Author Topic: My acoustic neuroma symptoms - yours?  (Read 55221 times)

Volley

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My acoustic neuroma symptoms - yours?
« on: September 27, 2006, 01:17:56 pm »
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.

tatianne

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Re: My acoustic neuroma symptoms - yours?
« Reply #1 on: September 27, 2006, 01:36:09 pm »
sorry to hear that you are having to live with all of this.
I have an 8mm AN that was found in July, im presently under wait and watch.
I cant say i have any burning feelings, although i have a lot of feelings of increased heat, like im hot all the time and i become sweaty a lot more easily.
I can tell you that i have been researching this for a few months and i still havent seen anyone AN turn out to be cancer, actually i havent heard of one person on this board who has mentioned hearing this.
It is apparently extremely rare.
You have come to the right place for good advice and good friends, i hope all your questions are soon answered.
T
Waith and Watcher
July 2006 8mm
Jan 2007 9.5 mm
Jan 2009 1.4 cmm x 5mm
GK surgery completed on May 4, 2009 in Sherbrook Quebec, hoping and praying this will be the beginning of the end of my AN......

matti

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Re: My acoustic neuroma symptoms - yours?
« Reply #2 on: September 27, 2006, 02:06:03 pm »
Hi Volley - Welcome to the forum!  You sure have had alot going on the last year or so.  From some of the things that I have read, it may be difficult to distinguish between an AN and meningiomas on scans. I know one of our forum members was diagnosed with an AN, but after surgery found that it was meningioma. Hopefully she will respond to your post and give you more info.

The burning pain that you have described is what I developed after my AN surgery in 1998. It varies in intensity and location. I may feel my left ear lobe burn and at the same time the burning pain will radiate to two spots on my left arm. The places that I feel the burning sensation are always on the AN side and include my cheek, ear, collarbone, upper arm and part of my lower arm above the wrist. It comes on suddenly and may last for a couple of weeks and may not return for a month or so. I do know that stress aggravates it. I have had many MRI's since surgery and everything looks great.  Some of my doctors are puzzled by it , while the last batch have told me that it was my facial nerve misfiring and prescribed Neurontin.

In January of this year, I started feeling a burning pain in my left arm pit and left breast. Shortly thereafter, I discovered a lump in that breast. Biopsy showed that it is a fibrocystic tumor and I am having it removed soon. I notice that monthly hormonal changes affect the burning pain in my breast and arm pit. Do you notice this?

Luckily your tumor is small and you do have time to gather info. You have probably read on here that House Ear Clinic in Los Angeles will review your scans for free, I think that may be a good place to start for you as well.
Please keep us posted and I hope your hubby is doing great!

Hugs,
Cheryl

3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

jamie

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Re: My acoustic neuroma symptoms - yours?
« Reply #3 on: September 27, 2006, 02:17:15 pm »
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?

They can never be sure unless they biopsy it, however they can tell with near certainty based on the location, the way it enhances with gadolinium, and physical characteristics. Meningiomas usually have a "tail" that comes off the brain, and malignant tumors usually grow fast.

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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.

Since my neuroma is on a lower nerve, I had alot of the symptoms you describe as far as earache, and pain in the throat (all went away after CyberKnife). The burning sensation is probably neuralgia (google glossopharngyl and trigeminal neuralgia) caused by the tumor, and since nerves are all connected it can radiate down the arms, chest etc., it's called referred pain and I don't know why so many doctors don't seem to know of such things...

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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?

Be sure to see a specialist in both surgery, as well as radiosurgery and so alot of research as most specialists pitch their specialty and sometimes give inaccurate or blatantly false info about other options....good luck!
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

Volley

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Re: My acoustic neuroma symptoms - yours?
« Reply #4 on: September 27, 2006, 02:22:53 pm »
Cheryl (matti),

You have no idea how reassuring it is to read your post.  It seems your post surgical symptoms are very much like my current symptoms.  Perhaps the surgeons "pissed off" a few nerves in there, and this is how they are reacting.  I hope your symptoms improve.  I thought it was crazy to think a tumor near cranial nerves could cause symptoms anywhere below my neck.  

As I read your breast symptoms, I thought you had cut and pasted a snippet from my posting!  Did you decide to go ahead with the removal of the fibrocystic tumor because it was causing pain or because it had some pre-cancerous characteristics based on the biopsy?  I hope its removal goes well for you.  Maybe I should have them cut mine out, so they can do pathology on the whole mass rather than on just the part they biopsied.  (That's probably a question for the breastcancer.org discussion boards, though.)  I do not necessarily notice the burning pain in my breast and armpit (etc.) coinciding with my monthly hormonal changes, but I do think I'm perimenopausal (age 45) and am probably experiencing bizarre levels of hormones throughout the month.  

Thanks again for replying, and yes, the hubby is doing fine.  He lost about 25 pounds immediately after surgery but has gained it all back.  Good thing we kept the old clothes!

Pembo

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Re: My acoustic neuroma symptoms - yours?
« Reply #5 on: September 27, 2006, 02:50:28 pm »
Just to let you know my AN was pressing on the nerves for the stomach and the neck. I had shoulder discomfort for years prior to finding my An and I was mis-diagnosed with IBS before surgery as well. Turns out the tumor was the problem, I've had no stomach probs since my surgery.

Long answer to short question, yes the tumor can affect you below the head. :)
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

Volley

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Re: My acoustic neuroma symptoms - yours?
« Reply #6 on: September 27, 2006, 02:58:48 pm »
Pembo,

Unbelievable!  I see your AN was quite large.  Do you know which nerves or part of your brain it was pressing on to cause symptoms in your abdomen?  I've been having some funny feelings in the abdominal area (pricking pains), but thought I would sound ridiculous if I brought it up to my physician and tried to suggest it might be related to my AN.  With mine being so small (3.5 mm), I feel like none of the docs are going to believe my symptoms, particularly the distant ones, are related to the AN.  Thanks for your reply.

Obita

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Re: My acoustic neuroma symptoms - yours?
« Reply #7 on: September 27, 2006, 06:13:58 pm »
Hi Volley:

Go see a Neurotologist/Otologist.  They are specialists in skull base surgery.  I did check and there is at least one at the Univ. of Wisc. Madison - his name is G. Mark Pyle.  He would be a good place to start.

Good luck to you,  Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

sandyinwisconsin

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Re: My acoustic neuroma symptoms - yours?
« Reply #8 on: July 27, 2013, 04:59:59 pm »
Please send your MRI and hearing tests to the House Ear Clinic in LA.  The surgeons will personally call you. 
Due to my insurance, I have to have my surgery at Madison.  I live in Rothschild, WI.

sandyinwisconsin
1 cm AN deep in the boney canal.  Treated with 26 treatments of radiation in December, 2013.  Please pray with me that this worked.

 


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