Just Diagnosed with AN

[Type1AN]

For a couple months I had experienced some hearing issues in my right ear.  I saw family doctor and was referred to an ENTA office that said my hearing was fine and that I could have TMJ and recommended trying to sleep with a mouthguard.  Luckily I got a second opinion that actually ran hearing tests and scheduled an MRI.  I received results of the MRI on Friday.  I am scared to death! I am a 45 year old male with type 1 diabetes as well so it is not like I have not dealt with medical issues but reading about complications from AN is just as scary as diabetes.  After reading the Board today I am almost certain that my 2.5cm x 1.3cm x 1.2cm tumor falls under the large category.  I have been referred to a specialist but have not received a call from that office yet.  I am preparing myself for some kind of a surgery and would welcome any feedback on past experiences from people with tumors of my size.  Another difficulty is that I also farm and harvest will be upon us in the next 1-2 months.  If anyone can talk about recovery time, that would be great.  I know it will depend on the course of treatment.  My hope is the recovery is short so I can get it taken care of or that I can wait and have it done after harvest.  So many questions and so many concerns. 

[MarlaB]

Hi There...welcome to the club no one wants to belong to.

BREATHE....

Lots of information, lots of decisions to make, and none of them have to be made in the next five minutes. By now, I hope you have registered with ANA to get your information packet. I'm in the Pacific Northwest, and if you want to chat, I'm available.

As for recovery time, everyone is different. My doc told me to get in the best shape possible pre-surgery and I made time to do that. Ask for help if you need it, listen to your body (and your brain) when you need a break. Keep us posted. We are all in this together.

Marla B.

[Greece Lover]

I would echo what Marla said: you have time. These tumors are rarely an "emergency," even thought it certainly will feel like one.

recovery time is different for everyone. the most important thing right now is to find a doctor whom you trust and who deals with AN a lot, and then you can start to consider treatment options and timelines.

Best of luck!

[Type1AN]

Thank you for the advice and kind words.  I have an appointment with Dr Porter in Champaign, IL tomorrow.  I hope it goes well.  My family is being super supportive and I suspect my employer will be the same.  I like to take on responsibility and knowing that I may need to let that go for a little while is my biggest fear. 

[JmLgrace]

Hi Type1AN,
I know this is late but hope you are doing well and still keeping up on the site.  I have had T1D for 48 years and was just diagnosed with an AN.  It is 2.9x2.6x2.3cm.  The ENT is sending me to a neurosurgeon...hopefully soon but it sounds like it will be at least a month.  Just wondering how the hospital and steroids went for you.  My diabetes control is a huge concern, so any suggestions would be greatly appreciated.

[donjehle]

Hi JmLgrace!

Thanks for posting.  Just like we would love to hear an update from Type1AN, please keep us posted on what happens with you after you have gone for your consultation with the neurosurgeon. We would like to hear what your experience is as well.

Best wishes for your future!
Don

[JmLgrace]

Thanks DonJehle!
Still waiting on the Neuro to call regarding an appointment.  I noticed your bio mentioned burning tongue.  I have that as well.  Has your doctor said whether that symptom will go away upon treatment or once the symptom arrives does it becomes permanent?
I wish you all the best!

[donjehle]

Thanks for sharing that, JmLgrace!  My ENT doctor thought I was crazy when I mentioned the burning tongue.  He said it had nothing to do with my AN.  He said it was probably a virus that happened at the same time and would go away.  And yet, I found a couple of published research papers which linked burning tongue with vestibular schwannomas.  One article was an account that was prior to treatment; the other one was post-surgery.  I tried showing them to the neurosurgeon that I saw at Emory.  He was not interested in looking at them.  He did say that it could be that my AN was touching the chorda tympani nerve.  So, at least he didn't say I was crazy.

Thank you for telling me that you have that as well.  I thought I was on an island all by myself with that as a symptom for AN.  You have encouraged me!

But, in terms of your question, none of the doctors I have spoken with so far have stated whether the burning tongue would go away after treatment or whether it would become permanent.  Maybe someone else in the AN Community has also experienced that and can answer your question.

I hope it goes well for you!
Don

[JmLgrace]

That's interesting!  Thanks DonJehle!  So many nerves in such a small space.  I'm not sure why my symptoms don't show up on my posts, but they almost mirror yours...except I have facial numbness as well.  By God's grace I still have normal movement at this point!      You are not alone and I am grateful for this forum where we can all share these difficulties with others walking the same road.
Blessings to you! 

[donjehle]

I agree, JmLgrace!  These forums have really encouraged me as I read what others are going through.  We all have a little different experience as we go down a similar path, but we still journey together.  The other thing that has really helped me with understanding is watching the ANA videos.  I lost track of how many I have now viewed, probably 40 or 50 of them.

Let us know how your appointment goes!  Hopefully, it will be soon!