Newbie Newly Diagnoised

[Dani]

Hi,

I just joined today.  I was recently diagnosed with an acoustic neuroma  the doctor said was about 1/2".  He said it was larger then what he feels comfortable with, but wants me to wait 6 months for another MRI.  I[/font] don't want to sound stupid, but what is that size in cm's?  I have a hearing loss in my right ear....when I was tested, even a voice is all garbled.  I can't hear high pitched sounds hardly at all.  There is a pressure in my ear...sometimes worse then other times.  The audiologist said she doesn't even know how I walk straight with the hearing loss I have...but either I'm just use to it or don't have any trouble. 

I have been doing all kinds of research....and want to know if anyone else has tried any of the things I've been trying.  I got a hold of some of Dr. Bernie Siegel's books on visualization, meditation, building the immune system.  Also Dr. Lorraine Day's video's and workbook on how she got rid of a large tumor (course her's was cancerous) but still the tumor went away, with the alternative medicine she used.  Which was a lot diet, drinking loads of water, trying to keep toxins out of your body, keeping stress levels down (which is really hard now days and especially here around the holidays) and many other things she did.

I am a 58 year old female, baby boomer.  Have no idea where this thing came from, but of course like anyone else I would like it to shrivel up and go away without radiation or surgery.  That's not asking much is it  ?  Anyway I'm just trying to be positive, eat the best I can, exercise, drink lots of water, keep my stress level down, getting rid of my mercury fillings and read and study on this thing.  Any help any of you can give me on anything you have tried that might have helped......please let me know.  I'm not one for just waiting....I need to be doing something to try to help myself during my holding pattern...waiting for my next MRI in April.

I'm so grateful that I found this site.  It's been somewhat lonely thinking I'm all alone in this.  I am looking forward to talking to all of you and making friends.

Dani

[nancyann]

Hi Dani - sorry you got what we got, but...

well, 1 inch = 2.54 cm, so 1/2 inch = 1.27 cm.    I think your dr. made a good decision re: wait 6 months, that gives you time to decide how you want to treat this thing.    1.27 cm isn't big yet (thank God).   

I think your attitude is great, I'm a firm believer in visualization (it worked when I was post op with excruciating headaches - I can't take opiates, & I'm hoping it will work with my acupuncture for the facial paralysis).
The best advice I can give is stay peaceful inside, gather information, & see what happens with the repeat MRI with contrast.

Best regards, Nancy
PS- I also had poor hearing unilateral, I never had balance issues till post op.  My an was a full 2 cm.

PSS  oh - & I suggest taking a vacation BEFORE surgery or whatever you decide.  I found I'm always more relaxed after vacation, aren't you??

[Sam Rush]

Hi. Mine was same size as yours, with same hearing loss.  Had surgery at House clinic w/ excellent result.  It won't go away, If your otherwise healthy and can tolerate surgery, What's the point of waiting for it to get bigger??  House ear clinic has a 98% success rate w/ that size tumor.

[Derek]

Hi Dani....

My advice would be (with neuro consultant advice and regular MRI scans) to remain on 'wait and watch' for as long as possible to minimise unnecessary risk of side-effects from microsurgery or radiosurgery and in the interim do lots of research in order that (should it eventually be required) you arrive at an informed decision relevant to the ultimate treatment option that is right for you.

I have been subject of 'wait and watch' for almost 5 years with a 2cm AN and have a daily routine which involves a healthy high fibre diet (lots of fruit and veg), 2 litres of water and plenty of exercise including a brisk 4 - 5 miles walk to help with the balance! This regime has worked well for me and I would certainly recommend it.

Best of luck on your AN 'journey' and remember we are all here to help and assist when required.

Regards

Derek

[Sue]

Hi and welcome to our exclusive club.  You will find lots of information here and great support from some wonderful people.  We try to support you with your decision, whatever that may be. I am a wee bit older than you and my doctors recommended radiosurgery to deal with my 2CM AN.  That was fine with me, so that's what I did last April.  You have several directions that you can go in it seems. If it is not crowding your brain stem or causing really bad symptoms, then you can take you time to figure out which is your best option. My only advise is to look at all your options.  Doctors sometimes gently (or not so gently, depending on them I guess) persuade you to go the route that they want you to take and if they were taught that surgery is the only way to go, then that is what they will want for you. And that can go the other way, too - steering you towards radiosurgery and scaring you to death about microsurgery.  So....what's a patient to do? I for one wish we had no choice, because it would be a lot easier. Take a deep breath, and look at the different ways to deal with that thing and talk to the best doctors that you can find and then, when you feel you've made the right choice for you, go forward with confidence.  Try to find the most experienced doctors that you can, also.  That's important.  Good luck to you and with your eventual treatment. 

Sue
Vancouver, USA

[Obita]

Welcome Dani:

Our club is getting bigger every day, darn it.  At least we have a place to come for comfort, support etc...and we have come to the conclusion that ANers are the best bunch of people there is.

Most of these things grow slow.  If you start getting new symptoms before April, call your Dr.  I am sure he/she will order a MRI right then to check for growth. 

Good luck to you,  Kathy

[kristin]

i find it interesting that there are some who have significant hearing loss, but no balance issues but have over 2 cm ANs. i had a baby AN (8 mm) and i had no hearing loss, but twice the world fell out from under my feet and thought i was in an earthquake.

kristin

[Obita]

kristin - re:  balance and size of AN -

I only had three episodes over the course of two years that should have told me something was wrong (but didn't).  Twice in the car at the very same spot (about 6 months apart ) on the interstate I had a wierd feeling like when you sit a glass of water on a table.  It takes a min. for the water to settle down.  That is what my head felt like.  It only lasted 30 seconds or so each time.  The third was when I tried to dance like a go go girl.  I got the whirlys and figured I was too old for that clowning around.  I never gave these three symptoms another thought as they were spread out so far apart.

Then, 4 months before diagnosis I had the motion sickness real bad.  I woke up one day and had the whirlys and unbalanced feeling plus I couldn't keep food down.  That was when I was told I had fluid in my middle ear and was given dramamine and alergy meds.  Both took care of my symptoms and I thought I was in the clear.......(no hearing test yet......I could have been diagnosed 4 mo. sooner if my Dr. had seen a reason for one).

Wrong.  My AN was 2.5 cm and my balance was just fine other than those 4 times.  My surgeons were very suprised that I could walk heal toe unless my eyes were closed.......with eyes closed:  I couldn't even stand heal toe!!

Post surgery, no balance problems at all unless I am very tired, my eyes are closed or if I try to walk in the dark.

You just never know what ANs are going to do to you when they grow.

Happy Thanksgiving everyone,  Kathy

[Dani]

To: Kathy

You know it's really funny about the fluid in the ear thing.  I was told the same thing.  It took my G.P. about 5 seconds to decide that's what I had.  She gave me some nose spray and antibiotics and said it would take a long time for the fluid to clear...so I waited and waited...finally went back in for my yearly and told her my ear was the same.  She checked it out again and said there isn't any fluid in it.  Well I don't think there ever was....it was the AN.  Anyway that's when I finally decided to go have my hearing test.  The audiologist said it was not a normal hearing loss and I should go to a specialist as soon as possible.  It went on from there.  It seems if I get really stressed out the buzzing in my ear (right one) gets loader or if I get tired.  The only time my balance is affected at all is if I've been sitting for a long time and get up fast....I feel light headed for a little bit.

To Sam:

Sam, the reason I have opted not to get anything done this soon is......that when the ear specialist told me about what I had he said, "If it was in my head I would wait the 6 months for another MRI to see how much it's grown, we have no idea how long it's been there or how fast it's growing.  If you have any other symptoms before that time let me know.  Also I would recommend when and if you need to have something done that the gamma knife would be the less harmless of your options."  He also told me that it's not something you want to jump into to fast due to some of the adverse side effects you may have, because it is located on the nerve.....the 8th or 9th cranial I think is what he said.  I was totally in shock and a lot of what he said didn't even penetrate my brain I don't think.  But if it is going to grow really slow I would like to know that and keep it monitored and when and if I have to take a chance on my face on the right side being affected from the treatment.  I want to know it is something that I have no other choice in doing.  He also told me that they use to always do surgery on these, but a lot of doctors have now decided that because of the side affects and the fact they are usually so slow growing......most doctors prefer a wait and see approach.  Just wanted to let you know why I have opted to wait the 6 months before doing anything unless my symptoms get worse.

Keeping my stress level down is the hard one for me....I'm a type A personality and get uptight about so much stuff and especially over the Holidays.  But thank God I have my faith which helps me through a lot.

To Nancyann,

Thanks for letting me know what size this AN is in CM's.  Everything I read about on the web seems to be in cm's.  But when my doctor told me about it he said 1/2".....so I wasn't sure.  When I hear the size given in cm's it sounds much larger.


To Derek,

Thanks so much for your good advise.  I totally agree that taking care of yourself is a key factor in the AN's not growing as fast.  I also agree that watch and wait is the best advise, for me at this point.  Any time that your having anything done that may affect the brain & nerves, you want to give it lots of thought, research and prayer.  By the way do you eat meat?  There's so many things I know that are best not to do.....from what I hear red meat is one.  There are so many things put into beef, chicken, and pig now to make them grow fast....etc, etc.

To Sue:

Thanks also for your advise.  How has it been since your radio surgery?  Do you feel better?  Are there any side effects that you have noticed?  Is the radio surgery different then the gamma knife?  I live in Oregon...Oakridge to be exact.  I don't know if you know where that is...it is about 40 miles from Eugene....up in the mountains.  My doctor suggested also that the gamma knife center in Portland was one of the best to go to, in the Northwest....and I noticed that's where you went.

Good luck to all of you and I'm just so glad I found this site with so many friendly, helpful people.  Thanks to all of you who have written back to me.

Thanks,
Dani

[jvastola]

Dani,

I have to go on record as the rebel here.  I don't think that wait and watch is such a great idea in a situation that involves existing symtoms and a medium to large tumor.  The way I see it, in 6 months I went from no hearing problem, just tinitus, to a 60% hearing loss on my AN side.  If I would have had a more aggressive doctor 12 months ago, I could have possibley stopped the growth of this thing sooner and maybe still had servicable hearing when I was done.  As it stands now the hearing on the AN side is likely going to be useless to me after my GK. 

I'm sorry to be contradictory but I think it's important to hear many opinions. 

We all support you no matter what you decision.

Jim

[Dani]

Hi Jim,

My doctor just called me on the phone when he got the results....I didn't see the x-rays...I wish I knew exactly where it is and how big it looks.  I didn't think the size mine is 1.27cm was a medium to large AN.  I have virtually no good quality of hearing in my ear.  When I wake up in the mornings if I have my good ear against the pillow....I can't even hear the alarm go off.  When I took my hearing test...with white noise in my good ear all I could hear when the audiologist talked through her microphone were garbled sounds.  So my hearing is not good at all.  I just don't think I feel good at this point of taking the chance on the possible side effects.  Do you happen (or anyone) know a website or some photo of an AN.  I looked around the internet but couldn't find a good photo.

Dani

[Sue]

To Sue:

Thanks also for your advise.  How has it been since your radio surgery?  Do you feel better?  Are there any side effects that you have noticed?  Is the radio surgery different then the gamma knife?  I live in Oregon...Oakridge to be exact.  I don't know if you know where that is...it is about 40 miles from Eugene....up in the mountains.  My doctor suggested also that the gamma knife center in Portland was one of the best to go to, in the Northwest....and I noticed that's where you went.

Good luck to all of you and I'm just so glad I found this site with so many friendly, helpful people.  Thanks to all of you who have written back to me.

Dani, if you want to call me and talk that is fine with me.  You can e-mail me and I can give you my phone number that way.  Just click on my profile, I think my address is on there.  I was born in Eugene and lived all over Oregon and ended up graduating from Roseburg High School.  There was a guy in my class who ended up in Oakridge and was the fire chief there, or something. But he had a heart attack at a young age and died. His name was Bill Miller. This was about 20 some odd years ago because he was just in his early 40's I think.  So, don't know how old you are, but maybe you might know him.  Anyway, I'd be happy to talk with you about my experience.  I live in Vancouver, but I'm an Oregonian.

Sue

[Obita]

Dani:

Here is a link with two MRI's on it.  It does not say exactly what size they are, but mine was 2.5 and it looked lots bigger than these.  Yours probably looks alot like the one on the left.

http://www.dizziness-and-balance.com/disorders/tumors/acoustic_neuroma.htm

Kathy

[Derek]

That is a very useful and informative link Kathy, containing some very recent stats etc. Being an avid  'wait and watcher' I found the material on that subject to be particularly helpful and has indeed strengthened my resolve to remain in that mode for as long as possible.

Regards

Derek

[jvastola]

Dani,

OK, so I can sort of see where you might wait if you have no servicable hearing on that side but... the way I think about it, what will be next??

Again, I don't mean to confuse you, or belittle a decision anyone else has made, and I am in the minority here, but, there just is not very much room  in there, and every mm counts, IN MY OPINION.

Also, I noticed you were asking about Accupuncture etc.  I will be going in for some accupuncture treatments and a chiropractic alignment before my CK treament.   I have been practicing Yoga three times a week for about 6 months and I have almost completly cut out alcohol and have completely cut out processed sugar from my diet.  I have also increased my green tea and vegtable intake.   I figure anything that can help my body heal is a good thing.

Again, no matter what decision you make or when you make it, everyone here will support it.


Jim