Getting ready to commit to surgery

[NEbluebells]

I wanted to introduce myself - I was diagnosed with a AN (2.2 x 1.9 x 0.9) on Mar 11, 2016. 

I noticed hearing loss in Jan 15 after a painful ear infection and I kept going to my primary care provider (all told 7 appointments) before they would refer me to an ENT.  They kept telling me I had allergies or ear infections, and prescribed everything from a netipot to steroids. It was complicated by the fact that we have two small children in daycare and they seem to also bring home lots of germs, so we are frequently sick with viruses. Finally, I asked my trusted pediatrician's office for a recommended PCP, who referred me to an ENT immediately.  ENT ordered a hearing test, which showed a huge loss in the middle range and only 40% word recognition.  Even in the past couple of weeks I feel like it has gotten worse.  An MRI was ordered and AN was confirmed.

We live in Nebraska and were referred to a doctor that suggested the retrosigmoid suboccipital approach. I am most afraid of debilitating headaches, and got a second opinion in IA that suggested translab, but was a bit nervous about their program since it's not a team approach. Finally my CD arrived at the House Clinic and Dr. Slattery called us last night (Friday night) to discussed. We are pretty confident we want to proceed at the House, but are now trying to come to terms with scheduling, logistics, etc.

We are really looking forward to putting this all behind us and getting on with our lives, no matter what they look like after this change.  I have found the limbo in trying to decide a course of action very difficult.

[rupert]

Do you have other symptoms besides the hearing loss?   I take it you've been looking around the forum for a while if you sent a disk off to House.  Have you ruled out  radiotherapy?  If you're willing to travel there's some great options out there. Welcome to the forum.

[NEbluebells]

Yes, I found this forum and read practically every post the first 4 days after my diagnosis!

I don't think radiation is for me, because I think I just need to get it out and move on with the new normal.  It's been a tough decision bc my father-in-law had a much smaller AN discovered a few years ago and had radiation and is very happy with his outcome.  My husband wanted me to pursue radiation, but I just need to move on, so I'm pretty confident surgery is the right choice for me.

[NEbluebells]

Also my symptoms are mainly hearing loss, however I do have facial twitches and numbness.  Also I had two extremely horrible bouts of vertigo that lasted about 4 days each.  I also have a weird tightness on my left side, down my throat that ends by my clavicle. I also notice I feel like I want to throw up when I start moving, but if I can push through it, it generally fades after 40 minutes of exercise.

[UpstateNY]

NEbluebells,

I would agree with rupert that you should consider exploring all options to make sure you are comfortable you have made the right decision.  Based upon the size of your tumor both microsurgery and radiosurgery would appear to be options, but there are many factors to consider.

If you continue with the microsurgery approach, it has been shown that the retrosigmoid approach does result in the most headaches.  Translab has less headaches, but does result in a complete loss of hearing in the AN ear.  Your choice of facilities is excellent.  I just had microsurgery at the House with Drs. Slattery and Schwartz on Feb 18th and my result has been very good so far.  You don't say who you have chosen for a neurosurgeon, but I would recommend you speak with Dr. Schwartz since he has well over 1000  AN surgeries under his belt.  Many on this forum have also had very good results with Dr. Schwartz.  If you are interested, a summary of my journey is at the following link:
http://www.anausa.org/smf/index.php?topic=22581.0

[Cheryl R]

Where did you go in Iowa?      Just curious as Univ of Iowa is THE Iowa place to go as they do many many ANs.     I go there and have NF2 so 3 tumors out there.        They do have many from out of state.         Finding the right place for you to go to that you are comfortable with is very important.                     Cheryl R

[michellef08]

I agree, the treatment decision was the hardest part. I had my surgery at House almost 3 years ago, and am so thankful everyday! Dr. Schwartz is definitely a genius! I flew out to California from DC, so fully across the country! Once you start looking at logistics, I would suggest for your family to stay at Seton Hall (accomodations connect to St. Vincent's Hospital) for at least the time you are in the hospital. It's super convenient, very reasonably priced, and surprisingly nice! Good luck!

[NEbluebells]

Michellef08, I think you hit the nail on the head...the "selecting the treatment option" is just awful. I feel like my family and I all need closure and microsurgery is really our only hope at that, although maybe we won't ever have it! I'm glad you had a great experience at House.  Honestly, I've combed through this website since my diagnosis, and with the exception of some of the nurses/front office, it's hard to find negative things about House.

Cheryl, I sent you a message about my experience in IA.  It was a good experience, but I think overall I was just a little nervous that they didn't use the team approach with a neurosurgeon, which seemed to be highly recommended, but maybe I've missed something there. It would be much more convenient to schedule the surgery in IA, but my insurance does allow many choices, so I felt like I should choose the place that has the most experience, which seems like House (Dr. Slattery is whom I'm working with). I also really liked the idea of possibly having the synergy of other ANers that seems common at House during recovery. I really loved so many things about my IA experience, but the teaching hospital portion of it made me a bit more nervous than what I may expect at House.

UpstateNY, thank you for sharing your story. It is so helpful to read about the experiences by so many other members of this club.  You know, my father-in-law also had an AN about 2 yrs ago and pursued radiotherapy.  I think bc of my age (36) and need for some type of closure, I just don't think radiation is the right choice for me.  Although my in-laws (bless their hearts) think radiation is a better option, bc my father-in-law had great results (his was about half the size of mine). I am happy to say that while the decision has been painful, it was less so since I am really not interested in radiation at all.

Rupert, thank you also for your kind words and welcoming me to the forum. I cannot express how happy I am that I have found such a nice supportive group of folks. The first couple of weeks after my diagnosis were ok, but now it seems like I find myself crying out of the blue. I don't want to be frozen in fear, I just want to take some kind of action to regain some control in our lives. I hope that doesn't sound irrational, but I just want to be the one pursing the most aggressive treatment possible to kick my AN to the curb.

Thanks again to everyone for all their help and encouragement.  I'm so glad to have found you all!

[Cheryl R]

I have wrote you back also.     A team approach is anytime 2 surgeons are involved and the Fellow and a neurotologist would be a team approach.    The fellow does the open and shut and Gantz does the tumor.     My surgeries were 6-8 hrs.
I would want a neurosurgeon for other types of surgery.        The Fellows have went on to be at several places where they were in a high up status.                   You need to be comfortable with where ever you go and do wish you the best.
                                           Cheryl R

[NEbluebells]

The tentative surgery date is set for 12 May...it was either that or 28 Jun, and I am so ready to just get this over with and move on, whatever that brings.  My facial/eye on the AN side have been twitching non-stop for the past 3 days and I just have an awful feeling that it is growing, and I tend to trust my instincts. 

Does anyone else "feel" their AN as a presence? I felt this even before I was diagnosis. When I went in for my hearing test (pre-diagnosis), I told him that I just knew there was something "there".  I had no idea it was going to be an AN, I thought maybe it was going to be some blockage in my sinus cavity or something.  But my AN gives me the feeling of a presence...has anyone else had this experience? When the audiologist asked me to elaborate, I told him that when I was little, we used to play a game of "hide and seek in the dark" and you could sense the presences of walls/furniture when you got closed to them, even though it was dark and they didn't have any smell/sound.  I told him it was like that...except I felt the presence on the left side of my face.

[NEbluebells]

Update- confirmed the 12 May date and all pre-op appts for 11 May.  Thankfully my mom can come stay with our kids for 2 weeks.  We bought our airline tickets yesterday and confirmed our reservation with Seton Hall three days ago.  They are fabulous to reach via e-mail; I emailed them on Friday and they confirmed our reservation on Monday.

[NEbluebells]

Received the inprocessing paperwork from House a few days ago. Included in the packet was a list of lab work ordered by Dr. Stefan. The labs are scheduled in 4 days.  Things are starting to get real and a bit stressful. I'm trying to button up things at  work and get the kids prepped for my husband and I both being gone for 2 weeks. We've never left the kids before and I am sick with worrying how much I'll miss them (among other things).  But they are just too little to take with us to California and would be too much of a handful for my parents to manage in a hotel room.

[Greece Lover]

I'm schedule for surgery on May 9.  Lots of similar feelings to you.  Can't wait for this to be over!

[NEbluebells]

Well, we are T-4 days to the surgery. Right now things that I'm doing are moving money from savings ($1100 co-pay for the hospital facility fee due at time of check-in; assuming $80/day for the room at Seton Hall; and $500 copay for the surgery...I'm sure more bills to come, these are just the expenses that I've been told about pre-visit, so I'm getting all the financial things in order).

We updated our medical power of attorney, trust and wills (hubby is traveling with me and I'm terrified that something will happen to both of us leaving our kids orphans...anyways, you can tell I'm totally stressing about leaving the kids - it's just brutal, I know travel for medical care is a luxury, but I just hate being away from my littles.)

We spent this Mother's day weekend running errands (getting the kids new summer clothes/shoes, getting all the groceries stocked, meals prepped, schools notified, summer camp programs paid for/emergency contacts updated...I had my last day of work on Friday, even though we don't fly out until Tuesday. I'm really glad I took the extra day so I can have time to get the house cleaned and laundry done before we fly out. I know I have a bunch of paperwork on my medical history I'm supposed to fill out and a prescription for something (I can't remember what) that I'm supposed to take 3 days before the surgery, but I'll tackle that tomorrow. 

I also had a KILLER headache on Friday and Saturday - I think it was probably a migraine, but I had to get projects wrapped up at work and just took the zofran to stop the nausea and worked through it. Ugh.  At the risk of TMI (and in the interest of helping others so they don't have to go through what I went through) zofran causes horrible constipation and I'm pretty sure it should always be taken with some kind of stool softener. I'm glad I learned this before my surgery - I plan to be prepared!

Overall, I'm incredibly anxious and my poor hubby and I got in to a fight (very rare for us after 15 yrs of marriage). We both know it's just all the stress that is piling on - ugh! I also haven't been exercising for the past 2 weeks because of rain, schedule and probably a bit of the blues. It definitely helps my mood, so I'm going to try and get walking tomorrow.

[NEbluebells]

Night before is finally here. I'm thankfully just really tired and am hoping for a night of rest before I start the road to recovery.

It's been a whirlwind of doctor visits today, but I can't say enough nice things about how nice everyone is here at St. Vincent/House. From the security workers to the lab folks to the doctors. Every. Single. Person has been nothing but genuinely kind, caring and helpful.

As far as emotionally, I'm a bit of a wreck, I worry about my family worrying about me

Thanks for all the folks who have sent me messages wishing me well - I will ask my hubby to update as soon as he can.