leapyrtwins!! Are you out there??

[Jeepers]

Hi there leapyrtwins ... and all others on this board!

I just registered here today. After 6 yrs of wait and see, my last MRI showed growth and I've met with Dr. Battista who is suggesting action be taken. I went through all the panic hoopla 6 yrs back when first diagnosed, but feel now that I will have to proceed with a decision, I should revisit some important questions. One, of course, is how well Dr. B worked for you. Did you meet with other Chicago area specialists too? Would you mind providing the good, bad and ugly of your surgery. It will be the same team of Battista/Kazan, translab that I am considering. Thanks so much!

I would love to hear from any other patients of Dr. Battista, as well.

My tumor is approx 1.5 cm, right side, only 15% hearing left in that ear, more noticeable balance probs in the past few months.

Encouragement welcome ... 

[Kate B]

Hi there,

Try reviewing this link.  It will help with Doctors around Chicago.

http://anausa.org/forum/index.php?topic=141.msg772#msg772

All the best,
Kate

[Jeepers]

Thank you, Kate.   

[Lilan]

Welcome, Jeepers, from another Chicagoan.

[Jeepers]

Hi Lilan - thanks for the welcome. Looks like you're almost set to head out to Calif, huh?
I have to remember to read the bottom of everyone's post to see their stats. Did you chat with any drs. here in Chicago?

This really is the part I dislike ... trying to decide between one tx and the other. I did get Dr. Battista to indicate surgery *might* be a better route to maintain and rehab my balance than the Gamma knife option, but he said at my age (57), I could really go either way.

My initial tendency is to agree with surgery, but I wonder if I should be taking a more serious look at radiation instead. 92-98% success rate is pretty darn good.

If any of you had the choice (smaller tumors), what were the main factors that made you choose surgery over radiation?

[Lilan]

Yes, I saw a lot of doctors in Chi. To say the least!    I have not met Dr. Battista, but his partner, Dr. Wiet, is very impressive and has been a great help to me. I was a hard case to diagnose and by the time I met Dr. Wiet, I was already in consultation with Dr. House and ultimately decided to stay on that course.

I have a different type of tumor (blood vessel) and though it's very small, every doctor recommended surgery. They all wanted me to W&W for 6 months, so during that time I did a lot of consults.

I would certainly give radiation a long, hard look if they think that's an option for you. Surgery is right in many cases but I feel content knowing I chased up every alley and exhausted the other options before taking it on!

[Kate B]

My initial tendency is to agree with surgery, but I wonder if I should be taking a more serious look at radiation instead. 92-98% success rate is pretty darn good.

If any of you had the choice (smaller tumors), what were the main factors that made you choose surgery over radiation?

Hello again,

Interesting to ask about smaller tumors.  My thought was to get it out if it was under 2 cm by surgery because of the good stats relative to facial nerve.  My thought was if mine had been between 2 cm and 3 cm,  I would have chosen radiation.  I believed in getting multiple opinions as I learned something from each doctor.  I saw Dr. Wiet and was very confident with him, but his main experience back in 2001 was Translab and Retrosigmoid.  Although retrosigmoid is listed as a hearing preservation type surgery, in my own personal experience, I had never met anyone who retained usable hearing afterword.  I decided to go to House to have Middle Fossa because it had better hearing preservation stats and House invented that type of surgery or the tool.  The size of my tumor was conducive to that surgery and I had 100% hearing going into the surgery.  I never regretted my decision.  Now as follow up, I go to Dr. Wiet in Hinsdale.

All the best,
Kate

[sgerrard]

If any of you had the choice (smaller tumors), what were the main factors that made you choose surgery over radiation?

I had the choice, and chose radiation. The main reasons were less trauma, a good chance of avoiding facial paralysis and other side effects, and a decent chance of hearing preservation. I got no complaints.

Steve

[kenneth_k]

Hi Jeepers.

You are in the fortunate/unfortunate position that you are able to choose.
I chose surgery because I really needed action. I was having symptoms 24/7 and was desperate to regain control of my life.

I didn't feel radiation would give me that. I would have to be monitored for possible growth the rest of my life.

Surgery was more risky, but since the tumor was in the small/medium range, chances for succesfull outcome were high. I knew I was going to loose hearing because of surgery, but that was a manageable trade-off.

We are all different, thank god, and I wish you luck in making a decision.

Regards, Kenneth

[Kate B]

We are all different, thank god, and I wish you luck in making a decision.

Well said Kenneth.

Jeepers, here is a link that you may find helpful relative to the decision making process.
http://anausa.org/forum/index.php?topic=9601.0

Kate

[leapyrtwins]

Hi, Jeepers -

sorry I was missing in action yesterday.  Am actually thinking of leaving the forum altogether and just participating on the WTT list, but that's another story.

Dr. Battista is one of the best and he worked very well with me.  IMO Chicago Ear has a better reputation than the other Chicago area docs out there - although some will obviously dispute this.  There is absolutely no reason for you to travel to California when there is such a great group right here in Illinois.  I have talked to many AN patients in the Chicago area in the past year, most recently a patient of Dr. Redleaf @ UIC, and I'm more confident than ever that I chose the right doctor. 

I have nothing but respect for Dr. Battista and I believe he'd say the same about me.  He believes in "full disclosure" and will tell you every possible side-effect statistic under the sun (no matter how small) and that can be frightening, but it's just his style.  He's honest, caring, and although some don't realize it, humorous.  He has lots of experience in radiation, AN surgery, and BAHA surgery.  He's also involved in a pediatric hearing loss program at Hinsdale Hospital, where in January he preformed their first double cochlear implant on an 18 month old girl.  If he said surgery "might" be better for you, I'd go with that.  In my case, he wouldn't tell me which choice to make, but I do know he's told others when he's felt there was a clear choice.

I would highly recommend meeting with Dr. Kazan, if you haven't already.  He's a very easy-going, confident man and he just sealed the deal for me.  He is the only neurosurgeon that Wiet/Battista will use and for very good reason.  I did not meet with other doctors - some of us do and some of us don't - because I felt no need to.  I really liked Battista and Kazan and felt no need to talk to anyone else. 

Hinsdale Hospital is a wonderful place to have surgery - very small hospital, private rooms, lots of highly qualified staff.  You can't go wrong.

I am more than willing to answer any questions you have - about Drs. Battista & Kazan, Hinsdale Hospital, my recovery, etc.  I will PM you my work and home phone numbers.  Please don't hesitate to call me.

Best,

Jan 

[Jeepers]

Thanks, Jan. I've already got an appt to meet with Kazan this Friday. 6 yrs back I also met with Leonetti at Loyola, who also has a great rep. At that time I chose to follow up my wait and see decision with Battista. I've never met with the radiation side of this. My gut is saying surgery, but ...   

I'm familiar with Hinsdale, as I'm local in the LaGrange area and used Hinsdale off and on over the years. I'm also a volunteer dog walker at the Humane Society across the street ... so improving my balance to keep walking those pups is extra special incentive ...   

Gotta get my butt outta here and get ready for work ... thanks for making the connection with me! 

psst ... what's WTT?

[nteeman]

Willing To Talk.

 

Neal

[leapyrtwins]

I think you'll like Dr. Kazan.  With such a stellar reputation, I expected a very cocky, pompous type but I was totally wrong 

He's very confident and very comforting; brain surgery is just part of his daily job - very routine to him and there isn't much he hasn't seen or had to deal with.  He and Battista make a great team.  Dr. Patrick Sweeney @ Alexian Brothers in EGV, who does GK with Wiet & Battista, is also a great doc.  Dr. Battista recommended I talk to both Kazan and Sweeney prior to making my decision; I'm sure he probably gave you the same recommendation.

That said, there's a lot to be said for going with your gut.  That's what I did - both in my decision not to get a second-opinion and on my choice of surgery.  You'll just know when it's "right". 

I may be wrong, but I think Meagan is a patient of Dr. Leonetti's.  She might give you some input on him.

Jan   

[Kate B]

I concur that Dr. Kazan is excellent.

Jeepers,

When I read your information, you have a 1.5 cm tumor with 15% hearing in the one ear. Are they suggesting translab surgery?

You mention that your balance is getting worse.  Are you listing as you walk, are you having to pay attention as you bound down the stairs?  What kind of symptoms are you having related to balance?

Kate