Recently diagnosed & overwhelmed

[Jessicahaas]

I was diagnosed in January with a unilateral 12.5mm x 5.5mm x 6.1mm on my right side.  Up until yesterday I was happy to do the "watch & wait" treatment option.  However, I realized yesterday that my dizzy episodes do not have the same timing as in the past. I was at a store with my 4 yr old child when I thought the shelves were falling on us until I realized...it was a spell. I am a nanny for 2 children plus my own 2 and we are very active.  We travel and my FIRST fear is having another one of these episode while driving and with 4 children in my vehicle. (I tried catching the shelf that wasn't moving, will I swerve my van to miss that vehicle that I think is coming at me?)  My past dizzy episodes have lasted 7-10 days, with the first 1-2 days of me on my hands and knees because I can't stand. My SECOND fear is being with my children away from home and having the worse of dizzy spells and not being able to drive back home...let alone stand!

So my question to you is this:  is this how we live?  In fear of the next episode and it's timing? Or do I seem to be sliding into phase 2, which is surgical removal. My wonderful Dr. has said he is certain of 100% removal with 90% hearing retention at this point.

I'd love to hear you thoughts and/or encouragement.

Thank you in advance!!

[Jim Scott]

Hi, Jessica ~

I'm sorry to learn of your AN diagnosis and the episodes of acute dizziness you're experiencing. 

My view is this: once your AN symptoms begin to negatively impact your quality of life - as yours are - it is time to end the 'watch-and-wait' phase and focus on treatment, be it surgery or radiation.  Although AN removal surgery is a daunting thought, so is living in fear.

You are clearly confident of your doctor's skill and his prognosis seems quite positive.  That being the case, my suggestion would be to go ahead and schedule the surgery before things get any worse.  This kind of stress ('what if....?') is ultimately more debilitating than the surgery and if your symptoms are worsening, that may an indication that the tumor is growing and must be removed before you lose that 90% chance of hearing retention. 

The decision is yours, alone, but in light of the symptoms you're presenting, I would plan on scheduling the surgery for the near future.

Please keep us updated, as your time permits.  Thanks.

Jim

[leapyrtwins]

So my question to you is this:  is this how we live? 

Definitely not!

I agree completely with Jim.  When your symptoms start having an unacceptable impact on your life, it's time for treatment.

Good luck with your surgery; keep us posted.

Best,

Jan

[tinabean925]

I agree with both as well. As hard of a decision as it is..... It seems like it may be time ;-(

[Mickey]

Hi Jessica!  As a W+W advocate, there are times which that alternative may not be in your best interest. From what your saying your young have very bad symptoms w/ small AN and your Dr. (which you researched and are happy with) is confident on the outcome. I agree with the other posties and say nip it in the bud and put it in the rear view mirror! Wishing you the best , Mickey

[Kathleen_Mc]

I'm with everyone else too.....it's causing problems in your life, get it dealt with.

[Heresrose]

Jessica,

The dizziness you describe sounds like vertigo where everything is spinning around you. It is very debilitating. I had the most severe episode  in 1998 which kept me in bed for a week.  I had two more over the years but more manageable. I went undiagnosed for 13 years so along with the vertigo I experiences dizziness, nausea, tinnitus in 2005 then finally fullness in the year and hearing loss in 2011. Even with all these symptoms I went on with life as usual.

My advise is that you get more than one opinion preferably from doctors who do both micro and radiosurgery. It is wonderful that your doctor is confident, most of them are, but there are no guarantees and they won't know what they're dealing with until they are in your head. Not sure what unilateral means in terms of AN, my doctor was also confident that he would get the whole tumor and I was given a two percent chance of facial paralysis but in the end he had to leave a strip of tumor behind to avoid cutting my facial nerve. I woke up with facial paralysis- not the outcome anticipated or wanted. My balance and hearing nerves were severed. I had therapy to learn how to balance and walk again.

I too have two young children and I had to have help with them during my recovery period. Someone had to care for them while I went to physical therapy for my balance and face.

This past March two years and two months post op my MRI showed new tumor growth. I had Cyberknife yesterday and have two more sessions to go and will be done by Friday.

What type of surgery is your doctor suggesting? It is important to know what type of surgery you're having. If your hearing can be preserved then it does not sound like the translab approach. Sounds more like the mid fossa approach. I suggest that you also consider radiosurgery as they have good outcomes with tumors the size of yours.

My intent is not to scare you with my story but to get you to carefully examine your options because with a smallish tumor such as yours you do have options. Do not rush into surgery until you weigh all of them.

Just my two cents.

I wish you a wonderful outcome whatever you decide to do.

Rose