First talk with the doc

[concerned]

My husband experienced sudden hearing loss early last summer. Since then, he keeps adding symptoms: numb tongue was the next one, followed a couple of months later by numbness in his nose and face. He sounds pretty normal to me but says he has to work really hard to talk right and can't taste things so well. All the symptoms are on his left side. Next symptom: at the age of 49 he walks like the old man played by Tim Conway, only my husband walks a little faster. During all these months he has been to the dentist, his primary care physician and an audiologyist. The audiologist told him that he has severe hearing loss in his left ear, particularly in the high frequencies, and gave us the number of an ENT she recommended. The call didn't get made too fast and I was getting concerned. After multiple hours of time on the internet, I had it figured that he probably had an acoustic neuroma and that it could be pretty big. So I pushed him to make the call, and he saw the ENT who said he thought it probably was AN. We saw EMT and the MRI today: confirmed a 3cm AN.

The doctor told us that he has done about 400 AN surgeries, many of them with the neurologist he wants us to see. He feels that surgery will probably be our only option, but gave us the name of a radiologist and encouraged us to see him if we thought we might want to see if radiation therapy is an option.

So there's my newbie story. My concern now is that these symptoms just keep popping up. Now he has a hard time doing thinking tasks. He doesn't seem overly confused or disorganized (compared to say five years ago) to me, but he says he has to work so much harder to look the same as ever. The doctor encouraged us to have the surgery soon. My biggest concern is that as we wait, more nerve tissue will be involved and ultimately lost with the removal of the tumor.  Have any of you had symptoms stack up relatively quickly? He has gone from pretty much symptom-free (including a hearing test last April) to where he is now. Am I just to jittery?

Thanks for your input.

[sgerrard]

The timing and pattern of various symptoms seems to cover a very wide range with acoustic neuromas, so there is really no telling whether he is in for more, or already reached his max. It is not unusual for a tumor to grow quite large before any symptoms show up.

The difficulty walking is troubling, it could be pressure on the brain stem, which usually indicates that surgery soon would be a good idea. 3 cm is about the upper limit on radiation, so it may not be an option in your husband's case, but it doesn't hurt to ask. I would not worry about losing more nerve function over the next weeks, but I would also not wait around all summer to seek treatment.

Best wishes to you both,

Steve

[leapyrtwins]

I agree with Steve, I would start researching treatment options fairly soon as it sounds like your husband's symptoms are just getting worse.  At 3 cm his AN may be too large for radiation, but you never know.

The most important thing is to find a doctor or doctors experienced in treating ANs.  There is a list of doctors on the opening page of this website under "medical resources" and people on this forum are also more than willing to recommend doctors who have treated them.  Some may have even been treated by the doctor(s) that your husband has seen or has been referred to.  It would be helpful if you told us where you live.

There is also some very good general information on the opening page of this website under "overview" where you can find out more about acoustic neuromas, how they are treated, etc.  The ANA will also mail you information if you want.

Jan

[trhoads]

Well, as for me, I went to sleep fine one morning (I work nights), and when I woke up in the afternoon, the entire room was spinning, my eyes were rolling around in my head, and I could not walk due to the dizzyness.  The doctors were convinced it was viral for about 2 weeks, and then finally did a MRI, which showed a very small tumor (less than 1 cm). 

So, I had a small tumor, but was very symptomatic ..... and the symptoms arrived very suddenly.

I wish you and your husband the best of luck.

Tonya

[Kaybo]

Hi!
I could be totally off here, but I think that if you will really look back, you will find so things that you can attribute over the last few years to the AN.  I was very young and had a very large tumor, but we still can think back to instances that make sense now...even to my teenage and college years!  I know that EVERY AN is different and grows at different rates.  If I can help you in any way or if you just need someone to talk to, please let me know.
K

[Kate B]

During all these months he has been to the dentist, his primary care physician and an audiologyist.

Welcome. 

Your story reminds me of my various trips to doctors at the beginning.  My presenting symptom was dizziness.  I felt like I was listing to the left.  I went to an ear doctor (had 100% hearing which threw everybody off any ear issues), an eye doctor, and an internist.  Ironically, my eye doctor was called away and I saw his daughter...Newly out of school. My eyes checked out the same,but she told me she had a flow chart related to dizziness.  There were four boxes: eyes, ears, neurological, and stress.  I had ruled out eyes and ears and stress. I went to the internist and was told it was the flu.  I remember thinking I would give it the two weeks suggested.  Then I went back and  remembering the flow chart asked if I could have an MRI.  Sure enough, my little ice cream cone appeared brightly on the MRI...

That being said, at 3 cm you may be on the cusp of radiation and surgery.  I know Dr. Kondziolka out of UPMC shared that 3 cm was about the largest.  It might be worth an email to him.
University of Pittsburg Medical Center (Dr. Kondziolka and Dr. Lunsford) (UPMC is a well known radiosurgery center for ANs. They have published several peer-reviewed studies on the subject.) http://www.acousticneuroma.neurosurgery.pitt.edu/

Also, House Ear will read your husband's MRI for free and do a phone consult. It is worth sending a copy of the MRI's and his report. 
HEI
Send the MRI scans by express delivery (be sure that you are able to track the package) to:

House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057

You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or fax a House Ear Clinic physician at:

Telephone: (213) 483-9930
FAX: (213) 484-5900

This mail/telephone consultation is free of charge. (This offer does not apply to office consultations.)



All the best,
Kate

[Jim Scott]

Concerned:

Your husbands symptoms are almost 'classic' for an acoustic neuroma.  As Steve ('sgerrard') mentioned, each AN patient usually manifests symptoms a bit differently.  One reason is due to the fact that AN's grow in different directions and at different rates.  Some sit almost dormant then begin a growth 'spurt' that brings on symptoms seemingly 'out of the blue'.  Your husband's symptoms seem to be within the normal range and mirror many of my own symptoms (loss of taste, dizziness, numb tongue).  I'm sure other posters will say the same. 

At 3 cm, your husband's AN is very near the maximum size for radiation treatment, but that is a decision for a radiology oncologist to make.  Although non-invasive, radiation treatment is not risk-free.  Surgery is obviously more complicated and requires a hospital stay - usually 3 -5 days if no complications arise - and also carries risks, as all surgery does.  There simply is no 'EASY' button to push when it comes to AN treatment.   I would caution you and your husband to be very discriminating as to the surgeon you use, if surgery becomes your choice or only option.  The surgeon's experience in operating on acoustic neuromas is vital to having a good chance for a positive outcome.  I maintain that 400 AN surgeries should be the minimum level of experience for a surgeon.  I would also ask what kind of outcomes this doctor has had with his AN surgical patients. 

You and your husband may also wish to consider a two-stage treatment of his AN, as I had.  The neurosurgeon debulked the AN.  Hollowed it out and cut off it's blood supply.  Then, after a 3-month 'rest period', I underwent FSR to kill the AN's DNA and prevent it from re-growing.  It worked.  This approach spares possible nerve damage (my surgeon used a nerve monitoring assistant, flown in from out-of-town) and has had excellent results where employed, as far as I know.  My recovery was swift and near-total, and I had a large AN (4.5 cm).  On this basis and as a patient, not a physician, I highly recommend surgery and radiation. 

Ultimately, it will be your husband's decision - with your input and support, of course.  There is much AN information available on this website as well as elsewhere online.  I suggest you utilize it - and please consider consulting with more than one surgeon.  Remember, no matter what any doctor says, your husband will have to live with the results of his treatment (surgery and/or radiation) and no doctor can guarantee the outcome.  So, it's up to you both to be as cautious and discerning as possible as you choose a treatment and doctor to perform it.  We want the best for your husband and we're here to help any way we can.  Please stay connected. 

Jim

[concerned]

Thanks to all who replied to me. There is lots of helpful information. We are in the Albany, NY area and have seen Dr. Parnes(ENT). From the feedback I get from local folk, he is very good and quite active with the AN support group here. We see Dr. Semenoff(neurosurgeon) In a couple of weeks. My husband tends to want to do whatever the doctor says and ask only a few questions. He is fine with me asking all the questions I want, but he doesn't really want to hear all the discussion.

I have been researching various options for thelast month or so. I have found both the House Ear Clinic and the University of Pittsburg sites very helpful. I did not realize the House Clinic would look at his MRI and report and give us some free phone consult. That may be something we can do.
I am developing my own list of questions to take to Dr. Semenoff. My husband has his own list, mostly about goals, risks and recovery time.

Again, thanks for the support. As all of you know this is a rather difficult process. From my perspective, we are doing ok so far, and I know we will continue to ride a roller coaster, as with any serious health issues. We have a wonder support network already, but it is good to be able to get inpur from people who have been through the process.

[leapyrtwins]

Concerned -

thanks for updating us.

Despite your wonderful support network, don't forget about us.  We are here for you and your husband, and we are more than willing to give you both our support.

Jan

[concerned]

I haven't forgotten!  Crazy times, these! I am so glad that I found the ANA website. At present we are simply waiting to see the neurosurgeon. After doing a bit of checiking around I have heard that both the otoenterologist and the neurosurgeon my husband is seeing are quite experienced and have a good record for an surgeries.

I have been reading a lot of posts on this forum and they are mostly really helpful to me.

Thanks again.

[MaryBKAriz]

Hi concerned,

I think it is normal to feel jittery. Seems like it would be odd to be perfectly cool calm and collected 24/7 with this kind of news. You are a great wife and that will help you both get through this. My AN is smaller, and plan on a radiosurgery treatment...although mine is small, it is mighty and making itself know. I would definitely check with other doctors even though you know good things about yours. I did that and it gave me a lot of peace and conviction that my first doctor was my best bet. I consulted via email Dr Chang at Stanford about the CK. He wrote right back. I was really impressed. I am happy with Dr here so I will just recommend you contact him.

Take care,

Mary

[Denisex2boys]

Hi there - I just saw this post .... I have the Dr. Parnes / Dr. Lownie team in - I am currently awaiting my surgery ....

[leapyrtwins]

So, Denise -

do you have any indication of when you might possibly be having surgery?

And once they do let you know, do they give you a few weeks notice? or is it only a few days?

Jan