Hello everyone! I've been reading some posts here since my AN diagnosis, and it looks like this group is going to be fun to "share" with. My "saga" started in February 2005 when I noticed a severe sore throat and cold-like symptoms developing as I was waiting for my husband to come out of colon cancer surgery (good result, no cancer left). Yup, I'm sitting in a hospital for 12 hours and actually go from feeling perfectly fine to feeling like crap. I had a sore throat and just thought it would go away in the normal 10 days to 2 weeks viral infections usually take to run their course. Well it did, but then it came back, regularly. Every few weeks or so I would have a sore throat to varying degrees and then started to notice earaches occasionally. I would also get severe "canker" sores in my mouth on the left side back where the upper and lower jaws meet. All my symptoms were on the left side. Even the sore throat felt one-sided.
I saw an ENT doc in May 2005. He scoped my throat to look for any unusual "items" (none), and said that perhaps my symptoms are caused by my occasional migraine headaches. Even though there was no correlation with the headaches in the past and there weren't any now, I said "okay" and left. I mostly wanted to make sure he didn't see some massive tumor growing in my throat. When the symptoms continued, I went back to him in January 2006 and he ordered an MRI and CT of my head and a CT of my neck. These were negative except for "trace mucosal thickening of the petrous apex," seen on both MRI and CT. I guess the petrous bone is in the general area where these AN tumors occur. He didn't think the mucosal thickening was anything to worry about.
In the meantime . . . . Back in December of 2005, in the midst of dealing with the throat/ear stuff, I start to notice that my left breast has a burning feeling (like sunburn) but deep inside. The pain also occurs in my armpit, inner left arm, and even into my shoulder and collarbone area. I thought for sure I had some horrible breast cancer. I had a mammogram which was negative in January 2006. Symptoms continued but both my internist and breast surgeon could not feel any lumps, so the breast surgeon told me to take Vitamin E for breast pain symptoms. I had a regular physical in April 2006 and a yearly screening mammogram in June 2006. Well, helloooo, they find a mass on the left side. I'm thinking good and bad: might have an answer for my symptoms but might also have breast cancer. Well after 2 1/2 long months where I had to wait for an ultrasound, MRI and then a MRI guided breast biospy, I finally was told it was just benign breast tissue. Part of the mass is still in there, but they think they got a very good sample and are confident it is benign. Okay, fine. Just follow up with another breast MRI in 6 months. Not a fun way to spend the summer!
Fast forward to September 2006. Because I was still having my sore throats and earaches occasionally and because I had developed burning/tingling sensations in my face and burning feelings of my left earlobe (even as far back as April), I asked my internist to do another MRI of my brain. It is now on this MRI, 8 months after the first one (mucosal thickening), that they see what they think is a 3.5 mm intracanalicular acoustic neuroma. Since I still have all these left-sided burning symptoms, particularly now in my collarbone area but also extending down into my breast, armpit and arm at times, my doctor still wants to do more tests to rule out anything like meningiomas, etc. I also am a little freaked out that I have some stealth-like breast cancer in there yet and it has metastasized to my head and elsewhere (though I've been reassured that it's not likely).
Recently, I had a negative thoracic spine MRI and am waiting for a CT scan of my chest and chest wall next Monday. I can't believe you're still reading this! Here's what I need you folks to comment on (besides my long-windedness):
1. How sure can a radiologist be that something as small as 3.5 mm is an acoustic neuroma and not something else like a meningioma or malignant type tumor? I thought I read somewhere that it's difficult to differentiate between these tumors when they are so small. Did any of you go through a period where they weren't sure what it was?
2. Has anyone had burning symptoms radiating as far away as their shoulder, left arm, etc. I'm inclined to think not since cranial nerves serve the cranial area, not the arm, chest, etc. Perhaps there is something else going on with my cervical neck nerves? Any comments appreciated.
3. What type of doctor should I consult with to discuss all these symptoms and to discuss this tentative (my word) acoustic neuroma diagnosis. I live in Madison, Wisconsin, and have been seeing doctors affiliated with the University of Wisconsin Hospital & Clinics. I haven't seen anyone mention the University of Wisconsin in the same breath as "center of excellence for acoustic neuromas," but I'd like to start here with at least a neurologist perhaps(?). Does that seem appropriate? My doctor was thinking of sending me back to the ENT guy. What do you folks think?
Ultimately, I want to make sure I have an acoustic neuroma (that sounds crazy), and then I'm willing to travel far and wide to get the best advice/treatment from the best team. I know I have some time, so I'd at least like to start with a local doc here, just which kind?
Thanks for hanging in there. Cheers.