Author Topic: Newly diagnosed  (Read 2254 times)

Andrewk2424

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Newly diagnosed
« on: April 15, 2018, 03:13:04 pm »
Hey everyone, I was newly diagnosed with AN just yesterday.

Back story, I'm 26 years old and a Police Officer and I noticed about 6 months ago I was feeling dizzy or off balanced and my ears were ringing a lot. I pawned it off as nothing at first. After a little while I went to my family doctor and he ran a battery of tests on me and said I was fine. I even went to an ENT and as cleared. I was certain something was wrong but was told I was having anxiety as my wife and I are expecting our first child in roughly three weeks (extremely excited to meet her!). I pushed for an MRI because I've known it wasn't anxiety. I got my MRI done last Tuesday and was told just yesterday that I have a VERY VERY small Schwanomma. I didn't ask how big or anything because it was a phone call and I guess I was just more shocked and in panic moe than anything. I was advised by my family doctor, who is great and I trust him with my life, to not panic and I had absolutely nothing to worry about because it was that small. He's sending me to a very good ENT doctor next week.

I don't know about anyone else, but I am in absolute panic mode even though I was told its so small. I guess my off balance, dizziness symptoms get the best of me pretty regularly but now even worse. There are days when it's not that bad, but others I feel like I need to just sit down and not move at all. I have a family history of cancer as well, my older sister passed away when she was 14 in 2004 from Synovial Cell Sarcoma. She was an incredible person and though I know that was probably an anomaly, getting this news brings me back to that and its got me on edge. I'm also terrified of surgeries and I don't have to, I would really rather not have my brain cut into (sorry it just terrifies me)..

Anyways, I'm really looking for more information about very small Schwanommas. Is there anything I can do to help the symptoms go away so I can get back to a somewhat normal life? Should I consult with more doctors? Should I consider surgery? As I said, I was told and it was emphasized that this is VERY VERY small almost missed actually and I have nothing to worry about and was told to basically live my normal life because otherwise, I'm as healthy as an ox.

Hopefully I can get some great suggestions to help me through this time in mine and my families life, as all I want is the best care and to provide my wife and daughter with the best life possible without this become an overwhelming interference. I thank you all in advance and look forward to speaking with you!!

Thank you!


gary.s

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Re: Newly diagnosed
« Reply #1 on: April 15, 2018, 07:17:27 pm »
Hi Andrew2424,

I guess my first piece of advice is to find a top rated neurological hospital that has doctors dealing specifically with acoustic neuromas. I am not sure where you live, but a neurologist is the person who treats these tumors. Also, try to relax, these are very slow growing tumors, usually 1-2 mm per year. Many of them show no growth for long periods of time, so MRI's will be necessary to see if the thing is growing. A neurologist might have you watch and wait for a period of time to see if any growth has occurred.

The symptoms you are having are very common with our types of tumors. They come and go, at times get worse and then mellow out. Try to enjoy your family and the best of luck with the new baby. You will be okay, just take it easy.

Gary
Mild symptoms on right side July 2014
CK April 16-20, 2018, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B

Jakey

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Re: Newly diagnosed
« Reply #2 on: April 19, 2018, 05:08:42 pm »
Hey, just came across your post by dumb luck, I haven't been on this AN board for four or five months or so, and I only logged on today because I'm going to have my very very small acoustic neuroma treated on Monday.

My AN was diagnosed last September.  I have ringing in my right ear going back to last June.  My ear also felt full, like I had water stuck in it.  Other than that I felt fine.  It wasn't painful or anything, just annoying.  The tinnitus was pretty bad, like a constant very high pitched electronic whine 24/7.  After complaining about it for three months or so, my wife said, "better have it checked out."  Went to an ENT & had a hearing test, my first in probably 40 years (I'm 52).  My hearing had always been excellent, like crazy good, as I could hear things others couldn't, yet the hearing test showed slight hearing loss in my right ear.  ENT was like, "it's a one-in-a-million chance you have this thing called an acoustic neuroma, but you should have an MRI."  He diagnoses maybe 1 a year (and I live outside NYC, in one of the most densely populated areas of the country).  I get the MRI, and sure enough, a 3mm acoustic neuroma RIGHT on the friggin' junction of the nerve.

Anyway, I got nervous too.  It's normal.  But 99.9% of these things are benign, so you can relax that it's highly unlikely to be cancerous.  Like me, you should be really happy that you're so lucky they caught it so small & so early.  It gives you a much better chance for preserving your hearing, and it gives you more options for treatment.

So I get diagnosed last September, and after talking to three different doctors (one highly respected surgeon in NJ; Dr Slattery of the House Clinic in LA (who I loved, by the way.  Great guy.); and Drs. Sisti & Wang at Columbia in NYC, who are simply amazing & also fantastic guys), I decided to "watch & wait."  When it's that small, 3mm, you really don't have to do anything, as long as your hearing is still okay & you can deal with the tinnitus.  Don't get me wrong, the tinnitus sucks, but I can handle it.  The plan was to see what happens, and maybe in 5 years or so, the AN would be big enough that I'd have to treat it.

Well anyway, since last September, I felt that my hearing in my right ear has gotten noticeably worse.  Last month I had my second hearing test, and sure enough, it is much worse.  When I shared the test with Dr. Sisti, he was surprised that such a small AN could cause such dramatic hearing loss.  It must be due to its location.  Just my bad luck, but hey, if it wasn't where it is, and affected my hearing like it has, I probably never would have caught it.  It's important to note that while my right ear hearing is not very good, it's still functional.  I have a corporate job & I'm in a lot of client meetings, but the only place it really affects me is loud noisy restaurants & bars.  Anywhere with lots of background noise.  Then my right ear is pretty much useless.

Given how badly my right ear hearing has declined in only six-months, I'm not going to wait, so it's this Monday for Gamma Knife treatment by Sisti & Wang on my tiny 3mm AN.  I have a feeling it's one of the smallest they've ever treated.  It's a five-day treated using a "fractional" approach to the radiation, so rather than get one big dose one-time, you get one-fifth the dose over five days.  Safer, and better odds of not frying your auditory nerve & losing all hearing in that ear.

I hope this makes you feel better.  When I was first diagnosed, I thought surgery was the only option.  I just wanted that thing out of my head.  But after reading up on both approaches, surgery vs. gamma knife, I'm certain I'm making the right decision with radiation.  Not only because I won't be subjected to an 8-hour surgery & many months of rehab, but also because I believe this approach gives me the best odds of preserving my hearing.  And as for recovery, I plan on going into the office after each treatment next week.  That may change, but that's the plan.

LMK if you have questions or want to connect.  It seems like most people on this board have medium-to-large ANs, and in those cases, surgery is the only solution, and it can be really scary & life-changing.  But trust me, catching it so small gives you a huge advantage over most folks.  And as someone once told me, "If you're gonna get a brain tumor, this is the one you want."

Cheers,
JK 

Yeagersi

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Re: Newly diagnosed
« Reply #3 on: April 27, 2018, 02:58:09 am »
It's the information I'm looking for.