Question

[LOIS]

I was recently diagnosed with an.  It is 11mm x12mm.  Would it be unreasonable to wait for 6 months for another mri?  I was told after 10mm it should be treated.  I couldnt get into my regular ent so went to another.  After sending me for a hearing test and the girl there that did it was very adamant about getting a abr, he said he felt that was overkill and over several weeks had me taking 6 different allergy meds.  I originally went for a constant hissing in my ear since Feb.  Something didnt seem right so I made a appt. with my regular ent who did send me for the abr, a eng, then a mri.  I've gone to 1 surgeon who did several things that bothered me.  First, I gave the papers from my ent to the nurse and asked her to make copies.  She said no, I should have done that before I gave them to her.  Then, while looking at the mri with the doc he said he wanted to order more tests.  They ended up being for the abr and eng.  I told him I already had them and had given the paperwork to his nurse.  He then looked through his papers and found them.  It really bothered me that he didnt look at everything first.  His options were surgery through the back of the ear, surgery through the ear, gamma knive and mri in 6 months but that they didnt like to do that once they reached 10mm.  He said he would send a letter and to go over it with my family.  In his letter he put that by doing the surgery in back of the ear there was a 50% chance he could save my hearing.  (I only have minimal hearing loss)  In the office he had indicated that was how he could save it.  He also put in his letter it was 10mm X 11mm instead of the 11mm X 12mm that it is.  He had said if it grew at all I would need treatment if I insisted on waiting 6 months.  So I'm thinking if it doesnt grow he would still say it had since his size in his letter was wrong.  I called another girl I used to work with whom all I remembered was years ago she thought she had a ear problem and it turned out to be a brain tumor.  When I started to ask her about it she completed the sentence for me and said it was a AN and gave me her drs. name.  When I looked at the paper my ent gave me he had said only go with one of these 2 drs.  It turned out her dr was the second one he had listed.  She had a golf ball size tumor and ended up with slight facial paralysis.  So, I have a appt. for him but couldnt get in till the end of July.  When I went back to the ent to get copies of my paperwork again since the surgeon didnt give them back to me I told him what happened.  He asked what did he say about the cat scan you had last year?  I told him he never mentioned it and probably didnt look at it.  10 - 12 years ago I had a parotid gland removal (most of it) because of a mass.  It turned out to be just a bunch of stones.  So last year when the other side parotid swelled up he sent me for a cs.  He said thats why he was concerned and wanted me to get into the first dr. I could, that these are usually slow growing but nothing had shown up on the cat scan the year before.  Its my left ear with the AN and it was my left parotid that was removed.  I am really confused.  Do they ever just go away on their own?  I would really like to just leave it and not bother with it anymore.  I've had some balance problems and little dizziness and lately my left side of the neck is getting shooting pains along with a sudden cough which Im sure the neck and cough have nothing to do with it.  At least I think.  Any info would be appreciated

[Kaybo]

Lois~
Sorry you have an AN, but glad you found this site.  I am sure that you will get lots of helpful advice here.  I have not ever heard of Acoustic Neuromas just going away on their own, but that doesn't mean that they couldn't - I think that it is something that you will want to start checking out all of your options to take care of it.  Good luck - please send me a PM (on left of screen) if I can be of any help to you.

K

[Jim Scott]

Lois:

Welcome to the site and the forum. 

I feel it necessary to state upfront that we cannot offer medical opinions here because we're not physicians.  However, your AN is fairly small (less than ½") and based on other's experience, there is no reason for making hasty treatment decisions at this time. 

To my knowledge (sans medical degree) Acoustic Neuromas do not simply disappear but they can and do stop growing, sometimes remaining dormant for years, then suddenly growing rapidly, necessitating almost immediate treatment. AN's are basically unpredictable and every case (patient) is slightly different.  Even though symptoms tend to have a certain commonality they are not uniform and what one patient experiences does not automatically indicate what another AN patient will experience.  No doctor can predict with any degree of medical certainty what will happen with your AN in the next six months.  I would be very cautious of physicians that try to scare you into rushing into a treatment prematurely.  Based on what others have experienced, waiting six months for another MRI (taken with contrast) should not pose a danger.  Again, let me emphasize, that is my non-physicians opinion.

I believe you might wish to seek the medical opinion of more than one neurosurgeon.  This site has doctor lists for all areas of the country and our members that post messages here can also make recommendations based on their personal experience with surgeons and radiation oncologists, as your AN is small enough to be a candidate for radiation ('radiosurgery').  I would suggest you look into all of your options, be cautious and don't rely on just one surgeon's opinion.  We stand ready to assist in whatever way we can and will support your treatment decision without qualification.   Please feel free to post questions whenever you feel it necessary. 

I wish you all the best as you go forward in your 'AN Journey'. 

Jim

[leapyrtwins]

Lois -

waiting 6 months for another MRI shouldn't be an issue, as most acoustic neuromas grow slowly.

I'm not a doctor, but I have never heard of an acoustic neuroma just going away on it's own - although lots of us probably wish ours had    

I encourage you to contact the ANA - if you haven't already - and request some of their literature on ANs; you'll find it very helpful.

Getting a second opinion on your AN either now, or after your next MRI, is a good idea.

What part of the country are you in?

Jan

[sgerrard]

Hi Lois,

Welcome to the forum. Sounds like you've got an AN.

These ANs don't show up well on a CAT scan, especially if the scan is not focused on the ear area. The MRI on the other hand, when done with contrast and a focus on the ear area, shows them up well. So you probably had the AN last year at the time of the CAT scan, and it just didn't show up.

Some physicians will wait till an AN is 20 mm before taking action. The canal where it is located, the IAC (might as well start getting used to the lingo), is about 15 mm long, so yours is probably still completely inside it. Long story short, waiting six months should be fine, unless your symptoms start getting way worse. Waiting until the end of July for that second doctor appointment is certainly okay.

So you can relax a little, and browse around this site, and other resources, and learn a little more about acoustic neuromas and treatments. It sounds like the person you worked with may have had one too, so she could be a good resource. It is unlikely to go away on its own; if you watch and wait, you could wait for years; but it may start growing and causing more trouble, in which case it will need to be treated. You have time to work out the best treatment approach for you, and to find a doctor you are confident will do a good job.

Steve

[LOIS]

Thanks for all the info.  I know I'm definately waiting to see the other doc in July as I wasnt too thrilled with this one.  Sgerrard, one thing he did say was it didnt start where they normally do and is pressing against my brain now so I dont have that 20 span.  Glad to hear they dont always show up on a cat scan though.  I'm beginning to wonder if my cell phone has anything to do with this.  Its the ear I use to talk on it and still do.  I dont want to cause a problem with the other one.  But I have noticed getting a pain in my ear, headache and the hissing gets louder when I'm on the phone.

[Larry]

Lois,

Its been a while since i gave a detailed response but you have been given some awful medical advice so far. i was on the receiving end of bad medical advice and have sufferred since.

ordinarily, a growth your size is definitely watch and wait mode. They can remain dormant for long periods and then get a growth spurt but even a 100% growth spurt in your case would still have the AN a reasonable size to attack. The generally accepted cut off for radiation treatment is 3cm so you are a long way from that.

i think the surgery technique suggested to you is Middle Fossa. It is the one that gives the best option of preserving hearing - but no guarantees - has worked for a number of posties but has also failed just as many.

Now, specifically for you, it appears that you have something going on with your AN that may require some immediate attention. Your symptoms will not get better, if anything, likely to get worse. It sounds like it is pressing on the brain stem which is why you are getting these symptoms.

Here's what you need to do.

1. When you see the doctors make sure you are fully armed with all the questions you need answering and don't let them fob you off either.
2 You need to research the different treatments available surgery, radiation and wait and watch.
3.You need to find out how many AN ops your doc has performed - (experience is the key here),
4. you need to speak to the radiation docs as well not just the surgeons as the two fields don't usually recommend each other as an option.
5. Send your MRI's to House (contact them first- Dr Brackman) and he can give you an opinion over the phone / email - i believe for free.
6. All documents, MRI's etc are yours - if they don't give you a copy, ask for the originals back. Important to keep a history. be strong with these guys.
7. Challenge and question the medico's - they are not super human and too many of them believe that they are aloof and will talk down to you - thats why you need to research - and there is lots of good info on this forum from real life accounts.

because of the symptoms you already have, you may need to do something now'ish but also be aware, every option has side effects so prepare yourself for a fairly stressful period of time and ask and research the side effects.

If you struggle with the stress, we will be here to comfort you but i thought i better lay it on the line up front.

Laz

[leapyrtwins]

Lois -

one of the "theories" behind acoustic neuromas is that they are caused by cell phones and cell phone usage.  Although studies have been done on this, the results are inconclusive.

There are also many of us here who aren't cell phone users, or weren't at the time of our diagnosis.

Your cell phone may or may not have caused your AN, so don't feel "guilty" about that.

I'm glad you're seeing a second doctor and hope that you like this one better than the first one.  If you find you don't, please let us know where you live and someone can recommend a doctor to you.
 
Jan

[Kaybo]

Lois~
I had a "huge" tumor" when I was 25 - if I had ever used a cell phone - which I don't think I had, they just weren't around 12 years ago - it was only a time or two.  I KNOW in my case that the cell phone had NOTHING to do with mine!

K

[Jim Scott]

Lois:

I just wanted to add my comment on your reference to cell phone use being the possible cause of your AN.  No one can say that for a fact but Acoustic Neuromas were known to exist over 100 years ago (found on cadavers used in medical schools) long before cell phones were invented.  I have long maintained that ANs are genetic.  Of course, that is pure speculation, just as the cell phone connection is.  Because ANs are located in the auditory canal area does not mean that they are generated by auditory stimulus or radio waves emitted by cell phones (in extremely low levels).  This is an ongoing debate with many opinions as to the cause of ANs.  Bottom line: no one really knows.  That being the case I wouldn't throw away your cell pnone or see it as a danger.

BTW: Laz (Larry) offered some very sound (and detailed) advice that you would do well to heed and I trust that you will.

Jim

[cindyj]

Hi Lois and Welcome to the site.  You've already been given good advice by others - I just wanted to second their advice.  My AN is actually very close in size to yours and while mine is not yet pushing on the brain stem, it is smack up beside it.  I am one who has chosen to wait to get another MRI in August (six months after my diagnosis).  Can't say I decided because it was the right thing to do, but more because I couldn't decide what the right thing to do was.  Hope your next doctor works out better for you - the doctor you choose for this is, obviously, so important.

Good luck, keep us posted and let us know how we can help,

Cindy

[wendysig]

Lois -
Welcome to this forum.  You will find many people here who are very knowledgeable and willing to help in any way we can It's good you're seeing another doctor tomorrow (? I think).  Getting second and third opinions is alwasy a good idea.  Learning as much as you can about the treatment choices available to  you  is a good idea so you can speak knowledgably with the doctors you see instead of them talking at and down to you.  My AN was origiinally just slightly larger than yours, but due to a sudden growth spurt is now 2cm, but these are usually slow growing tumors.  Because of the location of your tumor it may need to be treated sooner than later, but I am not a doctor and that is strictly my opinion.  Since it is near your brainstem, you will probably be told watch and wait is not for you, but this is just a guess on my part.  As Jan said, the ANA is a wonderful resource for information and you can get brochures upon request.  The internet is a fountain of information too, but while there is loads of good information, there are also some sources trhat are not as reliable.  Wishing your good luck in your research and consultations. 

Wendy

[pswift00]

Lois-

Sorry for your diagnosis.  Welcome to our small, very exclusive club.  I strongly suggest you get a second and third opinion from two more neurosurgeons.  Find a doctor you're comfortable with.  Before you go to either, learn as much as you can about your condition so you know what you're dealing with and what to ask.  Order the free packet from ANAUSA.  It has a ton of useful information in it.  Good luck!

[Mickey]

Getting back what may trigger an AN. My theroy is it may be helped to elvolve with the use of XRAYS the dentist bombards you with. Just my opinion, being I`ve had alot of those. Mickey

[Sue]

Hi Lois,

In my opinion, it doesn't do any good to figure out what caused an AN.  It might be something that is in the DNA that triggers these things to grow. Or not.   Or, as I like to think.....it's just one of those things, or words to that effect, usually not that nice!  Just know that it's not anything you did.  Stuff just happens, ya know.   I found this at a medical site: Apart from the link with type II neurofibromatosis, the cause is unknown. Research is being carried out into possible causes.**

 The only thing about your original post that I'd like to address is your statement that you'd just like to "leave it and not bother with it anymore".  We all wish that were an option, and I'm sure you were just venting, but that's not an option.  Not unless you are quite aged and the doctors think that the treatment might be more than you could handle.  I don't think this is the case! Eventually you will have to do something.  I totally agree with the other's that have posted here.  You've gotten excellent advice from these folks.  And I agree, don't let the doctors "bully" you into something that you aren't comfortable with.  Make sure you get yourself informed and find out which is the best option for your situation.  Find a doctor that you trust, and who is highly experienced. 

I, too, am sorry you are a new AN patient.  I hope all goes well in your treatment and eventual recovery. 

Sue in Vancouver USA

**  Here is another idea on the possible cause:

Acoustic Neuroma Gene: What Does the Research Say?
Acoustic neuroma research scientists believe that acoustic neuroma forms following the loss of function of a gene on chromosome 22. (A gene is a small section of DNA responsible for a particular characteristic like hair color or skin tone.)
 
Scientists believe that this particular acoustic neuroma gene on chromosome 22 produces a protein that controls the growth of Schwann cells. When this gene malfunctions, Schwann cell growth is uncontrolled, resulting in a tumor. Scientists also think that this gene may help control the growth of other types of tumors.
 
In most people with neurofibromatosis type 2, the faulty gene on chromosome 22 is inherited. For individuals with one-sided acoustic neuroma, however, some scientists hypothesize that this gene somehow loses its ability to function properly. At this point though, they do not know what causes the acoustic neuroma gene to lose its ability to function properly.