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1) How old were you at the time of your diagnosis?
I was 38 when the tumor was found.
None that I am aware of.
Schwannoma on the 10th Cranial Nerve (Vagal Nerve) at the base of my skull/neck, pressing against the jugular vein on the left side (under the ear close to jawline).
I was a "sickly" child with a history of severe migraines from the age of 9 (& still have them on a severe level). While in college I had a very bad case of mono. After having mono I began to get sinus infections quite often. The infections got progressively worse and I was always at the doctor's office for either migraine or sinus stuff. At 38, after noticing for like a year, that it appeared than one of my "lymph nodes" stayed swollen so I mentioned it to the doctor and she stated it was concerning her too. She sent me to an ENT who poked and prodded then sat down and said "I don't think it's a lymph node". By the end of the next day I had an MRI and he personally called to tell me the results. That it was a Vagal Schwannoma. He said he would like to remove it and informed me of the long term consequences/side effects. I was in shock so I agreed to talk to the nurse to schedule the surgery. After hanging up and talking to my dad he told me that we were going to find another doctor and get a second opinion. I ended up going to the Chief Surgeon of Otolaryngology at Duke. This doctor stated he would NOT remove it b/c of the damage it could do and suggested we had enough time to watch and wait as they are not normally malignant. HE said "if I do surgery I WILL hurt you" So I watched and waited for about 4 years but it started to bother me...pain in my neck...as well as ongoing dizziness, blood pressure and stomach issues (though at the time I didn't know the connection). It was extremely uncomfortable and although it ended up not growing very fast it started to be visible. I started to do research online and found a lady named Rhonda Edwards who had a webpage ( http://www.vagalschwannoma.
I had Intracapsular Enucleation done to remove the tumor by Dr. James Netterville at Vanderbilt Medical Center (Skull-Based Surgery Center). My surgery was very successful. Dr. Netterville stated he didn't know what kind of tumor it was 100% until he went in. He stated that many tumors that are thought to be Vagal nerve tumors are actually Sympathetic nerve tumors, which sometimes have a better outcome. Due to the location of mine he felt it was Vagal and if so I might have no voice or barely a voice for 6 months to a year. There was the possibility of needing a a feeding tube due to swallowing issues that often arise. He felt all of these things would be temporary and get better over time. I was told to plan to be out of work 6-8 weeks. And if I lost my voice completely there were treatment options. I had it removed March 3, 2013. It was a 6 hour surgery. I woke up talking (even though I sounded like i had laryngitis) and asking for food...which i was able to eat as soon as they transported me to ICU. I was there for 2-3 days (can't remember)...and even though I was in pain I recovered well. The left side of my head was numb (especially my ear) for about 3 months before I could feel anything. The sensations slowly came back and the nerve would "jump" a lot...I would have these spells where i would experience a lot of activity (even acne on that part of my neck) and then it would be better than before. My follow up appointment at 6 months showed slow blood flow in the jugular vein but the doctor was not concerned. He said that was common. I went back to work in 3 weeks but should have waited the entire 6 weeks. My biggest issue was that b/c my vocal cords didn't "close" correctly I lost a lot of air just moving around so I would get out of breath easy. This would cause me to get dizzy and the extra exertion of trying to talk exhausted me at work. I had serious blood pressure issues at first but that got better...matter of fact my BP was really bad before surgery but they couldn't get it regulated...it would go to low on meds. Now I still have spikes but NOTHING like i was experiencing before. It confused the doctors bc they said if it was bc of tumor it should have dropped but that vaso-vagal response I think for me was hypersensitive and reversed or something I don't know. Anyway, after surgery it was like that, they thought, because the nerve was healing and it actually got better the more I healed. Also...by a year I pretty much had my voice back completely. At my 1 year check-up it was showing that my vocal cords were at 50% (which stunned them and made them excited). The only symptom I have now is neck pain/pressure (which will trigger a migraine) some pain due to scar tissue, and numbness. I also had a lot of stomach issues before surgery...they improved about 75%...same with BP. If I didn't have the migraines I might be OK but I struggle with those which they are certain did not come from the tumor.
Questions about: risks and long-term side effects, how long it takes to heal as well as reasonable recovery time (the intern that came in to see me on rounds the day I left said in 2 weeks I could return to work...but when I asked the Resident and Dr. N they said to take as long as I needed; he even asked on a follow-up phone call if he needed to take me back out of work so if you go to a teaching hospital you should make sure that you are expressing any discomfort or lack of understanding to everyone including the surgeon...the interns and residents are still learning...and they are learning from you!
Ask what would happen should the surgeon feel like he couldn't save the nerve (Dr. N assured me that if it was that bad he would close me up and we would possibly do some radiation).
Ask what to expect as far as normal and not-normal "side effects" (They really don't prepare you for how long it takes to heal...I notice in these groups people asking how long before this gets better and I was the same way. Even my surgeon and residents didn't fully prepare me probably bc each experience is different and they don't experience it themselves so they really don't know since you leave the hospital and only call if there is a major issue.
their success rate (get some success stories)
I WOULD TELL EVERYONE TO GO TO VANDERBILT. YOU CAN'T LOSE GOING THERE...HE SPENDS A TON OF TIME EXPLAINING THE ENTIRE PROCESS.
I've described a lot in the questions above but I didn't mention the drain tube. They will show your family how to remove and when but be sitting down because you might pass out...I did. My daughter cut the stitches and did exactly as they taught her but because the tube is near the ear under the skin it gave me a very sick queasy dizzy feeling and I passed out....LOL. That still makes me sick to think about it. I will say that I would be hard on myself if I laid around too much and I expected my body to heal way faster than it could. So I would say take the max time out of work...don't push yourself...and recognize that it may take 2 years or more to finish healing...I feel like I'm still healing. Don't be afraid to ask for help with pain in the beginning...and you may have trouble sleeping because you cant sleep on that one side for awhile because you can't feel it. What got me through was noticing little changes, as well as stuff I could do to keep from going stir crazy while resting...good books, xbox, my tablet, music. And don't be afraid to call your surgeon to ask questions. You never know if what you are experiencing is normal or not unless you ask.
7) Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)
After 2 years I can now say "yes". It took a long time to feel like I was completely back to myself. I still get out of breath easier that before and have issues with the area around the tumor "aching" and I lose my voice quicker at games and concerts but for the most part I'm back to myself. And I get dizzy if I have any pressure in that area (like if I hug someone tall...lol) The most significant part of my recovery is that I am able to sing again, which I was told my voice would most likely not be back the way it was before but it is! 
