Author Topic: AN . . . maybe?  (Read 8452 times)

cassieb

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AN . . . maybe?
« on: March 12, 2011, 03:57:37 am »
last month i went to see an ENT r/t pulsitine tinitus in my left ear. he ordered the MRI, we kinda expected to find an anurysm. it took 2 weeks to get the MRI and another 2 weeks for him to fit me in to review the results. he read over it right in front of me (obviously he hadnt looked at it before hand) and opened the MRIs on the computer. being a nurse (new at nursing though i am) I know the generals of how to read the MRI and saw the 'blip' i now 'fondly' refer to as Almond. its a 1.4cm mass in the petrous apex region. the ENT refered me to a neurologist and refused to tell me anything eles stating 'its probably just a cyst and has nothing to do with your symptoms anyway'. the neurologist he refered me to cant fit me in till may, and wont have time to review the documents ahead of time anyway. I got ahold of the MRI and results myself to take a closer look, the MRI tech put poss cholesterol granuloma as his impressions. at this point thats all i have to go off of. any advice? should i start looking for other doctors or just wait it out? ive been looking at MRI results of Cholesterol Granulomas and compairing them to Acoustic Neuromas, they look very similar so i was hoping i could find some guidance here. if it is a Cholesterol Granuloma waiting it out for this doctor wont be a big deal, they grow slow and are generaly harmless (though in the same region as an AN so harmless is relative as we all know) but if it is an AN then its already of a good size to be concerned especialy seeing as having good hearing is nessasary in my profession. im worried becouse any damage to my hearing will ruin my oportunities for a carrer ive barely begun. not knowing what 'almond' is is the most frightening thing in my life right now. please help
1.4cm 'something' named almond(hopefully probably possably cholesterol granuloma) still getting tested to find out what it is,
Jefferson university hospital, Dr Artz.

leapyrtwins

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Re: AN . . . maybe?
« Reply #1 on: March 12, 2011, 07:30:41 am »
Cassie -

I'm not a nurse - or any kind of medical professional - but in my opinion you should wait it out even if it is nerve-wracking to do so.

If it is an AN - and at this point that's an "if" - they grow slowly and you have time to make a treatment decision. 

Also, it's my gut reaction that if your MRI results were something that just couldn't wait your ENT would have insisted that the neurotologist see you sooner.

That said, if you decide not to wait until May and want to see a doc sooner, perhaps someone here could suggest a neurotologist for you to see.  There are lots of great ones out there.  I have a great one myself in the Chicago area but I have no idea from looking at your profile where you are located. 

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

Cheryl R

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Re: AN . . . maybe?
« Reply #2 on: March 12, 2011, 09:26:43 am »
Cassie, I would think that  the MRI would say possible acoustic neuroma or schwannoma.      My very first MRI said possible acoustic neuroma versus neuronitis.      I saw an ENT who sent me to my neurologist with me not knowing exacting what it was.     My dr then walked in and started talking about my tumor with me not even knowing for sure it was so I was quite upset that hadn't been warned more ahead.      In time I have got along much better with my dr as in time I developed older adult onset of NF2.     I am now a retired RN and have kept my license.       I have had 4 surgeries and 3 tumors and retired only before the last surgery in 2008.    I worked in a sm hospital in med surg and skilled and was back to work 2 months past surgery.         There is life as a nurse after surgery if that is what one does for treatment.        Maybe not in some types of specialties but somewhere as a nurse.     The waiting to see a dr would be nerve wracking and up to you if want to try for another dr sooner.         I am in Iowa and go to Iowa City for the best neurotologist in our state.    People from out of state also come to him.                 Keep us posted hwo it goes as we will be thinking of you!                             Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Kaybo

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Re: AN . . . maybe?
« Reply #3 on: March 12, 2011, 10:56:33 am »
Cassie-
Welcome!  Let us know where you are & maybe someone can assist you more. Like Jan & Cheryl said, it would probably be noted if an AN was suspected...

;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

cassieb

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Re: AN . . . maybe?
« Reply #4 on: March 12, 2011, 09:32:47 pm »
im in Delaware, i gues id feel a whole lot better if the neurologist he refered me to had actualy seen anything. but i have the copy of my MRI results and the ENT notes in hand to bring up with me for my first meeting with him. the office staff said hes simply too busy and wont have an opening till may. its good to know that nurses can continue through this. i think im still in the worrying phase of everything, but i tend to get alot acomplished in this phase, any advice on anything i can do to help things along? once i have a neurologist look at things and tell me definitivly what it is ill feel alot better.
1.4cm 'something' named almond(hopefully probably possably cholesterol granuloma) still getting tested to find out what it is,
Jefferson university hospital, Dr Artz.

kzepol

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Re: AN . . . maybe?
« Reply #5 on: March 12, 2011, 11:23:12 pm »
Cassie, I lost hearing, right side, w/tinnitus, 5 yrs ago.MRI did not detect AN. More symptoms 6 mos ago and new MRI & CT scan shows 7mm x5mm AN "intracochlear." It's in the bone of my cochlea - very rare. Will have 2nd opinion at HEI. But,wanted to tell you I have had to persist with absolute non-stop daily calls and elevate my concerns which has resulted in geTting appts and finally seeing the dr bygoing to the office telling thwem I was willing to wait for him to have time, that day, to see me. I work f-t and have told my boss my health is my priority right now. Ihave been polite but let the dr's office know my name and my face and I am much less stressed than 3 weeks ago. Good luck and keep posting and reading all you can.

cassieb

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Re: AN . . . maybe?
« Reply #6 on: March 13, 2011, 08:37:34 pm »
i got ahold of UPMC and they said theyd fit me in any tuesday i like ASAP, im scheduled for the 5th, its quite a drive so i needed to free up some time. honestly if he doesnt have time to even see whats going on, im going to somewhere who does, and it sounds from this forum that UPMC knows what theyre doing in that region so whatever it is i know im in good hands.
1.4cm 'something' named almond(hopefully probably possably cholesterol granuloma) still getting tested to find out what it is,
Jefferson university hospital, Dr Artz.

HeadCase2

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Re: AN . . . maybe?
« Reply #7 on: March 14, 2011, 09:01:41 am »
Hi Cassie,
  If your MRI was performed at a hospital, then I would be surprised if there wasn't a radiologist report.  See if there was a radiologist report.  And if you don't want to wait, you could also get a copy of the MRI on a CD, and send it to HEI (House) in LA, they could provide an opinion, and I believe it is without cost. See http://www.houseearclinic.com/   Good luck.

Regards,
  Rob
« Last Edit: March 16, 2011, 11:48:10 am by HeadCase2 »
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

cassieb

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Re: AN . . . maybe?
« Reply #8 on: March 14, 2011, 10:11:54 pm »
yup, got copies of everything. it was done at a clinic/out patient location through, not a hospital. im keeping copies of it all for my own records too. when i go to a different hospital will they want to take a new MRI? or will they be ok with the one i have?
1.4cm 'something' named almond(hopefully probably possably cholesterol granuloma) still getting tested to find out what it is,
Jefferson university hospital, Dr Artz.

leapyrtwins

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Re: AN . . . maybe?
« Reply #9 on: March 22, 2011, 11:32:35 pm »
when i go to a different hospital will they want to take a new MRI? or will they be ok with the one i have?
Depends on the qualify of the films and the machine used. 

Most of the time the MRI you have is sufficient, but if something on the films is unclear you may be asked to get a second MRI.

It's possible, but doubtful.

If you had an MRI without gadolinium contrast you might be asked to get one with contrast.  But, again, that would most likely only be if the films are unclear.

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

cassieb

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Re: AN . . . maybe?
« Reply #10 on: March 24, 2011, 04:34:40 pm »
just got back from jefferson university hospital, i know i said id shop around but i like these doctors so much im just stickin with them. they were great. started with dr Ferrell who gave me the run down and and a full neuro assesment, took a look at the MRI and said it was more up his freind Dr Artz alley. Dr Artz office squeased me in on short notice despite the fact that they were REALY BUSY and i didnt even have to wait all that long. they checked my hearing still 100% (yha!) and peaked around at everything. he even used a tool so he could hear my pulsitine tinnitus. Dr Ferrel was able to point out where the growth (we still rnt sure what it is) is pressing against the carrotid causing me to hear the blood flow through it. this, and the fact that we rnt sure if theres bone involvment, are the only things to realy worry about at this point. theyve set me up with other tests and soon well know more and figure it all out. Dr Artz ordered a CT of the auditory canal to rule out AN, an angiogram to see how involved the carotid is, and reffered me to a neuropthomologist to check for increased intercranial preasure. like i said theyre checking everything. if theres no bone or carotid involvment we can watch n wait which will give me a chance to finish school and save up some PTO at work for the time off ill need. if not well handle it as it comes.
1.4cm 'something' named almond(hopefully probably possably cholesterol granuloma) still getting tested to find out what it is,
Jefferson university hospital, Dr Artz.

Kaybo

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Re: AN . . . maybe?
« Reply #11 on: March 24, 2011, 05:16:17 pm »
Glad you liked the doctors - that is half the battle!!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

cassieb

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Re: AN . . . maybe?
« Reply #12 on: March 24, 2011, 05:32:23 pm »
its one of the first times that i didnt feel rushed with a doctor, even my primary rushes me. they listened to every concerned rambling about obscure symptoms and every bizzare half researched thought of my mom. the staff were great 2, awsome convos while waiting for appt call backs from other departments and just generaly nice and freindly. everyone knew what they knew and knew alot, and what they didnt they were honest with me about that too. i have alot of respect for any doctor that says hmm not sure, were gonna check this this and this and im having dr so and so take a look to make sure.
1.4cm 'something' named almond(hopefully probably possably cholesterol granuloma) still getting tested to find out what it is,
Jefferson university hospital, Dr Artz.

cassieb

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Re: AN . . . maybe?
« Reply #13 on: July 04, 2013, 09:46:41 pm »
Just to update. Over the last 2 years I have had an increase in facial numbness and weakness, a change in pitch in the bruit I hear in the ear to a higher pitch, probably caused by an increase in pressure. And at my new employee physical (about 9 months ago) I was told I have some low tone hearing loss in the affected side. The Vertigo has been staring, but the meclizine helps. Im not due for my next MRI and follow up until November but Im toying with the idea of notifying my Dr about all this and getting it out of the way. truthfully Im just scared. If anyone reads this could you give me some feed back?
1.4cm 'something' named almond(hopefully probably possably cholesterol granuloma) still getting tested to find out what it is,
Jefferson university hospital, Dr Artz.

Jim Scott

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Re: AN . . . maybe?
« Reply #14 on: July 04, 2013, 11:14:17 pm »
Hi, Cassi ~

The unknown can be scary so I can understand why you're anxious.  I think pushing up the MRI scan is probably in your best interest, if the doctor agrees.

We're basically an online, peer-to-peer AN support group and cannot offer any substantive feedback that might help you determine what is causing your symptoms...only trained medical professionals - doctors - can do that, which is why an updated MRI may be helpful.  However, should the MRI indicate that you have an acoustic neuroma (or a similar type of tumor), we're here to offer information, practical advice and support. 

I truly hope that you can find permanent relief for your symptoms soon and if it turns out that you have an acoustic neuroma, I'm confident that the treatment won't be as daunting as you may imagine.  Meanwhile, consider contacting your doctor to request pushing up the date for the planned MRI scan.

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.