Author Topic: Recently diagnosed  (Read 970 times)

JOCO999

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Recently diagnosed
« on: February 17, 2020, 11:24:31 am »
Hello, I have recently joined this site and looking for some patient experiences/feedback.  As the subject line says I was recently diagnosed with a AN and for me the it has been very confusing.  The main point of my confusion is that I have been symptomatic while having a very small AN.  It started with a vertigo episode which for me is not totally uncommon but terrible.  These are debilitating with vomiting and extreme dizziness.  I have had about 9 or so of these episodes over the last several years and while I am not sure that they are caused by the AN that is how it all started.  After my last episode in December I was not feeling right for about 4 weeks.  I started having buzzing in my ear and just felt off knowing that my issues were all tied to the left side of my head.  After a primary care visit then to the ENT I had a hearing test done that showed significant hearing loss in my left year.  After meeting at the ENT the feeling was it's got to be Miniere's Disease and we should have a MRI done to rule out anything else.  I was put on 10 days of steroids and we planned on another hearing test to see if anything improved.  Shockingly on my next visit was when I had a small AN (approx. 7.5mm).  I was then referred to ENT surgeon that laid out my options.  Wait and see and surgery based on symptoms where the primary choices but I wanted to meet with the Neurosurgeon that he works with to discuss.  The Neurosurgeon is leaning towards Radiation, something that my ENT surgeon was not in favor of, so I am meeting with the Radiation Oncologist soon.  The struggle for me is why I am having so many symptoms and the tumer is so much smaller than other posts and articles that I am reading about.  I am a 45 year old male in good shape overall and just don't know what to do as it is so confusing.  I do have hearing in my left year and while it is deteriorating it is still functional so losing it all together is not something I want to see happen however wait and see seems like it will drive me crazy.  Thoughts?  Anyone in a similar position?  I should say I am located in Charlotte, NC in the even that anyone has another recommended physician.

Thanks in advance

kestes

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Re: Recently diagnosed
« Reply #1 on: February 20, 2020, 10:50:21 am »
Well Hello fellow Carolinian!, Columbia, SC here!  I had a small AN with terrible symptoms (12mm).  Hearing loss, fatigue, balance issues, and 24 hr tinnitus.  took 8 months to diagnos, but symptoms were present for 4 years at least.  In and of themselves they just ruled out age related as I was in my late 40s.  When diagnosed, I consulted with Duke, MUSC in Charleston, UVA, Univ of Pitt and Dr. Friedman in San Diego.  Let me note - I did NOT have any extreme vertigo or throwing up.  We watched mine for 6 months,  and I educated myself during that time.  At 6 months it did grow to 14m and I decided radiation.  There were advocates both ways because I was 50 I was too young for radiation, etc.   Ultimately because of my life style, ( my husband and I are big backpackers, hike mountains in Colorado, etc.) we decided to go with the least invasive treatment first.  Oddly enough my 2 best friends here in Columbia also have AN, so imagine my surprise when I was diagnosed!  Anyway, I chose Radiation at MUSC BUT because of some things completely out of my control, procedure was cancelled, they would not reschedule for months and I ultimately ended up with Dr. Jason Sheehan at UVA.  I had emailed him for months, sent him my scans, records, etc.  and I never met him until my day before treatment.   I prayed about it and just felt comfortable with him.  I had my Gamma knife procedure 15 months ago.  5 weeks after GK, was hiking in Utah, and doing fantastic.  AT about 5-6 months swelling started which is completely expected and I got severe dizziness.  We still went hiking tho in Colorado and more hikes in Utah.  At about 12 months dizziness subsided - still have small episodes.  I have more hearing loss which is expected also.  My tumor is still "swelling" but not really causing problems.  My doctor had said I have to at least give it 2 years to see if radiation works.  My motto is watch and live until then. 

I have 3 friends I met through Facebook support groups from Charlotte, two had surgery, one local in Charlotte and the other at Duke, and one radiation in Charlotte, they are doing well.  If you are not on Facebook, join it!!! 

Again, I had NO extreme vertigo or throwing up and that may be more of a concern for what doctors will decide for you treatment.  There are so many doctors who will review your records for free, it just depends how serious and how soon doctors want to treat you. 

Sincerely, Kimberly 
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
MRI May 2019, slight swelling of AN but showing necrosis - experiencing vertigo issues
Columbia, South Carolina

richcooks

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Re: Recently diagnosed
« Reply #2 on: May 13, 2020, 04:39:55 pm »
I had fractionated stereotactic Radiation in 2010.  My AN was discovered in 2003 as 1mm.  Tiny tiny tiny.  It grew 1mm a year and in 2010 I had to decide which treatment to do.  Oddly enough my brother discovered he had a AN at the same time as me.  I live on the Jersey shore.  Lots of Medical facilities to choose from.   I visited UPenn and others and did a lot of research.  The one thing that kept coming back to me was that you have a better chance to preserve hearing with Fractionated vs The Gamma Knife.  Reason being Gamma Knife is one big dose of radiation that results in collateral damage to health tissue.  Fractionated are smaller doses given over a period of time.  Any exposure to healthy tissue is at a lower dose and the healthy tissue has time to recover before the next treatment.  I had to go five consecutive days for my treatment that lasted a total of 45 minutes each which included the prepping etc..  Here I am 10 years later with no issues other than the tinitus and some (not a lot) loss of hearing in my right ear.  My brother lives in Rochester NY and he chose Gamma Knife.  Lost his hearing in his affected ear.  What I learned was that you need to search out the doctor who does the procedure you want.  The expert at UPenn only did Gamma Knife.  After meeting with him and based on all the research I did I decided that I wanted Fractionated.   One of my questions to all of these guys was, " Does my Tumor make a good target for you to engage?"  The other option was surgery.  I was told surgery always requires the removal of some healthy tissue which would result in a loss of hearing.  And, who wants someone to cut open your skull and poke around your brain.  Not me.