Newly Diagnosed With AN-Impacting Facial Nerve

[Sabre]

I just wanted to introduce myself and tell everyone how happy I am to have found this wonderful group of people that understand what I am going through.  I feel much better informed about my AN now since reading the literature the ANA sent me last week and the information I am gathering in the forums.  I was diagnosed in March with a 1.5 AN in my right ear although I have had symptoms for around 8 years. My first symptoms that I was really aware of were word recognition loss and tinnitus. I must have had some loss of hearing too at that time but didn’t realize it.  I passed these symptoms off as possibly “hormonalâ€? and didn’t see a doctor about them.  Then, about 3 years ago, I started noticing a “fullâ€? feeling in my right ear and a loss of hearing in that ear (which I was only aware of when I put my cellphone to that ear and realized I couldn’t hardly hear at all).  Every time I went to my GP for my fullness and hearing loss, he would put the tuning fork to my ear and say “you have fluid in your earâ€? and treat it with nose sprays and sinus pills.  So I went on like this for quite some time thinking “isn’t it weird that I don’t have any other allergy or sinus symptoms but this ear thing that won’t go away--but the doctor says this is what it is so he must be right.â€?  Then, in October 2007, my mom passed away. While coming home on the plane, I noticed that I had this weird feeling in my face—and guess what—it was on the same side as my ear problem. It was a hard feeling to describe to anyone and the best I could do was to say was that this side of my face just felt colder.  I waited a month thinking it was stress and it would go away, but when it didn’t I went back to my GP and he sent me for a scan to see if I had had a stroke.  It came back negative so nothing more was done for another couple of months. During that time, I just kept thinking that all these symptoms must be related (doh…all on the right side) so I went back to doc in February who sent me to an ENT who put a probe up my nose –twice- before sending me for an MRI and doing a hearing test. The hearing test showed that I had a 50% loss of hearing in that ear and word recognition problems. The MRI showed that I had an AN and so the ENT sent me to “the only doctor in the Hartford, CT areaâ€? that had treated ANs.  This doctor has me waiting until September when he will do another MRI to see if it has grown.  By the way he talked during my office vist, he seems to be leaning towards surgery for me “since I am in good healthâ€?. However, my inclination from the initial diagnosis is towards CK (and this was before I had really read up on ANs).  I would love to hear anyone’s thoughts on  “Is it a good idea to wait if you are already having problems with your facial nerve (I wouldn’t want that to get worse!!)? “ Also, would love to hear from anyone that has had CK and their thoughts/experiences with it.  Thanks again for this opportunity to share my “journeyâ€? with some folks that understand.
Oh, yes, one final thought…I try not to get too upset with myself for not pushing to find out sooner what was going on with me by consoling myself with the idea that they probably would have just put me in a “waitâ€? situation anyway (like I am now).  Always trying to look on the bright side of things But the good news is that I am trying to take control of the situation now (as much as possible) by being well informed and trying to figure out, based on all the available information, what treatment plan might be best for me.

[Debbi]

Hi Sabre-

And welcome to our little world - althoguh sorry you have to be here.  I was recently diagnosed, also - in early March.  Mine is a bit bigger than yours, and even if it weren't, I'm really not the "wait and see" type. 

It sounds like you are in CT?  If so, you might want to consider getting some second/third opinions - there are excellent doctos in both Mass and NYC with LOTS of AN experience, both surgical and radiological. 

You've probalby already seen that most of us chose to get several opinions - after all, this is our brain we're dealing with!  If you want additional information on neurotologists/surgeons, just reach out and you'll get lots of great recommendations from folks here, my included. 

Not being a doctor, I can only say that if I were having as many symptoms as you are having, I'd be inclinded to seek out other medical opinions at this point.  I believe that you will have more options now while it is smaller.

Meanwhile, we'll all be cheering you on!

Debbi - counting down in NJ...

[leapyrtwins]

Sabre -

Hi and welcome - sorry you have had to join us, but you've come to a great place 

I'm happy to see that you requested literature from the ANA.  IMO it's very helpful and explains everything in very basic, easy to understand language.

Some doctors lean towards surgery because that is how they personally treat ANs.  But a 1.5 cm AN should give you the option of radiation or surgery.  You should research both of these options before you make your treatment decision.

On the opening page of this website, there is a section titled "medical resources" where you will find a list of doctors who are experienced and qualified to treat ANs.  They aren't endorsed by the ANA, but it's a great starting point.  Also, as Debbi mentioned, there are excellent doctors in MA and NYC.  You can find feedback from others on this forum who may have used a specific doctor by using the search feature.

Don't beat yourself up about not finding out about your AN sooner, it happens to a lot of us.  It took me 3 months to see my ENT about my diminished hearing loss.  And believe it or not, lots of patients are misdiagnosed for quite awhile before someone thinks to send them for an MRI.  The important thing is that you have a diagnosis and know the reasons behind your symptoms, so that now you can decide how to treat your AN.

Best of luck,

Jan
 

[cindyj]

Hi Sabre,

Welcome to the site...you will find a wealth of information and support here!

I waited 2 years from the onset of my tinnitus before seeking any medical advice, and as Jan said, a lot of us here did the same thing.  I was diagnosed about 2 months ago and still have not decided which treatment to choose and many others here have taken much longer to make a decision.  I am too much of a newby to offer the insight that others here can give, but I can tell you it's ok to take a breath and take your time to take all this in and make an informed decision.

Good luck and ask away,

Cindy

[HCSTARWIND]

Hello Sabre,

Welcome to the forum. I'm sorry you have to be here too. You will find a wealth of information and support here.

I to  have a AN with facial symptoms similar to yours. I am also having some cervical spine issues which may be contributing to my symptoms. I am under a watchful eye by my PCP and Neurologist. I have seen a ENT, Neurotologist and and Neurosurgeon in Mass. All experienced in their field. I will continue to research more if and when I feel I need a course of action to treat this AN. I have been told no to radiation because of my facial symptoms but I have seen here on the forum that other have had similar symptoms and did fine with radiation. So for now I would continue to research, research, and research some more until you are well informed on all the couse of treatment for an Acoustic Neuroma.

I wish you the best of luck in your quest, and please stay posted. We newbies need all the support we can in persuing a course of action.

Take care. Helen

[Kaybo]

Sabre~
Hello!  Just a quick welcome & an echo of what everyone else has said -- there are so many different options and opinions out there..check them out before you make a decision.  We are all here for you...to answer your questions or just be a shoulder to lean on.  If you need someone to talk to that has "been there" please send me a PM w/ your phone number & I would be glad to talk to you!

K

[MaryBKAriz]

Hi Sabre,

I was diagnosed at the end of March and what a journey! I am sorry you have a reason to join us, the other travellers. What decisions ahead. I will put my 2 cents in. I suggest you see at least 2 - 4 doctors who specialize in ANs. Find out how many of the procedures they have done and what they recommend for you. If you find a center that does surgery as well as radiosurgery, they might be more objective in your options. For me, I was advised to go with radiosurgery, although all options were open. This is what I wanted, anyway. I am 59 so I think that had a play in it. But it all comes down to what YOU are comfortable with. I am looking at both CK and GK. We shall see.

Good luck to you!! Cheering you on.

Mary

[Denisex2boys]

Hi there - - happy to meet you but sorry you had to join this group   I am awaiting surgery - I have had the pre-admit - and just awaiting the call - - I have very, very dimished hearing on the AN side so that will be no big surprise to lose it - but I do feel sympathy for those who have good hearing and come out SSD ......  I hope yhou have a good journey through this all - as some have - and since I am a realative 'newbie' as well I cannot offer any real good advice - except educate, educate., educate on everything you can.....

[sgerrard]

Hi Sabre, and welcome to the forum.

I will focus a little on CK and radiation, since you have already gotten lots of advice on surgeons and options, and I had CK last fall.

The fact that your doctor mentioned age as a factor tells me he is going by the old 1991 consensus, not the more current view. There are good reasons not to do radiation, including brainstem exposure in some cases, the slow rate at which the AN dies, and the fact that the dead AN is still in there. But age as a factor is not borne out by the statistics; the rate of cancer from AN radiation is lower than the rate of death from AN surgery. You should also know that the facial nerve is not as sensitive to radiation as other nerves; in fact surgeons sometimes leave a bit of tumor on the facial nerve, rather than risk damaging the nerve, and then have the remainder radiated later.

After you catch your breath and relax, and go through some research on options, you can look up my past posts if you want to know more about CK. I have even posted a couple of pictures, including one where I am wearing the "Cyber Man" mesh mask.    Or just post questions here; we are always happy to answer them. By the way, I acted on my AN fairly quickly, in the interest of preserving the hearing that was left - also about 50% on the AN side - so I understand the idea of not waiting, since your symptoms are clearly developing. So far, the plan is working for me, and with a hearing aid, I can hear pretty well in both ears again.

Best wishes,

Steve

[Jim Scott]

Hi, Sabre:

Let me add my welcome to the forum and also the familiar caveat that I'm sorry you have a reason to be here but glad you discovered us. 

Your story is not all that uncommon.  Some years ago, I slowly lost hearing in my left ear but assumed it was work-related and/or 'age' and never saw a doctor about it.  Then, in early 2006, my symptoms became pronounced (including stabbing pains on one side of my head) and my wife pushed me to see a doctor.  After running down a blind alley (sinus) he scheduled me for an MRI and Viola!, there was an acoustic neuroma, big as life, positively glowing on my MRI scan. 

After one disappointing consult with a local neurosurgeon (who will mercifully remain nameless), I was referred by my wife's surgeon (spinal issues) to a New Haven-based neurologist - Dr. Issac Goodrich - who has over 30 years of experience operating on acoustic neuromas.  He was a very compassionate and confident doctor who saw my case as a challenge.  He advised that debulking the AN and then radiating it was the safest way to go to spare facial nerves, which were a major concern for me.  I hired this surgeon and he operated three weeks later (Hospital of Saint Raphael in New Haven), employing a nerve monitoring assistant. I came out of the surgery with no facial paralysis and almost no noticeable complications.  I was home in 5 days, driving within 2 weeks and pretty much back to normal within a month or so.  As scheduled, three months later I underwent a series of 26 'low dose' radiation treatments, painstakingly plotted by Dr. Goodrich and Dr. Haas, a very skilled radiation oncologist he works with.  The 26 FSR sessions were not fun but painless - and I had no side effects.  Now, almost two years post-op, I'm fine. 

I'm not a doctor and I can't credibly advise you as to what direction to go in to deal with your relatively small acoustic neuroma, but radiation may be a viable option.  It is non-invasive but does carry some risks.  Developing cancer is not really one of them, despite some surgeon's opinions on the matter. 

Because you live in my area (Connecticut), I'm going to post my neurosurgeon's website so you'll have another source to consider for consultation.  Although Dr. Goodrich is a neurosurgeon, he readily refers patients with smaller AN's to a radiation oncologist when he feels they would be better served with radiation as opposed to surgery.  http://www.ct-neurosurg.com/index.htm

I hope the information myself and others offer here will be of help to you as you grapple with this medical dilemma.  Technology has come a long way and acoustic neuromas can be treated very successfully, today.  The good news is that your AN is benign - and treatable, one way or another.   Stay strong.  I think you'll probably come through this just fine.

Jim