working out pretty steadily again, as I'm anticipating as I get older, my balance may become more of an issue.  Keeping myself in top physical shape will help to compensate for the bad days.  I continue to have MRI's when necessary and have yet to see any changes.

Once again, I'm always willing to listen if anyone wishes to contact me.  The least I can do is share my experience with others and be a source of inspiration for someone suffering form a recent diagnosis.   Positive thinking is the first step in healing, and hopefully, I can offer an ear and a shoulder to lean on. ;D

Talk to you all soon...

{Edit}  Almost forgot - As it is once again November, I am now 11 years post-op.    ;D  As always, I will continue to check in from time to time, just to say hello and update you all.  Stay strong - stay positive AN Family.  You are not alone...
Title: Re: My story...3cm AN.
Post by: Jim Scott on November 03, 2010, 02:12:13 pm
Ram ~

Thanks for the update and congratulations on your steadily continuing recovery!

Title: Re: My story...3cm AN.
Post by: jbbrown15 on November 13, 2010, 11:03:27 am
This is great to read, as a 33 year old currently undergoing fractionated stereotactic radiation therapy for a 2.9 cm an.  Thanks for sharing!

Title: Re: My story...3cm AN.
Post by: RamAir on March 13, 2013, 01:53:11 pm
Hello all...just stopping by to report - I am still healthy and happy!  Have had another round of MRIs just to make sure, and all is well.  Still have some hearing left (thank God) and have had no further hearing loss.  As I am aging, I do find I have a few more days where balance is an issue, but luckily, it's minor and only happening once or twice per month. 

Anyway, just wanted to say - I am always available to talk.  As long as I have breath, I will help those in need with any advice I have.   ;D