ANA Discussion Forum
General Category => Inquiries => Topic started by: jaylogs on September 22, 2009, 12:54:41 am
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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! :)
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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! :o
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
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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 ;D
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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
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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
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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 ;D
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.
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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. ;D 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.
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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
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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
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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
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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
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I double checked the MRI report, it says cm...so that's bad...doh!
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Jaylogs -
welcome to the club - we are all special here ;D
Are you absolutely certain your MRI says cms, not mms?? :o 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
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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 ;).
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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
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I did post the actual numbers, but here is the actual text "There is a markedly enhancing mass at the porous acousticus of the internal auditory canal on the left with mild intracanalicular extension measuring 8.1 cm in cephalocaudad direction, 7.8 cm in the transverse diameter and 8.2 cm in the AP diameter. Findings compatible with acoustic neuroma or meningioma." Then it says down in the IMPRESSIONS section: "Markedly enhancing medial intracnalicular mass on the left extending through the porous acousticus measuring 8.1 x 7.8 x 8.2 cm compatible with acoustic neuroma." Soooooooo I am thinking, unless they got the units of measurment off, it is indeed in the 8cm range. As I stated before, this doc is new so maybe he's not aware of the significance of an 8cm AN is...
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Must be a typo. ???
Intracanalicular, as in "Markedly enhancing medial intracanalicular mass on the left," means in the canal, not out in the cerebellopontine angle (CPA).
That limits it to about 1.5 cm in size. I suspect it is in fact measured in mm, and is less than 1 cm in size. I can assure you the radiologist would have had much more to say if there was a tumor the size of an orange in your head.
I think you have one about the same size as mine, in which case watch and wait, radiation, and surgery are all possible courses of action.
I assume you will call them and verify this. :)
Steve
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Hi Jaylogs,
Keep us posted on the actual size, sounds like a lot of confusion going on. Mine is considered small at this point in mm. Let's see what my next MRI in Oct says. Good luck!!
LisaP ;D
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Must be a typo. ???
I assume you will call them and verify this. :) Steve
Jaylogs, Hope you find the answer to this questionable information soon... I have to agree with Steve, sounds like a typo.
Others here on the forum have pointed out errors in MRI reports. We are all human!
Please keep us update.
Sincerely,
Sue
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Thank you all for your concerns on this, first thing this morning I got up and made a call to the radiologist that read this and am having him confirm this. As soon as I know, I'll let you all know. (Sooner rather than later, I hope!) :'(
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GIANORMOUS HUGS!!
WE are here for you. Let us know once the CM or MM is clarified. I will pray it is a "typo" and is MM- nevertheless we are still here to offer support either way.
(I actually walked into the place where my MRI was done and asked for a copy of the CD and radiologist report... it was provided in minutes- once I showed my ID. This is your right, in the USA, to have the copies in your possession... nevertheless the "CM or MM?" needs to be clarified.)
The waiting game is a killer- I empathize. Hang in there... another HUG.
DHM :)
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Glad you are getting clarifcation to this mystery. If it is indeed CM then you will be in the "large" category which means that your only option will be surgery-at 3.8 CM surgery was my only option. Steve made a good point that there would probably been mention of the tumor extending into the CPA angle- I know that mine was at 3.8 CM. Either way, my advice in just receivind an AN diagnosis is to do your research into your treatment options and to seek treatment from a Dr with tons of AN expirence. Good Luck and keep us posted on those measurements!
Erin
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Hi, jaylogs ~
I'm sorry you have to deal with the AN diagnosis and, in addition, this confusion regarding the actual size. I suspect the person who transcribed the doctor's MRI report either misunderstood millimeters as centimeters or simply committed a typographical error. I find it difficult to believe that the MRI actually showed an 8 centimeter tumor. ANs are rare and ANs that large are rarer, still - but not unknown. My AN was almost 5 cm and when the neurosurgeon saw it on the film, he immediately scheduled my surgery for 5 days later. I believe he would have had me in surgery that day, had it been possible, he was that concerned about the size and the fact that the tumor was pressing very hard on my brainstem. He later told me that he was very surprised I hadn't had even more severe symptoms or developed hydrocephalus. Fortunately, the partial resection surgery went well and I emerged with no complications. I trust you'll soon have an answer as to the actual size of your AN and can then begin to focus on treatment, rather than being in suspense about the size of the thing.
Jim
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Well, I FINALLY got word that this was indeed in mm's, NOT cm's! WOOOHOOOOOO...thank you all for the encouragement. Now I am back to the point of where I can actually have options again, which is always a good thing. Like I said before, my appt with the neurotologist is on the 1st so we'll see what happens then! Whew! ;D
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jaylog ~
Congratulations on finally getting the actual size of your AN clarified - and that its 8 mm not 8 cm. Options are good!
Jim
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Yeah!!!
It WAS a TYPO after-all!!!!!
Lots of options- be sure to explore them. Well you are officially one of us- WELCOME!!
HUG
DHM
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Welcome from another relative newbie to the site. Such a relief to read that it's in mm rather than cm. On the downside, though, now you can't say this about it:
... But oh well, I have never done things half assed in my life ;).
Slacker. :D
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When I first read your measurements, I thought WOWZER!! Then I thought...well, THAT MUST be a mistake, because you wouldn't even have gone home. You would have been hearing things like STAT, and put on a gurney real fast, and headed to the operating room!! Whew!! So happy you are so not doing that! Egad!
Sue in Vancouver USA
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Seems to me that you have reduced the size of your tumor by 90% just by talking about it!
Now on to the questions about treatment options and doctors. Back to business as usual. :)
Steve
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So Steve, does that mean if I keep talking about this, my AN will eventually just disappear altogether? Woohoo! :) And Sue, yes you are right about all that STAT and gurney things. I guess the only lingering bit of doubt came about from my relatively new doctor's experiences with this...wasn't sure if this kid knew what the difference was between a golf ball and a pea in these things. ::) On a side note, I told you all I had a doc appointment on the 1st, but now that I have calmed down about a lot of things I started really checking out this ANA website, and in it there's the physician's directory. I had read a post about a Dr. Brackman in Los Angeles who was supposed to be really good. So I saw TWO Brackman's in there, and I clicked on the one I thought was the the previously mentioned doctor. Well, it wasn't, but it just happened to be a doctor right here where I live, in Phoenix AZ. Further research found that he works at the Barrow Neurological Institute, which I am finding out is top rated for all things head related. Sooo I am going to make a call there first thing in the morning and see them as well. Different opinions are good, right? Ok, I've rambled on enough. Thanks again everyone for your wonderful responses, except for you Imnocleaver...but you may have hit the nail on the head with that Slacker comment, but promise me you won't spread it any further than here, ok? LOL ;D
Regards, Jay
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Jaylogs,
Thank you for the update! WHEW, it WAS a typo! ::)
Keep us posted on your AN journey.
Sincerely,
Sue
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I had read a post about a Dr. Brackman in Los Angeles who was supposed to be really good. So I saw TWO Brackman's in there, and I clicked on the one I thought was the the previously mentioned doctor. Well, it wasn't, but it just happened to be a doctor right here where I live, in Phoenix AZ. Further research found that he works at the Barrow Neurological Institute, which I am finding out is top rated for all things head related.
Jay,
There are two Brackmann's ?!? :o Nah the other one is spelled differently... "Brachman" ;)
The LA Dr. Brackmann is one of a kind. :) 8)
(Hey but you did send me to the physician's directory on the ANA site to look ;) :D )
Know that now that it is established that you have a small AN tumor... also know that you have many options for treatment. I implore you to explore those options. Typically these tumors do not grow fast ... but there have been some cases that are the exception to that rule. That it is why it is important to have subsequent MRI's.
We have a wonderful gentleman in our ANA support group in Oregon who is age 80. He has been in wait and watch for years nows. The guy still ballroom dances regularly. He has a great sense of humor and always keeps us light hearted at meetings. For privacy I will not mention his name- but the folks that came to the PDX meeting know who he is.
I am so glad that was typo and you are a millimeter-kind-of-guy... ;) ;D
DHM
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I am so glad that was typo and you are a millimeter-kind-of-guy... ;) ;D
DHM
Jay -
like numerous others, I'm very relieved that your AN is 8 mm not 8 cm - makes all the difference in the world.
Jan
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Thanks again everyone for your wonderful responses, except for you Imnocleaver...but you may have hit the nail on the head with that Slacker comment, but promise me you won't spread it any further than here, ok? LOL ;D
Regards, Jay
What? Me? Just spreadin' the newbie love, man! ;D
Okay, okay...let me rephrase: Your neuroma is a complete slacker. How 'bout that?
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Greetings all, can I tell you all just how much I hate waiting around? I got my first consult with a doc this Thursday (10/1) and then another two weeks from that date. I am going to send my MRI CD and reports to the HEI and have them take a gander at it all...but in the meantime, as I read up about this thing I keep wondering what I will go with...radiation or surgery? I am sure all of you guys who have been in the position can relate. My wife says I might be over-analyzing this whole thing, reading too much until I found out what my options are. She may be right, but at least I'll be one highly informed individual when I finally go to these appointments. Hope all of you out there are doing well, and for those who are waiting for whatever it is, be patient! I'll try to be as well! :) Take care! Jay
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Jay ......
Just catching up with this thread ...... whew! you've been through the "mill"-imeters on this! I, as well, looked at your first post and wondered how in the world they let you leave a medical facility and were posting. Just goes to show, even radiologists and/or transcriptionists can make mistakes.
Maybe this confusion is actually helpful, in that you feel a sense of relief that it is not a huge AN. Now you can take your time exploring your options and finding the best medical person you can to follow this relatively rare condition we all have in common.
Clarice
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Well, I saw my first doctor today His recommendation is to go with surgery, translab approach. He said that with my hearing as bad as it is, trying to save it wouldn't be a viable thing to do. The interesting part is he interned under HEI so he knows Dr. Brackmann very well. I already sent my stuff to them but he's gonna follow up with a phone call to Dr. Brackmann letting him know that my stuff is there. So now I wait for my next appointment in two weeks for my second doctor, over at Barrows Neurological Institute. I asked this 1st one how many cases he's had each year, and he's been through about 15 to 20. he's not a young guy so he's been around a while. Anyways...I kinda had higher hopes of saving the hearing and not going with a translab approach, even though it would be better for the facial nerves. I'll let you all know when I hear from HEI...take care and have a great weekend! Jay
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Hi Jay,
Glad to hear that the size has been cleared up. It sounds like it around the same size as mine 12 x 7 x 7 mm. It is considered small, (let's see what my next MRI states on Oct 21st). I do understand what your wife is saying about over reading. When I become overwhelmed I stop doing "readings" for a couple of days to get my head back on straight. :P. This whole event can be a great challenge to both the mind, body and spirit. Just hang in there.
LisaP