Newbie AN'er- greets to all!

[leapyrtwins]

LT -

contact the hospital where you had your MRI done and ask them for a copy of the radiologist's report.  My MRI was ordered by my ENT who called with the news that I had a "growth" in my inner ear canal.  He didn't elaborate on what this "growth" might be and told me he "didn't know the size of it".  Then he promptly referred me to the neurotologist who ultimately did my surgery.

Long story short, before my appointment with the neurotologist, I requested a copy of my MRI report and was able to read all the information the ENT failed to give me.  In the report the radiologist speculated that I had either an acoustic neuroma or a meningioma (sp ?).  It also gave the exact dimensions of the "growth".   Despite the fact that I've known my ENT for more than 28 years, he obviously was uncomfortable giving me the "bad" news.

Hopefully the doc tomorrow will shed some light on the size and location of your AN, but even so, you might want to get a copy of your MRI report.  It doesn't hurt to get a copy of the films either.

Jan 

[ladythunder]

Hi all.. Thanks for the well wishes..

I found out that big city + small town girl = bad mojo!   

Well, the surgeon I spoke with yesterday says he sees "something" in there, but he doesn't know what it is. At this time, he's not comfortable with calling it a tumor so he and a neuro radiolist are going to look at it together and see what they think.

Well, I guess that's either good or bad, depending on how you look at it.

He thinks I *may* have multiple problems going on with the ear AND my brain. 

One thing good that came out of it is that he was able to explain the difficulty reading; it's this stupid nystagmus. Once again, they're in love with that thing.  Whatever floats their boats, I guess.

I need to have another stupid VEMP test done as he thinks there's a possibility I have something called "superior canal dehiscence" , or a hole in the bone somewhere in the semicircular canal area.

He did say that if it's this dehiscence thing, there's a chance that if they fix it, I *might* be able to get my balance back again, but he's not sure yet.

They would like for me to use a wheelchair whenever I leave my house though, because I pretty much have no balance at this time; fat chance of that happening! As long as my legs are working, I'm using them! I'll consider it though.

Leap: I did get a copy of the report and the scans to take to the surgeon in Boston. The report calls it a schwannoma. That's where my confusion comes from: is it or isn't it? The report states no size in cms or mms, only that it's "small and located at the entrance to the right internal auditory canal." I had the scan done at EMMC, maybe Star knows of the place. It's a teaching hospital and I'm wondering if a "newbie" read the thing. Total bonehead move if so.

Now I feel like I'm back at square 1 and that I don't belong here anymore. 

Love and thanks to all;

LT

[HCSTARWIND]

Hi Ladythunder
 Sorry for the late response about EMMC. I'm was away in Maryland. I work at EMMC. That is where I had my MRI's . I also had one in Boston before visiting Dr. Fred Barker, Neurosurgeon. My Neurotologist is at UMass Mem. Dr. Daniel Lee. I have been following with him for any changes. So far things are small on the side of the tumor.
However, I am having more facial numbness, tingling in my lip and lower jaw. I went to a local Neurologist here and in Nov. 07 had a more extensive MRI of the brain and C-Spine. I have a cervical fusion in my neck at level C6-7 done 24 years ago. I now have arthritic changes in the C4-5 area and a protuding disc., centrally at level C5-6. Also noted was a prominent vascular structure crossing the trigeminal nerve at the cistern in the meckel's cave. These things were presented to me as "no acute" changes. I beg to differ! I am having symptoms and the above pathology could be causing my symptoms as well as the presence of a 5x5mm AN located in the IAC. I t was recommended to me by my neurotologist not to pursue radiaton . My case was presented at the Skull Base conference at MGH. Neuroradialogy suggested no to irradiating the tumor because of my facial symptoms. 2. Possibly it was a lipoma vs the AN. 3. To rule out a malignancy from another area in my body . I had every test in the book to r/o out that possibility and all came back negative. Thank God. So for now I am adapting . Having some difficulty days of balance issues mostly and alot of neck and muscle  pain. I did try tregretol and neurontin. Side effects were awful!. I am now on a beta-blocker called Atenolol , use to help keep by b/p down and eleviate some of my head pain. So that is my story. I will continue to watch and wait. Next MRI is in Nov.08. I have constant loud tinnitus, fullness in my left ear, and occ. temporal headaches. Initially I had the dizziness and horrible balance issues. My hearing loss is approx, 50-70%. I am more concerned about my facial symptoms . If I lose what servicable hearing I have, I can accept that especially considering my age of 58. I
I hope I haven't bored you with all of this. I would like to hear how you are doing after your appointments. Helen

[HCSTARWIND]

Hi again LT

In response to the VEMP test, I didn't have that to rule out superior canal dehisence. I had a CT scan. What they call Stellar Orbit scan. It came back negative for the hole in my temporal bone. Maybe ask about the CT instead of the VEMP test.

Who was your ENT here in Maine? I met with Dr. Bradley Goldstein in Ellsworth.

Take care and if you need to talk. PM me and I'll give you my tel #.

Helen