Newly diagnosed, neck pain question

[Neleh]

My 12/29/22 MRI shows I have a left 1.7cm acoustic neuroma that has grown into the cerebellopontine cistern and is right up to my cochlea. I have had tinnitus in that ear for 2 yrs. 6 months ago I started noticing hearing loss which I attributed to aging (71 yrs) and balance issues which I attributed to my cervical spinal stenosis. I am lucky to live in San Diego County and do have an appt with Dr Schwartz and Friedman this Monday 1/9/23 at UC San Diego.
I have also had some upper neck pain with headaches and feeling of fullness. With my history of the cervical spinal stenosis and my Spine doc and I were doing the preliminary steps for possible spine fusion. But then I started looking back and putting 2+2 together ... I had never even mentioned my hearing loss to my Spine doc.
I wonder how many of you out there have had neck pain that was attributed to their AN?

[donjehle]

Thank you, Neleh, for posting on the ANA Forums and sharing your condition!

I did not have neck pain like you described, but that doesn't mean that it is unusual for acoustic neuromas to cause neck pain.  Our AN journeys can be so similar and so different!

I am anxious to hear how your visit with Drs. Schwartz and Friedman went today.  Please update us on this!

Best wishes!
Don

[Neleh]

My visit with Dr Schwartz and Friedman 2 days ago went well, we discuss all the treatment options and I am awaiting a call from the UCSD Surgery Scheduler to set a date for Translab surgery. My balance symptoms although not severe, are affecting my daily life and being 71 and healthy right now, I opted to "get it out of there"!! No "wait and watch" or radiation for me. I then met with the UCSD AN Program Patient Navigator who was sooo helpful .... she fills in all the gaps of "stuff" that surgeons don't and connected me to the Program's Vestibular PT and I am going to start with him pre-surgery. As I start this journey and look toward the future ... maintaining my independence is key and that is why balance to me is the most important aspect to this. Of course, maintaining the facial nerve is important to me as well. I found it interesting to learn that our brains do better keeping our balance if there is no vestibular info coming in from the AN side rather than distorted info.
Onward .....

[donjehle]

Thank you, Neleh, for sharing how your visit went!  Please keep us posted on how things go from here.  Your sharing is so invaluable for others who are going through the AN journey.

Best wishes,
Don

[marybodah]

Hi Neleh,

I was more active in this forum years ago, but only occasionally visit until recently. In 2001 had 1 CM rt AN surgically removed via retrosigmoid and it continued to grow so in 2007 had 6 wks stereotactic (linac) radiation. Over the years I have had slight balance issues, rt sided deafness and tinnitus and occasionally vertigo and slight facial issues and neck spasm tightness that didn't prevent me from leading a good life.

About 2 months ago I developed a greater neck muscle tightness and terrible imbalance...Upon getting up every morning I have vertigo then stumbled around like a drunken sailor, plus more tinnitus and new ear fullness. Finally got appt with my neurologist and having in 2 1/2 wks 3 MRIs: brain with and without contrast; MRA on small aneurysm behind my right eye, and lumbar spine.

I am reaching out to you, firstly to say I hope all went well with your Translab surgery! What caugt my eye tho was your mention of balance issues due to your cervical stenosis. Was the balance issue caused by the stenosis or the AN?

I have been frantic worrying that my AN is regrowing but also hope my symptoms are from my neck and vestibular PT will be my treatment!

THank you for hearing me. I am 75 and otherwise in pretty good health.

Regards, Mary Bodah

[stevehernes]

How are you feeling these days? I genuinely hope things are going better for you. The last couple of days have been a bit rough for me, and even though I typically enjoy writing, I realized I needed to take a step back and prioritize my health. That's why I decided to reach out to academized.com/write-my-paper for some assistance. Sometimes, it’s essential to acknowledge when we need help, especially when we’re not at our best. Taking care of ourselves should always come first, and I’m learning that it’s okay to lean on others during tough times. I’ve been focusing on getting enough rest and engaging in activities that bring me joy, like reading and listening to music

[Crazycat]

Yes. I had a monster AN. I never had headaches; only neckaches (among other things). It's a long story......