Author Topic: My story...3cm AN.  (Read 18232 times)

RamAir

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My story...3cm AN.
« on: June 01, 2005, 11:06:15 am »
Hello,

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 me...at 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.:-\ Ooo...how 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 radiation...you 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 treatments...no 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 lucky...how 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 you...it'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. amnlupiano@comcast.net  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
« Last Edit: November 03, 2010, 09:26:39 am by RamAir »

Russ

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Re: My story...3cm AN.
« Reply #1 on: June 03, 2005, 01:54:24 pm »
Hi
  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.
  Russ

RamAir

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Re: My story...3cm AN.
« Reply #2 on: August 09, 2005, 09:34:36 am »
TTT

Crazycat

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Re: My story...3cm AN.
« Reply #3 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.

          Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

matti

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Re: My story...3cm AN.
« Reply #4 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.

Cheryl
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

Crazycat

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Re: My story...3cm AN.
« Reply #5 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!

         Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Palace

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Re: My story...3cm AN.
« Reply #6 on: November 15, 2006, 06:21:50 am »
RE:  YoYo Syndrome is what I call it!

RamAir,


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,



Palace
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

Derek

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Re: My story...3cm AN.
« Reply #7 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.

Cheryl


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.

Regards

Derek
« Last Edit: November 15, 2006, 08:19:59 am by Derek »
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

RamAir

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Re: My story...3cm AN.
« Reply #8 on: November 15, 2006, 08:15:47 am »
    Hi all...yes, I'm still around.  Still loving life ;D

    This month (actually next week) marks my 7th anniversary since making the biggest decision of my life. I'm now 35.

    My hearing has not decreased in my "affected" ear, and my good ear has improved.  The doctors say it's the body's way of compensating...I say, "nice to hear you!" :-*

    I have stopped periodic MRI's for now.  I will have them again, but for now, I use my hearing and balance as a good indication of continued success.  If I notice a change, I can ask for an MRI to check on things.

    I've noticed a continued change in the field.  Where once they used a mouth piece to locate the head, they are now using various headframes. (Should make the experience even better!)  I've noticed more and more hospitals investing in GK/LINAC. I've seen reports out of Europe with successful reports...it's all good news!

    Since last I posted, my wife and I have had our third child...Isabella Rose (or as we call her...Bella Rose).  

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.
  • My second child, Marisa Ann who was born on July 26 was named after my deceased grandmother...Ann.  I'm not sure why I chose the middle name other than it just "felt right".  Months later, after speaking to a family member who is a nun, she explained to us that it was very nice of us to name my daughter in honor of St. Ann's day...which just so happens to be July 26.  To say I was startled was an understatement... :o
  • My third child, Isabella Rose...I've spent my whole life trying to gather information on my family's origins.  However, since all of my grandparents died, I've never been able to get back very far.  Since being diagnosed with my AN, I decided to rededicate myself to finding out "who I was, and where I came from".  My wife and I chose the name Rose for my daughter because once again, it just felt "right" to me.  I can't explain it...I just knew it was the name she should have.  So, what does this have to do with anything?  One month ago I had a major break in my family's history.  I finally was able to trace my roots back to Italy.  I discovered my great-grandfather's name as well as my great-grandmother.  To my amazement, her name was Rose.  Once again, just a coincidence...hmmm. ???
[/list]

So, what is my point.  Simple.  I decided to doubt the doctors I spoke to and ultimately choose LINAC because...well...it 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 doctors...in both camps....it 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 life...it'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: amnlupiano@comcast.net.

Looking forward to my 8th anniversary ;)

 


« Last Edit: January 29, 2010, 10:41:50 am by RamAir »

Derek

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Re: My story...3cm AN.
« Reply #9 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

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

matti

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Re: My story...3cm AN.
« Reply #10 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!!!

Cheryl
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

Crazycat

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Re: My story...3cm AN.
« Reply #11 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

              Paul

     
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Jim Scott

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Re: My story...3cm AN.
« Reply #12 on: November 15, 2006, 03:04:33 pm »
RamAir:

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.


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.

Captain Deb

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Re: My story...3cm AN.
« Reply #13 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."

Hmmmmmm..........

Capt Deb 8)
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50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

RamAir

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Re: My story...3cm AN.
« Reply #14 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
« Last Edit: January 29, 2010, 10:42:41 am by RamAir »

 


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