ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: marsha G on October 25, 2009, 09:27:06 pm
-
I was diagnosed with a 5mm x 5mm AN last March. I chose watch and wait, as recommended by my doctor, Jeffrey Vrabec, Baylor College of Medicine, Houston, TX. I just went back for my follow up MRI and my AN is growing....it has grown 1.5 mm in 6 months. Now Dr. Vrabec says I need to do something.....sugery or radiation. My hearing loss went from 30% to 60% in those 6 months also.
Does anyone know any studies or have information about the new endoscopit procesures being performed at the Skull Base Institute?
Dr. Vrabec seems to be a very good doctor......very understanding and caring, but the description of the surgeries really scared me. He was not high on the radiation treatment. His man concern was the lack of information on long-term problems. He did; however, admit that he was a surgeon and that if I asked a radiologist I would probably get a different answer. He said he would support either way.
Also, if you travel out of town for surgery, how long before you can return home? Can you fly?
Newbie in need of help.
Marsha
-
Hi, Marsha! Welcome - glad you've joined us, but sorry you've had to...think there are several here on the forum who had Dr. Vrabec. You can search his name and some threads should pop up giving you some members you could talk with. Your tumor is still small and you should be a candidate for radiosurgery, as far as I know (which is not really much ;) ). I would definitely consult with a radiosurgeon, however. Most of us here met with several docs prior to choosing a treatment. It is ultimately up to you, but it's good to hear more than one opinion.
I don't know anything about endoscopic surgery, but do know someone here will have some info for you. There are at least a couple of people who had that type of surgery. Sure someone will be along today to help you out.
As far as travel after surgery, you can fly (many here have flown to different areas for their surgery). I flew home about 10 days after my surgery last year. No problem with the flying.
Again, welcome, and best to you on your AN journey,
Cindy
-
Also, if you travel out of town for surgery, how long before you can return home? Can you fly?
Hi, Marsha,
Just to chime in and agree with Cindy that post-surgical air travel is fine. I flew home to New Jersey from California ten days after my surgery and had no problems whatsoever. I think you can feel confident that your doctors won't release you to fly until you're ready.
Best wishes as you consider your treatment options.
Catherine (JerseyGirl 2)
-
Hi, Marsha -
those on the forum who are patients of Dr. Vrabec are very happy with him and I've only heard good things - but surgery isn't for everyone. Patients choose surgery or radiation for various personal reasons and you should choose your treatment option based on what is best for you. I had the choice and while I initially thought I'd choose radiation, I ultimately chose surgery.
That said, you've already heard about surgery from Dr. Vrabec, so if it were me, I'd get up to speed on radiation.
Endoscopic surgery is still relatively new in the AN world - not unheard of, but relatively new. There is a very good probability that it will be the wave of the future. Those who have had endoscopic @ the Skull Based Institute (SBI) with Dr. Shananian are very happy with their choice. You can find their posts by searching under SBI or Dr. Shananian.
Whichever treatment option you choose, it's key to have doctors who are experienced. The ANA has some excellent brochures that will help you make your decision; if you haven't already, you should contact them and ask them to send you some.
There's also us here on the forum who will help you in anyway we can. Please don't hesitate to ask us anything - or to just lean on us for support. We've all "been there" and are now here for you.
Best,
Jan
-
Hello, Marsha ~
I'm a little late with this reply and see that other members have sufficiently answered your questions so I'll simply add my welcome and my hope that these forms will continue to be a resource for you as you research your treatment options.
Jim
-
Hi Marsha,
Welcome to the Forum - but sorry you have to join this exclusive club ::)
As you consider all of your options, i agree with Jan and think you should thoroughly research radiation - Dr. Chang at Stanford is said to be one of the best and i believe will give you an opinion if you send your MRI pics there. Ultimately, of course, it is your decision - we, on the Forum, will support you in any way possible.
My thoughts and prayers are with you on this journey.
Keep us posted.
Sincerely,
Sue
-
Thanks everyone for all the information and good vibes. I am going to the support group meeting in Houston on 11/14. I believe they have a radiologist speaking. So, I hope to learn much more about that.
I have been reading a lot of the postings and everyone is so nice to share their experiences. It is good to "talk" to others who have been through the decision-making process. So much of the literature is full of nothing but all the bad things that might happen. I am glad to have read a lot of postings about successful recoveries without many complications.
I will let you guys know what I decide. Thanks again for the support.
Marsha
-
Hi Marsha,
I wanted to welcome you to the forum. You have already been provided with good information. I think it's a good idea to research all your options before you make a decision which we all know it's a tough one. Good Luck.
Vivian
-
Welcome to the forum! I too had questioned the endoscopic treatments, but that is so new, and when googled, I found a few negative stories. So, I ended up choosing the Middle Fossa approach (11/9/09...coming very soon). I also researched other options, but for me, concluded I want it out of my head. I had been on watch & wait too, and that was very hard like it was for you, but this anxiety before surgery........UGH!! ::)
Best of luck with everything!!
Denise
-
Welcome to a place with a great bunch of helpful, caring and sensible folks. Looks like you've already received lots of good suggestions, so again..welcome!!
-
Marsha -
attending the local ANA meeting is a great idea and radiation couldn't be a more timely topic for you.
I think that Brian (Pooter on the forum) had his surgery with Dr. Vrabec. You might want to contact him to ask about his experience. He also has a link to his blog on his user profile. I was just reading it this morning; you may find it helpful also.
Deciding on your treatment option is one of the hardest parts of the AN Journey. Please let us know what you decide.
Best,
Jan