New Member, AN in San Antonio

[a_schumann1]

Hi, I am a 37 year old male recently diagnosed with an AN on May 8th.  My symptoms were progressively louder tinnitus and slight hearing loss in the left ear.  My wife and I just had our third "and final" baby in April and I figured I'd go get a hearing check since we met our deductible already for the year...

I saw Dr. Perry in San Antonio for my initial visit.  He wanted to be thorough so we did an MRI...  and I'm the lucky winner of an AN. Yah!  The size is 18mmx 15mmx 12mm.  My tumor is located more outside of the IAC.  I'm still learning all of the terms.  The round mass is located in the slight bend near the brain.  I've jumped in with both feet getting multiple opinions.  Right now I have seen two teams made up of 1 Neurologist and 1 Neurosurgeon.  Dr. Perry's counter part is Dr. Bogaev in San Antonio.  I liked them both.  They referred me to MD Anderson in Houston for my second opinion.  While there, I spoke with Dr. Gidley and Dr. Raza.  I had heard of Dr. Gidley from this ANA discussion forum but not anything about Raza.  Raza looks to be new and was a young doctor.  So far all the docs except for Raza suggested surgery.  Dr. Raza in Houston (neurosurgeon) wanted to take the watch and wait approach since we only have one snap shot in time of the tumor size and don't know if it's growing.  After talking with Dr. Bogaev in SA he agreed lets take another scan in August and put a plan together.  I am torn, I like both groups of Dr.s.  Any recommendations for either team?  Dr. Perry and Bogaev sound like they have done tons (900 ish surgeries).  I know Dr. Gidley has done a large number as well and Dr. Raza just specializes in skull tumors and sounds qualified.  He said he does 2-3 tumor surgeries a week, (not just AN, other tumors as well).   

Sorry to ramble.  I'm just trying capture as much info as has been crammed in my head over the last few weeks.  With three young kids at home (3yr, 1yr, and 4 week old) this has been pretty difficult to digest.  I'm trying to keep my spirits up for my family and especially my wife.  Talk about an overload for her. 

Where to go from here?  I have follow up appointments with both teams in August.  Now to sit and wait for the follow up MRI to look for growth.  I've been smoking my keyboard working the Google machine trying to soak up every bit of information as I can.  I am a mechanical engineer and researching info is right up my alley, just wish this was for something else.   On this positive side, it's not one of my children, and I think I can handle what ever the outcome.  I just want to make the best decisions as I'm sure all do. 

Anyone here is SA used Dr. Perry and Bogaev?  Anyone use Dr. Gidley and Raza?  Any specific questions you can recommend for my follow up appointments in August when we re-scan and look for growth?         

Thanks in advance!

Adam. 

 

[ANSydney]

I like the multiple doctors (Dr Raza and Dr Bogaev) recommendation to do another MRI in 3 months. This will tell you if the tumor is still growing and by how much.

[Mrd1030]

Hi, I also was diagnosed with AN first of May 2018.  This AN is 2.2cm located in my right ear canal.  I was referred to Dallas, and saw a very thorough Team of Dr’s.   I am 56 years old, 2 grown children and 3 beautiful grandchildren, married to my high school sweetheart for 38 years in July.
I have chosen to watch and wait sine this AN was discoved with the only MRI I have had.  My only symptoms are 50% hearing loss in right ear and constant tinnitus.  We will image again in September to determine if growing.  My Team of Dr’s shared that I was a patient that should weigh all options and did not have to get in a hurry.  I am healthy, continue to exercise daily-this helps maintain my balance, and have a strong Faith.   I know and understand the anxiety our diagnosis has caused- just remember you just learned of the tumors existence- make the decision that gives you peace.  I look forward to hearing your decision.

[Greece Lover]

Sorry to hear about your condition.  Welcome to the club!  Did the doctors give you any indication about chances of saving your hearing from the surgery? Which approach would they do?  (There are generally three surgical approaches.) 

Research is good so you can make an informed decision. At some point you have to trust your gut, too.  I'm also inclined toward research, but you don't want to/can't second guess your decision.  I'd think having the most experienced surgeons would be important.  Also ask for percentages at their institution of facial nerve recovery, etc. 

Good luck!

[Blw]

I too live in San Antonio and saw Bogaev as a second opinion. He is very good, however, San Antonio is not an AN center, so if you are thinking surgery, go to a place that does them all the time. My ENT is Syms at the ear clinic, MD/PhD and a very good center that can run every test you need (and some you don't!), he reads my annual MRIs. MD Anderson, I think had a center and there was a well known guy there, I forgot his name. However, I and a couple of other people here were treated at U Virginia by Dr. Sheehan, who was trained by the best guy in the world for gamma knife of these tumors (Lunsford? at Pittsburgh). Sheehan and his team are fantastic and they run one of the oldest AN centers in the country using gamma knife to treat (although I think he also uses surgery). Best advice is to get opinions until you are sick of getting opinions, you learn something new every time.

[Brooks56]

I know this is an old post but curious if there was any follow up.  My situation sound remarkably similar to the OP (37, just diagnosed, minimal symptoms with some hearing loss and tinnitus) so very interested in what route you took and why.  I’m in San Antonio also and currently with Dr. Syms at EAR Group who is leaning towards surgery but I work in the medical field (in a non-medical function) and our CMO recommended Dr. McManus.  I’m also seriously considering a trip out to MD Anderson.

[CHD63]

Hi Brooks56 .....

Many times people post one or two posts and then never return to follow up on here.  You can always reach out to the person via a Personal Message, if you click on the PM button on the left side of their post.  They will receive a notice via the email address they used at the time.  Worth a try anyway.

Clarice

[ANSydney]

Hi Brooks56 .....

If you do hear back, unless the OP doesn't want you to, please share.

[HTownANGuy]

Hi Brooks - If you come over to Houston I recommend Dr. Gildey and Dr. Demonte at MD Anderson. Here is a good podcast they do together that answers some basic questions

https://www.youtube.com/watch?v=9rNu9Yryj1A

[Blw]

I know this is an old post but curious if there was any follow up.  My situation sound remarkably similar to the OP (37, just diagnosed, minimal symptoms with some hearing loss and tinnitus) so very interested in what route you took and why.  I’m in San Antonio also and currently with Dr. Syms at EAR Group who is leaning towards surgery but I work in the medical field (in a non-medical function) and our CMO recommended Dr. McManus.  I’m also seriously considering a trip out to MD Anderson.

If you have good insurance, travel to the best places. They are listed on here. How do you like Syms? I'm about ready to change. He does my annual, problem is you don't see him, you see a PA.