Author Topic: Newly Diagnosed with 3cm AN on Right Side - Starting the Journey  (Read 1165 times)

ChrisH

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Hello everyone - I am one of the lucky ones in the AN club now  ;)

I went to the ER a month ago and received a cat scan.  They came in and said "we found a mass".  Wow, that hits you hard!   They said it was probably small and nothing to worry about and they would get me in for an MRI to see more details on it.  I got the MRI and spent the night in the hospital.  The next afternoon, the neurologist visits me and says "they told you about the tumor right"?.  I said yeah, they said I had a small mass.   He said it is not small at all, it is 3cm and pushing on your brainstem.   ???

How do you prepare yourself for that?

So I started doing research and this site has been so very helpful in understanding the situation and treatment options.

I will be having Retrosigmoid surgery with Drs Tamargo, Kaplan and Chien on October 16 at Johns Hopkins.  I like that Dr Tamargo has done over 800 of these surgeries.  It seems like surgical experience with this type of tumor is one of the most critical aspects to a successful surgery and recovery. 

I am super nervous but at the same time I just want it out!   

I will keep everyone updated as I go through this Journey
Diagnosed with 3cm x 2.5cm x 2 cm 7/19/18
Having Retrosigmoid surgery 10/16/18 with Drs Tamargo, Kaplan and Chien at Johns Hopkins

mac84

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Re: Newly Diagnosed with 3cm AN on Right Side - Starting the Journey
« Reply #1 on: August 21, 2018, 09:04:22 am »
Chris, welcome. Wow, I hope they at least told you "It's likely benign". Good grief! It's scary enough as it is! 

You're in the right place....you're zooming down the road to treatment so will be bypassing most of the other stuff on here and right into "Post Treatment". I am in the watch and wait camp but would think other will agree that you should not zero in on bad outcomes or issues you see on here. Not everyone has those. Plenty have great outcomes....some don't even post about those! Hang in there.

Cary
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth but hearing deteriorating - MRI 2 yrs
Fitted with Resound Linx 3D 5/18

ChrisH

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Re: Newly Diagnosed with 3cm AN on Right Side - Starting the Journey
« Reply #2 on: August 21, 2018, 09:06:53 am »
Thanks Cary - Yes, that was the first thing Dr. T said to me that it was benign which is a huge relief, but the whole process is very difficult to wrap your head around.  But it is great to know you are not alone and this community is great :-)
Diagnosed with 3cm x 2.5cm x 2 cm 7/19/18
Having Retrosigmoid surgery 10/16/18 with Drs Tamargo, Kaplan and Chien at Johns Hopkins

notaclone13

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Re: Newly Diagnosed with 3cm AN on Right Side - Starting the Journey
« Reply #3 on: August 21, 2018, 11:20:30 am »
Welcome Chris,
Ditto to everything Cary posted above.  You are getting your surgery done at one of the best facilities in the world and have a very experienced surgeon.  I am expecting you will have a great outcome.  One of my friends had AN about the size of yours removed a couple of years ago.  He was a runner and in good physical condition prior to surgery.  He was back running a few months after surgery and ran a 10K 6 months post surgery.  He felt his relatively fast recovery (and zero complications) was due to being in good physical condition prior to surgery.  You will meet many friends on the forum who have gone through the surgery and had good outcomes.  Think positive.

M.A.

v357139

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Re: Newly Diagnosed with 3cm AN on Right Side - Starting the Journey
« Reply #4 on: August 23, 2018, 09:04:01 pm »
Chris,
Welcome and best of luck.  Mine was a shock also.  But it's great news that you are getting treatment.  Mine was almost 5 years ago and now I am doing great.  It is so behind me now.  Once you are done, please check in.  We will want to know how you are doing.
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!!

 


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