AN Diagnosis today and a baby on the way

[seavol]

Just received the disappointing news that it app there is a small lesion apprx 2 x 3 x 3 on my right side. I'm a bit panicked as my wife and I are expecting our first child, we are moving into a new house, and  scheduled to start my MBA in a month and now wondering what this means. I've only noticed a reduction of hearing in one ear w/ some fullness, but haven't had other symptoms I've read about. I'm sure I'm going through a lot of emotions right now but thought this forum might be able to help out. What to expect, what options to look at, and how to deal w/ it and when to have surgery.  Appreciate the help.

[CHD63]

Hi seavol and welcome to this forum of caring, supportive new friends .....

First of all, take a deep breath ..... hard as that may be.  You will get through this and life will go on again.  If your lesion is 2x3x3 mm it is very small and you have time to do your research and choose your physicians wisely.  If it is 2x3x3 cm, you may need to act sooner but you still have time to consider your options.  ANs typically only grow 1-2 mm per year (on average), but occasionally they can take growth spurts so they need to be monitored while awaiting treatment.

Let us know whether your AN is in mm or cm and gather any questions you may have.

In the meantime, send for the free ANA information packet for a wealth of accurate information.  https://www.anausa.org/contact-us

Thoughts and prayers.

Clarice

[seavol]

Thank you for your kind note. It's been a year of changes and after spending a lot of time reading the boards I'm encouraged by the stories and everyone's willingness to embrace changes in life.I was also ready about doctors to see and was wondering if it is worth visiting out of town doctors. I reside in Portland but after reading about a lot of Drs in LA wondering if it is worth the trip or does anyone have any recommendations for Drs in Portland? Can't seem to find any but assume OHSU would be the best hospital.

Also, i read a lot about hearing loss and am curious what is the levels of hearing loss people experienced?

Thanks for the help.

[CHD63]

Hi seavol .....

Many of us traveled great distances to have the best treatment possible.  However, this is an individual decision, based on many things.

I, for one, decided I wanted to increase my chances for a successful outcome and flew across the US for my surgery in LA.  For me, it was the best decision and I had a very successful outcome.

As for hearing loss, it all depends upon which direction your AN is growing in the internal auditory canal.  If it is close to the cochlea end, your hearing will be affected sooner.  If it is growing toward the brainstem, you may not have any hearing loss for quite awhile.  And, of course, any variation between.  Symptoms (not necessarily size) often dictate how quickly a patient seeks treatment.

When I was originally diagnosed, my AN ear hearing was approximately 80% of normal, with 100% speech discrimination.  Following my first surgery, it was 20% but still 100% speech discrimination so I effectively used a regular, air-conducted hearing aid until my second surgery, which took the remaining hearing.  I have a bone-conducted hearing assist (Oticon Medical Ponto Pro) now which is a big boost to hearing things from my AN side.

Remember ..... none of us are medical professionals on this forum, but we can share much of our personal research and experiences.

Thoughts and prayers.

Clarice

[seavol]

Thanks again for the help. I just saw an ENT, although he referred me to another ENT so left the doctor w/ more questions then answers as he was hesitant to discuss optoins.

While he noted it was small < 3MM he mentioned hearing may be lost regardless because of where the AN is located, although he mentioned it's very difficult to tell this ear. While I still have 60/70% of my hearing in my AN ear, if it is growing on the cochlear segment of the vestibularcochlear nerve do you know if hearing loss is inevitable or could it be potentially salvaged?

[jaylogs]

Hi there! I wanted to welcome you aboard as well.  So sorry you had to find us but this is really a great place for info and support.  So, that ENT you saw didn't sound like someone who had a lot of experience with them.  That is one thing you need to do is find someone with  experience with these.  As you'll no doubt find out that everyone's case is unique and so I can't say if that ENT was right or wrong, BUT sometimes, and I repeat, sometimes...hearing can be preserved by doing retro-sigmoid or middle fossa. I did middle fossa and ended up with saving my hearing somewhat, but I still use a BAHA because my word discrimination isn't too great.  Point of all this is I had two other doctors tell me to go with translab, which is a definite hearing killer.  Of course, I went in knowing that the chances were good I could totally lose it.  As Clarice mentioned though, you do have a lot of time to weigh your options and as someone who is expecting definitely wait for a while because surgery will let the wind out of your sails pretty good and radiology can mess with you a bit too.  Let us know how it goes and if you have any more questions please don't hesitate to ask!  Good luck!!
Jay

[ANGuy]

Thanks again for the help. I just saw an ENT, although he referred me to another ENT so left the doctor w/ more questions then answers as he was hesitant to discuss optoins.

While he noted it was small < 3MM he mentioned hearing may be lost regardless because of where the AN is located, although he mentioned it's very difficult to tell this ear. While I still have 60/70% of my hearing in my AN ear, if it is growing on the cochlear segment of the vestibularcochlear nerve do you know if hearing loss is inevitable or could it be potentially salvaged?

I don't think they can predict hearing preservation with the kind of linear precision you are looking for.  It's reasonable to want to be able to predict it like that, and many things in life can be predicted like that.

My hearing is pretty darn good.  I had an ABR test that is supposed to be a predictor of hearing preservation and my Dr said it was "bad" meaning my hearing is pretty certain to be lost.  Then, I read a study online that many AN patients with bad ABR scores still keep their hearing.  So, my Dr who is very experienced in AN's  relies on ABR scores and yet some undoubtedly will not rely on them.  I haven't asked him about it since I am not yet at the point where I will be deciding on what type of treatment to get.

I also don't put much faith in the idea that the exact characteristics of a particular tumor can be assessed from and MRI.  Some people post about the location and other details about their tumor in ways that my dr says can't be known until they go in to take it out.

[michellef08]

Hi seavol,
Your tumor is very small! I had similar symptoms - mild hearing loss (only about 10% loss) and tinnitus in one ear. My tumor was 1.4 cm but was still small enough to be a candidate for the Middle Fossa approach, which has a higher chance of saving your hearing. My hearing is exactly the same post-op as it was pre-op!

In my opinion, traveling to see the very best doctors is completely worth it. I live in Washington, DC right next to Johns  Hopkins, but decided to fly out to LA and am thankful for making that decision every day! My advice would be to see as many specialists as you can, until you can make a decision that feels right for you. Make sure to seek the advice of specialists who are very experienced with AN. Have you sent your MRI to House for a free consult? https://www.houseclinic.com/consultation/acousticneuroma . I would highly recommend hearing what they have to say, no matter which option you are leaning towards. I believe other clinics provide the same service as well (USC, Stanford).

Let me know if you have any other questions, I am happy to share my story!
~Michelle