ANA Discussion Forum
General Category => Inquiries => Topic started by: PS on December 14, 2007, 08:03:28 am
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Hello all, I'm new to this forum and possibly AN. I'm scheduled for a MRI next Tuesday, with and w/o contrast, to see if I do have an AN. I have had bilateral sensioneural hearing loss as long as I can remember, but it is asymmetrical. That, along with an abnormal ABR test, is why they are looking for an AN. Since it sounds as though most everyone with an AN seems to have unilateral hearing loss, I was just wondering if there was anyone here that sort of fit my profile? I do have tinnitus, and sometimes full feeling on affected side.
Thanks-
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Except for the bilateral hearing loss, most of us fit that profile to a certain extent. AN's are very rare, and you probably have something else, but at least you are lucky enough to have a Dr. that looks for AN. The MRI will be the answer if it is AN. Hoping for a negative MRI.
Sam
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I guess what I was really wondering was if anyone else here had bilateral hearing loss prior to diagnosis with AN...anyone?
I won't know for sure on my results until after the holidays, and have just been trying to read up, JIC. I've learned a lot just being faced with the possibillity!
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Besides the significant loss on my AN side, I had a little loss on the right side before diagnosis. I guess it depends on how asymmetrical you mean. I would call mine something like 50% loss on the AN side, 5-10% on the other.
The nice audiologist doing the hearing test said the smaller loss on the right was "typical of someone 10 years older than I am." :P Getting older ahead of schedule is not something I need.
So, as with most questions on AN it seems, it is possible, but not definite. :D
Here's hoping the MRI has only good things to say.
Steve
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PS,
Good luck on your MRI tomorow, hopefully they won't find anything [that isn't supposed to be there].
Regards,
Rob
(http://i93.photobucket.com/albums/l46/HeadCase2/small-brain.jpg)
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Thank you for the responses, and well wishes. My MRI was rescheduled to Wed, so one more day for that. (just what I needed...after I'd steeled myself up for it!)
I won't see my ENT until after Christmas, and probably New Year's due to my traveling, so Merry Christmas to all!
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Hello,
I too am new here and will have a MRI w/contrast tomorrow. I have lost low tone hearing in both sides, though more significant in left side. I have had what I call "Pond Noise", sounds like nights sounds from a jungle for numerous months that the ENT said was caused by the loss of low tone hearing. Balance issues is what led me to the ENT after more than 2 months. I have and am being treated for irregular (Rapid and slow) heart rate and fluxuating blood pressures (High & Low) since August. Last week Cardiologist's Nurse Practitioner finally suggested that I be seen by an ENT in relationship to the dizziness and now I am to have the MRI tomorrow, and am scheduled for an ABR & ECOG on 1/15/2007 and will be seen by a Neurotologist immediately following the tests. I hope that it is Meneir's but the meds the ENT started me on in the event that it will be Meneire's has had no effect. From my own research, I have discovered that large tumors can have an effect on heart rate & blood pressure. I have also had 5 instances of double vision that happened the first time in February. Anyone out there that can relate please post ASAP.
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Also, I do have loss in the high pitch ranges but the low tones are all but gone.
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Hi Carroll and welcome.
Yes, i can relate - I've been treated for high blood pressure and an irregular (very fast) heart rate for years. In my case it was due the the AN pressing on my brain stem, which controls those things. Once I recovered from the surgery, my blood pressure went down and my heart, while still fast, is not racing like it used to.
Blood pressure and heart rate problems can be from a lot of sources though, so I'm certainly not suggesting that you have what I had. In fact, I'll keep my fingers crossed that you don't!
Good luck with your MRI - I hope everything comes back squeaky clean for you. If not, we're here and we'd all like to hear the results.
Lori
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I can certainly relate to "Pond Noise", though I call it crickets myself. My own hearing loss is middle and high frequencies, but I think a variety of patterns are possible.
I'm not sure what meds the ENT would have put you on for Meniere's, but it wouldn't surprise me if they took a while to have an effect, so it may be too early to say on that. Getting the tests done is the main thing. There is not much point speculating on what it might be or could be, the thing is to get some testing and scanning and find out what it is.
I guess your MRI was today, I hope the result comes back with nothing out of place, let us know when you find out.
Steve
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Hi all,
Thanks for your responses. I had my MRI and brought my films home. Scans are showing 2 tumors (1 is on my brain stem itself). I haven't told my family about second yet (just a couple of prayer buddies). I can pick up the written report tomorrow and that will give me the dimensions. I will see the Neurotologist on January 15. This all seems like a dream that I can't wake up from.
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Hi Carroll,
Sorry to hear about your MRI results. We all know how alarming that can be.
If you want to measure the tumor size on your MRI, most MRI viewer programs have a measurement tool. It allows you to click on one edge of the tumor and then click on the opposite side, and it will tell you the length you've marked. If the meaurement tool isn't there, there should be a centimeter "ruler" on the MRI image to provide scale.
This ANA site, and the people on this forum, recommends that you seek out doctors with a lot of experience treating these tumors. That would mean seeking out experts in tertiary teaching hospital settings. Local doctors rarely have seen enough of these types of tumors to provide them with the experience and knowledge needed.
I hope you're able to relax enough to enjoy the holidays.
Regards,
Rob
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Hi Carroll,
Sorry to hear about the MRI result. Does the report say 2 tumors, or is that your reading of it? They can be confusing, with so many different angles and shots. I would like to hear what you find out from the report itself, and how the radiologist phrased it. They have their own "special" language for describing these things.
Although these tumors can sound scary, I am impressed by the number of people on this forum who have had large tumors on the brainstem that are successfully removed with exellent recovery. There are neurosurgeon/neurotolgist teams that are very experienced in these situations, and it may be worth to seek them out. Where are you located?
Post back as you learn more, we are here to help you find your way, and to give you support any time you need it.
Steve
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Hi Carroll,
I'm so sorry to hear about your 2 tumors. WHAT A SHOCK! I too was recently diagnosed (Oct) with a 2.8cm on my right side and yes, have experienced bilateral hearing loss for the last 18 years. I am planning my translab surgery with Dr Brackmann at House Clinic in LA on 1/30/08 and am not looking forward to it. I'm grateful that I could wait until after the holidays to do it but at the same time have anxiety about waiting. I scoured the internet to learn about what the heck an AN is and who I should trust to do my surgery and am happy to travel across the US for my treatment. Feel free to drop me a personal note if you'd like to talk.
Be well,
~Firewalker
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Hello CarrollMoore,
I am also sad that you have the 2 tumors my prayers are with you. We are here for you.
Hello PS,
That was one of the signs I had but I didn't know it at the time. I was more upset at the fullness in my ear than anything else.
What ever it was I wanted it out.
My prayers are with you that it is not a tumor or anything else seriouse.
eve
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Hi everyone!,new here (Ive' been lurking though for a short while).Im' a 53yr old male,not yet diagnosed.My symptoms for the last yr.have been constant ear ringing,dizziness or off balance feeling,my right ear seems plugged with occasional dull pain behind ear lobe,and my hearing especially high end,has been getting worse.
I also feel exhausted all the time.I went to an ENT in may,he did hearing test found slight diminished hearing,prescribed prednisone,which seemed to help,but my hearing and balance seem worse.Im' on my second round of prednisone right now.I will be seeing my GP on Jan.08,for a checkup,I will insist on a MRI with contrast,if for no other reason than my own piece of mind.
There seems to be alot of good info here,and I hope i won't be joining your club(no offense intended).But I do have a gut feeling about this,as a couple yrs.ago I had schwannomma deep in the nerve in my leg,that I had to switch doctors to have diagnosed correctly.(gut feeling again).Don't want to get to long winded here,but my main questions are,did any of you before diagnosis just feel lousy all the time? besides dizziness and hearing loss? and after treatment did your dizziness subside?
Thanks in advance for any answers,or info you can provide.Bruce
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Yep ... I felt lousy and exhausted all the time ... I even quit smoking because of it, which did help... for a while at least...
Keep in mind.. most people with symtoms like these actually dont have AN's .. but a simple MRI will confirm it.. good luck!!
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hello Bruce,
Your symptoms do sound like ours but think positive and we hope that it is not AN. but good idea for MRI to relieve your mind.If so you have found a wonderful place to be comfort
I've been fighting a infection that is almost the same early symptoms as Paget disease some sort of breast cancer . I've been having to take my second dosage of antibiotics. but with mammogram they say it isn't it is just an infection, so a big relief.
Hope you had a nice Christmas and Happy New year
eve
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Thanks for the replies,Im' keeping my fingers crossed,but will report on my outcome regardless.Happy new Year to you alll !!! Bruce
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hi Carroll,
I was diagnosed 11 days before Christmas last year and my holiday season was hard too. I went from shock to denial to fear that I was having my last Christmas . As you can see - I am still here. My surgery was successful (they got the AN out ! ) and although there have been some changes in my life, I continue to be with my family, do my job and enjoy life.
Next year you can sit and reflect (as I am doing this year) that you made it through treatment and to live is good.
This is the toughest time....waiting to get more information and then deciding and waiting for treatment. May God grant you all the strength and wisdom you need at this time.
Margaret
P.S. Let us (the forum) know if you need names of good surgeons............. there are plenty of great ones - with lots of experience - to get an opinion from. Make sure you get more than one opinion..... many of us are glad we did.
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I saw my family doc yesterday,explained my symptoms,he did a balance test,some other stuff,and ordered an MRI of head and neck to rule out a AN.I go in Thur.the 10th for that.
It seems strange that my family doc orders an MRI immediately,but the ENT doc only did a hearing test and prescribed prednisone,which Ive' had refilled twice,and he never suggest I come back in to see him,or suggest more tests or anything.(I saw him in May with same symptoms).What surprised me even more is that my family doc seemed to have some knowledge on ANs.I did not bring up anything except my symptoms.
Hopefully it will just be some ear problem,but at least I will have an answer one way or another,Iwill post my results.Bruce
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Bruce ,
I have heard several people say their ENT put them through he** for years before some other doctor found the Acoustic Neuroma. I hope you don't have to join 'our club' but there are many worse things out there than we have..... I am just praying that you can find out what the trouble is...and that it will be easy to fix with no loss of health ( in any way) .
Margaret
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I too am newly diagnosed. Found by the ENT, seeing a surgeon at Hopkins on Thurs. I just read the "official" neuroradiologists report,and he mentions 2 sets of measurement. Diagnosing an AN on the right side with 2 "components", part inside IAC and part outside. Has anyone heard of this? Everytime I think I am ok with this, I find out something more confusing.
Thanks
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I am no doctor but here is what I learned about my own tumor...
One measurement concerns the narrow length of the Inner Auditory Canal that the tumor occupies and second dimension refers to either diameter or width of the tumor that bulges out into the space beyond the canal. The tumor outline might look like a mushroom or ice cream cone on its side. I referred to my tumor as a rude intruder.
Your doctor will be impressed that you took such a detailed interest in your report. Keep asking him questions. This is good.
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elderbirds,
yep .. thats normal . (for a AN) .. most start in the Inner Auditory Canal and mushroom out.
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Im' in !!! Doc just called with MRI results,I have a AN which he says is in the bone? But shouldn't be causing headaches and feeling of malaise I have been expierencing.Well I still feel crappy,even though I can't be.Im' glad I found this forum,as it made me proactive in getting an MRI,hopefully I can get this taken care of with no complications and get on with my life.I am open for any suggestions or advice,especially regarding this fatigue Im'expierencing(is this caused by AN?)
Thanks,Bruce
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Sorry your joining the club .. but at least your here! Yea, fatigue can be from the AN ... (but it does not do this for everyone) my personal thoery is because it can throws your balance off .. your body does twice the work just to keep upright.. and thus it gets tried twice as fast... :( Did he say how big it is? .. because that will kinda direct how to treat it ...
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He didn't tell me the size,but said it wasn't pressing on my brain,so I would believe its a small one.I will be seeing my ENT for follow up.Are the MRI's conclusive for these tumors? or is there a possibility of some other type of tumor? My only reason for asking,is I just feel crappy,and thought these things don't usually produce these symptoms unless really large,where they put pressure on the brain.
Thanks,bruce
Joef,I see you kayak fish.I occaisonally kayak fish with a friend on some small streams here in Wi.,beautiful scenery,and very peaceful,that is until a big smally or cat starts pulling your kayak around! Can't wait for summer.
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ya have to talk to you doc about if it could be other tumors..
we have some Great rivers for Smallies here too (not as good as WI but good).. we have some great Saltwater action ... I just started last fall with Saltwater fishing .. I have a lot of learn but great fun!
(http://i4.photobucket.com/albums/y133/Joetella/IMG_3322.jpg)
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Joef,WOW! a fish like that could sure pull the kayak around!!! Its coloration and shape reminds me of a steelhead,but something looks different.Please don't tell me you take that kayak in the ocean! Great pic! Now I really can't wait til summer!
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Hi Bruce and welcome to the club!
Rats, I was hoping your MRI was clear......
It sounds like your AN might still be in the bony canal which could mean that it is on the small side. I will be anxious to hear
just what size it is too.
I agree with Joef. Your brain is probably fatigued. Some small ANs can cause big problems.
Good luck, Kathy
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He didn't tell me the size,but said it wasn't pressing on my brain,so I would believe its a small one.I will be seeing my ENT for follow up.Are the MRI's conclusive for these tumors? or is there a possibility of some other type of tumor? My only reason for asking,is I just feel crappy,and thought these things don't usually produce these symptoms unless really large,where they put pressure on the brain.
IF the MRI is done with contrast, they are generally very conclusive for AN. The location is part of it, the enhancing with the contrast the other part. The only likely alternative is a facial nerve neuroma, which is the same type of growth, only on the nerve next door.
It has been said before, size doesn't matter much for getting symptoms - some big tumors don't produce many symptoms at all, and some tiny ones (3mm) are quite wicked. Any disturbance of the hearing or balance nerves can be very taxing on the brain - wait, what was I talking about? - oh yeah, and can make it hard to concentrate.
So welcome aboard, Bruce. Now you can start sorting out the options for waiting or getting treatment, and then get back to the important stuff, like going fishing.
Steve
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Thanks everyone for the replies,It was this site that got me to ask questions to get MRI,otherwise I'd have no idea whats going on.I actually have a sense of relief knowing what Im'dealing with.I haven't spoke with a specialist yet as my ent doesn't deal with these things.Im'waiting for neuro/oto doc to call,which is 100mi. from here.For some reason I keep thinking this is no big deal,but also realize it could be,weird having something in my head besides a vacuum!
Bruce
If its in the bony canal which I suspect it is,and is considered on the small size,Would this make it much easier to treat?
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Found out its very small 12 x6mm,although I will be having another mri done.My hearing has really gone downhill since May when I had my first hearing test.I wish my ENT had an MRI done then maybe could have saved some hearing,who knows? My brain doc suggests CK,so I will be talking to them today.
Has anyone who had CK expierienced improvement in balance or fatigue level? I could watch and wait but symptoms have really progressed in last 6mos.Guess I'll find out more when I see doc. Bruce
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12 x 6 is pretty small, but not too small to be a problem. If the hearing is going down, my inclination would be to take some action. I had CK, so I tend to think that is good choice as well. I think my sense of fatigue went away after CK, but I didn't really have any balance issues, except a little wobble when making quick turns, which I still have. I have found that I am now annoyingly sensitive to colds; I had a whopper at Christmas, and another last weekend, and the pressure sensation seemed to really build up.
I'm glad to hear you have a doc who considers CK, it sounds like your ENT and the neuro are sorting out what you have, and what to do about it. I hope that continues, and that your symptoms don't get too bad. Stay in touch.
Steve
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Decided on CK to fry this thing,I go tommorrow for simulation,and new mri.Then when the plan is in place,3-5 treatments in one week,and then just follow up.Seems simple enough.Im'finally realizing that being half deaf and dizzy,is an inconvenience,that actually makes me avoid certain situations,and I do need to explain that im'not ignoring someone , I just didn't hear them.Ive'also been referred to a genetic doc,as they believe this could be a form of nf2,because of previous tumor.One thing at a time though.I just hope my head doesn't start smoking when I get my treatment!Maybe that thing will break off and roll around inside my head .like an empty can of Guiness!
Bruce
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Hey Bruce,
Yup, CK is pretty simple. I didn't have any problems with the treatment itself. It seemed like the symptoms surged a little at about the 3 to 4 month point, but I already feel like I am past that too, and definitely feel better than before treatment. Next month will be my first follow up MRI.
I sure hope the NF2 question comes back negative, but I guess it is a good thing to have it checked out, no sense in having a maybe floating around.
I hope it all goes well.
Steve
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One more CK treatment to go tommorrow,then hopefully Im' done.Did anyone take decadron? My head feels strange (emotions,spacey etc.) Was wondering if this is from meds,CK,the AN or maybe all of them.I haven't felt good since Ive'had this thing and am a bit concerned about continuing to feel strange and fatigued.Dr.doesn't really seem to have any answers as yet.I need to get working this spring,but Im' just so damned tired and weird feeling.Seems like others who have CK just go right on with everything normally.Any expierences would be welcomed.Thanks,Bruce
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Hi Bruce,
Hey, you are a postie now! (I consider the third zap just one more for good measure).
I had a one-a-day Decadron during treatment, it didn't seem to affect me much. I know at least one person on the forum got a nice buzz and thought it was great; others have reported negative effects from any form of steroid. The spacey feeling sounds like that.
It may sound like we just go with everything normally, but is probably not really a breeze for anyone after any form of treatment. I think you will find that you worry about it less, and think about it less, now that treatment is done, and that as you adjust, you will be able to get back in the groove. My own work has gotten better every month since last September.
Steve
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Steve,Yeah now Im' somebody! Done with treatments steroids are believed to be creating some minor problems which should diminish.I appreciate the repiles,and look !!!forward to getting life back in order.
For anyone recently diagnosed with one these things,even a small one,I know we are told you can watch and wait and have plenty of time to make decision,they sometimes go a little quicker,and can knock out your hearing and balance in short order.I would just reccommend you stay in tune with your body and make sure you get your Mris as needed.Every case is different,but I wish I had insisted earlier on getting an MRI when I felt something really wasn't right.
No doctor knows the way your body feels only you do,If you don't like what you hear or docs attitude ,go elsewhere,there are some good docs out there,that will listen.Well off my soapbox for now!
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Bruce,
congrats to you for being a "postie" (post treatment)!!!! Sending wishes of wellness as you begin this new path of tumah' death. Hoping my good luck with AN and CK rubs off on you... onward and upward to wellness.
Congrats, congrats!
Phyl