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[ghenier27]

I just found out yesturday that I have acoustic neuroma, it is 16 cmm and the only effect I have is lost of some hearing in my left ear. While I do have some dizzy, it is usually when I am anxious. I suffer from panic attacks too. I have to say some 24 hours later and I still feel numb. You see, the only family I have is my diabaled daughter whom I am HER caregiver. And to say that I am nerous would be a understatement. I am terrifty at my future. I would love to her about you after stories. How long did take for you to get back to driving, cooking, etc.? I am trying to learn as much as I can before seeing the surgerion on the june 24th. Because my doctor claims with my age-it should be my only choice of treatment.  I am 52 years old and currently on no meds. And how many of you live normal lives? Do you travel? Is this classified as perminament disablity? I have soooo many questions, I just  hope some of you will be able to rest my troubled mind. Thank you all who response.  Please email/PM me here.

[ppearl214]

Hi and welcome

(side note... I had to remove your email address but folks are more than welcome to PM you here! I know they will, filled with support. )

I'm sorry to hear of your diagnosis but am thrilled you found us.  I have multiple diagnoses including AN and am a caregiver for another.  You will see here many that have had different forms of treatments and are in many unique situations.

Please know that your AN is benign (please remind yourself of that) and its just in a funky spot..... and that it is treatable. You will read many stories here, people will share with you thoughts, experiences and such... and we are here to help.

Please take a little time to step back, read around the forums and people will share just how they manage in their lives, to their unique situations.

I can share, as one that had treatment 3 yrs ago (a form of radiation called Cyberknife) that I forge forward, I do the best I can, even in my caregiver's role....., I function and many others here can share the same. I will not sugar-coat and yes, there are those here who's outcomes aren't what they hoped, post-AN treatment, but they forge forward as best as they can.

But, the bottom line is there... we are here for you.  I send wellness wishes to you... and again, welcome.

Please hang in there.
Phyl

[tenai98]

Hi and welcome to our group. I am almost your age at 50 this yr. I am now 6 weeks post op and back to driving, cooking, cleaning, albeit some stuff is slow. Yes you can travel. And no its not a permanent disability unless you experience some of the negative aspects of this illness. Most of us go one to lead normal lives but some have had to go on disability. Each of our journey is unique with alot in common if that makes any sense to you. Feel free to ask all the questions you want. This is why we are here
JO

[mk]

Hello and welcome.

Given the size of your AN, certainly surgery is not the only option. Unless the location of the AN is very unfavourable, you are probably a candidate for all types of radiosurgery (CK, GK, FSR) etc. Make sure to research your options and consult as much as possible. The recovery times vary a lot from person to person.
I chose GK for an admittedly much larger (borderline for radiation) AN, because among other things I have two young kids and not much help around. I didn't need any recovery time and I resumed my activities right away. But even with radiation outcomes and symptoms may vary a lot, so the important thing is to be as informed as possible about the risks and benefits of each type of treatment.

You will get through this fine.

Marianna

[Jim Scott]

Hi and welcome, 'ghenier27'. 

I'm sorry you received a diagnosis of an acoustic neuroma but please do not panic and imagine all sorts of bad things will happen.  These are benign (non-cancerous) tumors unfortunately located in a very problematic area.  Your research will show you that radiation treatment - or surgery - whichever you chose - is not likely to seriously alter your lifestyle, but, in all honesty, it will have some effect, that is certain.  It's very likely that you'll be able to continue caring for your disabled child.

I was diagnosed with a large AN (4.5 cm) three years ago.  My neurosurgeon advised me to undergo debulking surgery, allowing him to surgically reduce the size of he tumor and cut off it's blood supply.  That surgery took place in early June, 2006 and was very successful.   I came out of it with all my pre-op symptoms gone - and no deficits.  Three months later I underwent 26 FSR treatments, which were painless - and also successful.  My last MRI showed the remaining tumor was developing necrosis and indicated some shrinkage.  I'm very blessed. 

Within weeks of my surgery I was driving and doing everything I had done prior to my surgery, except for heavy lifting, which, at my age (66) I avoid, anyway.  I have some minor balance deficits and a tiny bit of tongue 'numbness' which is not visible to others and of no real consequence to me.  Granted, mine is a success story and, unfortunately, because we're all unique and every AN situation is a bit different, not every AN patient has the same experience.  However, with the small AN you have, the odds for successfully treating it with only minor impositions on your everyday life are good, so please don't be terrified. 

We're not doctors and can't dispense direct medical advice but please post any general questions you may have and you'll receive responses from those who understand what you have and your emotions surrounding this situation.   

Jim

[Vivian B.]

Hi and welcome to the forum. Just wanted to tell you that feeling anxious is very normal, but like others have said, this condition is treatable and for the most part which ever treatment you choose, you will be o.k. I can't provide any information regarding post treatment, as I haven't been treated yet, but from what I have read and others have documented, everyone is different but again, everyone has moved on and adapted to their symtpoms. Think good thoughts, and you will feel better.

Vivian

[Kaybo]

Hello and Welcome - sorry you are here because you have an AN, but this is a great place to be if you have one!  Some would say that some of my outcomes would be "less than desirable" but I was very young (25) when I had AN surgery and i have gone on to have 3 beautiful girlies and a GREAT life...Just yesterday I was riding a "loopy" roller coaster at an amusement park!!  Life is good and it goes on! 

K

[epodjn]

Hi,
Welcome to the group. I just found this site and I have to say it's the greatest. It's so nice to finally find people who really understand what I'm going through. I am 5 months post-op and doing great. I think the hardest part of this was that I felt great before the surgery with only a slight balance problem and slight hearing loss. Now I have facial paralysis and I'm and deaf on the left side. This was not the outcome they were expecting but you have to play with the cards you are dealt, right. But I have to tell you that this is not a death sentence. It's totally normal to feel anxious about this but don't let it get out of control and run your life. Even with some of the negative stuff I still feel like I'm very blessed to be here sharing life with my family and feeling pretty good most of the time. Just try to dwell on the posititve! Hang in there. We will be there for you.

[Kate B]

Hello there,

The term brain tumor is frightening at first.  You are doing the right thing by going out to seek information.
Know that this is a benign tumor which usually is slow growing giving you the time necessary to research your options.
With a 16 mm tumor, you most likely will have many options.

Keep asking questions...there is a wealth of knowledge out there. Rest assured, we are hear to help.

Kindest Regards,
Kate

[leapyrtwins]

Hi and welcome to the forum.

I'd like to suggest you contact the ANA and ask them for their informational brochures and their WTT (willing to talk) list.  Not everyone on this forum is on the WTT list and you may find someone in your area who would be willing to help you during your recovery if you have surgery. 

Don't get me wrong, the forum is great - but the WTT list will give you some additional resources, which is important since you have a daughter to care for.

As others have said, radiation may be an option for you due to the size of your AN; don't let age be a deciding factor.  It would be beneficial for you to consult with doctors who do radiation, doctors who do surgery, and doctors who do both.  You need to get a well-rounded perspective of your options.

As for your questions regarding life after AN - I was 45 1/2 when I had my surgery (two years ago) and I live a life just as full as the one I had before my AN.  I work the same job (accountant), I travel, I take care of my children (single parent; two teenagers), etc., etc., etc.  As K mentioned, life is good    I am SSD (single-sided deaf) from my surgery, but there are far worse things in life.

If you do opt for surgery, you may need to have someone be with your daughter while you are hospitalized, and you may need a little household help for a week to ten days once you get home.  Beyond that, you most likely won't need long-term care.

I didn't see any mention of where you are located, but if you give us a general idea, someone on the forum is sure to have a suggestion of a doctor or a facility where you can go for treatment - and to find help with your recovery - if that's something you want.

Feel free to ask us anything, or just lean on us when you need to; that's what we're here for.

Best,

Jan

[ghenier27]

Thanks for all the members who replied. I have to ask this question as crazy as it may sound. But I learned  from the web and asked my doctor at Shands ENT Clininc, in Gainesville,Florida about radation. I have readed that once a tumor is killed with radation that the cells around the tumor has 2 in 400 chance of becoming cancerous. As with the surgery, once it is out - it's gone. The doctor confirmed that news. And while I would understand that if I had other health issues I could see using the radation therpies they have. For those of you that choose the radation, I would like to know why and don't you worry about the chance of cancerous cells growing back?

[moe]

Hi and welcome to this great forum.
I did not have radiation, and my surgical outcome was less than favorable. But I too lead a very full life and feel blessed to be alive-I work part time, am the "house manager" and just basically move at a slower pace now.
My tumor had been in there for 5-10 years too long, according to the surgeons.
You found yours early, so you have lots of time to research options. I've heard it is very nerve racking to figure out what course to take, but after you decide which way to go, then you'll feel so much better.

Also it is good that you only have minimal symptoms. Some people's symptoms get worse and they opt for surgery.

It can get very overwhelming with all the opinions out there, horror stories, and such.

Just try and take a break from it all at times- you have time on your side.

PM if you need help with specific questions. Glad to help.
Maureen

[ppearl214]

Hi ghenier,

Oh, this one always punches my buttons the wrong way.....

Many doctors have been using the "cancer" scare as a scare tactic for quite a while when it comes to discussing radiation on AN patients.  There is such a miniscule change of having a malignancy that honestly, it should only be a minute risk to the whole radiation decision-making process.  Yes, there are reported cases, but could probably be counted on less than one hand.  I have more of a chance of being hit by a mack truck or being struck by lightening vs. the radiation cancer scare.

There have been many discussions here and on the CK Patient Support forums (docs there volunteer their time to answer patient questions about radiation on many forms of ailments) that have delved into the radiation on AN to cancer discussions.  there are many docs that are comfortable with the protocols they do and when they aren't as versed on the current AN radiation treatments, they tout what they know (what they are comfortable with) and try to sway folks from radiation. It's a common practice for many.

I had AN radiation 3 yrs ago.  I have no related cancer..... and as for me.. when I weighed out the risks involved (I had a higher risk of losing my hearing, or edema issues or whatever)... the cancer risk was so low for me, it was a non-issue.

Hope this helps. You can do a "search" option here for "radiation cancer" and see the other discussions that have noted it as well.

Phyl

[grega]

Hi "ghenier" .... can we call you Debra?

Re-reading your original message here, I see, as we all have, that you are frantic as you face this big "unknown."  Hopefully you got the message from all the great folks that have responded before me that, because the AN is benign and very slow-growing, a rushed decision is not necessary.  Your doctor should have also stressed this to you.  And you should remind yourself of this often.  Perhaps this will calm your fears a bit.

I had surgery 4.5 yrs ago and, although I lost hearing on one side, my life returned to normal within 2 months.  On May 22 on this thread, Kaybo said she just rode a roller coaster (terrific K!) .... I've ridden coasters many times since my surgery .... and also golfed, and sang in my church choir, and etc, etc, etc.  So I hope you don't think everything will change. 

Some decide on a course of treatment sooner than others .... I had surgery 5-6 months after the AN was diagnosed.  I learned everything I could and discussed the situation with several surgeons at different hospitals who had performed the pocedure many times.  Hope you are able to do the same on your decision-making journey.

Many people are here to help in more ways than you can imagine ..... everything from the very serious discussion  to the very humorous .

Best to you .... and don't stop asking questions.

Greg

[sgerrard]

For those of you that choose the radiation, I would like to know why and don't you worry about the chance of cancerous cells growing back?

Because I talked to a radiation oncologist, who specializes in radiation, not just a surgeon who has heard of it and doesn't like it. 

The figure you read might be the average for a wide range of radiation treatments and a wide range of tumors, but it is certainly much too high for ANs treated with stereotactic radiation. 1 in 2000 is a more realistic number. Besides, you can't base your decision on a 0.5% or less possibility anyway, you have to focus on the 99.5% probability. When you get into the small possibilities, something could go wrong with any treatment.

Radiation appealed to me because it was less invasive, had a low chance of a side effect like facial paralysis, and had a good chance of controlling the tumor and saving some of my hearing. So far so good.

Steve