small tumor, big symptoms

[lawprof]

Hi everyone - new to this forum. I was just diagnosed with a small AN <1cm after experiencing rapidly escalating symptoms. I had sudden and significant hearing loss last April, which an internist said was allergies and suggested flonaze and sudafed. My hearing mostly came back, but I started getting dizzy and feeling a bit unbalanced over the summer. In the past few weeks, I've been quite dizzy, unbalanced, nauseous, and have tinnitus and some numbness /tingling in my face. I've stopped driving due to the vertigo and am having a hard time working due to the headaches, dizziness, and fatigue. It's hard to do basic things like go to the store or workout bc I get so nauseous and I feel so unsteady.

I'm wondering if there are others that had a relatively small tumor while experiencing several symptoms and what treatment options they chose. My ENT was sort of dismissive, saying that the tumor was so small they likely would recommend watch and wait and my headaches were probably due to stress.

I have an appointment with a neurosurgeon on Monday and am lining up a second opinion, both with AN specialists.

Many thanks for any thoughts or advice you might have!

[cmclane28]

Hello. Sorry to hear you are going through this. I was first diagnosed with my AN back in July. It was only 13mmx12mm but was causing me to have unexpected bouts of vertigo, which sometimes left me feeling dizzy and off balance for a week at a time. I also have loud tinnitus in the left ear, which I'm just used to at this point. Typically, the vertigo itself would only last around 10 minutes. My choices were to watch it, do stereotactic radiosurgery (aka Cyberknife) or surgery. I just turned 50 this year and have been regularly going to the gym for years, so I felt very healthy. I chose to do the radiation instead of surgery due to the possible complications that could cause (almost guaranteed loss of hearing in my left ear and the risk of damaging my facial nerve, which was really my main concern.

I had the radiation treatment back on August 20th and ever since then I have been off balance and feeling dizzy. Sometimes the dizziness is worse than other times and seems to be related to me being tired or not drinking enough water, but thankfully it doesn't cause me to feel nauseas. Still, it has been a major annoyance that I am off balance so much. I go for my follow-up MRI today to see how my AN is doing. In a way I hope it actually got a bit bigger to help explain my symptoms, otherwise I'm not sure when this will all end.

If you are having significant symptoms from your AN, which it sounds like you are, I wouldn't be a fan of just watching and waiting because it will likely only get worse. Only you can decide what is right for you on the radiation or surgery front. I never expected that the radiation would cause me to feel this way for this long, but then again it's only been 3 months and I've been told it could last for 6 months or a year (or more). Still, I stand by my decision to have the radiation done before actual surgery.

I hope this helps. It makes me feel better talking to others that have similar experience because although my family is aware of my situation, I just don't think they can fully appreciate what I feel like every waking minute of the day with my dizziness and balance issues.

I wish you all the best.

[donjehle]

Like lawprof, I was diagnosed in November with a very small AN.  And like lawprof, I had sudden and significant symptoms.  I had a little hearing loss, tinnitus, and equilibrium issues to the point that I had to use a cane to keep from falling.  Even after the diagnosis of the AN, my ENT doctor said a virus must have caused the issues because he could not believe that such a small AN could cause such severe symptoms.  He said I was lucky to have the virus because it caused me to have an MRI which revealed the AN.  If it was truly a virus, it was the strangest virus I have ever had because I did not have sniffles, sore throat, a temperature, or any of the other symptoms I have had with other viruses.

When I had a consult with the neurosurgeon, he also recommended a watch and wait approach, even though I lost almost all my hearing while waiting for an appointment to see him.

It seems that small tumors are not taken seriously even when the patient is experiencing significant symptoms.  I am waiting for my appointment for a second opinion.  I appreciated the comment by cmclane28 that he/she was not a fan of just watching and waiting because it will likely only get worse.  That's not the experience of some people, but mine certainly got much worse in a short period of time.

Please give an update on what has happened since the original post.

Thanks,
Don

Vestibular Therapy with an actual vestibular therapist (and not just an ordinary PT) has helped me a lot with my balance issues.  I don't use my cane anymore.  I highly recommende vestibular therapy.