Concerned newbie

[nini]

Hello Everyone,

I hope you'll are fine. I very new to this forum and I'm very happy such a forum exists. I'm scheduled for an MRI tomorrow and I'm very anxious about it. I just want to talk to some of you so that I don't faint tomorrow when I hear the result. The truth is I've had hearing loss and a constant tinnitus for the past 6 years. My ABR was negative so I was told just go and have fun! Now after about 4 years of that time my doctor said you are probably a classic case of AN. I'm a little bit angry at myself because I didn't ask an MRI myself and didn't do the research I had too. I was just too busy with life. Now I'm afraid after these 6 years the tumor has become so big that I can't have surgery without complications  I just don't want half of my face to be paralysed. I know I should be stronger but I'm just so lonely. I'm actually much more afraid that the tumor is a Hemangioma and non-operable. I know death comes for everyone and I know I have to accept it but I'm just not that ready and strong yet.

[CHD63]

Hi nini and welcome to this forum .....

So happy you found us ..... this is a terrific bunch of caring, supportive people!  We all can relate to the terror upon learning of the diagnosis ..... which you are already experiencing.  It is not easy to do, but first of all, please try to relax until you have the MRI (make sure it is with contrast) and the report ..... then, we can help support you with whatever the results are.

You may want to start a thread (new topic) so everyone can find it better and respond to your unique situation and questions.

Secondly, treatment of ANs has come a long way with far more successful outcomes than in years past so do not assume you will have facial paralysis.  Only in extreme and very rare circumstances do ANs become life-threatening.

Deep breaths ..... we're here for you.

Clarice

[nftwoed]

Hi Nini;
  How was the MRI and what has led you to think these things about another tumor type, death, etc?
  I'm sorry you're feeling all alone with something, or not a lot. That's not an uncommon feeling with we ANers/NF-2ers; Actually, even those with perfect health.

Hello Everyone,

I hope you'll are fine. I very new to this forum and I'm very happy such a forum exists. I'm scheduled for an MRI tomorrow and I'm very anxious about it. I just want to talk to some of you so that I don't faint tomorrow when I hear the result. The truth is I've had hearing loss and a constant tinnitus for the past 6 years. My ABR was negative so I was told just go and have fun! Now after about 4 years of that time my doctor said you are probably a classic case of AN. I'm a little bit angry at myself because I didn't ask an MRI myself and didn't do the research I had too. I was just too busy with life. Now I'm afraid after these 6 years the tumor has become so big that I can't have surgery without complications  I just don't want half of my face to be paralysed. I know I should be stronger but I'm just so lonely. I'm actually much more afraid that the tumor is a Hemangioma and non-operable. I know death comes for everyone and I know I have to accept it but I'm just not that ready and strong yet.

[Jim Scott]

Hi, Nini ~

Although your concerns are normal, they may be unfounded.  The MRI should determine what is causing your symptoms and if it is an acoustic neuroma.  For what it's worth, I was diagnosed with a large AN - 4.5 cm - and underwent 'debulking' surgery (that included severing the tumor's blood supply) with no real complications.  I enjoyed a fairly rapid recovery and no facial paralysis or headaches.  90 days later, as planned, my neurosurgeon teamed with a radiation oncologist to 'map' FSR  (Fractionated Stereotactic Radiosurgery) 'treatments' intended to destroy the remaining tumor's DNA, rendering it effectively 'dead'.  I underwent 26 FSR sessions (approximately 40 minutes each) and suffered no ill effects, driving myself to and from each session (a 60 mile round-trip).  Subsequent MRI scans showed tumor necrosis (cell death) and the beginnings of shrinkage.  These tumors are benign (non-cancerous) and do not metastasize.  Unless never addressed, an acoustic neuroma is not fatal, but problematical.  To the best of my knowledge (I"m not a physician) facial nerve hemangiomas are very rare - and operable.  I'll bet you're probably stronger than you think you are.  Adversity, by necessity, often brings out the best in us,.  You should know that no matter what the MRI showed, the good folks that post on these forums are here to advise, educate and support you all the way, even if you just want to 'vent'.  If you  have an acoustic neuroma, it won't be fatal and you'll get through it just as thousands of other AN patients have.  I hope you don't have an AN but whether or not the MRI shows an acoustic neuroma, you're very welcome here because now, you're part of our family...and we take care of family. 

Jim 

[nini]

Thanks Jim and nftwoed for supporting. I'm really glad you are doing this good and you've got back your health. I can't put into words how I felt for the past several days.
I was really frightened by what my doctor told me. He basically said you are a classic case of AN. Then I just lost my mind because I have had all these problems for 6 years. I assumed it should have become really big now after all these years. The other problem was that I have no one to take care of me . All these just made me crazy. The more I read about AN the more I became convinced that's the case.

Actually I moved to another forum and I posted my results there. I got the MRI and it was clean. My doctor had no idea what's causing my problem and his only suggestion was to get hearing aid! I have some real symptoms and they are bothering me. I have no idea what to do.   

[bluebird]

Hi Nini,
I replied on your other post, but after reading more, I feel so badly for what you are going through.  When a doctor makes a statement like that (telling you you are a classic AN), it scares you half to death.  Sounds like it has been an emotional roller coaster for you.  I understand how you want to know what is causing your symptoms.  Another opinion is definitely in order.  I am also still searching for a diagnosis - as you can read in my previous posts.  The good people on this forum suggest going for 3rd and sometimes 4th medical opinions.  When the doctors don't know what it is, they so often attribute to anxiety.  The tinnitus can drive you crazy - I know!  Mine has been roaring and constant, ever since I suddenly lost hearing in one ear about 3 or 4 months ago.  I understand that dimension of how you feel.  And I also totally understand how you want to know what is causing your other symptoms.  I wish there was more out there for us to read about on the physiological sensations of hearing loss - so if the ear pressure and pain are part of it, we wouldn't be so frightened by all of it.  There are so many components to hearing loss that I never knew existed.  I wish I could be of more help.  But please try to get another opinion.  Neurotologist is probably best.  Have you gotten on the website of the American Tinnitus Association?  www.ata.org - You can look for a support group in your area and the facilitator might be able to advise you.  Also, the website can help you locate a reputable doctor.  Both have helped me to find the doctor I am going to see on Friday for a 3rd opinion.  I wish you the best and will look to hear more from you.  Please keep us posted!

[nini]

Bluebird I really wish my doctor and all other doctors cared more about the emotional aspect of the diagnosis.As you mentioned I think I have to see a neurologist and a psychiatrist and several more ENTs. Tinnitus hurts me most when I want to study and I need to concentrate. I turn on whatever to just hear some sounds which distracts me.
Last time about 4 years ago I had lost 30% of my hearing and now it is 40%.
I'd become a member of ata soon:)
I wish you the best too. I hope we can get rid of it:)