Author Topic: DO's and DONT's with having an Acoutsic Neuroma (newbie)  (Read 14623 times)

Darin

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Re: DO's and DONT's with having an Acoutsic Neuroma (newbie)
« Reply #15 on: June 09, 2009, 09:51:57 pm »
   Hey Mark, just wanted to say 'hi' to a fellow young ANer. I am 25 years old, so I was pretty surprised to find out that I had about 50% hearing loss in one ear due to a tumor. It's fairly large, coming it at about 3cm. I ran a 1/2 marathon about a month ago, and my surgery is scheduled for July 1st. I know people have already mentioned this, but I'll add my opinion that whatever you physically feel up to, you can do.
   One piece of unsolicited advice I will give you is don't lose too much sleep searching the forums and internet for information. I have been limiting my time online lately, because before I know it, it will be way past my normal sleepy time. When I'm tired, that is when it's hardest to keep it together mentally, as well as when my tinnitus is the worst. That's a bad combo. There is ton's of stuff to read and learn, but try not to dwell on it. There is a lot of life that is more important than finding one more website about brain stuff. If you (or anybody) is interested in my blog about the whole process, PM me with your email address. (The blog is set to private, so I have to add your email to the list. Yeah, VIP-style  ;) Take care - Darin
3cm AN on right side
Surgery July 1st, 2009
C'mon facial nerve, you can do it!

suboo73

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Re: DO's and DONT's with having an Acoutsic Neuroma (newbie)
« Reply #16 on: June 10, 2009, 05:13:08 am »
Hi MARK,   Just want to also say WELCOME to the FORUM!  ;D
Folks here are fantastic, knowledgeable and will try to answer all your questions!

I am here with my sister (read signature).   ANs do NOT discriminate - weird, huh?

I am in W & W and had the contrast dye, too.  You will find some others whose docs don't even want the contrast (!), but this is unusual.
Most clear diagnosis is with contrast.  (And i don't like that part, either!)  Always have to remember to drink lots of fluids afterwards.

Again, welcome, and post those questions.
We are all here for you.

Sue





suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

wendysig

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Re: DO's and DONT's with having an Acoutsic Neuroma (newbie)
« Reply #17 on: June 10, 2009, 05:31:59 am »

Anyway, as others have said, there really are no dos or don'ts - having an AN shouldn't stop you from living your life.  AN treatment shouldn't stop you from living your life either.

You mention AN's being benign "hopefully".  I just want to assure you that the odds are definitely in your favor - 99.9% of ANs are benign.



Mark --

Welcome to this forum.  I don't have much to add except that riding on a rollercoaster can certainly make you more dizzy but will not hurt you.  Have fun at the amusement park.  Please keep us posted on how you are doing, and never feel funny about any question you have -- your looking for support and answers and we're here to help.

Wendy

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

tenai98

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Re: DO's and DONT's with having an Acoutsic Neuroma (newbie)
« Reply #18 on: June 10, 2009, 05:39:02 am »
Hi Mark
And welcome to the forum. I had a small AN on left side which was surgically removed 2 months ago. I've basically have had only small issues since..balance, and wonky head. I'm still tryin to come up with a definition for wonky head but come to the conclusion that until you had treatment then one will understand wonky head. All the best to ya
JO ;D
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

ppearl214

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Re: DO's and DONT's with having an Acoutsic Neuroma (newbie)
« Reply #19 on: June 10, 2009, 05:45:46 am »
Hi Mark
And welcome to the forum. I had a small AN on left side which was surgically removed 2 months ago. I've basically have had only small issues since..balance, and wonky head. I'm still tryin to come up with a definition for wonky head but come to the conclusion that until you had treatment then one will understand wonky head. All the best to ya
JO ;D

Hi Jo.... most folks define wonky head (a term coined by our own fearless Captn Deb) as a feeling of enhanced dizziness with a head "disconnect" (much like having a cold-type of head-disconnect). Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

grega

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Re: DO's and DONT's with having an Acoutsic Neuroma (newbie)
« Reply #20 on: June 10, 2009, 06:21:37 am »
Mark, being new to this forum myself, I've found that, as I read other posts here, different long-running expressions pop up every once in a while.  Seeing the expression used in a post is one thing, but when the definition is offered .... supported by it's derivation .... AND it's author (!) .....  well, need I say more ?!?!? 

Thanks Phyl .... "wonky head" is a great example!

All kidding aside, this is a great forum with very friendly supportive folks who don't hold anything back to help you answer your very important concerns, or at least get you pertinent info that'll benefit you.

Prayers and best wishes in your decision-making.

Greg
1.5 cm AN retrosig 11/04.
Drs. Henry Brem & Michael Holliday @ Johns Hopkins, Baltimore
SSD right. Tinnitus big-time, only when thinking of it.
BAHA since 7/20/10 ... really helps w/ hearing, specially after programming in subliminal message: "Hey, don't listen to your tinnitus!"

cin605

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Re: DO's and DONT's with having an Acoutsic Neuroma (newbie)
« Reply #21 on: June 10, 2009, 07:22:36 am »
Hello Welcome!
I was zip lining in Mexico a month before my surgery......also i did some i forget what you call it when you slowly lower your self down on a bungee over a cliff?
I really didn't think about it at the time becouse i did not find out i had an AN till after vacation(good thing??)
I went to Disney 3 years ago w/ AN...Went on all amusment rides ,even to The Tower of Terror.
I think you should definatly go on all the rides you want. :)
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

sgerrard

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Re: DO's and DONT's with having an Acoutsic Neuroma (newbie)
« Reply #22 on: June 10, 2009, 09:28:49 am »
There is a lot of life that is more important than finding one more website about brain stuff.
If you (or anybody) is interested in my blog about the whole process, PM me with your email address.

 :D

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.

sgerrard

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Re: DO's and DONT's with having an Acoutsic Neuroma (newbie)
« Reply #23 on: June 10, 2009, 09:30:43 am »
I was told by the hospital that radiation treatment wasn't recommended in someone as young as me due to it's links with cancer in later life too.

No such link exists. They are probably referring to whole brain radiation, which is an entirely different kind of treatment.

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.

ppearl214

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Re: DO's and DONT's with having an Acoutsic Neuroma (newbie)
« Reply #24 on: June 10, 2009, 09:33:32 am »
Typical scare tactic used by many physicians that are not as versed on radio treatments for AN's.  Not to say it can't happen, but I have a greater chance of being hit by lightening AND being hit by a MAC Truck vs. the cancer chance.....   I'll take the lightening and MAC Truck.

Phyl

I was told by the hospital that radiation treatment wasn't recommended in someone as young as me due to it's links with cancer in later life too.

No such link exists. They are probably referring to whole brain radiation, which is an entirely different kind of treatment.

Steve

"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

raj_06

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Re: DO's and DONT's with having an Acoutsic Neuroma (newbie)
« Reply #25 on: June 10, 2009, 09:52:13 am »
Mark,

Like you, I am also a young ANer. I felt pretty much shocked at first when I was told I had a tumor in my head three years ago. I was 22 then. Like Darin said, I think you should do anything that you feel like you can do. In my case, I had a translab surgery and everything went very well. I don't have any other issues except that  I lost my hearing on the AN ear. But, that was already gone before even I found out that I had an AN  :).

My doctors didn't say anything that I shouldn't do before my surgery. But, I think keeping yourself healthy is a very good idea. And of course, positive attitude plays a very important role. I wish you good luck on your acoustic neuroma removal journey (whether you choose radiation or surgery).
"After all these ordeals, I still say all is well":)

Migoi

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Re: DO's and DONT's with having an Acoutsic Neuroma (newbie)
« Reply #26 on: June 10, 2009, 10:26:43 am »
I'll add my voice to the chorus of "Welcome to the Forum" folks. While none of the things I'm about to post should be taken as advice, they are things that seemed to work for me....

Do... know that there is the possibility of a good life post AN. While getting told that you have a benign growth in your head can make you feel like you've been kicked by a cow... there are thousands that have gone through this and managed to have great lives afterward. I don't know if there are support groups on that side of the Atlantic but if there are, find one and go to it. You will meet folks in the various stages of this journey and be able to see first hand that life can be good.

Don't... obsess about it to the point of blocking out everything else. Yes, do the research (reading all the info on the ANA.org pages is the best place to start) but limit the amount of time devoted to it. Having a somewhat obsessive personality, I found that I had to set up a time limit for my research. I put a limit of 30 minutes a night on the computer obsessing and researching AN"s. If a question popped into my mind outside of those 30 minutes I wrote in on a note in my PDA (a small notebook would also work for this). By writing it down, I could then put it out of my mind without worrying about forgetting it. Then during my 30 minutes of research time I could look for the answers to the questions that had come up.

Do... find a person in your life you can talk to about this on a face to face basis, preferrably one that has gone through it already. Your ENT might be able to give you some advice on finding other folks. The hospital might run support groups or have a bulleting board (physical or electronic) where you could post a soliciation.

Don't... neglect to explore all your options. Ask to be given an appointment with a radiologist (or whatever they call the guy that radiates the AN to discuss all the aspects of using radiation as the treatment, if treatment is needed. Surgeons like to surgeon, they like cutting stuff out and sometimes see all other options as inferior to just cutting the thing out. The radioactive guy will probably stand aghast that oneone would choose to have their head physically cut into when he can just go in there with his magic beam and zap the growth with no fuss or muss. It's your head.. understand all your options.

Do... take generally good care of your body. I'm not saying you have to become a super nutritious macro-biotic health guru or anything (though if you chose to...) but if treatment becomes necessary then a generally healthy body will recover from the trauma of the treatment better and pretty much all treatment options entail some type of trauma. One thing that stood out during all the pre-op talking that happened with the various hospital people was they all seemed happy about the fact that I don't, and have never, smoked. I got the impression that if a surgical option is used, smoking greatly increases the chances of complications... I guess it really hoses up some of your body chemistry. If you smoke, that might be something you talk to your doctors about...to see what they say.

Don't... stop living your life. I haven't seen any research that suggests you can make your AN worse by doing any activity the rest of your body can survive. Of course, if you're doing an activity that the rest of your body is unlikely to survive, then making your AN worse is probably the least of your worries. As others noted, if your AN is affecting your balance system then this could cause some limitations...or it could let you get more out of your rollercoaster dollar (pound) than anyone else on the ride. Some folks ride rollercoasters to give themselves temporary wonky head... some of us with AN's get it for free.

Do.. make sure you keep coming back to the forum, posting, asking questions, and sharing how your journey is going.

..take care.. tim b
« Last Edit: June 10, 2009, 10:32:11 am by Migoi »
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sgerrard

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Re: DO's and DONT's with having an Acoutsic Neuroma (newbie)
« Reply #27 on: June 10, 2009, 08:19:24 pm »
Ask to be given an appointment with a radiologist (or whatever they call the guy that radiates the AN...

For the record, a radiologist reads x-ray and MRI images, while a radiation oncologist delivers radiation treatment.

I like Tim's do's 'n' don'ts. :)

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.

CHD63

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Re: DO's and DONT's with having an Acoutsic Neuroma (newbie)
« Reply #28 on: June 10, 2009, 08:40:04 pm »
Hi Mark ......

..... and a big welcome to you, as well.

I can empathize with you on finding out about your AN all alone.  My first symptoms were balance issues and mild hearing loss in one ear.  When my ENT ordered the MRI with contrast, he assured me it was only to "rule out" anything serious like a tumor.  When I had not heard anything 10 days after the MRI, I falsely assumed it was negative and went to my follow-up visit by myself ..... expecting to be told you must just have some mild inflammation in your ear.  I was so shocked I couldn't even think of questions to ask and rather numbly listened to the doctor explain my options.  Not fun, is it???

Because I had an unusually fast-growing type AN (already 2 cm at the time of diagnosis), I did not have to wait long between diagnosis and treatment (less than 6 weeks).  You are young and in otherwise good health, so take your time to explore all possible options and find the physicians with the most experience dealing with ANs.

Keep us up to date.

(I wrote all of this yesterday and before I could post it our power went down for two hours   >:( ..... now you have many great replies!  I especially liked Tim's Do's and Don'ts ..... great ideas/suggestions!)

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

Adrienne

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Re: DO's and DONT's with having an Acoutsic Neuroma (newbie)
« Reply #29 on: June 10, 2009, 10:30:43 pm »
I found out about my 3cm AN on Feb. 19th.  On Feb. 23rd we left for a week at Disneyland with our 2 young kids.  We rode EVERY ride we could get our hands on, and it turned out to be the best distraction we could ever have hoped for.

So enjoy yourself, and do not worry about doing any harm to yourself.

I'm sorry about your news.  It's horrible to find this out, but know that everything will be OK in the end.  Sorry you were on your own to find out, I was in a similar boat.  I was on my own, but had my 2 kids (5 and 9) along in the waiting room.  UGH!  Was not expecting that news AT ALL!

(hugs)
Adrienne
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!