what do i do now?

[jacey]

Hi Everyone

Had my MRI results this morning, apparently my MRI with contrast showed no AN, which obviously im relieved about. The specialist said i have reduced hearing in the right ear, high pitched noises, he seemed to think it would be loud noise that caused it, but i dont know what loud noise he could mean. He thinks i mightve had a virus or stress which is causing all the pain and balance problems, and said he doenst know whats wrong, and didnt come up with a solution either, just said go back to my GP, so im still no further on, i really dont know what to do now, im still not convinced either, even tho i have the MRI saying no AN, what could be giving me this probelm? I would be grateful for your thoughts on it, like the lady said on a previous thread, she was relieved they found a AN as she was feeling like a hypochondriac,  im feeling the same, i know something isnt right, but which road do i go down now. 

[Lorenzo]

Hi jacey,

Sorry to hear that the torment continues without a clear idea of what is casuing it! I can only imagine what it's like!!! Some of us had years of incomprehension and wrong diagnoses from various doctors before an MRI found an AN. But at least, they found an AN! I can only relate what happened to a friend of mine here. She had symptoms for years, but nobody coul tell her what is was. The usual story. She had an MRi and it showed nothing at all. But, she felt there was somehting, so she insisted for another MRI and finally organised a second MRI for herself. Second MRI at a different facility found a small AN of 7mm if I remember corectly. So, I guess not all MRIs or rediologists see them the same way. Sometimes they can be missed for whatever reason. I'm not sure if the first MRI had contrast or not. Did yours?

How many MRIs have you had?

Of course I think other problems can cause similar symptoms to ANs, so maybe talk to your GP again, and maybe a neurologist. There must be  a reason for all this, but not necessarily a tumour.

Good luck with it all, be persitent and insist that this be looked into again! Get another MRI if you need to.

Maybe oother people here have had similar experiences or have better suggestions. Hope so.

Ciao, Lorenzo

[Pembo]

What kind of specialist ordered the MRI? Did you have an audiology work-up? If you have diminished hearing I would think you should talk with an audiologist. You might also want to talk to a neurologist or ENT.

Keep pushing the docs! I had balance problems 5 years before they discovered my AN. I *knew* something was wrong but the doc kept saying it would go away. Well it did but when my balance probs came back my AN was over 4 cm.

I hope your problem is easily solved and best of luck to you. Stay strong and don't be afraid to push your doc to find a diagnosis.

[jacey]

Hi

Thank you for your replies. Please tell me what is an audiology work- up?

 A friend suggested I ought to see a neurologist, the guy i saw was a ENT specialist, but in all honesty, he was not very nice, or helpful, his bad side manner was, I mean "bed side" was well, lets just say, not so good, he was more interested in filling in my insurance form than dealing with my problem!

I dont know what to think about the MRI results, I have had two now, one without contrast, for 10 mins, one with for 45 mins, but they were both done in the same mobile unit and the same radiologist as before. i will request an appointment with a neurologist, I dont need this battle, but i dont really have an option do I?!

Thanks again.

Jacey

[matti]

hi Jacey,

I am going through something similar, except it is occuring on the non-AN side. I had AN surgery on my left side almost 9 years ago. I strarted developing odd facial symptoms on my right side last October, very reminicent of my AN symptoms, tingling, numbness, twitching, pain, etc..  I was fearing that I was dealing with NF2. Doctors suspected that it might be tooth related, I had a root canal. They thought it was sinus problems. I had an MRI with contrast  last Monday and it came back fine, except for a large sinus polyp on the right, but the doctors don't think this is causing my problems. I have had yearly MRI's since surgery and I have all my films with me so I also checked the scans. I am not a radiologist (I only play one at home lol), but I have had enough of these (9)  that I have a good idea of what I am looking for.  My doctor consulted with a neurologist who also saw the films and they feel it is some type of virus that is attacking the facial nerve. I am seeing a new neurologist who specializes in this area.  I still have not ruled out the large polyp causing these problems and will be going to the sinus institute in my area.

Take care and keep us posted

hugs,
Cheryl

[Jim Scott]

Jacey:

Sorry to learn that you are still struggling with these symptoms. 

I never had to deal with an ENT doctor, only my neurosurgeon, but apparently they are not all familiar with AN tumors.  Unfortunately, some can be more of an obstacle than a help, as you experienced.   Unfortunately, a medical school diploma and a state medical license doesn't come with a 'bedside manner' manual.  I respect physicians, but I won't tolerate a doctor that treats me dismissively or seems more interested in his fee than my medical problem.  One time being treated with that kind of disinterested, 'I'm sooooooo busy and sooooo important' attitude and I never go back.  Never.  No matter what the doctor's alleged expertise may be. But maybe that's just me.  I'm kind of stubborn and I don't tolerate disrespect when my expensive medical insurance is paying some doctor well over a $100. for a relatively brief consultation, I'm hurting and he (or she) acts as if they have more important things to do than talk to me.  No way, doc.  See ya later! My time is valuable, too.

However, I do hope you'll take your friend's advice and consult with a neurologist.   Hopefully, that doctor will have a better 'read' of your MRI or simply order a new one from a hospital, not a mobile unit.  Not all MRI scans are equal (in quality), as my wife's neurosurgeon once pointed out as he ranted and raved over the poor-quality MRI a hospital had given her when she was anticipating spinal surgery.  He immediately ordered a new MRI, at a different hospital.  We got the point.  A  lot depends on the skill of the technician, the condition (and age) of the MRI equipment and other factors that can make a big difference in what the MRI shows.  MRI scans can sometimes be difficult to read, too, even for experienced physicians and they are not uniform quality, by any means. 

Cheryl makes a good point; your symptoms may be due to some kind of sinus or other internal problem, which an MRI should indicate, if that is the case.  My first MRI was ordered by my primary care physician specifically so he could look for a sinus problem.  Lo and behold, it showed a 4.5 cm acoustic neuroma tumor, instead.  Go figure....and good luck with your next doctor visit.

Jim

[pearchica]

Jacey: get a new ENT! It's your hearing, you should get great customer service.   I was lucky in that my ENT ordered a contrasted MRI with Gladium die(?) so the bugger showed up right away.  I am a firm believer in research and daily checking in on this website when you are feeling discouraged and down and out.  Believe me, I was scheduled for surgery only to check the website and have Brucifer, Mark and Phyl encourage me to give one last shot for cyber knife- and GUESS what, NO real knife and I am done with my CK treatment.

My Husband and I also concluded that you should get early morning appointments- that's when doctors's are at their best- mid day they are okay but late afternoon- they are shot to hell ( just like everyone else). Just a non statistical observation. 

Take care, Annie