I think I will be a newbie on this board

[ncutt]

for my husband actually.

It all started with a sinus infection.  His right ear was ringing, hurting and he couldn't hear out of it.  The sinus infection finally went away, but his ear problems did not.  Our little town's nurse practitioner sent him to an audiologist this last Thurs for a hearing test before referring him to an ENT. 

Well, he walked out in shock, thinking his life was over, as she thought he had a tumor in his inner ear canal.  He's had several family members die from brain cancer.  I called the FNP as soon as we got home, wanting a referral to an ENT, upset that the audiologist upset my husband.  He firmly states that Les (my husband) needs an MRI first, won't take any arguments from me.  (I do like the man, and consider him a friend.) 

So, in the meantime I research on the internet and come up with this wonderful group.  On Friday, I call my FNP (family nurse practicioner) back to inform them I want an MRI with contrast.  No problem, he already had that written down.  So on Friday afternoon the imaging place calls for my insurance info and some questions.  Guess it has to be pre-approved and that takes a couple of days. 

I thank this group for preparing me with at least some idea of what is going on and what may happen.  Les does have some numbness on the right side of his face also. But never really paid any attention to it and his ear problem.  This is a man that would ignore everything until he died or just couldn't stand it anymore and would probably ride his horse off his cliff.  (Make that his car, he wouldn't hurt an animal.)  He is starting to absorb some of the possiblilities and hopefully by the time we get the results, we will have a plan in place depending on the outcome.

So, what is the next step after the MRI?  My FNP will refer me to anyone that I ask, and HEI sounds like the place we would want to go.  Hopefully our insurance will allow it.

Thanks, SO much, again.

Les and Norma
Malin, OR

[sgerrard]

Hi Norma,

Welcome to the forum. I see that Malin OR is way down at the south end of the state, pretty far from Portland where I live. Still, on the Internet you seem like a neighbor.

The first thing of course is to wait and see what the MRI reveals. It might not be an acoustic neuroma after all. If it is, I think your idea of contacting House is a good one. Depending on size, you may also want to look into Gammaknife or Cyberknife radiation.

Here is a link for House, I believe they are still doing free phone consultations if you mail them your MRI:

http://www.acousticneuroma.org/contact_specialist_acoustic_neuroma.htm

Best wishes,

Steve

[ncutt]

Thanks, Steve!

Yes, I always put the cart before the horse....

[epc1970]

Hi Norma
I am not from Oregon but my brother and sister in law live in Portland and both work at OHSU in Portland. When my AN was diagnosed, they put me in touch with Dr Johnny Delashaw and his partner Dr Sean McMenomy at OHSU. I ended up going to them for my surgery-I'm from Maine-and never regreted the choice! If you want to stay in Oregon if you do ,in fact, have an AN, Dr Delashaw is wonderful! As far as the next step, after you have your MRI and diagnosis if you do have an AN, you will need to investigate your treatment options which are largely dependent on the size and location of your AN. You will want to consult with Drs. who have extensive AN expirence like House and Dr Delashaw. I wish you well and please keep in touch and let us what your MRI shows.
Erin

[ppearl214]

Hi Norma and Les and welcome.  Well, as your research has shown, an  MRI with contrast is one of the best ways to rule out a "mass" (ie: AN).  Like you, I have to have MRI's "preauthorized" and its been a painless effort on my dr's behalf to get them approved.

Please keep us updated on the MRI status... hoping that its "clean" and that there is a simple and easily fixable reason for what is going on with Les.

Wellness wishes and good vibes from the "best" coast to the "left" coast!

Phyl

[JerseyGirl2]

Here is a link for House, I believe they are still doing free phone consultations if you mail them your MRI:

http://www.acousticneuroma.org/contact_specialist_acoustic_neuroma.htm

Yes, House is still doing the free phone consultations -- a wonderful service! You should consider expresss mailing/Fed-Exing  a CD version of your MRI, along with the audiology report.

Best wishes as you continue your research!

Catherine (JerseyGirl 2)

[tenai98]

welcome Norma and Les
You have found a great little family here.
JO

[ncutt]

Thank you, all. Whatever the diagnosis, I do feel better informed.  He just has all the syptoms of an AN.  I just don't want it to be something worse. 

Thanks, Erin.  Dr. Delashaw was my second choice.  I have a friend who had a tumor removed by him.  We are familar with OHSU, my youngest son had testicular cancer six years ago and was treated by Dr.Craig Nichols.  He was one of the two doctors that helped save Lance Armstrong.  Small world, isn't it?

[wendysig]

Hi Norma and Less and welcome,

As everyone else has said, getting the MRI and learning the results is the first step to getting a proper diagnosis.  I hope Les' problem turns out to be something simpler than an AN, but please assure him if this is his diagnosis, there is life after AN.  If you look under AN Community you will see posts and pictures from a brunch/get together the NY/NJ gang had yesterday.  I think that although some of us have or had obstacles to overcome, most of us are doing well or are well on our way.  Seeing and reading this thread might with your own eyes might be a psychological boost to both of you.  Getting a phone consultation from House is a wonderful idea and is something many of us have done and found helpful.  Pleaseeel free to ask any questions and be sure to  keep us posted.

Best wishes to both of you,
Wendy

[leapyrtwins]

Hi, Norma and Les and welcome 

As others have said, wait for the MRI results before getting too hyped up.  Symptoms of acoustic neuromas are varied and some people who think they have one, turn out not to have one at all.

That said, if Les does have an AN, we are here to help in any way we can.  The ANA also offers some wonderful brochures that I recommend you ask for - the information in them is invaluable.

While HEI is generally considered the gold standard of AN treatment - usually if the patient chooses surgery - there are numerous places that do just as good a job.  I know this from experience - my local neurotologist and neurosurgeon did an incredible job removing my AN - and there are lots of others just like me out there.  The main thing is to find a doctor who has lots of experience treating ANs.  As Steve mentioned, radiation may also be an option for Les, if he does have an AN.

Please keep us posted on the MRI results.

Best,

Jan

[CHD63]

Hi Norma and Les .....

Just adding my welcome to this little group, well actually quite a large group.  You have already received good advice about waiting until you have the MRI and the results.  We are waiting here and ready to support and answer questions to the best of our ability if it truly is an AN.

Thoughts and prayers for peace as you await the diagnosis.

Clarice

[Kaybo]

Norma & Les~
You have already received such good info - just dropping by to say "Hi! and Welcome!"

K   

[Jim Scott]

Hi Norma & Les ~

Not much left for me to do here except congratulate you on finding the ANA website and taking the initiative to register and post your message, even though an MRI hasn't been performed on Les as yet and so there is no way to know if he has an acoustic neuroma.  I admire your determination to be prepared but I hope the MRI proves it unnecessary, after all.  The plan to contact the House Ear Institute, should surgery be indicated, is prudent.  There are usually local neurosurgeons that can perform AN removals but the fallback is often HEI, which has a sterling reputation.  

Norma, your description of Les could be a description of me.  I foolishly ignored the symptoms I had; slowly increasing unilateral deafness, intermittent stabbing pain on the side of my head (internal), loss of the sense of taste (and 30+ pounds from a severely diminished appetite), imbalance, etc.  The appetite loss finally alarmed my wife to the point where she made an appointment for me with our Primary Care Physician.  He sent me for an MRI, suspecting a 'sinus problem'.  My sinuses were fine but the MRI showed a 4.5 cm AN in my skull.  Surgery followed a few weeks later, radiation followed that a few months later (planned) and now, three + years later, I'm fine.  I sincerely hope that, should the MRI scan indicate an acoustic neuroma, Les will be able to experience a successful surgery and/or radiation.  The folks here will certainly be rooting for him as well as offering advice (when asked for) and our 100% support for both of you aif and when you are forced to embark on the 'AN Journey'.  Let us know what the MRI shows and what happens next. Thanks.  

Jim

[ncutt]

Thanks, SO much, everyone!  Yes, I can hardly wait for the MRI!  Sheez!

As, I said, I am really good at trying to put the cart ahead of the horse.  I was talking today to an intern friend of ours and he gave me some other possibilities of what it could be.
Since this started with a sinus infection and Les had to go through two rounds of antibiotics to clear it up, it may be suspicious.  And guess what, he may have come down with the sinus infection, again.  He has a sore throat and pressure in his forehead.  So just maybe, this isn't an AN.....

Will let you know when we get the MRI scheduled and  how he was progressing.  You guys are awesome.  I cannot express how much I SO appreciate your feedback.

Sincerely,

Me and Les

[ncutt]

Well, Les had a recurring sinus infection, so we went to the emergency room on Mon, where they first did a cat scan and saw something suspicious on the left side of his brain and some polyps on his sinuses on the left side.  So then they did an MRI with contrast (on my request).

The good news is no tumor and the suspicious area was nothing!  Can they possibly miss it? 

Was fortunate to get him in to the town's only ENT today and he looked in his ears, throat, and nose and then proceeded to tell us that Les had a dead auditory nerve and would not regain the hearing in that ear.  We both kinda sat there in shock and I forgot to ask my questions that I had wanted to ask.  Guess that is why you should always write them down.  We left and are supposed to go back in a couple of months.  Once we were out of there and on the road, I decided we would like a second opinion, but needed to sign a paper to release the medical info.  So we went back and I talked to the office manager , who we knew , explained what we would like and told her I was concerned that the sinus infection might be fungal.  Naturally the doc was swamped, so I said he could just call.  After leaving, I was discussing the situation with my son on the cell phone out in the hall.  The office manager (bless her soul) came out and offered to refer Les to an otologist in Bend or OHSU.  She said he may get in sooner in Bend, so now we are just waiting for a phone call for another appt.  Why did not the ENT mention this earlier?

Anyway, good news, no tumor.  And hearing aids won't be a hard sell with him anymore.  But I keep thinking that this might be something to do with his sinuses.  Wishful thinking, I guess.  Can I still be a member of this group?  You guys are just so awesome.

Thank you for all your support, which is more that we have gotten from the medical field this last week.

Norma