Recent Posts

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Radiation / Radiosurgery / Re: 5 year update- Still a Great Outcome!
« Last post by MarlaB on April 16, 2021, 11:09:05 am »
I just wanted to let you know that sometimes, after a while (it's been three years since this post) people might not log on to the forum...do not despair!

You can do a search in the forum archives for other folks who posted about proton therapy.

Wishing you the best!

Marla B.
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Radiation / Radiosurgery / Re: Proton Therapy OHSU
« Last post by leek on April 16, 2021, 09:46:46 am »
Wondering how you're doing now? I've just started researching my options here in the Boston area and am interested in proton therapy. My AN is 1.8cm, grew a lot last year so I need to figure things out soon. Having lots of balance issues and would like to fix this ASAP
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Radiation / Radiosurgery / Re: 5 year update- Still a Great Outcome!
« Last post by leek on April 16, 2021, 09:37:44 am »
Would love to get an update on this Proton beam therapy outcome. Any problems with facial paralysis?
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AN Issues / Re: Referred by Dr. Google...
« Last post by Greece Lover on April 16, 2021, 08:23:11 am »
Good luck today and let us know what happens.  One "GOOD" thing about these tumors (if you even have one) is that they're rarely an emergency.  You have time. But you're also right--it's hard not to be anxious.

I live in Iowa now, but I spent 7 years in New Jersey.  Didn't think I would ever miss it, but sometimes I do!

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Microsurgical Options / Newbie: watch and wait or surgery?
« Last post by alschneid on April 15, 2021, 05:22:05 pm »
Hi all,

I was just diagnosed with a 1cm AN. I had an MRI in March 2021 after c/o tinnitus in my right ear. I met with Dr Leonetti at Loyola and he is recommending retrosigmoid surgery to remove it. He said that was the best option to preserve my hearing. I have only slightly diminished hearing to high frequencies, no other symptoms or issues with balance, headaches, etc. I'm trying to decide if I should watch and wait or move forward with surgery. I'm 30 y/o and was hoping to start trying for a baby soon. I'm leaning toward removing it so that I can move on with life and hopefully forget about this AN. Does anyone have any advice? I've searched the forum for experiences with Dr Leonetti / Dr Anderson at Loyola and read mixed reviews, mostly about Dr. L's bedside manner. I wasn't impressed with his bedside manner either, but he and Dr Anderson do have a lot of experience. Any thoughts would be greatly appreciated.
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AN Issues / Re: Referred by Dr. Google...
« Last post by MaureenInNJ on April 15, 2021, 01:55:14 pm »
I was speeding reading thru your post so if I missed this my apologies.

I would insist on an MRI with contrast to finally determine if you do or don't have a AN. 

You have to be your own health advocate!

Good luck.

This is something I have learned well over the years. It is unfortunate but true that we can too easily be dismissed. Or symptoms can be chalked up to anxiety, etc. My appointment with the neurologist is tomorrow, Friday, afternoon. I certainly plan to push for an MRI with contrast and just move this along. If this doctor doesn’t agree, I will start the process of finding a new one. Which of course is never fun because it’s impossible to get appointments in a timely manner, but we do what we have to!
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AN Issues / Re: Referred by Dr. Google...
« Last post by MaureenInNJ on April 15, 2021, 01:51:47 pm »
Maureen,

RELAX. Whatever happens it will be OK!  One reason on here you read stories like yours that always result in the tumor is because people who didn't have a tumor DON'T COME ON HERE! There are lots of things that can cause various symptoms. No need to freak out over what you don't know. (I know it's easier said than done.)

That being said, maybe a second opinion would be a good idea, or at least go back to the Dr. to have her/him explain why the CT instead of the MRI. 

Good luck!

Indeed. Whatever it is, intellectually I know that worrying about it does nothing! Most things in life are simply out of our control.

Trying my best to not obsess, working on taking this one step at a time. It ain’t easy
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AN Issues / Re: Referred by Dr. Google...
« Last post by chloes mema on April 15, 2021, 07:19:56 am »
I was speeding reading thru your post so if I missed this my apologies.

I would insist on an MRI with contrast to finally determine if you do or don't have a AN. 

You have to be your own health advocate!

Good luck.
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AN Issues / Re: Referred by Dr. Google...
« Last post by Greece Lover on April 13, 2021, 02:26:53 pm »
Maureen,

RELAX. Whatever happens it will be OK!  One reason on here you read stories like yours that always result in the tumor is because people who didn't have a tumor DON'T COME ON HERE! There are lots of things that can cause various symptoms. No need to freak out over what you don't know. (I know it's easier said than done.)

That being said, maybe a second opinion would be a good idea, or at least go back to the Dr. to have her/him explain why the CT instead of the MRI. 

Good luck!

10
AN Issues / Re: Referred by Dr. Google...
« Last post by MaureenInNJ on April 13, 2021, 11:04:46 am »
Thank you so much for your reply, and sorry for the flashbacks!

I will be seeing a neurologist before the follow up with the ENT and I am so nervous.

I have no idea what to expect at this consultation, but it has to be done.

Guessing there will be some balance tests, etc.? Either way, hopefully the neurologist will order the correct testing and go from there.

But I am not looking forward to it!
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