Author Topic: Recently diagnosed  (Read 736 times)

Kev003

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Recently diagnosed
« on: January 13, 2020, 03:49:27 pm »
Hey everyone, I’m new here and happy to have found I’m not alone. I’m a 26 year old female, and I was diagnosed on December 20th with a 4.3 cm x 3.2 cm AN on my left side. I stayed in ICU for several days until I had a ventricular shunt placed on December 24th, and was released the next day. I found out recently that my surgeon moved his schedule around and I’m now having the removal surgery on January 28th.

The crazy part of my story is that this wasn’t caught through symptoms. In fact, I had basically no symptoms except for some mild headaches. I went in for my yearly eye exam, the doctor thought she saw something in my eye, and referred me to a retina specialist. The specialist noticed it was actually swelling and fluid, and referred me to a neuro-opthamologist. I didn’t even make it to that appointment, as about a week later I had a couple days where I felt nauseous and threw up. I went to the ER to get scanned at the advice of one of my doctors, and that’s when they found it.

Everything has moved so fast since the diagnosis, I don’t think I ever had enough time to really process it. I’m staying positive though!

Anyway, thank you for taking the time to read!
12/20/19: Diagnosed with a 4.3cm x 3.2cm AN
12/24/19: Surgery to place a ventricular shunt

golfguy49

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Re: Recently diagnosed
« Reply #1 on: January 14, 2020, 07:55:27 am »
It is unusual, from what we see on this board and through other anecdotal information, to not have symptoms for an AN of this size.  Makes me wonder if the body and mind went to extreme lengths to protect you from realizing symptoms may have been present.  Best of luck with your surgery - which doc are you using?
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

Kev003

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Re: Recently diagnosed
« Reply #2 on: January 14, 2020, 08:29:44 am »
Thank you. Yeah all of my doctors have been shocked at the lack of symptoms. And like you said, especially for one of this size. They way it’s sitting right now I would have expected at the very least more severe headaches.
 I’m using Dr. Baskin in Houston for the surgery
12/20/19: Diagnosed with a 4.3cm x 3.2cm AN
12/24/19: Surgery to place a ventricular shunt

Colorado Alex

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Re: Recently diagnosed
« Reply #3 on: January 14, 2020, 11:15:51 am »
Wow.  Quite a story.  Welcome to the AN club (that nobody wanted to join).  I hope all goes well for you.  Keep us all posted.
Diagnosis 12/26/2019  2.1 x 1.9 x 1.4 cm left side AN, hearing 90%
Daily headaches.
Seeking multiple opinions.  Trying to keep it together until I have a plan.

Patti

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Re: Recently diagnosed
« Reply #4 on: January 14, 2020, 04:29:38 pm »
Wow! Best of luck to you. You are young and will recover. Do not lose faith! I was 38 when my large tumor was diagnosed. I, too, had no symptoms except for mild headaches that I attributed to allergies. Then for 3 weeks in a row I would wake up with severe headaches and vomiting. My doctor suspected AN right away and the MRI proved it. I had surgery very soon thereafter because of the size. Just to give you hope-I was not in good shape for a year afterwards, but I am looking and feeling great at the age of 57!!!!! 
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015