Freaking OUT, crying HELP

[kjmema]

I think it's just sinking in.  This is for real!!  My AN is very small, ( 3mm) and was discovered because I'm having some sort of trigeminal nerve problem on both sides of my face and thus an MRI...The more I read the more upset I become.  It's just going to get bigger and then I'll go deaf or have terrible headaches and stumble around.  It's just all so confusing and frightning.  I guess I just need someone to calm me down...My husband is just sort of blank on anything medical and although he says the right things I can tell he is not too concerned, and I don't want to involve my grown children.  I fell totally alone and frankly scared to death...I thought I had a real handle on things but I just keep reading and crying.  I'm in a relativly small city and don't really trust the doctors here but the thought of going to Mayo or Mass General is just overwhelming.  Just getting a second opinion is daunting...AND I still have this numb face which seems to be unrelated.  I was so healthy until three months ago when I got some virus.  Then my face whet numb and now this.  I know others have it a lot worse and I should be thankful it's so small but what the heck.  It's going to GROW so I'll be in the same perdicament as everyone else.   I fell like a time bomb.  OK I've vented so I'll try to go to bed and not sleep...I don't even want to put up a Xmas tree.

[Larry]

hey Kjmema,

Don't panic, relax, you are in good hands on thsi forum. You have come to the best palce for advice. You will get lots of views and having been here for a while now, the views will be pretty consistent. there are so many differnet impacts of AN's and also so many different treatment options. Oh, and there are a great bunch of people on this sit who are the, amongst so many other good things, most caring people I have had the pleasure to liaise and meet with. We will hear your vents and offer you lots of care back.

I know its difficult but please give us the full details such as exactly where you are, the doctors you have seen and the hospital close by. Info on your MRI would also be useful such as the exact wording on the radilologist report. Your age would also be useful.

Sorry for sounding so "nosey" but the more specific info you give, the more of a match someone on this forum will be to your predicament.

There are lots of really good places in the U.S for you to go and some will give you advice by phone if you send them your MRI's.

There are numerous options you can do to rid yourself of this AN. I won't go into those options just yet because it's best you share your details with us first.

Laz

[kjmema]

Laz, thanks so much for  answering...I'm 64/F and live in Springfield, Mo.  I'll try to post a picture tomorrow if I can figure how to do it so you can have a face with the name.....I had an MRI on Friday the 24 with the contrast.  I no more than got home then the phone rang and they wanted me back for another "view"   I knew something was up.  In Aug. I got a viral infection.  I was diagnosed with Bronchitis and put on antibiotics but it turned out to be a virus.  At any rate I had a lot of fatigue and some congestion.  Nothing to be concerned about.  Then on Aug 26 I noticed my face was feeling funny around my ear and behind my ear. My teeth or jaw on that side hurt.    I wasn't too concerned and thought maybe I had some fluid in my earor a tooth problem.  The dentist checked that out.  The numb feeling started to spread until it was on the entire side of my face and head.  I was exercising at the time and every time I would get my heart rate up I got a headache.  The doctor did an echocardiogram and a pulmonary stress test to rule out any heart problems.  All those were fine.  I went to an ENT for my  congestion and runny nose and numb face and they thought it might be sinus related. Had a CT which was clear.  Just last week I had my annual physical and when I became a bit more assertive regarding my numb face my Internist ordered the MRI.  I have an apt. with an Neurologist in Jan but told the doc  I didn't intend to wait that long for an MRI, so he ordered it.   He just called this afternoon with the results.  His feeling is that the AN is so small that it couldn't be causing the face problems and he's calling the Neurologist tomorrow for a consult.  I'll need to get more information on the exact location.  He said it was an Acoustic Schwannoma but from what I read that is the same thing.  I'm a pretty upbeat and calm person so my reaction is pretty "out there" for me.  I guess I'll just have to wait and see what the neurologist says.  OH as a side note the ENT assured me I didn't have an AN.    I'm calling him tomorrow to inform him he was wrong.  The problem in our city is that we have two hospitals and your insurance is either with one or the other.  I can go out of our network and luckily have good insurance but the doctors in my network all know each other.  You can't just get a second opinion within the same group of doctors.  They all pat each other on the back.  I told my doc. today when he called that if I even needed surgery I would probably go to one of the larger centers and he didn't like that one bit.  Said we have really fine doctors here.  Yea right.  The really great doctors just flock to a little city of 150,000.   I'll find out more by the end of the week. Thanks again.  I think I'll sleep better just knowing there are people to share this with...Anyway we have our first ice/snow storm hitting tonight and that's always exciting.  I love snow....Thanks agian,  Karen

[tony]

I saw your note - I think most on this list go through those feelings
So a couple of things to consider
1) at 3mm it must be one of the smallest discovered
(I am amazed they saw it at all)
- they tend to grow at 2mm per year on average (?)
so to some degree time is on your side
(its possible you may have lived on with strange symptoms for 10 yrs or more
before it was discovered - check out the "How many were mid-diagnosed thread")
- 6mths looking for treatment is unlikely to change things very much for you
2) at that end of the size spectrum the outcomes tend to be
the more easy and predictable
3) you would seem to have options of radiotherapy or surgery
the key to the success of either is the experiance and track record
of the teams you choose
(Clue : the best will have treated 100 or more)
My suggestion here is you repare for some travel to get answers
Once you take charge and start to meet with the medical teams
you will start to feel at bit better
Good luck in your search
Best Regards
Tony

[Sue]

Hi Karen,

I am so sorry about what you are going through right now.  We've all had varying degrees of the same anxiety that you are experiencing.  I have facial numbness on my AN side (left) but that showed up about a year or more after my first symptoms appeared.  Stick to your guns about seeing the best doctors that you can see.  You will get a better picture of what is going on with you after you see a specialist in AN treatment.

There are some wonderful people on this forum who have a lot of knowledge about this and I'm sure they will chime in with their 2 cents worth shortly.  The main thing is not to panic and to take deep breaths.  It's not the best news to get, but it's not the worst news either.  I remember feeling like I'd entered a Road Runner cartoon and I was the one trying to cross the railroad track.  Remember those cartoons?  Nothing coming for miles in either direction, until you step out into the track and then WHAM!  That's how I felt...like I'd just been hit by that train.  But, in reality, after the initial run down, you just get up, dust yourself off, and figure out how to deal with this thing and then get on with the rest of your life. I won't kid you...you will be different.  There is a new "normal" to deal with, but most of us have managed to, well, manage it.   Please remember also, that there are many people who have posted here, had their treatment, everything went fine, and they aren't posting here anymore because they have no more need to do that.  You are lucky that they found your AN while it is quite small.  But, as you know, some small AN's can still cause quite a ruckus, depending on exactly where they have decided to grow.  As I said earlier, your specialist will no doubt shed some light on that situation.  Take care, and know that this is a great place to vent your fears and frustrations (and sometimes we have a laugh or two) and to get some information.  

Sue in Vancouver USA

[Boppie]

Hi, I just read about your numb face and the "virus" diagnosis.  Even though you have heard the statement that you have an acoustic Schwannoma (another term for AN, acoustic neuroma), coincidentally, you might also have some facial palsy from the virus (perhaps it was called Bells Palsy).  The virus gets on the nerve root and affects the face for a time.  But there is no connection or proof that Bells Palsy virus is causative for an acoustic neuroma.

So, in support of your valiant efforts to get good doctoring you could have gotten a proper diagnosis on your face.  Usually the numbness of Bell's clears itself over time.  

Having said that, there are many ANers who experience facial numbness from their growing (larger) ANs.  It sounds as if your schwanomma is small and your treatment plan can be approached with slow study and careful decision making.

I, too, live in a small town, 65,000 people.  My ENT and PCP sent me with their blessing to Houston to get the best treatment.  I respected them for handling my case this way, even though the PCP treated me for ear aches for years before I got to diagnosis.  You will come to terms with your doctors at home.  They are human and don't accept comparison as easily as we'd hope.  

Your AN is very small and you have plenty of time to decide what to do and where you want to get treatment.   You have come to a good place to get information.  You are not alone.

 Ã‚ 

[Obita]

Hi Karen and welcome:

Please put up the Christmas tree.  It might take you mind off of your small BENIGN tumor.  If you are going to find an AN, small is what you want!! 

I felt just like you do.  All of us have.  Try and believe us, the shock will wear off (focus on how much worse it could be if you need to, I did) and you will settle down.  The more focused you are on dealing with it, the better you will feel.

Seeing a Neurologist for your facial issues is a good idea.  It sure does sound like Bell's Palsy.  I know two people that have had it in the last 6 months.  Both are fine as it needs to run its course.

As for the AN, you should see a Otologist/Neurotologist.  All of the big teaching medical centers have at least one.  They specialize in the workings of the inner ear and would be better able to give you the answers you need.  Check Road Trip Dales posts on here.  He had his surgery in Kansas City and couldn't have had better results.  His Otologist/Neurotologist is a name like Leutje (sp)??

Good luck Karen,  Kathy

[Cheryl R]

Hello.     Your AN does sound pretty small for causing the symptoms that you have,          I have heard of people who have posted who went to St Louis for treatment and also Kansas City as mentioned above.     The Univ of Iowa also has a surgeon who does AN's on a weekly basis so that might be a possibilty to look into.                 www.uihealthcare.com           I am pleased with my care there. 
    Good luck to you,                          Cheryl R

[kjmema]

I feel like a new person just reading all these nice replies..I stayed up late and did a lot of research and have come to the conclusion that I will live...LOL...If eventually I go deaf than my husband will have to yell at ME for a change.  As for the facial numbness/paresthesis Bells has been ruled out.  That was the first thing they  thought of.  I was familiar with that as my daughter had a round of it.  Also the numbness is spreading to the other side of my face. I'm pretty up to speed on the face issue as it's been going on so long that I've read a lot. I just have to wonder if there is a connection.   
At any rate, I'm sipping coffee and waiting for all this snow they have predicted.  I grew up in TX and still love snow.  Right now it's ICE Baby sitting grandkids tomorrow night and yes, I'll put up the tree today.  Thanks for all the on line hugs.  What would we do with out computers???

Also a HUGE thanks for the KC doctor info.  Now I'm going to try to put a picture on my profile.  It seems rather complex but I'll give it a shot....Thanks again...It's amazingly reassuring just having this site bookmarked....Karen  (my real name.  I'm not to worried about idenity thef.  At my age they can have it) 

[Obita]

Karen:

See?  12 hours later and you are better already!!

I found out about my AN at 7:00 on a Friday night.  "Hi Kathy, this is Dr. Ayre." - holy crap, a doctor is calling me on a Friday night - its a tumor, I just know it, was my first thought before he had a chance to tell me the news. 

In shock, call my family, get on the internet, get a grip, calmly walk in to my boss's office Sat. AM. and tell him I will be needing some time off in the near future. (Mine was big and touching the brainstem. Needed it out very soon) 

Ah Karen, it seems like yesterday some days and others, it seems like decades ago.

Kathy

[Derek]

Hi again Karen...

Just reiterating the good advice that you have already received from the knowledgable folks here and a belated welcome to our exclusive club.

Be reassured that at 3mm there is absolutely no need to rush into any treatment options for your AN. In the interim just carry on as you have started by doing as much research as you possibly can in order that you can ultimately make a decision that you are comfortable with and which is the right one for you.

 You are of a similar age to me and you will see from my signature that I am almost 5 years since diagnosis. My AN has only increased in size by 3mm since diagnosis in 2002 albeit that of course varies between individulas.

I am more than happy to remain in the 'watch and wait' mode based upon good medical advice and regular MRI scans. I am also a supreme optimist in that there is a school of thought that advocates the older you get the less the AN grows and therefore I live in hope that I may never require any treatment!

 Based on your age; the present size of your AN and the average annual growth rate of 2mm, you could well be in your 80's before having to decide whether to have microsurgery or radiosurgery!

You have an obvious good sense of humour which will help you enormously and you now have a whole new set of pals who fully understand how you are feeling and who are always here to help you along at every stage of your journey

So glad you put that Christmas tree up Karen!

Very Best Regards

Derek

[kjmema]

Obita,
You gave me a good laugh...My doc called at 4:30 and when he said Hi, this is Doc. Scott I said, "I don't want to talk to you"...But I did and hopefully won't get a bill...And Derek I do indeed have  a good sense of humor.  Lost it for a few hours but it's back...If it weren't for the facial problems I would just put this  on the back burner but with my face going numb and both ears feeling strange I'll have to keep moving forward for a diagnosis.  NO treatment of the AN in the immediate future unless it is in some totally strange place. 

You guys are great....

[FlyersFan68]

The initial phase of diagnosis is the hardest. It was shortly after Christmas when I found my AN in 2003. Go ahead and put up that tree this year and don't deny yourself anything that may cheer you up. If perhaps one day you do go deaf then remind yourself you have another. There are 60,000 new cases of single sided deafness each year in the country. If you don't want surgery or radiation then wait and watch. What I'm getting at is that there are always options. Very rarely tumors will arise directly from the facial nerve which may be your situation. Maybe the numbness is caused by smething else entirely. Seek out good physicians and get good advice. Also, please know that everyone that elects surgery is not guaranteed to have permanant headaches. I had surgery and very rarely get headaches. I cannot even remember the last time. I'm sure others werent as lucky. I think you may be a good candidate for all options namely 'waiting & watching". There has been some suggestions that GK may relieve TN but not everything is proven yet. The more you research the better you will feel knowing that you do have options and there is help right here. We all know firsthand how you feel. The mind can easily storm out of control so please try to relax and take control. I wish you the best and make sure you put up that tree and enjoy every minute...

[vcschaub]

Small tumors can cause many symptoms just as very large tumors may have very few symptoms. I was diagnosed at 4mm because of dizziness, and lack of balance, along with ear fullness. My an grew to 6mm in a year and my hearing deteriorated 15% during that time. At that point I chose surgery. My balance is great now and my hearing in my an ear has stabilized at 76%. Tumor size and location result in symptoms that may vary widely

[Sheryl]

Karen - just had to jump in with my two cents worth!!  I just turned 60 and five years ago had an MRI because of a bad headache - what a surprise -- you have a brain tumor.  It was difficult even saying the word for a very long time.  The headache turned out to be due to a blood pressure problem.  At the time, the schwannoma measured just about 9 mm, although a second opinion with a  neuroradiologist feels it was under read, and was actually a tiny bit larger.  Anyway, yesterday I had my yearly MRI since I have been a "wait and watch" patient for those five years and it measures 12 or 13 mm which is the same for the past two years.  In fact, the neuroradiologist said it quite possibly could be a bit SMALLER!!! Over the years, I have gone to different facilities and have had different technicians and they call small changes "technical" differences.  I feel I have minimal symptoms - some ear fullness, some aching on that side of my face (do have to check out a wisdom tooth problem), some very minor balance issues, but nothing that I would rush into surgery for or, at this point, even radiation.  Please keep us posted and I wish you good health.