Author Topic: Just diagnosed. Scared and confused  (Read 1244 times)

chicagorose

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Just diagnosed. Scared and confused
« on: January 24, 2018, 09:48:18 pm »
Hello,
I'm new to this forum and I'm nervous. Since sometime in October 2017, I thought I had an ear infection. I had pain, pressure, fullness and hearing loss. I didn't go to the dr. right away because I thought it would go away. Fast forward to December 2017, when I finally went to a clinic only to be told that I had and ear infection and was prescribed antibiotics. I was advised then to see an ENT since this was not my first ear infection, but was my third round with antibiotics. On January 16th of 2018, I was diagnosed with AN after having a MRI. I was told that my tumor is small, about 4.5 - 5mm; however, I'm not able to get a lot of information about this condition. I saw a specialist today who, after bombarding me with a lot of talk, asked me if I had to make a choice today, what option would I choose. I was surprised at his reaction when I replied "it's a brain tumor and I want it out." He chuckled a little and said, "you'd want to go through surgery and the recovery time for something that's so small?" I have to admit, I was in shock and confused and trying to make sense of things since all of this is extremely new for me, when I told him that I didn't know. Anyway, I do have an appt. with a radiologist and a neurosurgeon next week. What can I expect with this condition? Would I be a candidate for a hearing aid? Has anyone ever had surgery to remove a small AN? If not, what were the options people took? Where do people find support when dealing with this? I don't have the support of family, so I'm dealing with this alone. I've had two hearing tests done - the first was done on 12/26/17, the second done on 1/16/18, the second showed a decrease in hearing, but both still put me in the "mild" loss category. Could this be an indication of how the tumor is growing? Sorry for all of the questions, I'm just trying to wrap my head around this entire situation. To be honest, from diagnosis until now, these past 10 days have been the wildest roller coaster ride I've ever been on.

Thanks

AL-Tcw

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Re: Just diagnosed. Scared and confused
« Reply #1 on: January 25, 2018, 05:08:16 pm »
Hi, I also have recently been diagnosed 1/10/18 with a AN 3.2cm x 2.2 cm from what I understand it is already large. In our quest for information we were told from someone very familiar with this to slow down this is slow growing and that wait & watch in small AN's is actually a treatment. This site was also recommended & seems to be a good source for support.  Some larger cities have support groups. I also have been in a state of shock so for me I pray & try to find peace.  I go for a consultation for a treatment plan 2/01 I am not looking forward to it but then again it can't come fast enough. I wish you well. 
Diagnosed 1/10/18 AN 3.2cm x 2.2cm
Translab 8/30/18 (Facial Paralysis) Cyberknife 12/18-20/18, BAHA abutment 12/28/18

MarlaB

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Re: Just diagnosed. Scared and confused
« Reply #2 on: January 25, 2018, 08:30:25 pm »
Have you looked to see if there is a support group near you? Some smaller cities have groups too!

Breathe. We understand you are nervous.

Marla

alabamajane

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Re: Just diagnosed. Scared and confused
« Reply #3 on: January 26, 2018, 07:49:27 am »
AL-Tcw,,
Welcome,, sorry you are on this journey but there is support here.

We do have a support group in Mobile. As I understand, it is the only one in the State though unfortunately. We don’t have a meeting scheduled right now but should before too long. Maybe that would be convenient for you,,, I can give you the group leaders contact info if you like.

If you would like another opinion locally after seeing Dr Swaid,, you may try at UAB. Dr Ben McGrew and Dr Winfield Fisher are a good team. You could speak with them and see what their recommendations would be. Just a suggestion,,,
I too spoke with Dr Slattery on the phone and he was excellent!

Good luck to you,,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

chicagorose

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Re: Just diagnosed. Scared and confused
« Reply #4 on: January 27, 2018, 07:50:30 pm »
Have you looked to see if there is a support group near you? Some smaller cities have groups too!

Breathe. We understand you are nervous.

Marla

Hi Maria, I live in Chicago, and I have to check to see if there is a group here. I'm definitely trying to relax and breathe, but it's hard, especially since the vertigo and nausea are worse.