Pre-treatment symptoms

[amye]

Hi everyone. I'm new to the forum, although I've been visiting for the past couple of weeks -- just diagnosed three weeks ago with 4mm AN. Although it is small, I am really struggling with vertigo for one month now. Does anyone have experience with this symptom? I am hoping to be able to manage it while I explore treatment options. I have been advised to "watch and wait" because the tumor is small. However, my symptoms are pretty bad. I am 42 years old, the mother of two small children (one 2 1/2, one 8 weeks), very active life, so I have to be able to function!

Cheers,
Amy

[sgerrard]

Hi Amy,

Welcome to the forum. I know there are some people on here who have dealt with vertigo, I hope they will respond to you soon.

4mm is pretty small, but if it is causing vertigo problems, that can be no fun. Odd as it may sound, the best thing to have happen may be if the AN takes out the balance nerve on that side completely. The trouble arises mainly when the nerve is partially functional, and sends misleading information to your brain. Surgery also typically takes out the nerve completely, and though it takes a little while to make the adjustment to using only one balance nerve, it works out pretty well in the end.

How bad is pretty bad? Do you find you have to lay down with the room spinning, or is it more like dizziness for a minute? Have you been to a vestibular lab for testing? That might provide some useful guidance.

Steve

[suboo73]

Hi Amy!  I will say welcome, also! (But sorry you have to join this club...)

You will find WONDERFUL people here, this forum is simply FANTASTIC!
I have not had too much experience with vertigo - just once, with the whole room spinning for a minute or two and it was not 'kul.'
Luckily, i was going to bed at that point, and just let it pass.  I'm sure you will hear from others on the forum regarding this issue.

In the meantime, research, research, research!  As many others say, knowledge is power.

All my thoughts and prayers are with you.
Sue

[EJTampa]

I am mainly welcoming you here as well as my bout with vertigo was short lived.  For about 3 days, I had on and off vertigo along with vision problems.  Funny thing is, if it had lasted a few days more, I would have gone to the doctor sooner than I did.  In my case, I had no hearing issues when the vertigo struck.  It was much later...maybe 6 months to a year later before I started to have hearing loss and tinnitus.
 
One thing I will caution you on.  If you don't have any hearing loss or tinnitus yet, you may want to consider treatment early.  Many people do prefer to watch and wait, but there is a pretty high probability that it will begin to affect your hearing nerve as it grows, assuming it hasn't already.  The only symptom I saw mentioned in your post was the vertigo.
 
Ernie

[cindyj]

Hello, Amy - welcome! 

I was a severe vertigo sufferer for quite a few years!  I had a number of episodes that were completely debilitating - could NOT get out of bed, etc.  A couple of times I did end up in the emergency room due to dehydration from being so sick...you get the picture.  These severe episodes usually only lasted a couple of days, though.  Then, I also had what I called "mild" vertigo days that never really went away...I did not continue to seek medical help as I thought there was nothing that could be done and I just learned to live with it.  Once I was finally diagnosed, years later, because of a new development (tinnitus), I realized that the AN was the cause.

Anyway, after six months of research and consults with a number of doctors, I eventually decided to have the AN surgically removed so that, among other reasons, the balance nerve would be completely severed - giving the other side of my brain the opportunity to really compensate.  I still have a bit of wooziness when I do certain activities, but that doesn't stop me!  However, I have had no further true vertigo (room spinning).

As you'll see and hear many times here on the forum, everyone is different and the treatment decision is, of course, ultimately your decision.  It's a tough one, but we'll help in any way we can by sharing our experiences and answering questions you have.

Best of luck to you,

Cindy

[amye]

Thanks everyone for your responses! I feel lucky to have such a forum...(although not so fortunate for the reason I need one). I had a severe episode of vertigo about a month ago which precipitated my diagnosis. I had been doing really well until this past weekend, when I had a relapse and my dizziness/blurred vision returned. I already do have mild hearing loss (high frequency) in the affected ear, and mild tinnitus as well (neither of which I noticed before the vertigo episode and subsequent diagnosis). I am definitely researching my options. In addition to being a new Mom, I am also ride/train/show horses competitively, so I'm really freaked out about the balance issues. I am leaning toward radiation, but I have heard that it doesn't help with dizziness issues. Does anyone know if this is true? I am afraid that if the balance nerve is removed, I will never be the same again and this will impact my ability to ride my horses.

This vertigo stuff is really debilitating...can't drive, ride, etc. I have heard that this is an unusual symptom, at least persistently. My doctor (a neurotologist here in Atlanta) says he isn't even sure that th AN is causing the symptoms...I feel like he is sorta blowing me off.

I'm confused and scared...

Amy   

[amye]

Thanks Cindy (we were posting at the same time!) Your situation does sound similar to mine. I have sent my info to House Clinic and should hear back from them this week. I am really scared of the surgery! I am VERY physically active and I'm so afraid of losing any functioning. But I can't live like this indefinitely either! Were your symptoms intermittent/episodic? I seem to have a long period of residual dizziness/blurry vision after each episode. And the doctors seem so dismissive of all this for some reason!

Thanks soooo much,
Amy

[Kaybo]

Amy~
Hi & Welcome!
You need to talk to Vonda (arkansasfarmgirl) - she was a VERY new mom when she had surgery and is very active with all the horse stuff.  I believe that she said she sold her horses before surgery b/c she thought she wouldn't be able to ride them but is already looking for new ones!!  Search for her!

K

[EJTampa]

Amy,
 
I agree with K.  See if you can contact Vonda and speak with her.  It may help to settle your fears some.
 
First, Did your doctor have a reason for believing that the vertigo may not be related to your AN?  The AN directly affects, in fact, grows around your vestibular nerve.  I'm not a doctor, so won't dispute his belief, but it does make me go "Hmmm...."
 
Second, it is true that radiation can leave the balance nerve partially functioning (in the shape it was in prior to treatment).  But radiation also has a greater chance at saving hearing and does not require hospitalization.  There are pros/cons to each, which is why so many people here struggle with making that very decision .
 
With surgery, the balance nerve is completely removed.  It will take some time for the brain to adjust, but coming up on 5 weeks post op, I can tell you that my balance has improved a lot!  I still get light headed when turning my head quickly, but I am still improving slowly.  I am returning to my job next week, but I don't ride horses .
 
You will get lots of good advice here on the forum, but none of us are in your shoes.  You will find that after making a list of what's important to you, and the pros/cons of each treatment, you will come to a decision and finally feel at peace with this whole AN journey.  You may not think so now, but you will .
 
Ernie

[Mickey]

I guess with AN`s beside size alot has to do with location.  With such a small AN you would think there would be nothing noticeable. In any case with symptoms that are that disturbing probably a good idea to act. Also with a AN that small a much easier task for treatment. My AN is 12mmx06mm with only symptoms tinitus slight hearing loss for many years. Its not that disturbing for me to act W+W  but who knows what the future brings? In any case judgeing by this great board and modern technology AN`s are very treatable and all will be good. Best wishes! Mickey

[amye]

Thanks everyone! I will definitely try to find Vonda.

This is such a scary and confusing process, and I truly appreciate having you guys to bounce things off of. For example, the medical literature really downplays the vertigo/balance stuff (focuses much more on hearing and facial nerve issues) but I see lots of people mentioning this as a symptom on the forum. To answer your question, Ernie, I think my doc here is equivocal about the vertigo because it happened so suddenly, and the tumors grow very slowly. Not sure what would have gotten it started. He has lots of experience with ANs, so I don't know what to think. I just want these symptoms to go away so I can get back to living my life!

By the way, House seems to have lots of negative things to say about radiation options. Has anyone else struggled with the lack of long-term data on radiation outcomes? Although rare, the oncogenesis (turning the AN into cancer eventually) threat is very scary, esp. because I have these two small children and such. Any thoughts?

Amy

[Esperanza]

Hi Amy,

Sorry you are having problems with vertigo.  I had just one very bad bout which led to my diagnosis but I get days where I have an 'on a ship' feeling and have a travel sickness type of nausea...   when I sought advice I was told to keep active and do more walking! 
I just wish I knew what is was that made this occur on some days and on not others as I can't see a pattern to it.   So I walk a lot even when I don't feel like it and stay as active as possible!  So sounds like you are doing all you can... 
... and yes having an AN is scary and confusing and the process of working out how best to deal with one is not easy but you will know when the right way comes along.
As for your Doc.?  Maybe he doesn't know as much about AN's as he thinks... 
x

[suz]

Hi Amy,
How challenging it must be to care for two little ones with vertigo! I understand your concerns - and I don't know how long you have been  dealing with this, but if it's any help, my AN symptoms come and go. I have been a watch & wait gal for two years now, and sometimes I have increased hearing loss, then it returns; sometimes really dizzy - then that goes away....and so on. Sometimes I even feel completely symptom-free! So maybe in time your vertigo will subside.  I don't know if there is any medical info to back this up, but I have a sense that my body re-adjusts each time there is a change in my hearing/balance and the brain compensates.
I hope this is helpful, and hang in there!
Suz

[cindyj]

Hey again, Amy!  Are you in the Atlanta area?  I'm up in Cumming.  I'm going to send you a
PM w/ my phone number...

There is no rush to make any decision - you have time on your side.  As for being active after surgery, there are many, many of us who have returned to most activities that we did pre-surgery.  Might take some time, might have to make some adjustments, but it is possible in most cases. 

Talk to you again soon,

Cindy

[Jim Scott]

Hi, Amy ~

Although an acoustic neuroma diagnosis is no fun, I'm glad you found this website and the forums. 

Vertigo can be very debilitating and, even with small tumors, can be a symptom that drives the AN patient from observation ('watch-and-wait') to treatment, be that radiation or surgery (or both, in some cases).  In your situation -  mother of an infant and a woman who is very active and rides horses - you're probably even more negatively affected than most by these symptoms.  In all honesty, Amy, they usually don't go away or significantly diminish without some kind of treatment - but the tumor is eminently treatable.  I should mention that, today, there is also the possible option of endoscopic surgery to remove acoustic neuromas.  This surgical approach is much less traumatic than conventional microsurgery, with an average discharge time of 48 hours, as opposed to the typical 4-6 day hospital stay with conventional microsurgery.  Unfortunately, this procedure is not yet widely available but the Skull Base Institute http://www.skullbaseinstitute.com/ is a pioneer in the approach and has many success stories.  Some of our members are 'veterans' of this procedure and will testify to it's success.  I believe that it's worth considering. 

As for the risks of oncogenesis with irradiation, I believe the statistics are somewhere in the range of 1 in 1000, an almost infinitesimal number.   You have to understand and take into account that most doctors are biased one way or the other, be it toward surgery or radiation.  That's why you have to do your own, independent research (thank goodness for the internet!) and, when it comes to treatment, 'follow your 'gut'. 

As others have stated, this is a surmountable situation.  Back in 2006, I was 63 years old and diagnosed with a large (4.5 cm) AN.  I underwent microsurgery to reduce the size of the tumor and cut off it's blood supply, then, after a planned 90 day 'rest period', I underwent FSR; 26 'low-dose' radiation treatments over 5 weeks, focused on the remaining tumor.  I'm happy to report that I came through both procedures relatively 'unscathed', with only a few very minor deficits that are invisible to others and do not affect my quality of life.   Whatever approach you ultimately chose to address your AN, I wish you a similar outcome. 

Jim