Possible AN

[Rayna]

Hey everyone. Back in May, my ENT doc said that based on my symptoms and hearing test, I probably have an AN on the right. I presented with the feeling of fullness in the ear and the test showed that I have minor hearing loss in the lower decibels. Since I'm on a wait-and-see pattern until November, and knowledge is supposed to make you less worried (of which I am very), I'm mostly just looking for more information. I have questions, but thought it would be best to just introduce myself first. It's great to find a support group!

[Dana]

Dear Rayna,

So glad you found our 'club'.  You're very smart to alleviate your fears by seeking out knowledge and experience, of which there's lots here!!

My first thought, on reading your post, was it's 'funny' that your ENT said you probably have an AN, since almost all of us were guided to having an MRI  "JUST IN CASE" we had an AN!!  Just a suggestion -- if your emotional concern gets too intense, you might want to request an MRI (WITH CONTRAST, that's critical) earlier than November and then you'd KNOW if you have an AN or not.

in any case, if you haven't gleaned it already, ANs are:
-- benign, although they can be pressing against the brain stem, at which point it becomes critical to remove them (but most frequestly they aren't pressing against the brain stem);
-- usually very slow growing, so there is time to come to a decision about treatment;
-- treatable several ways that fall under three categories:  (1)  wait and watch -- get an MRI every year or so; (2) microsurgery to physically remove them and (3) radiation to zap them which hopefully kills them in place within several years.

The decision on how YOU WANT to treat it is based on it's size, it's position, and what kind of treatment you feel comfortable with (and, of course, how far you're willing or have to travel to get the treatment of your choice).

Both the AN itself and the treatments can cause: some unilateral hearing loss, total single-sided deafness (SSD), tinnitus, balance problems, a myriad of facial nerve problems including blinking problems, etc.   There is a closely related AN condition, NF2, that affects hearing in both ears, but if you're experiencing unilateral hearing decline, it's unlikely you have that.

Anyhooo.... this is a wonderful forum, full of caring and intelligent folks.  No question is silly, so fire away.... Deep breath, we all tell each other!

Ask questions and do let us know as your 'adventure' progresses.  Let me repeat, we've all been through the wringer, so we respect all questions and concerns.
Hugs,
Dana

[Jim Scott]

Hi, Rayna:

Thanks for stopping by to introduce yourself - and welcome! 

I hope you don't actually have an Acoustic Neuroma.  Although they're almost always benign, they are in a location that makes them problematic.  Dana beat me to all the salient facts and good advice so I'll just amplify her astute suggestion that, whether you do it now or in November, you do undergo an MRI scan (with contrast) to determine if you actually have an AN and if not, what is causing your symptoms.  If the MRI does show an Acoustic Neuroma, you have to know that so you and your doctor can chart a path to addressing it, be that with surgery or radiation (or in some cases, both). 

Please feel free to post again whenever you have a question or comment.  That is the purpose of these forums. 

Jim

[Rayna]

Thanks, Dana and Jim, for the warm welcome I have been thinking of requesting an MRI 'early,' since the more I'm reading, the more I'm wondering if some of my other symptoms are related or not. I always brushed some things off because I have bad sinuses--fuzzy head, dizziness, rare face tingles, etc. Would be nice to know for certain before I start over-thinking, if that makes any sense.

If I have barely any hearing loss, that would mean that the AN is still small, right? If the MRI turns up positive, I'm almost certain I would rather have it treated/removed than simply watch it... I think I read somewhere that the post-surgery recovery is better when it's smaller, at least for retaining hearing ability?

Again, thanks, I can already tell this place and its people are awesome.

[Dana]

Rayna,
Yes, your other symptoms might be because of an AN also.  Oddly enough, there doesn't seem to be much correlation between size-of-tumor and amount-of-hearing-loss.  Some people with teeeeny tumors have lots of symptoms, for others it's the opposite.  If your (or anyone else's) symptoms get bad quickly, I think any of us would say get an MRI with contrast sooner rather than later.  But, as I said, one of the blessings of ANs is that they are usually very slow growing.  I personally wouldn't see a reason to wait until November, unless there's something I'm missing -- does the doctor thinks it might be a temporary (non-AN) condition?  Or? 

On the other hand, there's little chance that there's any harm in waiting.  The only harm would be if it's a fast growing AN, or some other related kind of tumor, but I think it's fair to say that there's a smallish chance of that, if you've had the same symptoms for a long time.

If you discover that you have an AN, there's lots of discussion (both in posts already here, and in discussions you can have with all of us) about what treatment options to consider.

Glad you found the forum; my goal is that every doctor's office would tell AN patients about this site!
Soon,
Dana

[sgerrard]

If I have barely any hearing loss, that would mean that the AN is still small, right?
If the MRI turns up positive, I'm almost certain I would rather have it treated/removed than simply watch it... I think I read somewhere that the post-surgery recovery is better when it's smaller, at least for retaining hearing ability?

Hi Rayna,

I would say no, you can't tell the size of an AN by the symptoms. Sometimes they grow quite large before showing any symptoms, but other times they show symptoms when they are still quite small.

I think in general recovery is easier with smaller ANs. Hearing retention is more likely when the tumor is smaller, and when you still have most of your hearing before treatment.

If your ENT said you probably have an AN, that should be reason enough for an insurance company to authorize an MRI, so I'm not sure what the point of waiting is. Getting it diagnosed would seem to be step number one.

Oh yes, and welcome to the forum.

Steve

[leapyrtwins]

Rayna -

I'm with Steve.  I'd have your doctor send you for an MRI with gadolinium sooner, rather than later. 

If you have an AN and it's small, you may decide to watch and wait, but at least you'd know if you have an AN or not.

As Steve also said, there really is no correlation between AN size and symptoms.  Some patients have small ANs and big symptoms, and some have big ANs and few symptoms.  There is really no hard, fast rules with ANs.

Good luck.  Please keep us updated.

Jan

[Debbi]

Hi Rayna-

Welcome!

I am wondering why your ENT wants to wait until November to do the MRI?  If you are worrying about it (and who wouldn't be?), I'd think about calling the doctor and requesting it sooner.  As everyone here said, siize doesn't necessarily dictate symptoms.  However, size (and location) can dictate treatment, so an earlier diagnosis is better than a later one...

Let us know how you are doing, okay?

Debbi

[GRACE1]

I'm with everyone else - please go ahead and get the MRI so you will know if you have any AN.  We all hope you don't, but you need to know sooner than later.  Wondering until November can't be a good thing.   

[Tumbleweed]

Debbi raises an important point. If the tumor grows to over 3 cm in any one measurement, most medical centers will rule out radiosurgery. That leaves you with only one option -- resection (cutting the tumor out). While that's a good option, there are many of us on this forum who chose radiosurgery instead because of its much lower chance of complications (e.g., damage to facial nerve) and much faster recovery time. I urge you to get an MRI as soon as possible so that you at least will have some idea of how soon you must act (if at all) to preserve all of your treatment options.

Best wishes,
Tumbleweed

[leapyrtwins]

Rayna -

while Tumbleweed raises a good point, and I still think you should get an MRI sooner rather than later, keep in mind that ANs typically grow very slowly.

As with everything, there are exceptions to the rule, but once you know if you have an AN and how large it is you may be able to watch and wait for a period of time.  Don't rush into any treatment unless you have an AN that is very large and you are told that you absolutely should not wait for treatment.

As for surgery vs radiation, all patients are different and recover at different rates.  While radiation is typically a much faster recovery time than surgery, there have been some amazing post op recoveries on this forum - and some of them are very recent.  Plus it's important to note that surgery doesn't equal facial nerve damage.  Some surgical patients have it, some don't.

Bottomline, find out if you have an AN; if so, find out how large your AN is; find out what your treatment options are; and then do what is best for you.

Jan

[Rayna]

Sorry for the wait in the reply, it was a bit busy around here the last couple days.

Thank you for the advice; all of you are right. I am going to call and request an MRI. I think the ENT wanted to wait and see if the symptoms were getting any worse before actually visualizing it. But she did say that since there's no abnormalities of the Eustachian tube, there's not much else that would probably cause the pressure or hearing loss together, so even I'm not exactly sure why I'm waiting.

Is there anyone that has had an MRI with scoliosis rods? Mine are only six years old, so I would imagine that they'd be okay. Definitely going to ask the doctor and/or technician about it, but first-hand stories are always more reliable.

[lori67]

Hi Rayna and welcome.

You've already gotten some good words of advice so I won't repeat what everyone else has said, but wanted to tell you that I had "bad sinuses" for 15 years prior to my diagnosis of AN.  Since my surgery, I haven't had a single sinus issue.  I'm guessing they weren't sinus headaches!  I'm not trying to scare you or anything, but just wanted to point out that sometimes AN symptoms can be very well disguised as symptoms of other things - since you mentioned your sinus issues, I figured it was worth mentioning.

I'm not sure about the scoliosis rods - I guess it would depend on what the rods are made of.  If they're titanium, they shouldn't be an issue, but you'll want to make sure you don't have any other type of metal in there as well.  I'm sure the MRI place will take all the necessary precautions (and probably some not so necessary ones) before they come anywhere near you!

Keep us posted!
Lori

[leapyrtwins]

Rayna -

like Lori said, I'd ask the MRI people, but if the rods are titanium, they shouldn't be a problem.

The mesh and screws in my head from my AN surgery are titanium and so is my BAHA fixture - and MRIs aren't a problem for me.

Jan

[MAlegant]

Hey Rayna,
Don't know if you've scheduled the MRI yet, but, I was mostly asymptomatic except for some intermittent face pain.  I had no hearing loss, and none of the other symptoms.  My tumor was over 3 cm, which is considered large.  Have the MRI, knowledge is power.

I'm doing just fine by the way, 3 weeks post-op, recovering well.
Good luck,
Marci