I just had a caloric stimulation test on my ears (as well as a hearing test which my left ear shows some hearing loss) due to ongoing symptoms of daily dizziness and nausea for over a year. My right ear did not show a reaction to the water and air instilled, like it is suppose to (and it was repeated to be sure), but my left ear did like it should. (Ironically I have symptoms of mild paralysis and weakness and pain on just my left side with a sudden onset of these symptoms in 2001 when an MRI revealed a capillary telangiectasia on the pons of the brain stem, and a sudden worsening of these symptoms again in October - no problems on my right side.) I do not see the specialist at U of M where I had testing until next month for my results but was told by PT I have right ear nerve damage.
What could cause damage to the acoustic/vestibular nerve? My recent MRI done locally did not state there was any evidence of an acoustic neuroma but possible ischemic changes near the capillary telangiectasia. I take this as meaning a possible bleed/hemorrhage and I assume this could be the cause of my left-sided symptoms. Could this be the cause for all my symptoms and/or nerve damage in my right ear? Could it be the cause of hearing loss in the left ear as well and/or the left-sided symptoms mentioned above?
I sure would appreciate any your feedback. Thank you so much.
I saw that no one had posted to you in the last week, so I thought I would.
I was diagnosed with Lyme Disease several years ago, and have done alot of reading, looking for information and answers.
One thing I learned is that Lyme bacteria can invade any part of the body.
When they spread to the cranium, they may settle in any of the cranial nerves, and cause all kinds of problems.
If the bacteria infect the nerves to the ears and the organs of balance, it may cause symptoms like yours.
Your symptoms may be due to another cause, but if your doctors can't give you any help, you should investigate tick borne infection.
If you want more information, see the Canadian Lyme Foundation.
You can also post a query on the Medical questions forum at LymeNet.org, listing your symptoms and results of your tests.
Ask your doctor if the paralysis and weakness is due to the stuff he found on the MRI.
These are also symptoms of Lyme.
Thank you so much Carol. I really appreciate your feedback. I would have never thought of Lyme disease as a possible cause! Would Lyme disease cause symptoms like these that progresses over a five year period of time??? That is when my symptoms first began and when I had the first MRI that detected my brain stem malformation. It was just considered an incidental finding but the latest brain MRI has shown some change.
I will be looking into Lyme disease more for sure. :)
Carol, I have read a little bit now and boy it sure sounds like Lyme disease could be a possibility for my symptoms! May I ask what tests they did on you to diagnose you?? I see my family doc this Wednesday and I want to ask him to check me for this. It appears from what I am reading that there is no one test that will definitively rule Lyme in/out. :( I want to know what I should ask for.
I have have allergies and am very sensitive to insect bites and have been bitten many times over the years and had quite reactions but assumed they were spider bites or some other bug I was sensitive too, which very well could be, BUT we do camp/RV AND we live in the woods and my husband hunts deer and we have many deer around us. I live in mid Michigan so Lyme certainly could be a possibility.
I couldn't believe how it appears that all my symptoms are listed for Lyme disease! I have/had every one that is listed! The sad part would be, if I do have this, that I have had it so long and not being treated that there could be permanent damage.
What I am really seeking most of all though is an answer for all my symptoms and knowing is certainly still better than not knowing!
Sandilynn, if you ask your doctor to check you for Lyme Disease, he'll probably order the ELISA test.
This test is so inaccurate that you may as well flip a coin.
When I figured out that my symptoms might be due to Lyme, I asked my doctor for the Western Blot IgG and IgM.
Usually the docs order these tests only if the ELISA is positive.
All my previous ELISA's for Lyme had been negative.
I also asked that the test be sent to Igenex lab in California, which all my docs thought was stupid.
Igenex is one of the labs that specializes in Lyme, and they test for several strains of the bacteria.
Most labs test for one strain. As there are about 300 known strains, and tests for less than ten of them, most cases of Lyme are missed by the lab tests.
Lyme Disease should be diagnosed by the patient's symptoms and history. This is known as a "clinical diagnosis."
Most docs are not willing to make a clinical diagnosis of Lyme.
They order the tests, and if they come back negative, tell the patient that he doesn't have Lyme.
You'll have to do alot of reading to educate yourself about this disease.
Many people find a Lyme literate M.D. who does all the testing and prescribes antibiotics.
I persuaded my family doc to order the test for me, and when I was positive, told him that I would find another doc to treat me.
I found the discussion group at LymeNet.org, and after several months of reading, decided to self treat.
Don't expect too much from your family doctor.
Many physicians have a great deal of trouble recognizing the pattern of symptoms for Lyme.
And they certainly don't have time to do alot of research to find the best ways to diagnose and treat it.
I say this because I've been concentrating solely on Lyme for several years.
I'm not trying to be disrespectful of physicians, but I've had some lousy experiences.
Go ahead and ask your doctor to be tested for Lyme.
He'll think you're nuts, and the test results will probably be negative.
Then go to LymeNet.org and start reading the newbie help links, on the medical questions forum.
The amount of information will make your head spin.
There are several other people from Michigan whom I found here and referred to LymeNet.
If you post on the "seeking a doctor" forum at LymeNet, with your state in the title, someone will contact you regarding referrals.
Boy, Carol, I know what you mean about docs. I have had my share of experiences believe me. :( Sigh.... I do have a pretty good family doc now though and he will do pretty much whatever I ask of him - but knowing WHAT to ask for is the key though. :D He really wants to find the cause of my symptoms. He just does not know and thus the referral to U of M.
You have helped me immensely. I know Lyme disease is probably a long shot, but after years of no diagnosis I am about willing to test for anything! My life has literally been taken away this past year. I have had to cut back to part-time work at home and do very little of anything else as my symptoms are so significant. I have daily nausea and the only thing we have found that I can take (and still function) to help where I can at least eat is hydrocodone 3 x a day.
I was hit with benign paroxysmal positional vertigo a year ago and could only get in about 400 calories a day for about two months. I got down to 109#. I am 5'1" and I needed to lose but still I lost 40# in a short span of time and I KNEW I was dying. Then, slowly I started to gain my appetite and ability to eat when I incidentally found my pain med (that I take for chronic back pain) relieved the nausea enough to where I could eat but during the worst of the vertigo even that didn't help. Even my Dad told me after I started to improve that the last time he had seen me he gave me about three weeks to live. I was begging for help from my doc but all my lab work showed fine and he did in-depth labs but like I told him that one of my systems WAS going to stop functioning sooner or later due to my inability to eat and by then I figured it would be too late. I need to learn to be more assertive! I should have been given IV nutrition.
I recently saw my rheumatologist and he asked about lupus testing and so that is another test I need to ask my family doc about when I see him this Wednesday.
Everyday seems to bring yet another new symptoms in this adventure. :(
Carol, what an awfully nice thing for you to do. I think I will hold off on registering over at that site though until after I first find out what my diagnosis is. As I mentioned, I see my family doc Wed. and then see the otolaryngologist/neurologist specialist at U of M 01/02 and should at least know the results of the testing I had down there and what may be be recommended next.
I just feel so overwhelmed with possibilities and then am feeling so awful that sometimes I think I get myself even more worried by the more I read so think I have to try to keep a happy medium. :D I feel overwhelmed with all the info out there but I sure am glad it IS there! :)
Once I get a diagnosis (and I pray I will), I will become more involved with whatever forums support that as I know I need that support.
You are truly a wonderful person to go to all this trouble and thank you again for everything. I will post back here when I find out something more definitive, okay?
Carol (and others), I just wanted to let you know that when I saw my family doctor this week that he said the vestibular nerve damage I have is most likely the cause of my nausea, balance issues and even the left-sided weakness and minor loss of sensation.
I will be seeing the specialist at the University of Michigan on 01/02/07 regarding the results of the testing I had done at their facility and, of course, I will have a more definitive diagnosis then but I think we have found the culprit and, if so, I am SO glad!
I know the outcome/treatment may not leave me with the most desirable outcome but the way I feel now, if I can stop the nausea I will be SO relieved. I can have physical therapy to help with the imbalance and weakness. However, I realize in order to stop the nausea and help with the balance problems, I may need surgery or gamma knife/radiation and there are serious consequences to those treatments as well. I just know I do NOT want to live with daily nausea anymore. I have read that treatment could potentially leave you deaf, leave you with facial paralysis (which I already have some) and other problems, but I also know I want the nausea to stop! :)
I will wait and see what the specialist has to say and I will definitely be inquiring as to the cause the nerve damage. There are two other possibilities -one I mentioned is the fact that I have a capillary telangiectasia on the pons of the brain stem and there appears to be some type of change on my latest brain MRI from previous year, like possible ischemic changes so I assume that could mean some bleeding. From what info I have found, the vestibular nerve runs to the pons of the brain stem so there definitely could potentially be some correlation there.
Also, I had chronic ear infections, left untreated as a child, other than home remedies, as that was just the way it was when I was growing up and my parents could not afford doctor visits and certainly didn't think it was anything serious. I know several doctors have mentioned noting scarring from the chronic ear infections I had a child so possibly that has something to do with this as well. I guess I won't know for sure until I see the specialist.
I sure am keeping in mind what you said and will be looking to find out the cause of WHY I have vestibular nerve damage.
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