Author Topic: AN Newbie  (Read 1191 times)

Pbellovin

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AN Newbie
« on: November 07, 2018, 12:10:49 pm »
I live near Dallas Texas and was diagnosed about 3 weeks ago with  a 1.8 cm AN by my ENT after having an MRI. I had appointments with a neurosurgeon, neurotologist and Radiation Oncologist and was informed about all of my options for treatment. I received pamphlets and information from the An Association and have done extensive research online. I am now more confused than ever. Can anyone suggest whether or not I should seek a second opinion from another group of AN doctors or simply stay with the first group who I felt were quite competent. I would appreciate any help and suggestions anyone can offer and I thank you in advance for your replies. I’m an almost 70 year old woman who is terribly confused and frightened

ANSydney

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Re: AN Newbie
« Reply #1 on: November 07, 2018, 04:48:13 pm »
These are slow growing tumors so you have time to consult, reasearch and read post in this forum. There is no rush.

I would get multiple opinions from multiple types of specialists. In my case, I also did a lot of reading. I was diagnosed just over 2 years ago and my tumor has not grown since diagnosis. Most tumors do no grow (by more than 2 mm) following diagnosis https://www.bhtinformatie.nl/pdf/ingrijpen.pdf .

Take a look at http://etheses.bham.ac.uk/3748/1/Martin12MD.pdf for more information.


notaclone13

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Re: AN Newbie
« Reply #2 on: November 07, 2018, 08:42:57 pm »
Welcome Pbellovin,
Your feelings at this point are identical to what of all us feel when we first learn we have an AN, scared, confused, and totally uncertain about how to proceed. Many of us are 60+ and the idea of having brain surgery to remove the little bugger is just not appealing. At our age, we may not be good candidates for surgery. Many folks in our age group opt for radiosurgery such as Cyberknife or GammaKnife. Quite a few have shared their experiences with us through their daily postings and as we learn we become less confused and afraid. Others on the forum are in the “watch and wait” mode. These are benign tumors that usually grow slowly or even stop growing for various periods of time as ANSydney mentioned. You have time to read, learn and get more opinions before acting. I just entered “Dallas” in the forum search box and many posts came up. I think there is a support group in Dallas as well. You are among friends here and will find knowledge and support. We are all in the same boat and keep each other afloat.

v357139

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Re: AN Newbie
« Reply #3 on: January 17, 2019, 10:48:19 pm »
Pbellovin,
What did your doctors propose?  At that size, you probably have time to get another mri in six months to see if it grew at all.  As a point of reference, mine was 3.5cm.  Alot of people your age do opt for radiosurgery to avoid the risks of surgery.  But I do know of one person around your age who had surgery and it went quite well.  My father had knee surgery at 82.  So while radiosurgery is quite common for someone your age, it is not a hard and fast rule, unless the doctors think your physical condition is not strong enough for surgery.  Also, some people do wait and watch with periodic mri, and sometimes it does not grow any more.

I suggest you ask one of the doctors you consulted with if you can wait for another mri in six months.  If he agrees, it may give you the "breathing room" to reduce the pressure on your mind.  Then you can get more educated, and weigh the pros and cons of the alternatives without feeling rushed.  And it's generally good to get several opinions from very experienced teams.
Rich
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

jaylogs

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Re: AN Newbie
« Reply #4 on: January 22, 2019, 07:08:56 pm »
Greetings! Welcome to our little club! So sorry that you are here but you found one of the premiere sources of support and information for all things AN.  Like ANSydney said there is no rush in getting information on this. People will either go with radiation treatments or the surgery route.  At some point almost everyone will get overwhelmed with TOO much information and I always believed that it was the part before treatment that was the hardest part.  Take advantage of the keyword searches on here and that can help you with other people's experiences that will eventually help you arrive with your own decision.  Just know that once you do make that decision, whatever it is, will be the right one.  Take care and good luck.  Let us know if you need anything!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston