Author Topic: about 2 weeks since i heard the words "AN"  (Read 12123 times)

carter

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about 2 weeks since i heard the words "AN"
« on: October 21, 2008, 07:42:07 pm »
 HAVE BEEN LOOSING HEARING FOR 10 PLUS YEARS. ABOUT 8 YEARS AGO, AN ENT DOCtor ASKED ABOUT THE LOSS ONLY ON ONE SIDE. HE STATED THAT HE COULD RUN TESTS, BUT THEY WOULD SHOW 0 SO I SHOULD JUST ACCEPT THE LOST HEARING.

3 YEARS AGO, I WAS FITTED FOR AN HEARING AID. WE TALKED ABOUT THE LOSS ON ONLY ONE SIDE. SHE FITTED ME WITH THE AID AND THAT WAS IT.  she worked for teh office of the ENT seen years ago.

EARLIER THIS YEAR, THE AUDIOLOGIST WAS ON VACATION AND DID NOT CHANGE HER VOICE MAIL. AFTER TIME, I CONTACTED ANOTHER AUDIOLOGIST AND THEY REPAIRED MY HEARING AID AFTER A TECH AND I TALKED.

AS I HAD NOT HAD MY AID REPROGRAMMED IN 2 YEARS, I NEEDED IT ADJUSTED TO COMPENSATE FOR LOST HEARING AGAIN. TO THE NEW AUDIOLOGIST'S OFFICE AND I MET HER. SHE DID THE NORMAL hearing TEST AND ASKED ABOUT THE ONE SIDED LOSS. THEN PERFORMED A TEST WITH PROBES ON THE NECK AND FOREHEAD WITH NOISE BEING BROADCAST IN MY EARS. ABNORMAL!

SHE ARANGED A VISIT WITH ENT - THE NEXT DAY.

THE ENT, TALKED  about hearing AND SET UP A MRI. I HAD A HARD TIME WITH CLOSED IN FEELING OF THE MACHINE. LESS THAN FRIENDLY TECH ALSO.  it was late in day and i had feeling that he wanted me to say i can't do it?  he offered a blindfold. 

GOT CALL FROM ENT AND HE SAID THAT I HAD A GROWTH. NON MALIGNANT. HE TALKED TO MY GP AND THEY RECOMMENDED THAT I TALK TO  a CYBER KNIFE facility. THE MACHINE IS NEW IN The Tulsa , OK area and both are associated with the supporting hospital.

Oct 7 - TO CB AND I WAS TOLD THAT I HAD AN A.N. THE SIZE IS 2.9 * 1.6CM. IT IS CLOSE TO BRAIN STEM. CK DR TALKED ABOUT THE TUMOR, SAID CK WOULD KILL THE CELLS, DESCRIBED MIMIMUM SIDE AFFECTS FROM RADIATION, SAID THAT I WOULD LOOSE SOME HEARING, GAVE TOUR OF FACILITY. ETC. SHE SAID THAT SHE HAD PERFORMED 30ISH OF THESE PROCEEDURES ON THE CK. SHE IS DIRECTOR OF THE PROGRAM. SHE HAS SEVERAL YEARS WITH OTHER MACHINES.

I KNOW THAT I DO NOT WISH TO HAVE THE SURGERY ..... TIME IN HOSPITAL AND PLAIN FEAR. I LIKE THE IDEA OF NON INVASIVE PROCESS.

SHE SAID TO GO OUT AND GET EDUCATED. TO GO ON TRIP TO HAWAII THAT WIFE AND I HAVE PLANNED FOR 2ND WEEK IN November. SHE SAID TO GO ENJOY LIFE. SHE ALSO TALKED ABOUT NOT LOSSING THE HEARING TOTALLY.... I HAD THOUGHT THAT SHE SAID THAT I WOULD UNTIL I LISTENED TO TAPE RECORDER TONIGHT. WIFE TOOK RECORDER AND GOT PERMISSION TO TAPE THE MEETING.

MY ONLY REAL SYMPTHOM TODATE IS HEARING LOSS anf the ringing in the ear..... SOME BALANCE ISSUE AS I FIRST STAND and a little as i walk.   

I HAVE DECIDED 99.9% TO TRY CK? I AM 56 YEAR OLD MALE IN PRETTY GOOD HEALTH - OVERWEIGTH - GOING TO WEIGHT WATCHERS AND HAVE DROPPED 35 POUNDS SO FAR. TAKE BLOOD PRESSURE MEDS.... SAME SCRIPT FOR OVER 5 YEARS. I HAVE MADE APPOINTMENT WITH DENTIST AND GP..... GET A FULL PHYSICAL, FLU SHOT?, GET TEETH CLEANED , AND ASK FOR ADVICE. THIS IS  set for the LAST OF OCOTBER.

I HAVE READ A LOT ON THE INTERNET.... i see that every site is sponsored by a group that pushes what it supports ... i am referring to those associated with dr offices or hospital. none of these "commercial" sites give an even account? or am i wrong? so i know if i go to surgeon, he will most likely say to have the surgery .... if to ck dr. the bias will also show??????

so given my present state of mind..... i think that i have made up my mind for the CK. to have it done in Tulsa - yes i know of Dr Medley in OKC.  The Ck dr her impressed me.  or more so, she impressed me.

also going out of town means lost days of work.   i need to feed the family.   i

--- i have united health care insurance.

the ck dr said 5 treatments.

the dr said that she would schedule 4 mri's for the first year... she did not talk about other visits - immediate care or anything else ....

i have scheduled another appointment with the CK dr on the day after we return from our trip.  i still have questions ...  but giving CK a shot makes sense to me.

sorry this post has been so long......  writing it out helps my nerves?

and i have to say thanks to the audiologists that had to question the hearing loss - thanks DR. Vikki!!!!

Diagnosed in fall of 2008 with 1.6 * 2.9cm AN on left side. 

Scheduled CK at Oklahoma Cyber Knife in December, 2008 and decided not to proceede on 2nd date that CK was scheduled.  I fired them.

CK performed at St John's Hospital (Tulsa)Jan 2009

sher

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Re: about 2 weeks since i heard the words "AN"
« Reply #1 on: October 21, 2008, 07:54:10 pm »
Carter,
I am almost 3 weeks post CK. I had 3 treatments approx 50mins each, 3 consequtive days. I was the first AN at Salt Lake Cyberknife. My doc had been trained by Dr. Medberry and also did GK at Barrows in AZ. I was worried about be the first at the new clinic, but decided to go for it and as of today, 3 weeks later I am starting to feel somewhat like I did Pre-CK. I would recommend it to everybody if they qualify for it. Hang in there!!
Sherry
1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

Kaybo

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Re: about 2 weeks since i heard the words "AN"
« Reply #2 on: October 21, 2008, 08:39:18 pm »
Carter~
Welcome!  You must be somewhere in my neck of the woods - I am in the panhandle of Texas!  I'm sorry that you have been thru so much.  I don't have any advice or help regarding CK, but I know that others will have more to say - I just wanted to welcome you to our happy, little group!

;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: about 2 weeks since i heard the words "AN"
« Reply #3 on: October 21, 2008, 09:31:30 pm »
Carter -

sorry to hear that no one thought to look into whether or not you had an AN when you first experienced hearing loss.  While it's probably not a huge consolation, lots of AN patients go undiagnosed or misdiagnosed for years, so you are not alone.

CK sounds like it would be a good choice for you, although I'm not a doctor.

The main thing with ANs is to educate yourself about ANs in general, and treatments specifically.  The ANA offers some really great information (brochures) so you might want to request them.

There is also a CK forum that you might find helpful - I don't know the link since it's changed recently, but Steve or Phyl is sure to know it and will pass it along to you.

As for your question regarding docs.  Yes, it's true that most who perform surgery tend to recommend surgery and most who perform radiation tend to recommend radiation.  There are docs that do perform both treatments so they tend to be a little more objective if your AN is able to be treated with either method.

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

sgerrard

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Re: about 2 weeks since i heard the words "AN"
« Reply #4 on: October 21, 2008, 09:52:42 pm »
Hi Carter,

Welcome to the forum. I had CK just over a year ago, and am very happy with the result. Mine was a small one; with a larger one, you can expect a bit more of the swelling symptoms in the first 6 months to a year, judging by the experience of others. I wouldn't hesitate to go to the new facility in Tulsa, especially since you seem to like the doctor there. Medbery has said that any facility staffed by people with previous radiation experience and good training on CK can perform the procedures very well. It is all in the computer anyway. The new cyberknife forum that Jan mentioned is at http://www.cyberknife.com/Forum.aspx.

I wish I was going to Hawaii in November, I hope you have a great vacation.  8)

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.

tenai98

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Re: about 2 weeks since i heard the words "AN"
« Reply #5 on: October 22, 2008, 06:20:54 am »
Welcome Carter to our elite group of ANers...Here you will find support and caring people from all walks of life to help you get thru this ordeal....
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

carter

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Re: about 2 weeks since i heard the words "AN"
« Reply #6 on: October 22, 2008, 09:52:16 am »
thanks for the words ....  they realy do help right now.  i am past teh stgages of why me and being mad ...  i am more into acceptance but am still very apprehensive.

i ahd joined the cyberknife talk group - -my post was about the last before they cahnged the site and archieved my post.   so i di not get a lost of feedback.

i found this site yesterday - joined and pasted most of the post into my introduction.  i have read several posts to date.

i am 99.9% headed towards CK.

reading the posts that i have gotten to so far have brought up my confidence level  and has helped to make me more at ease ....  i read one where a blow by blow account was given of each step.  this was amazing to me ....

my biggest open question at present is what to expect after the treatments .....  the ck dr downplayed side effects.   she made it sound as they would be few except for some tiredness?  i really want to know what to expect -- and yes i know everyone is different.  this unknow is my fear at present.

i was glad to know that i was not alone with the issues of the mri - closed in feeling.  i had never had such a feeling before.   a question about mri's .....  i read on some of the posts about testing for issues with the comparison "dye" before it is given.   is this standard?  the mri tech just brought me out of the machine - said that he was giving me an injection of the dye - left me blindfolded - cleaned the are and gave the injection through a vein.   

i ask about the mri as the ck dr said that she prefer that i need to stay with the same mri location as it helps in accuracy if the mri's come form the same machine for each test.  this is when itold her that i did not want to go back to the same place .... am i being too "picky"?   i just think that i wan tto be treated a person with feelings....

i am not a negative person - still like to sing the praises of the audiologist - Dr Vikki.

and thanks for the words - it does mean a lot right now....  for my wife and i.   we are celebrated our 35th wedding anniversary - the reason we are going to hawaii.  she deserves it for puttiong up with me.


again tahnks
Diagnosed in fall of 2008 with 1.6 * 2.9cm AN on left side. 

Scheduled CK at Oklahoma Cyber Knife in December, 2008 and decided not to proceede on 2nd date that CK was scheduled.  I fired them.

CK performed at St John's Hospital (Tulsa)Jan 2009

mk

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Re: about 2 weeks since i heard the words "AN"
« Reply #7 on: October 22, 2008, 10:28:58 am »
Carter,

I didn't have CK but GK, but I can relate to your situation because of the similarity in size. Our ANs are on the borderline that is acceptable for radiation.
A major concern is the possibility of swelling, which given the already existing compression of brain structures can be dangerous. In my case, my 4th ventricle is compressed, and in the case of swelling it could be blocked and thus cause hydrocephalus. It is important to be aware of such risks (brain stem compression is another). So make sure to ask your doctor about proximity of your AN to important brain structures etc. My doctors decided to treat me with a somewhat reduced radiation dose (11 Gy instead of the standard 12 Gy) to avoid swelling. CK is fractionated, so this may not be an issue, but you may want to ask about the overall dose that you will be receiving as well.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Sue

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Re: about 2 weeks since i heard the words "AN"
« Reply #8 on: October 22, 2008, 11:53:10 am »
Hi Carter,

In order to see "brain boogers" better, the dye is used when giving an MRI.  And that is usually the standard to detect Acoustic Neuroma. They really glow a bright white with the dye. 

I had Gamma Knife, and my AN is smaller than what you have, but I came through it okay.  The first week after wasn't much fun, but that was due to two things.  1)  The steroids I had caused insomnia.  Really a miserable experience for me.  2) The radiation upset the facial nerve and it let me know about it, big time!  My face on the AN side felt sunburned and I had all sorts of "nervy" things going on. 

Also, you will probably feel very tired after the treatment.  I mean, this is only natural. 

You might also read this:

http://www.hearinglosshelp.com/articles/balancesystem.htm

This explains the balance system and what happens to you when  things go astray.  It's a worthwhile read. 

Hang in there, things will get better.

Sue in Vancouver WA USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

carter

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Re: about 2 weeks since i heard the words "AN"
« Reply #9 on: October 22, 2008, 07:03:44 pm »
after reading some postings i am a better peson .... i know what whanky head is.   i feel better being amoung others
Diagnosed in fall of 2008 with 1.6 * 2.9cm AN on left side. 

Scheduled CK at Oklahoma Cyber Knife in December, 2008 and decided not to proceede on 2nd date that CK was scheduled.  I fired them.

CK performed at St John's Hospital (Tulsa)Jan 2009

sgerrard

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Re: about 2 weeks since i heard the words "AN"
« Reply #10 on: October 22, 2008, 07:09:44 pm »
I got the contrast dye the same way, just a word or two telling me what was going on. The comparison works better if you don't move around. Some people do get tests ahead of time, to check for possible issues with kidneys, but many places don't ask for the tests unless you are having kidney issues.

Swelling with a 2.9 cm AN could bring on some issues, so that is certainly something to check into. Hearing, facial nerve, even brainstem as Marianna mentioned. Steroids can help control the swelling, but bring their own side effects along. It is hard to say, and the best info will come from a radiation oncologist who is looking at the MRI.

Glad you are finding the forum useful, we hope to see more of you here. :)

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.

Debbi

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Re: about 2 weeks since i heard the words "AN"
« Reply #11 on: October 23, 2008, 07:11:38 am »
Hi Carter-

Welcome to our world.  I can't offer much info on CK, since I had surgery due to size and placement of my tumor.  However, I would direct you to a website that one of our fellow-forumites put together which contains first-person stories of a number of AN patients and their treatments.  If you lgo to "patient stories" and look for Mary from Arizona, you will find a great account of her CK treatment.  Here's the address:
http://thebraingang.wordpress.com/

Jim Scott's story is also there - surgery followed by radiation.  Lots of other great stories, too - I think you and your wife would enjoy reading through them.

Try not to get overwhelmed as you do your research - it is easy to get information overload!  The trip to Hawaii sounds like a perfect getaway, and at a perfect time.  You and your wife should just concentrate on having an wonderful anniversary while you are there - you can deal with the AN stuff when you get back (it's not like it is going anywhere!)

By the way, the MRI tech sounds like a weenie.  I can't beleive he offered you a blindfold!  Talk about insensitive.  If you have to go for another MRI, I suggest that you ask your doctor for a presecription for Xanax or Valium.  I am severely claustrophic, so that is a must for me - and it works very well.  Just make sure you have a designated driver!   ;)

Hey, congrats on your success with Weight Watchers!  I am a big fan of WW - I've kept my weight off for years by following their program of sensible eating.  Don't be surprised if you are able to go off the BP meds eventually - it is amazing how dropping even a little weight lowers your BP. 

Hang in there, Carter.

Debbi

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

http://debsanadventure.blogspot.com

Jim Scott

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Re: about 2 weeks since i heard the words "AN"
« Reply #12 on: October 24, 2008, 07:49:32 am »
Hi, Carter:

I've been distracted with some mundane chores of life recently and missed posting on this thread, so please accept my somewhat belated welcome.

I'm sorry you have an acoustic neuroma but pleased that you found your way here and received our usual warm, informative greeting.   I had surgery, then radiation but it was FSR, not CyberKnife, so I can't offer much in the way of advice.  Others seem to have given you plenty of useful information.   I trust you'll have a very successful CK treatment.  Enjoy the trip to Hawaii. :)

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.

arkansasfarmgirl

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Re: about 2 weeks since i heard the words "AN"
« Reply #13 on: November 10, 2008, 11:40:51 am »
Speaking of contrast dye...

They pulled me out of the machine, the tech said "you're not breastfeeding are you?"  I said yes I am.  He said, "oh well you can't nurse your baby for 3 days" and then was about to stick me.  I jumped off the table and started ranting and raving.  My baby was 6 weeks old at the time and my inner mama bear came out with a vengeance. LOL  I didn't have enough milk in the freezer to get her by for that long, so they ended up letting me have 3 days to prepare before coming back to finish the MRI.  As it turned out, after doing research on gadolineum, I only needed to abstain for 24 hours, so I could have finished that day after all.

Vonda

carter

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Re: about 2 weeks since i heard the words "AN"
« Reply #14 on: November 21, 2008, 02:27:10 pm »
i have decided on CK with theTulsa, OK facility...... Dr Heaton  .....

A new MRI, CT scan, and mask making are scheduled for next Tuesday.  I am going to another facility for the tests and the Onocologist prescribed valium to take before hand.

Dr. Heaton did have me tested before hand for any issues with the contrast dye.

i just feel confident with her ....  then i say i guess?????  it is scary to think about this too much.

my wife and i went to hawaii for 9 days - just returned and to the doctor, the next morning to finish any questions, etc.  i found the ultimate combination --- the woozie head, a couple of drinks while walking on a cruise ship.  this will really make you walk funny!

 hawaii was great.

Dr. Hearton's protocal is for no preventative steroids.  i had a central serous retinopothy - weird detatched retna a few years ago and i was told to avoid steroids if possible. 

i am old -not this old -  but too much has happened???@#%$@#$

the plan is now for Dr Heaton to plan the process early the week after Thanksgiving and to start at the end of this week or early the next week.

Dr Heaton is normally "dry"  ..... but she did get to me ....  she listed a few side affects and said that i was lucky ... i would not loose that much hair.   my wife started to laugh and asjked if that is due to not having that much to start ... and she said yes.

the hair was long, so i had it cut short in case enough falls out????

her nurse - lori - is a sweetheart.

my wife has been mothering me -----

people treat you a bit nicer when they find tha tyou have a brain tumor.

so life is good.

i will write and let all know how it is going and what it is like.


thanks
carter

Diagnosed in fall of 2008 with 1.6 * 2.9cm AN on left side. 

Scheduled CK at Oklahoma Cyber Knife in December, 2008 and decided not to proceede on 2nd date that CK was scheduled.  I fired them.

CK performed at St John's Hospital (Tulsa)Jan 2009