New here, and question

[BDB]

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

[Joef]

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!!

[er]

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

[BDB]

Thanks for the replies,Im' keeping my fingers crossed,but will report on my outcome regardless.Happy new Year to you alll !!! Bruce

[marg]

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.
   

[BDB]

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

[marg]

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

[elderbirds]

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

[Boppie]

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.

[Joef]

elderbirds,
   yep .. thats normal . (for a AN) .. most start in the Inner Auditory Canal and mushroom out.

[BDB]

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

[Joef]

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  ...

[BDB]

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.

[Joef]

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!

[BDB]

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!