Needing Advice

[heidihessel]

Hi there. I am in a watch-and-wait phase for my AN, which is 15 mm. It is located in my inner ear canal and butted right up between the front and back lobes of my brain—left side. It was discovered in March 2025 because my face felt weird and numb. I had been a patient of another neurosurgeon in Toledo, OH, who honestly didn't 'know what to do with it and referred me to a neurologist. That didn't sit well with me, so I immediately researched to find the right neurosurgeon and ENT team to treat me. My initial visits and consultations with Drs. Ren and Wu at OSU Wexner in Columbus, OH, were fantastic. I had vestibular testing that came back within the normal range, which doesn't make sense to me because I am very symptomatic of this AN. My follow-up "growth/no growth MRI" is in November with a contrast MRI. Dr. Wu wants to see the growth pattern.

I have become more symptomatic over the last month or so, and it has gotten worse in the last week. When I lie down now, I cannot rest on my left side, as it causes the buzzing or tinnitus to go into overdrive. I've also woken with a dull, deep headache on my left side. I've had these issues, but nothing as intense as it is right now. I've also noted exemplified disorientation while walking, with the ground feeling like it's moving up and down under my feet. My memory loss has also increased, as well as my fatigue. The left side of my face is also very numb, particularly in the cheek area. It feels very heavy.

Has anyone else experienced an increase of symptoms? If so, what did you do, or what were your next steps? I am at a loss for the next steps for myself because I don't want to seem overreactive to the symptoms, but on the other hand, I do NOT want to ignore them if the AN has grown.

Do I call my ENT or my neurosurgeon?

Thank you!
Heidi

AN discovered - 3/08/25 - 15MM with contrast MRI
Next MRI for growth - 11/20/25

[ESH]

Hi! I am also in watch-and-wait with another MRI scheduled for the fall. My symptoms have intensified a bit, especially the tinnitus and I now have some headaches that may be related (although it is hard to tell as I have had migraines most of my life.)  I know that increased symptoms do not necessarily mean increased tumor size, BUT

with the amount of symptoms you are having and the intensity of them, I would contact either or both doctors and ask them if they indicate that there should be a discussion about changing the current treatment plan. I have found that emailing, if available, works better. If I were emailing both doctors, I likely would include that information but only if I had had enough contact to know that they would not assume the other would answer.

I have learned over the years with other situations that you have to advocate for yourself. No one will check up with you--and if they are annoyed, too bad.

Ellen

[Mark F.]

Ok two things with this.   First yes you should contact your doctor.   I am the kind of person that doesn't go to the Dr. unless I feel like I'm dying or something, and I had a symptom change that I left go for a month, my neurosurgeon basically scolded me for that saying they want to know everything because these tumors tend to grow in spurts sometimes.   Then stay that size for a while until it hits another spurt or maybe it never does hit another one.   But secondly, the area that these tumors are in is so tight and packed with nerves that you can have rather dramatic symptom changes with little or no perceivable growth, and treatment can be adjusted based on symptoms also and not just growth.   

Now all that being said, there is also the power of suggestion.  I noticed way more symptoms after I was diagnosed and knew what the problem was.   I wasn't faking it or being dramatic about it, it was just that once you read what the effects of these tumors are, suddenly you notice things that either were not there before or that you just didn't notice because it was just part of your normal life.   

Personally, I wish I had gotten surgery sooner, mine was still small but like you very symptomatic, but once it was gone all of the symptoms disappeared except for the hearing loss. 

[DanFouratt]

Heidi,  Sorry you are here but welcomed.  I left watch and wait about 2 years ago September.  I lost hearing and have tinnitus, that was how it was discovered.   You can see my journey below.  To answer your question, yes I would reach out.  We are out best advocates and we need to be proactive. like Ellen said who cares what they think.  Be proactive.  I am not a doctor but if it was me I would look in the radiation as an option.  Please inform yourself of this possibility. Good Luck on this journey