New here, and question

[Obita]

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

[sgerrard]

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

[BDB]

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?

[BDB]

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

[sgerrard]

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

[BDB]

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

[sgerrard]

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

[BDB]

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

[sgerrard]

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

[BDB]

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!

[ppearl214]

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