Author Topic: New to this.  (Read 3327 times)

hayneshome

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New to this.
« on: October 21, 2008, 07:47:14 pm »
So glad to have a place to go.  I found out this morning that I have an AN. The doctor was sure it was Meniere's disease untill he got the MRI results. Even after the MRI, he thought it maybe was just a glitch on the films so he had me get an ABR test and it was very conclusive to say the least.  At least I have an answer to why, but somehow, it doesn't seem to help. The AN is small 3-4mm but it has been disableing for me.  I am dizzy all the time and fighting tinnitis and nausea. I was a long haul truck driver untill a month ago. Please tell me there is longterm hope to be normal again.

MAlegant

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Re: New to this.
« Reply #1 on: October 21, 2008, 08:21:32 pm »
Hi,
If it helps any, I'm at 3 months post-op and pretty much back to normal.  (I had surgery)  Your AN is small so perhaps radiation is something you can explore.  Do your research. And look forward to lots of folks posting and trying to help you.  This is a great group.   Did you say where you are located? 
Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Kaybo

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Re: New to this.
« Reply #2 on: October 21, 2008, 08:28:15 pm »
Hello & Welcome~ 
There is HOPE!!  AN's can lead to some interesting things, but life can be lived to the fullest (even if it is a LITTLE altered), after AN (you can check out my blog - address at bottom - & see what life is like for me 12 years out).  Marci is right in saying that your tumor is on the small side so you have LOTS of options.  I'm sorry that it is already causing you so much trouble - hopefully you can get that taken care of & feel better soon!  Please ask us any question you have and know that we are here for you.  It is VERY scary to be diagnosed with a brain tumor - take a deep breath & remember that it is benign...

K
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!

lacey7

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Re: New to this.
« Reply #3 on: October 21, 2008, 08:41:44 pm »
I'm so glad you found this site.  It's been a life-saver to me.
There are wonderful people here......so do your research, and ask questions.
There WILL be a normal again for you.  It's very scary when you are first diagnosed.  I remember that so well.  I was diagnosed on April 15th of this year.
I'm now 4 months post-op, and life is back to almost normal. 
Your tumor is small................so you will have all 3 options available to you...........watch and wait, radiation, and surgery.
Radiation is a good choice, I think, for small tumors.
Find a good doctor, one that has dealt with this alot.  Also, there is good news that your doctor found this so early. 
You will be ok.  Do your research, and find out what you can.  This site is great for information, and learning that you aren't alone.
Please take care,
Lacey
Diagnosed 4/15/08.
AN - 1.4 cm.  Translab surgery 6-26-08.  SPF leak 7-5-08, and went back into surgery 7 -6-08.
SSD left side, after surgery
Dr. LaRoure - Providence Hospital, Southfield, MI.

leapyrtwins

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Re: New to this.
« Reply #4 on: October 21, 2008, 09:21:50 pm »
There IS long term hope to be normal again.  As Lacey said, your AN is small, so you can pretty much watch & wait, have radiation, or have surgery.

With the problems your AN is already causing you, you may not want to watch & wait.  Generally as ANs grow, although they usually grow very slowly, they cause more problems; so you may want to get yours treated so you can get back to the normal you mention.

You don't say what kind of doctor diagnosed your AN, but for treatment you need to see someone who is experienced with ANs - for example, a neurotologist.  If your current doc isn't one, or hasn't recommended one, someone on this forum who lives near you might have some suggestions.  So it would be helpful if you tell us where you are located.

I highly recommend contacting the ANA and asking them for their informational brochures.  They're written in basic language - not medical terms - that is easy to understand.

Whichever treatment option you choose, we are here to support you, offer advice and our opinions, and provide you with humor if necessary.   We're also very good at letting members vent when they need to.  You've come to a great place.  Welcome  :)

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

Tumbleweed

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Re: New to this.
« Reply #5 on: October 22, 2008, 01:07:52 am »
Welcome to our forum, hayneshome. I'm sorry you are feeling so poorly. We all know what that's like, and we're here to help in any way we can.

If your dizzyness and nausea only recently began, there is hope that they will mostly resolve as your brain adapts to the wierd signals it's getting on your AN side. The tinnitus is more likely to persist, although it too may diminish to the point where you don't even notice it many days. Tinnitus can be maddening at first, but believe me, you will largely get used to it should it persist.

The nausea, like your dizzyness, is caused by damage to your vestibular nerve (which controls your sense of balance). Over time, your brain should adapt at least a little --possibly a lot -- to signals it's getting from the damaged balance nerve and reduce these symptoms. At the onset of my symptoms, I had vertigo so bad I couldn't even move my head slightly without vomiting. I was so nauseous, I couldn't hold down water. I had to go to the ER (what a nightmarish ride in the car that was!) for rehydration by IV. In a few days, my nausea and vertigo disappeared, but I continued to have oscillopsia for several months. That, too, finally went away. I still have nearly constant disequilibrium and light-headedness, but it's mild enough on most days that I can still go hiking, backpacking and mountain climbing (alpine climbing, but not rock climbing anymore as that requires great balance).

Unfortunately, my tinnitus persists. But it has vastly improved. On some days now, I barely hear it. I believe a healthy, balanced diet and adequate sleep keep my tinnitus in check. Specifically, eating a ton of steamed leafy, green vegetables and a lot of fish rich in omega-3 fatty acids (salmon, trout, etc.), along with strictly avoiding eating sugar works for me. There is no doubt in my mind that this diet has helped me tremendously; when I backslide I feel worse, but when I stick to it my symptoms diminish.

If you have been dizzy and nauseous and having tinnitus for more than a few months and it's not resolving, and especially if these symptoms are getting worse over time, I would agree with Jan that watching and waiting may not be your best choice. If your tumor continues to grow (not all ANs do), it could cause these symptoms to worsen further. However, if your symptoms are new -- and stable -- and you don't yet have a good idea about whether they will resolve over time, watching and waiting is a reasonable strategy. That's because your tumor is very small and is not likely to become large for many years. (The average growth rate is 1 to 2 mm per year, although some don't grow at all and others grow much faster.)

In any case, you shouldn't panic and rush into treatment. Even if you decide you don't want to watch and wait, you can take a few months or more to thoroughly research your treatment options. Bottom line: having such a small tumor, your prognosis for preserving or regaining a high quality of life are excellent.

The toughest part at the beginning, when you first find out you have an AN, is the mental stuff: worrying, shock, fright and anger. That will also ease very soon.

Again, welcome to our group.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

satman

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Re: New to this.
« Reply #6 on: October 22, 2008, 03:58:53 am »
you will be truckin on in no time,everything will turn out fine,returning to driving was a huge concern to me and granted it took 7 months but i got there and you will to.
dont let the 7 month thing scare you,i was in really bad shape.
kicked my little 8cm buddy to the curb-c ya !

ppearl214

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Re: New to this.
« Reply #7 on: October 22, 2008, 05:22:05 am »
Hi Haynes and welcome.  As you can see, many here to welcome you and to share knowledge and experiences.  Your AN is small and VERY treatable.  Please try doing a "search" option here re: dizziness and tinnitus (which you can find lots of info in our "Hearing" forum as well as other places here).

Hang in there... research, research, research (and step away for a bit if it becomes too overwhelming)... and again, welcome.

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

Sue

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Re: New to this.
« Reply #8 on: October 22, 2008, 09:26:23 am »
Welcome from me also. I am sorry that you had to find us, but glad that you did.  You might also be interested in reading exactly how your balance works.  I recently was told about this site and I found it extremely helpful, and I'm a couple of years into this adventure.  This doesn't really explain what to do about your problem, but it tells in easy to understand terms how our balance system works and what happens when one of our components doesn't work correctly.  At least you'll be aware of what is causing your troubles and why and may help you to understand other symptoms that might crop up down the line.  There are other threads on here that will help you cope with the problems with your balance.  It takes a little bit of time for your "good" side to take over for the AN side that is on the fritz.  But, this usually resolves itself.  I had a few brief moments of Vertigo maybe 14 years ago,(weird that I remember this), but it didn't last long enough for me to go to a doctor.  I realize that this was the early stages of my AN, now. 

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

I hope everything goes well for you,

Sue in Vancouver 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

wendysig

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Re: New to this.
« Reply #9 on: October 22, 2008, 11:11:42 am »
Welcome to our group.  Sorry to hear you have an AN but am also glad you found us.  Your AN is small, but sometimes the small ones shout the loudest and cause the most problems from what I've read. Do you know the location of your AN?  Size and location are important factors in deciding how to treat them.   What, if anything, did your doctor recommend?   Have you gone for other opinions regarding treatment yet?  If not, you should. There are drugs you can take for the dizzyness and even if your doc doesn't  offer anytrhing, I've heard Dramamine can sometimes be helpful. 

I am almost 13 weeks post-op and started driving again in earnest at about 5 or 6 weeks post-op, but I did drive when necessary at 3 weeks post-op.  My biggest reason for not driving a lot in the beginning was that I couldn't turn my head enough to feel safe (very stiff neck after a 7 1/2  hour surgery and having some neck muscles moved), that was the biggest obstacle for me in this regard. Life has almost returned to normal.  I still have some residual balance problems but am very hopeful they willl resolve with time and effort on my part.

Wemdy
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!

mimoore

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Re: New to this.
« Reply #10 on: October 22, 2008, 11:25:01 am »
Welcome. Sorry you have to deal with an An but we are here for you. I remember feeling extremely overwhelmed at first. I am four and half months post op and feeling GREAT! I have facial paralysis and lost hearing in one ear but life goes on. Life is good and it will be for you as well. Keep us posted - ask tons of questions. {{Big Hug}}
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

cindyj

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Re: New to this.
« Reply #11 on: October 22, 2008, 02:39:09 pm »
Hello and Welcome!

I had very similar things going on about 7 or 8 years ago - I just thought it was a horrible case of vertigo - went on for several months (lived on Antivert) but then, as Tumbleweed pointed out, my brain must have adjusted - I can remember thinking that I had just finally learned to live with it...the dizziness never really left, but I was definitely able to get on with living normally.  It wasn't until Feb of this year that my AN was found.  As others have pointed out, yours is small, so you have time to research and weigh your options.  Took me about 6 months to finally make a decision...

Good luck, ask questions and keep us posted,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

andrea in slc

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Re: New to this.
« Reply #12 on: October 22, 2008, 03:33:37 pm »
Welcome to our fun group. Sorry you had to join us though!

I pm'd you.

Hang in there! The information-gathering stage can get to be a bit much, so step back and take a breath if you have to!

Jim Scott

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Re: New to this.
« Reply #13 on: October 22, 2008, 03:34:22 pm »
Hayneshome:

Just want to add my welcome and encouragement.  I had a large AN (4.5 cm) and underwent both surgery and radiation treatments.  The surgery was successful; the tumor's blood supply was cut off and it was reduced to about 2.5 cm .  My symptoms basically disappeared and I was driving (with my surgeons approval) within two weeks, although it was a Honda Civic, not an 18-wheeler.  :)  Three months later, following a long-range plan formulated by my neurosurgeon and a radiation oncologist, I drove myself to 26 separate radiation treatments (FSR).  My last MRI (in August) showed the AN is shrinking and showing cell death ('necrosis').  Today, some two years plus from surgery and radiation, I'm doing fine and leading a normal life.  I helped my (adult) son move last week, I was just appointed a deacon in my church and yesterday, I set up and figured out our new high-powered computer (and new modem) that I'm using to post this.

The initial AN diagnosis is always a bit daunting but believe me (and many others who have been where you are, today) you'll get through this and life will go on.  Maybe not exactly the same as before, but pretty close.  Stay calm and focused, do the necessary research and keep a positive attitude.  Take control of your situation by choosing doctors who listen to you and don't treat you like a dull student.

There are many folks from around the U.S., Canada and the world who frequent these forums.  All want to help, advise and support you.  That includes me.  Feel free to ask, vent and comment as you see fit.  We really do understand your fears, concerns and curiosity so please use these forums as a resource.  I hope to see more of your posts in the near future.

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.

LADavid

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Re: New to this.
« Reply #14 on: October 22, 2008, 08:40:54 pm »
Hayneshome
Long term is a good term.  Things do get better.  If you approach it realistically and have patience, you'll see it though.  My orignial prognosis was a two month recovery -- silly doctors -- what do they know about the real world.  It took me three months to get facial movement back soon followed by the dreaded synkinesis.  My balance was a mess.  A day I didn't fall over was a good one.  I had surgery in December 2007.  In May 2008 I went into Physical Therapy.  They have things you can guage your progress against.  Day to day, I don't see anything different.  But I had a test last week on a balance machine - it showed how much I've improved since May.  I may not have seen it -- but the machine did. Some of us return to normal with in weeks -- others may take awhile -- but from my own experience, it does happen.

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments