Worried .. Just had second mri ..

[grams 11]

I hope someone on here can possibly help me .. I just had results from second mri ..The first one last yr. showed a small neuroma  on right side and I am completely deaf in that  ear .It only measured about 4 mm..  Now this second mri shows a neuroma also on my left side and I have noticed less hearing in that ear also ..Last yr. the left side was clear .Im not sure what to think ..Im going to see a specialist . and then probally to sunnybrook hosp. to see same specialist I had seen last yr.I also have balance problems .. Having this on both sides is troubling to me ..Hope I can get some encouragement ..Thanking You all for all the positive feedback on here..   Joan

[Kaybo]

joan~
I am sorry that I can't really help you with those specific problems, but I hope that the Dr. has some answers for you.  You'll be in my thoughts & prayers.

K

[sgerrard]

Hi Joan,

I'm sorry to hear about more hearing problems. It is probably better to wait and get a real diagnosis from the doctor, rather than have us speculate about what you might or might not have. I hope it turns out that you will be able to keep the hearing you have left. We are here to support you in any event.

Steve

[mrgarlic]

Greetings grams 11,,, to the regulars on here, I may sound like I am playing a tape over and over. Are you getting a "thin slice" MRI with a 3.0 machine. They are not common. An ordinary MRI missed my correct diagnosis. I had an Acoustic Neuroma surgery in 2004. This summer I was wrongly diagnosed with the tumor growing back. After the good MRI it was found to be "another tumor" but not Acoustic. It is a Trigeminal Neuroma. Get a Dr specializing in AN's and get a good MRI, then see what is going on. Hang in there, we care and want to hear more from you.     Larry

[leapyrtwins]

Hi Joan -

we're just patients, not doctors, so we can't diagnose you. 

Your best bet is to wait to see what your doctor says about the MRI.

Please keep us updated.

Hoping for the best,

Jan

[Tumbleweed]

Hi, Joan:

Jan is right to say we're not doctors and can't diagnose. Having said that, however, I want to alert you to a possible explanation for your MRI results. If you truly have an AN now on each side, your doctor should explore the possibility of neurofibromatosis, or NF-2, an inherited disease. I cannot stress enough that it is way premature to worry about NF-2 or any other possible diagnosis before a specialist sees your films and advises you. But I mention NF-2 so you can mention it to your specialist. If they are not up to speed about NF-2 and you do actually have two ANs (the MRI could look misleading to even some professionals), you should seek out the opinion of an AN specialist who has treated patients with NF-2.

In the meantime, try not to get too wound up over this. It may be a lot less worrisome than you fear.

Best wishes,
Tumbleweed

[wendysig]

Hi Joan,
I just wanted to welcome you to this forum.  As others have said before, since we are not doctors we can't offer a diagnosis but we can offer our support.  Please let us what the doctor says and how you are.  We are here to support you however we can.

Wendy

[Tumbleweed]

Joan, just to clarify: if I'm not mistaken, you could possibly have an AN on each side but still not have NF-2. If indeed you have bilateral ANs, I recommend you see a doctor who treats NF-2 not because you have NF-2 but because, due to their experience with the disease, they would be able to determine if you do or not. A doctor who is not hip to NF-2 might overlook this possibility.

Too many of us on this forum have been misdiagnosed by inexperienced doctors, so I just wanted to make sure you had the information you needed to lead you to an experienced doctor who could give you the best possible advice.

Best wishes,
Tumbleweed

[Cheryl R]

Tumbleweed,    Where did you get that bilateral ANs are not always NF2?             They are and that sometimes will be your only NF2 symptom.           That was the first thing my neurologist said that I now have NF2 when the one on the other side was found.                  There is more than one type of NF2 and that plays a part when you get it and the range of effects you do end up with.
 Just bilateral ANs is the milder version.      Not that it feels mild if you are the one with it.   
                                                    Cheryl R

[Raven]

Here is the condensed version explaining NF2:

 http://www.theuniversityhospital.com/nf/aboutnf2.htm

Joan, best of luck to you.............keep us posted.

John

[Tumbleweed]

Tumbleweed,    Where did you get that bilateral ANs are not always NF2?             They are and that sometimes will be your only NF2 symptom. 

Cheryl, thanks for correcting me. You obviously know more about NF-2 than I. I had not read that the presence of bilateral tumors confirms NF-2 diagnosis. My bad.

Regrets,
Tumbleweed

[Cheryl R]

Tumbleweed,  don't be hard on yourself.    I was just curious where that may have been written.   
I would dearly love it if I didn't have some knowledge of NF2.             It was the last thing I ever expected to happen.
                                            Cheryl R