Author Topic: Are my issues from an AN tumor or something else???  (Read 17836 times)

labsRbest

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Are my issues from an AN tumor or something else???
« on: August 27, 2012, 11:33:13 am »
Hello, I am waiting for my MRI results (with contrast) done about 4 days ago...The waiting is driving me crazy, I have chewed down all my finger nails already.   Here are my symptoms and I would like to know if it sounds familiar to others, If so was it an AN or did you ever find out what it was?     Started out with feeling like a bad ear infection but with no pain. Went to the ENT was told to use Vyramist (sp) steroid spray for a few months because my eardrums were retracted but no fluid and no infection. ENT thought maybe it was just ETD and were clogged from allergies. I do not have allergies typically but thought ok...he's the doctor. Nasal spray didn't help at all...went back to ENT said he can't understand why the eardrums were so badly retracted but inserted tubes in both ears. He thought it would give relief right away but it did not, I felt more like being in a wind tunnel or trying to hear from the other side of a door. Hearing test showed left ear not normal and right slightly off, both feel "clogged" left does feel worse. Started feeling dizzy which hasn't gone away, it's not bad  just a motion sickness kinda thing or like I am slightly drunk all the time. Gotta take my time getting up from sitting or laying down. Have tiny twingy pains on the left side of my head like a gently electric shock now and then. Feel like I walk around with a concrete block on top of my head all the time to. Have a little popping and clicking in the right ear but it never fully pops. Left ear doesn't move, nothing happens there.  Was sent to a different specialist because the first one wasn't sure what to do next. New doc heard my symptoms and checked my ears, sent me for an MRI with contrast...Now just waiting ?!?!?!?!?!   :(
« Last Edit: August 27, 2012, 11:49:46 am by labsRbest »

james e

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Re: Are my issues from an AN tumor or something else???
« Reply #1 on: August 27, 2012, 02:28:30 pm »
Sounds similar to an AN. Nobody diagnosed me correctly until my MRI with contract was done. I had an MRI with no contrast, and it did not show up. Hope your troubles are not an AN, but if it is, keep coming back to this site. Lots of great info and help here.

James

Jim Scott

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Re: Are my issues from an AN tumor or something else???
« Reply #2 on: August 27, 2012, 02:33:53 pm »
Hi ~

Welcome to the ANA discussion forums.  I'm sorry to learn of your symptoms but, not being doctors, we cannot tell you with any authority what the cause of your symptoms may be.  Yes, many of them are congruent with an acoustic neuroma but they could also be caused by something else.  Obviously, if your doctor is stumped, we certainly cannot offer a credible answer.  My best advice is to try and calm down a bit and wait for the MRI results, which should come by the end of this week (4 days).  If an acoustic neuroma is present, the MRI with contrast should make it plain - and it won't be the end of the world.  If there is no AN, your quest to find the cause of your symptoms will take a little longer to accomplish.  Either way, we'll be here to support you.  Meanwhile, let's hope that the results of the MRI scan are beginning of the end of the ear problems that have been haunting you for some time.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

mindyandy

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Re: Are my issues from an AN tumor or something else???
« Reply #3 on: August 28, 2012, 05:31:44 am »
Ah the ol'waiting game. Yes I remember. I'm so impatient that I went and got a copy of my report before the doctors got back to me. Not a good idea because I don't understand radiology lingo. LOL I can say I know more now. I hope they find nothing. Like Jim said it could be but it could be other things too. Keep us posted.

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

labsRbest

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Re: Are my issues from an AN tumor or something else???
« Reply #4 on: August 28, 2012, 06:20:28 am »
Thanks for the replies, I appreciate not feeling alone!    I got a call on my way home yesterday and the nurse just said "I have your results here but the doctor was in surgery all day so once he reviews them we will call you tomorrow"   Wouldn't she have just told me if it was normal though?

Today I have a horrible headache on the left side where the worst ear is  :( :'(
Really feels like my left temple is just going to burst out of my skull, The pressure in my head is worst today to. I just hope they can figure out what is going on and it's not life threatening and fixable!!!

I will add that when the second specialist saw me he said the MRI would be ordered because he has a feeling there is a problem between the nerve and my brain possibly?  He didn't say AN or Tumor or anything but just said that's where he was thinking the issue might be. What else would he look for I wonder? I sometimes hear a thumping noise in my head- Anyone have that? It's like a drum noise like I am in the jungle but not a very pleasant thing to hear.
« Last Edit: August 28, 2012, 06:21:59 am by labsRbest »

pjb

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Re: Are my issues from an AN tumor or something else???
« Reply #5 on: August 28, 2012, 07:54:07 am »
Hoping it is not an AN my radiology place the first day right after the test contacted my doctor who in turn called me but definitely with contrast will show if anything is there .... seeing yours is 4 days was it the weekend just wishing that maybe it is not otherwise they would have called you sooner? ... My friend has a lot of the symptoms of an AN but hers is Meniere's Disease not fun but at least it is not a tumor that may have to be treated..

Praying for good news and if it is just do your research and find a good team of doctors no matter what choice of treatment you decide to do.

Best Wishes,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

labsRbest

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Re: Are my issues from an AN tumor or something else???
« Reply #6 on: August 28, 2012, 08:39:26 am »
PJB, Hello!

It was over a weekend yes. MRI was done late Thurs afternoon last week, Today is Tues and I am suppose to get a call...still waiting and it's 10:30am where I am located. I wanna call again and bug them but I am trying to be patient at least until 2:00 if no call by then I will make a return call and be much more forceful this time. Since they aren't calling me to eagerly I hope to that means it's nothing bad but still would be nice to know. I understand these specialists are busy, do surgeries, and see multiple people per day with multiple test results to go over but there has to be a better way to put people like us at ease with faster results.   I took a high dose Motrin and ate breakfast and now my headache from this morning is much better...Not gone but better which makes me think if it was an AN a Motrin and some food wouldn't have taken the pain away in a couple hours, Ya think?  Was anyone else treating headache pain with meds that seemed to help prior to finding out they actually still had an AN or some other tumor? I have always had history of migraines, tension headaches, TMJ but the muffled hearing, dizzy spells, thumping noise in my head, and twinges of "electrical" type pain are all new to me the past year, More so the past 3-4 months.
« Last Edit: August 28, 2012, 08:42:50 am by labsRbest »

labsRbest

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Re: Are my issues from an AN tumor or something else???
« Reply #7 on: August 28, 2012, 08:44:43 am »
So really that's like 2 full business days that I have waited...Test done late Thurs so results probably weren't given to doctor office (he is in another hospital then where I had MRI) until mid day Friday...Monday he was in surgeries and today is Tuesday...But still if it was a tumor or something I would have had a call by someone wouldn't I have????

PaulW

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Re: Are my issues from an AN tumor or something else???
« Reply #8 on: August 28, 2012, 12:25:20 pm »
It sounds like your problem is in both ears.
Most AN's only affect one ear, and those people unlucky enough to have the rare NF2 mutation, which can affect both ears normally have problems with one ear first.
Obviously something is going on and needs to be checked out, but because both ears are affected the chances of having an AN must be very small.
There are lots of things that cause similar symptoms to an AN, many are temporary.
So really good chance things will work out for you.

Good luck and hope it goes well. If the MRI was a problem the nurse would probably have told the DOC who would have rung you quite quickly.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

labsRbest

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Re: Are my issues from an AN tumor or something else???
« Reply #9 on: August 28, 2012, 01:21:08 pm »
Hi Paul, Hope you are right but the issue is more so with my left ear, If that makes a difference.
The pain and pressure is always on the left with the worst ear. Right ear is pretty open for the most part but still sounds muffled inside...That might just be a muffling all the together or an issue with both ears...IDK  :-\

I also think if there was something like an AN or Tumor they certainly would have called me Friday or at least yesterday (Monday) since the MRI was done Thurs late afternoon... so no news is good news I guess. I just hope there is something easy and fixable to explain all these symptoms. Either way I promise to let you all know just to help future people who panic and think they will be joining the ANA forum. Not that you aren't all GREAT, I would rather be in the club of NOT having one  ;) :)

skipg

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Re: Are my issues from an AN tumor or something else???
« Reply #10 on: August 28, 2012, 05:37:32 pm »
I truly hope all is ok, we would not wish this on anyone. Every time I go to the doctor and have any tests done (physicals, lab work, MRI, X-Rays, etc) I always ask for a copy. I can always reference back to these and monitor my health and have them ready for a 2nd opinion. I have been given a copy of the MRI immediately after the test was done. In my case with the AN, I was suffering a slight hearing loss, fullness in the ear, and tinnitus. The ENT I went to ordered an MRI immediately. I already had my suspicions based on internet search of symptoms (which are not always accurate) and the MRI confirmed them when I opened the disc. Saying a prayer right now that they find a simple reason for your symptoms  an easy solution.  Keep us informed.
Skip
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

labsRbest

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Re: Are my issues from an AN tumor or something else???
« Reply #11 on: August 29, 2012, 06:47:59 am »
Hello again everyone who replied and Thank you but NO TUMOR.

I did get a copy of the results but still no call back from the doctor which I think is unacceptable!!!
The results were not exactly normal though so I am still left confused but happy there is no sign of a tumor or mass.

Anyone know what any of this means:  Left Posterior temporoparietal junction shows focus flair signal hyperintensity ?

Also says recommend clinical correlation. The findings are nonspecific but may be due to chronic ischemic change of microvascular disease, demyelination or vasculitis or chronic ischemic change from migraine disorder.    I am a chronic migraine sufferer so that makes sense but the other stuff scares me and none of it explains to me the dizzy spells and diminished hearing especially in the left ear.

leapyrtwins

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Re: Are my issues from an AN tumor or something else???
« Reply #12 on: August 30, 2012, 01:26:32 pm »
I have no idea what your diagnosis means, but just wanted to say I'm glad you don't have a tumor  ;D

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: Are my issues from an AN tumor or something else???
« Reply #13 on: August 30, 2012, 01:40:44 pm »
Labs ~

I cannot interpret the medical jargon on your MRI report but your doctor should provide you with a credible translation.  That he hasn't contacted you is probably an indication that the report found nothing that requires immediate attention, which is usually a good thing.  I suspect that your chronic migraine headaches are, as you noted, connected to the findings from the MRI.  That the MRI scan did not indicate a tumor is certainly the best thing of all to come out of the situation.  Here's hoping that your current symptoms can be effectively treated and the cause identified, soon.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

PamJ

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Re: Are my issues from an AN tumor or something else???
« Reply #14 on: August 30, 2012, 02:09:28 pm »
Hi I was going to say no medication helped with the pain my AN caused me, so pleased you have no tumour.
March 2011 - Acoustic Neuroma translab surgery
July    2011 - Tarsorrhaphy surgery
June   2012 - BAHA abutment surgery
July    2012 - Tarsorrhapy reversed
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