Lost in Maryland

[karascott]

Greetings everyone,

I was just recently diagnosed about 2 weeks ago with 1.1cm x 1.7cm AN in my right hear with no symptoms. I have been to see  Dr. Olivi from John Hopkins, and I have also been referred to Dr. Eisenman by the Chair of Neurosurgery, but he has not called me back. I was just wondering if anyone in Maryland has heard of or have had their AN removed by them. My friend's mother in-law has told me to go to HEI. She went 4 years ago instead of staying in Maryland. I am trying to keep it together for the family and friends. I have a great deal on my plate right know. I am just about to buy a house, and I am suppose to be planing a wedding. The wedding will have to wait. Now, I am a 36 year old woman trying to plan a successful AN removal. 

[CHD63]

Hi Kara and welcome to this forum .....

I live next door to Maryland and I flew to HEI for my last AN surgery ..... highly recommend it.

A question:  if you have no symptoms and your AN is small, you should have all three options still open ..... wait and watch, radiation treatment, or surgical removal ..... certainly plenty of time to check out all of your options.  There are several facilities around the country who will do free consultations by reviewing your MRI CD and audiogram ..... HEI is one of them.  See:  http://www.houseearclinic.com/consultation/acousticneuroma  University of Pittsburgh Medical Center and Wake Forest Medical Center in North Carolina both have outstanding reputations for radiation treatment.  I would strongly urge you to check out your options before making a decision to hold off on your wedding.

Tell us more about what sent you for an MRI.

Clarice

[karascott]

 I have had RA and Sjogrens for 17 years. My numbers are high, but I function well. I'm blessed because according to the numbers I should be "cripple". I have controlled it with my diet for the most part.  I ended up having a MRI because I had numbness on the left side of my body, and they wanted to make sure that I was not having inflammation of the blood vessels which can be caused by the diseases. When the doctors broke the news, he told me that inflammation of the vessels is worse than having AN because AN is fixable. 

[Nia]

Hi there,

I live in Maryland.  My surgeons were Dr. Raphael Tamago and Dr. Charles M. Stewart at John Hopkins.  I would recommend both.  Dr. Stewart takes the time to explain every detail and answers all your questions.  I never felt rushed when i had my office visits. (I was a nervous wreck and always had a bunch of questions.)  He seems to truly care about his patients.  Dr. Tamago seems to be very confident about his work, and from what I gathered from my hospital stay he is very cautious about the treatment of his patients post op.  Whenever I asked anything about my treatment and the nurses or other doctors found out that I was his patient, i would hear, "Well usually we would let you do that within x days but Dr. Tamago will wait longer to be sure that ___ doesn't happen".  One of the nurses explained to me that he is like that with all his patients.  I mean, everything from taking my first shower after surgery to leaving the hospital.

I had my surgery on 7/26 and I'm doing great. I'm up and about trying to move on with my life.

[skipg]

Hi Kara,
I had my yearly MRI in July with consult on Aug 8th. The AN had a growth spurt and I had developed some slight symptoms. The surgeon went over options but did not push surgery. Talked about G Knife, Cyber Knife, and FRS. I started to go into a panic mode with all that is coming up. State Motorcycle Rally in Sept, Season tix to college football games, large family reunion dinner in PA Christmas time, and daughters wedding after the 1st of the year. Time to slow down and not let this thing control my life. God and I are in control and we will make the right decision at the proper time. Life is a day at a time and we (God and I) will decide what to do. Take your time, do your research, and take to heart what Clarice wrote. In the meantime I am awaiting info and decision on Proton Therapy. Keep us informed and enjoy life. PS - My wife and I went for a 300mis motorcycle ride yesterday and had a great time.
Skip

[Raven]

I had surgeries done on both sides 8 days apart by Dr. Eisenman and couldn't have been more pleased with the results. I know someone else who Dr. Eisenman did middle fossa on and her hearing was preserved. Ask away with any questions you may have.

[elderbirds]

Hi Kara,
I had surgery at Hopkins with Drs. Weingart and Holliday.  I also consulted with Drs at University of Maryland and HEI.  I  had a good experience with Hopkins as well.  good luck in your decision-making process.
Hope

[karascott]

Thanks guys,

You all have really helped me. I had my hearing tested last week and I have no hearing loss whatsoever. What next? Only God knows.

[millie]

Hi Kara-
Welcome to the forum.  I am a newbie, diagnosed February with a second MRI showing a growth spurt so I decided to take action.  After research, I have decided to have surgery.  The last six months, my hearing has totally eroded in my left ear and I get a full-headed feeling I did not have months before.  I think that is the growth spurt but I am not a doctor...!
At any rate, try to remain calm-I know, easy for me to say- and I almost went bonkers myself.  Maybe I have! However, I called some folks on the willing to talk list and the first thing I learned was "there is life after acoustic neuroma."  The next thing I learned was I needed to educate myself about acoustic neuroma.  I found great comfort in this forum, whose website I learned about after I asked one ENT  about support groups. I did the watch and wait and had a second MRI in July.
I went to several doctors and listened to opinions from January through July-and made a decision.
I feel better now and am waiting until October 17th after which I hope to restart my life.
Actually, I considered Johns Hopkins  myself and have all the forms in fromt of me still;  it is  very highly regarded. I too  sent my MRI's to HOUSE and got a call back within a week. You can do the same just to get another opinion. I decided on NYC as it is closer to me and I think has excellent doctors, too. 
Meanwhile life as we know it keeps happening-marriages(my son gets married Friday) divorces illnesses underemployment but WE CAN DO THIS!  We have a lot to be grateful for, and life is still good.  This is doable-it is an adjustment, but it is doable.
Prayers and positive thoughts.
Millie

[grammyslim]

check ALL your options - surgery is NOT always the answer.