Another new awaiting MRI results....

[jaylogs]

Greetings everyone, I happened upon this website from another, where an individual did sort of diary of his AN experiences back in 1995, and he linked it to this website. I've read a lot of the topics and so I thought I'd share my experiences thus far, as it seems to help the thought processes of someone in the waiting stage.  It all started about 4 years ago I developed tinnitus in my left ear, seemingly after an extended periodontal cleaning session where I had to keep my mouth open for a longgg time. I went to an ENT doctor and he poked around a little bit and didn't find anything so he sent me on my way. I noticed even back then that while I could hear ok out of this ear, if I rubbed round the outside or clean it with a Qtip, it would be more muffled than the other ear.  Shoot forward to the beginning of this year I noticed the tinnitus getting louder, and the hearing getting worse.  Then about 2 months ago or so I had a couple of episodes where I woke up and was extremely dizzy all day long, the room would be spinning around real bad, almost made me nauseous. I finally went to another ENT, and they did audio tests and found I had lost a lot of my hi freq hearing, real bad. No water or wax present. I am almost 45 and I haven't really been exposed to extreme loud noises in my life, so the doctor was concerned that it was only in one ear. So combined with that, the sudden hearing loss and the dizzyness and my age, he had me get an MRI. After reading all the posts about people getting the run around concerning MRI's, I am extremely thankful that I got mine so soon. And yes, it was with contrast, which I am now finding out is a good thing.  So that MRI was this last Friday and it is now Monday night. I expect it'll be another day or two longer before I hear one way or another (no pun intended!).  If it isn't an AN, then I guess I am going with a hearing aid, as the doctor said my hearing is that bad.  But with all the symptoms I've been having, I hope something is found, even if it's bad.  I was kinda freaked out about all this, as I never even considered something such as a tumor that could cause this, but now I am doing a lot better about it, even joking about it to some extent.  For the longest time, I have always done the Arnold Schwarzennar impersonation where he goes "It's not a tumor" whenever somethinkg like a headache pops up in my family's discussions so it's kind of karma now that this is happening..lol.  So, I will report back here when I hear something and let you all know.  But it's good to know that this is here for people who have this, or think they have it.  There's been a lot of nice feedback from people, with a lot of support.  Thanks for all the good information and I'll talk to you guys in a few days! 

[suboo73]

Hi Jaylogs and welcome to the the Forum!

So glad you found this site and are doing your research to find the answers you need.
Hopefully, you do not have an AN and don't have to join this crazy club! 

If something does show up on the MRI, you have already discovered that this Forum is a WONDERFUL resource!
For me, after hearing about my sister's AN, i couldn't wait for the doctor to call - so i went to the local MRI center and retrieved my own report.
As surprising and shocking as it was to read, i also was relieved to have some answers so i could start to deal with it.

My thoughts and prayers are with you during this time.
Please continue to post and let us know how you are doing.

Sincerely,
Sue


 

[LisaP]

Hi Jaylogs,

I too am watching and waiting for now a year and a half, my next MRI is in October.  How come you have to wait so long to find out the results.  I go to Mass Eye and Ear and I find out my results within an hour after the MRI. 

Keep us posted and best wishes.

LisaP

[leapyrtwins]

Hi, Jaylogs and welcome to the Forum.  I'm glad you found us, whether your MRI shows an acoustic neuroma or not.

It's typical to be kinda freaked out, but rest assured there are lots of worse things than an AN. 

We're here to help you in any way we can, so please feel free to lean on us.

Best,

Jan

[ppearl214]

Hi Jaylogs and welcome. Sounds like you have had quite the time... and booking an MRI (done with contrast) is truly the way to see if you have an AN or not. Sending wishes that you don't (and that answers will come soon for you)... and if you do have an AN, as you can see, we are all here to help if we can.

Good luck and please keep us updated.

Phyl

[opp2]

Hi Jaylogs,

I too am watching and waiting for now a year and a half, my next MRI is in October.  How come you have to wait so long to find out the results.  I go to Mass Eye and Ear and I find out my results within an hour after the MRI. 

Keep us posted and best wishes.

LisaP

I would think that if he has to wait for the MRI results from the Doc that he's likely Canadian. Technicians never tell patients results here. You have to go to the doctor to get them. If something is minor they call you and tell you to make an appt. If it's serious the doctor will call you and ask you to come in right away. So it goes in the Canadian system. You should see how shocked they are when I tell them I actually have my MRI disc's. Not one, 2 discs. very amusing in a sad sort of way.

[4cm in Pacific Northwest]

Welcome Jaylogs,

Sorry for the reasons you had to find us but nevertheless glad that you did.

Don't jump to any conclusion until the radiologist report and MRI has been interpreted by the doctor... I had almost convinced myself I had a "new" AN tumor in my good ear (NF2 thoughts plagued me) ... MRI came ...turned out to be peri- nasal sinus issues and NOT a tumor in the remaining good ear. (That waiting stage can be terrifying  )

Once you get the results and have a talk with your physician let us know either way- we are a support bunch (actually I find the people on this forum just terrific- it is a well moderated discussion forum filled with people of good integrity  )

Do not start reading everything on the discussion board- as a newbie it will just freak you out.  Know there are many people who have been treated, came here briefly, got the support and understanding they needed from family & friends etc. and moved on ... never to be heard from again... as they moved forward with their lives. Others who do not always have the support or understanding of friends and family find much support here and many of us call this our "AN family" ... Gee we even celebrate birthdays and surgery anniversaries together.   People who are not single sided deaf may not offer as much support as those of us who are also in that boat- here on the forum. We have walked a mile in each other's shoes -so often we can relate more than perhaps those who have not - and are family & friends off line.

Once you know the results DO let us know. In the meantime we are here for you to offer support.

DHM



P.S. It does now matter what side of the border postie's come from- as we are a global group with people from Ireland, Great Britain, Singapore, Austrialia ... the list goes on. ALL are welcome here.

[Jim Scott]

Hello - and welcome, Jaylogs ~

I'm pleased that you discovered the ANA website and have chosen to post on the forum but I'm sorry you have to deal with the anxiety of waiting for the MRI report .  Of course I hope you don't have an acoustic neuroma.  Yes, they are almost never malignant but they're located in a devilish place and can cause a lot of problems if not addressed.  However, acoustic neuromas are quite treatable with surgery or irradiation or, as in my case, both.  As you noted, the folks on these forums know what they're talking about and have complete empathy for another AN patient.  If you end up receiving an acoustic neuroma diagnosis, we're here to support you as you move forward with treatment.   

Jim

[jaylogs]

Well folks, looks like I get to enjoy your company for a while, I got the results back and it is indeed an AN.  I'm thinking it's kind of big, 8.1 x 7.8 x 8.2...The doctor I saw was funny, he's basically right out of med school, been at the practice for about two months.  He never expected to get a diagnosis like this so early in his career (I'm his first, now I feel special! LOL).  Soooo now I am on the a neuro-otologist and see what HE has to say. I know the three things he'll present, observation, radiation, surgery...but I am wondering the extent of removal with something this size. Is this big? Thanks again for everyone's welcomes and I guess welcome to the club, eh? Until later..
Jay

[epodjn]

Is that mm or cm?? If it's mm it's on the smallish side but if it's cm then it is very large. Anything over 3 cm is considered pretty big. Glad you found us. This is a great group and no matter whether you chose surgery, some form of radiation, or watch and wait, you will have a ton of support.
Julie

[Patti UT]

Jaylogs,
   It must be mm,  if it was 8cm they would check you into the hospital for surgery immediately, that would be huge and definitely pressing on the brainstem

[jaylogs]

I double checked the MRI report, it says cm...so that's bad...doh!

[leapyrtwins]

Jaylogs -

welcome to the club - we are all special here 

Are you absolutely certain your MRI says cms, not mms??    If it's cms, you don't have the options of observation or radiation - unless the radiation is in conjunction with surgery (as in debulking). 

We have another forumite, Jon (satman), who had a 8 cm AN.  He hasn't posted in a while, but you you might want to PM him - or read some of his posts (just search on satman).  I'd imagine his experience will be very helpful to you.

I'm not sure where you are from, but I want to stress that you need to see a neurotologist with LOTS of experience in surgically removing ANs.  You should also contact the ANA about their informational brochures; they are full of very good information.

Jan

[jaylogs]

Yes, it definitely says CM's...and I am looking at the films they gave me and it's a pretty sizeable white  spot on it. The pic is shrunk down about less than half size and the spot is about as big as my pinky is around, so it could very well be that large.  I was almost ok before when i was thinking it was 8mm, but now that I know it's 8cm's, I am not ok.  But oh well, I have never done things half assed in my life  .

[sgerrard]

8 cm is slightly more than 3 inches. Do you have a really big pinky? The measurements you gave make it about the size of an apple or an orange. Does it look that big?

I have to agree with those suggesting it is probably not. You would most certainly be having surgery, and soon, and the doctor would have been making some serious phone calls, not chuckling about seeing an AN so early in his career.

Maybe you should post the actual text you are reading. There must be something else going on, it sounds more like a 1 to 2 cm size.

Steve