Newbie with two types of tumors!

[IndySkye]

Hello Everyone!

Two weeks ago I learned I have a very small (.75mm) AN on my right side. The MRI also revealed a benign meningioma on the left side of my brain. To keep the tumors straight I've named the Left one Lucy and the AN "Ethel" for ear.    Learning I have two brain tumors was a BIG shock because my doctor told me my vertigo was probably due to a food or drug allergy. Imagine my shock when he called to tell me I have two brain tumors!

As a former news reporter, I jumped online and read everything I could. Three hours after receiving the news from my GP, I emailed Dr. George Wanna, a microsurgeon at Vanderbilt asking what should I do? Within three minutes of sending that email, his nurse Lesley-Ann, was on the phone telling me, " Don't worry, everything will be OK. We're going to take good care of you." An hour later Dr. Wanna emailed me from a conference he was attending in California - he told me he was looking forward to meeting me and not to worry. I slept well that night knowing this amazing doctor, who has successfully removed hundreds - even thousands of ANs, is going to take care of me. Thank you Dr. Wanna!

One week from the day I learned I had two brain tumors, I was driving 300 miles to Nashville to meet my doctors and undergo tests. After spending several hours with them (Dr. Kyle Weaver is the neurosurgeon) I felt my decision was pretty easy - remove the AN now while it is still small and not risk facial paralysis. (Dr. Weaver noted I was already starting to experience slight paralysis.) So, I've set my surgery date for July 18th, 2012. This gives me time to enjoy a family reunion in June, then get my life in order so I can focus on my recovery. In the meantime, I start "balance therapy" at the Balance Institute in Indianapolis on Thursday.

I think my friends and family worry that I am proceeding too fast...to me I'm doing what seems logical. Finding the best people I can to help me achieve the best outcome possible. I TOTALLY believe these two doctors are fantastic and feel lucky to have found them. If anyone is searching for an amazing, compassionate team - I highly recommend them! (NOTE: both doctors offered a wait and see approach. It is my decision to have surgery sooner than later. I don't want you to think they are surgery-happy guys. Because I have done so much homework and I'm fully aware that I could lose hearing in my right ear - they have agreed to my request for surgery this summer.)

I also feel I'm lucky to have found this terrific organization! Today I've spent hours and hours reading all of your posts. THANK YOU for being so knowledgeable...and well, amazing! I learned about the ANA while watching scary videos on YouTube.    I think I'll stay away from those for awhile - but I'd like to know, is facial paralysis common? (Please save me from doing MORE research! lol)

I hope to make a blog of my journey and I plan to walk in the Brain Tumor run/walk in Carmel, Indiana June 9th. My husband is a news anchor, so we are thinking of ways to help fundraise for the ANA and bring awareness to folks suffering from Acoustic Neuromas who may not know they have them. Your thoughts and suggestions are very welcomed!

Much love to you all for making this "life-challenge" so much easier!

Skye

[Susan A]

How reassuring to get such prompt responses from Dr Wanna and his nurse!

[Kathleen_Mc]

I think you are doing the right thing for you.......I too am one for just getting on with what needs to be done......the years I spent w&w the tumor regrowth were very difficult for me, I had purpose for w&w (finish having children and waiting until they were old enough for ex to cope with them while I was sick) but it was very difficult.
Sounds like you are in great hands!
Kathleen

[james e]

Sorry to hear you have an AN, and doubly surprised you have another brain tumor also. Hang out here, and you will find out you can overcome these problems and live a very normal life. Forget about you-tube. There are some good stories there, but most of them are not a true representation of what really goes on with ANs. The real deal is right here!

I don't think you have jumped the gun. I decided not to watch and wait. My hearing was almost totally gone, I was wonky 24/7, but my face was okay. Why wait until my face started to go numb? My surgery was 5 months after my AN was discovered, and I have no regrets. I knew sooner or later I would need to be treated, so why wait.

The type of surgery you will have will depend on the size and location of your tumor and how much hearing you have now. It sounds like you have a top drawer type of doctor. That takes a load off! I am sure your other tumor will have to be considered, and some medical priorities will have to be decided, but that is what doctoring is all about.

We don't do any doctoring here, but we are good on the mental health end. It sounds like you have a good start on getting treated. Keep us updated.

James

[LakeErie]

Indy, facial paralysis is NOT common today as a surgical outcome. Smaller tumors. less than 1 cm, can be removed with very few complications. Even large tumors are resected without further damage to the facial nerve as the surgeons today can leave small portions of tumor behind if a complete dissection is not safe as the tumor may be adherent to the nerve. My surgeon specifically said that in my case, a complete removal would have paralyzed my face. I had an " aggressive subtotal resection of 95% to 97% of the tumor."
If your question is, how common is facial paralysis as a AN symptom pre-surgery, I believe, again, it is not common. I had a large tumor that had been growing an estimated 15 to 20 years and I had facial numbness and numbness in my tongue, but no paralysis. Having researched more sites than I can remember, I do not recall any authority listing paralysis as a frequent symptom.

[lrobie]

Welcome to the forum!

I don't think there is anything wrong in getting this taken care of sooner rather than later.  I sometimes wish I would have sought treatment initially as I have lost some of my hearing since my diagnosis in 2009.  I, too, am scheduled for surgery on July 18th.  I'm going to House Clinic in Los Angeles.  I will be having middle-fossa surgery.  Do you know what type of surgery they will be performing?  It sounds like you are going to a top notch facility as well.

Lisa

[madison]

hello. I also have 2 types of tumors. I will have translab on June 18th and in about a year, I have to have a meningioma removed. I am starting to wonder if I have NF2.  I think I may be what they call mosaic. I previously had a neurofibroma removed from my finger and armpit. i have multiple meningiomas and a right sided AN.  I tested negative for NF2, but that isn't foolproof. 
I think you are handling things very well.  I completely agree with you about the forum...sometimes family members or friends just cant' relate.  It's great that you and your husband are trying to raise awareness about acoustic neuromas.  I have so many health issues, I often wonder if I'm supposed to be fulfilling some purpose-i just don't know what exactly.  Well, I wish you all the best-please keep us posted!

[Susan A]

After my experience being diagnosed last fall, I would strongly suggest that anyone who has an AN and a meningioma raise the question with their doctors as to whether they might have NF2. I think there are far more of us with mosaic NF2 than the doctors realize, and it would be really good to document more cases so that they have a better idea how to treat us and what the outcomes are likely to be. My case (unilateral, late onset) was definitely not typical NF2, but Dr Plotkin says it most certainly is. A negative test for NF2 does not mean that you don't have it - mosaic forms often don't show up in genetic testing.