Newly Diagnosed in Wisconsin

[TrueKnits]

Hi everyone.
My name is Elisabeth. I`m 45 years old and I was diagnosed with a 10.4 mm right side Acoustic Neuroma on May 25, 2022.
I saw Doctors Neff and Van Gompel at Mayo Clinic Rochester on June 15, 2022. After a very thorough discussion regarding my symptoms and lifestyle, I have scheduled retrosigmoid/suboccipital surgery for August 12, 2022.

My history-
January 2022 - I had a head cold and when recovering realized my symptoms of ear fullness, reduced hearing, and slight ear pain were not subsiding. I thought I just needed to give myself more time. These symptoms continued and I experienced significant intracranial pressure at times.
February 2022 - I began to also experience intermittent facial twitching and spasms. I noticed dizziness upon standing and a slight lack of balance. 
March 2022 - I began to also experience brain fog and difficulty concentrating. I began to feel increasingly fatigued with otherwise normal activities. My balance became slightly slightly worse. Tinnitus presented as an extremely high pitched incessant tone.
April 2022 - All symptoms become progressively worse. I experience 2 falls, thankfully onto couches. April 20 diagnosed with infection of right ear and prescribed Augmentin. After 7 days no relief of any symptoms. Prescribed Prednisone and Doxycycline. Some relief of ear fullness, sensation of crackling and like something is going on ear wise. Began to experience hesitancy in my speech and having to concentrate while speaking to find the proper words.
May 2022 - Finished Doxycycline course. Attended church the following Sunday where I am the bassist for our worship team. Was barely able to maintain balance. Had difficulty in maintaining rhythm with plucking hand so simplified my usual playing. In ear monitor on right side seemed to sharpen every tone so I was unsure if hitting all notes correctly. I had to adjust the volume higher then normal to discern vocals. When worship was complete my husband had to help me descend offstage. I experienced extreme exhaustion, dizziness, and slight nausea. I needed assistance to the Sunday School building and was unable to stand to teach for the entire hour. Required assistance to walk back to sanctuary, and had to crawl around stage to pack my gear. The following morning I alerted my physician who referred me to an ENT Dr. Jens Brown in Altoona Wisconsin. After conversing and an evaluation I was referred to Sacred Heart Hospital in Eau Claire Wisconsin for an MRI with and without contrast.
May 25, 2022 had MRI and within 3 hours had call with right side Acoustic Neuroma diagnosis. Referred to Mayo Clinic Rochester.
June 2022 - Symptoms worsening, particularly the tinnitus and balance issues. I must use walls or furniture for stabilization in the absence of someone to hold my hand. I am unable to perform any task for more than 15-20 minutes before I must rest. I stepped down from serving in church. I own a successful custom knitting and costuming business but had to stop taking orders. I have 9 children aged 6 to 26. I require help from my husband and elder children to care for the younger ones.
June 15, 2022 saw an audiologist at Mayo prior to doctors. Right side has 65% word recognition and increasingly diminished hearing above 1khz. Left side normal. Then saw doctors Neff and Van Gompel. My condition and concerns were thoroughly discussed. I was counseled regarding the risks and benefits of various treatments or watch and wait options. I expressed my preference for surgical removal of the tumor with priority of preserving facial function.  I was counseled that if I undergo the recommended surgical approach I have only a 33% chance of retaining current hearing in right ear.
Retrosigmoid craniotomy scheduled for August 12, 2022 with Doctors Neff and Van Gompel.
Doctors were concerned with my degree of dizziness and vestibular symptoms, and believe I may have issues beyond just the AN.  I was given information on PPPD which I will pursue treatment for should my symptoms persist post surgical recovery.

I am overwhelmed with this diagnosis. In general I think I am doing well but sometimes break down and weep.
My husband and church are providing stellar support. I am grateful that world class physicians are 3 hours away.
Thank you to any that have read, I appreciate all I have learned here thus far and all that I will continue to learn.

Elisabeth

[donjehle]

Hi Elisabeth!  And thank you for making your first post and sharing your story!

Although it is never great news to hear that you have an AN, it is good to know what was causing your issues and that you have excellent specialists at Mayo to care for you.  And that you have great church and family support as well!

We do understand about being overwhelmed and breaking down and crying.  I think we have all been there, but it is reassuring to me that a somewhat normal life can still be had.  As bad as it sometimes seems, we can still thrive through it all.

Thanks, again, for sharing your story!
Don

[TrueKnits]

Thank you, Don for your response.
I appreciate your reassurance that life can be normal and one can thrive even with this diagnosis.
I feel fortunate that I have resources available and am awaiting my packet of information from the AN Association.
I miss what my hearing used to be, but am grateful for all the years I've had before this manifested.
Having a rough day today and trying to distract myself from the tinnitus. I adore Star Wars and am immersing myself in Galaxy of Heroes. I am listening to as much music as I can as well.

[donjehle]

I also miss what my hearing used to be.  I'm jealous of your 65% Word Recognition Score.  I started out at 100% WRS, and my ENT assured me that I would do very well with a hearing aid.  But while watching and waiting (since my AN is small), my WRS dropped to 12%.  My new audiologist says I am basically deaf in my AN ear.  So, I purchased a very expensive CROS system which allows me to hear what is said on my AN side, but in my good ear.  Again, it is not like it used to be, but I can still hear people and go out to eat with others, go to church and function fairly normally.  So, the loss of my hearing, while it upset me greatly at the time, is not as awful as I first feared.

I was more concerned about my loss of balance.  Like you, I fell a few times (and I was grateful to fall on my couch a couple of times, like you).  But I was afraid that I would not be able to keep my job if I could not keep my balance and if I could not hear.  I did seek out a well-qualified vestibular therapist.  I traveled about an hour to see her, but I am glad I made the trip.  Some physical therapists claim to be able to deal with balance, but their treatment plans are for those who have had an injury or are dealing with a loss of balance from old age.  My vestibular therapist was very knowledgeable of vestibular schwannomas (or acoustic neuromas) and what treatments worked best for what we have.  My balance has been restored, and I can function normally most of the time (I still can have some balance challenges when I become extremely tired).  While life will never be what it once was, it is still pretty normal and fulfilling.

I will be very interested to hear the rest of your story after August 12.  Please let us know how it goes.  I will especially be interested to hear how it goes with your hearing and your facial function.  And I look forward to hearing continued support from your church and from your husband and family.  It's wonderful to have those around you to care, especially at a time like this!