New AN recipient; scared and lots of questions

[Stu]

Hi.  I am brand new to this forum - or to any online forum anywhere for that matter.  So not sure I'm doing this right, but hear goes (get it?)
 
I woke up about a week and a half ago with an intense, unrelenting ringing in my left ear, and noticeable hearing loss.  After a second sleepless night of it I saw a doctor, who then referred me to an audiologist the next morning, who then told me I had suffered sudden unilateral severe hearing loss, possibly due to a viral infection, and that it was permanent and something i would have to learn to live with.  I had an MRI 5 days later and, hearing nothing (literally) from any doctor for 3 days, I went back to get a copy of the MRI for myself and learned that they suspect an acoustic neuroma approx 1.1cm x 1.2 x 2.1.  From what little I've read here today, that seems to be a pretty small one, so I likely have more time and options than my brain and extremely-nervous psyche are currently telling me.  But I know very little yet about treatments, experiences of others, what to expect, whose an expert in Colorado where I live, etc.  After many phone messages, I finally got a PA from teh ENT office to call me back, and he admitted they were nbot the experts in this kind of thing, and were referring my case to Dr. Steven Cass at University of Colorado Hospital, and that he would get back to me in a week or so.  Makes me want to scream that no one else sees the urgency that I do, but I guess i just have to have patience.

So while I wait for a medical expert to contact me, can anyone out there who's actually been thru something similar, shed any light on options, your experience, any knowledge of experts in either microsurgery or radiosurgery?  Any alternative treatments?  Acupuncture?  Marathon-sock-sniffing?  Anything at all?

  -Stu

[littlemissrory]

Stu,

I'm very sorry that you've lost your hearing.  Not having gone through that there are others on this site who will no doubt reply that can be of more assistance.  My symptoms had all been vestibular...falling over, dizziness, nausea and vomiting.  In 2004 I had surgery in Seattle with Dr Charles Mangham-Neurotologist (Seattle Ear Clinic) and Dr Timothy Steege-Neurosurgeon.  They used the Retrosigmoid approach to save my hearing and facial nerves (successful) and were also able to save my balance nerve (surprising).  Fabulous doctors for me. 

There are places throughout the US to get exceptional care (surgery, CK and GK), talk to your insurance as to who they cover and then start to research who they are and how many they've done.  Set an appointment with the CU Hospital and then go from there-a second opinion is always a good idea.  It is very important that you are comfortable with who you choose.  Even the best doctor isn't the best if you don't have a good rappor.  Unfortunately you will find that most doctors have no sense of your urgency to get an understanding of what you have going on...you will have to learn to be direct and demanding at times (in a nice way of course).  It is your brain- get what you need. 

This forum, if you read through, has tons of great information.  There is also www.tbts.org -The Brain Tumor Society...they have support services and the description of an Acoustic Neuroma (Vestibular Schwannoma) is excellent.  You were also asking about acupuncture- it's excellent.  It won't take the tumor away or restore your hearing...but it helps in healing, calming, balance, dizziness, nausea, eye issues and energy (and the list goes on).  I go regularly still.
 
I hope this has been of some help, please feel free to email me direct if you have more questions. 

[pearchica]

Stu: read everything you can on this website- it is a wealth of information.   And yeah, although you don't feel like it now, you are one of the lucky ones- you have time to research this thing and find out what is best for you.  Best of all this is BENIGN.. Don't expect to become an expert overnight, you will have a lot of terms to learn (my mother in law likened it to attending a science lecture everyday).  Colorado has a new CK (cyberknife center)- also I'm glad you are going the academic route ie: University of Colorado. I had 3 separate opinions and then went for a fourth opinion and opted for CK treatment at Stanford.  (Check out my thread - Beginning Stages of Research)

I am sorry that you have become one of us- but welcome to Club AN...take care- Annie

[Sue]

Hi Stu,

I kind of liked your marathon sock sniffing idea.  Too bad that won't work!  I had Gamma Knife almost a year ago here in Portland, OR.  It seemed like the best treatment for me and so far it's working.  My hearing loss came on kind of fast, but the tinnitus was my first symptom and that went on for several months before the hearing went. I never had severe balance issues.  Your AN is at a size where you do have time to consider what you'd like to do. Just find a medical team you are comfortable with and hopefully they will have quite a bit of experience with AN's.  Write down your questions as you think of them so you can be prepared to ask the doctors.  We all experienced shock and dismay and anger and confusion and anything else you can name when we got our diagnosis.  So, any questions or concerns or fears, be assured that somebody will have some input for you.

I do wish you all the best in your treatment and recovery,

Sue in Vancouver USA

[Stu]

Thank you all for responding.  Yesterday (the day I learned about my tumor) was my twin sons' 5th B-Day and I had to put on a big smiley face and put this all aside to do something normal and fun and meaningful, because yesterday could NOT be about me.  I was so touched and excited and encouraged to come back and see your responses!  Thank you so much for sharing your experience, advice, information, and well wishes.  While it's not a club I ever wanted to join, thank you for welcoming me in!

  -Stu

[kristin]

Hi Stu...

I think most of us on this site have had the exact same feelings you are currently going through. For me it was denial for about a week. Then it really sunk in..holy cow! i have a BRAIN TUMOR! aah!

But...let not your heart be troubled. You now have what my doctor called "the best possible brain tumor you could ask for!" uh..what!? No, really...it's benign, usually doesn't have extensions (or arms) or whatever they're called. They are slow growing so you have time to research where to go and who to see and how you want to get rid of this guy...and since you've already lost your hearing (sorry about that btw..that stinks), you don't need to stress out about loosing your hearing.

You'll be ok.

Kristin

[Stu]

Please excuse the cross-posting.

Thanks all for your replies, both public and private.  Quick update.  The doctors pounded me with steroids for 12 days in hopes of reducing the swelling and regaining some of my lost hearing.  Miracles do happen!  After a second hearing test my hearing loss in that ear is now classified as mild to moderate (vs the initial "severe")!  The ENT was even a little surprised at how much was regained.

So I've met with 2 doctors at CU Hospital after meeting with my local ENT.  I think I'm pretty comfortable with my decision to go with single stereotactic radiosurgery, which will happen first thing this Thursday.  One of the docs (the radiation oncologist) is pretty optimistic about the amount of hearing I should retain, while the other (an ENT certified to do both microsurgery and radiosurgery) paints a less-optimisitc picture about the hearing, saying patients' hearing gradually dissipates quite a bit over the course of a couple years due to the radiation, and I should count my hearing rebound as a "gift." 

So question for all of you who have had single radiosurgery (and I suppose I should have asked this sooner since I go in early Thursday morning!) -- did you lose much hearing and/or balance control after your radiation?  What other side effects did you encounter?