What if this *isn't* MAV

OK - maybe this is just my anxiety getting the best of me (I’m sure we’ve all been there at one point or another), but what if this isn’t MAV.

Unlike some on this forum, I was given a diagnosis of MAV after a relatively short period of time and without having to go to fifteen doctors in the meantime. What worries me is that MAV is usually a diagnosis of exclusion (i.e. EVERYTHING else has been ruled out first), and I don’t think I am at that point. My ENT, who specializes in balance disorders and said he sees my exact symptoms all the time, is convinced it is MAV, but I’m not sure that I am. I don’t feel like everything else has been ruled out sufficiently yet, but at the same time MAV seems to fit fairly well, and I do feel better with the diet change and the Amitriptyline (and the occasional xanax).

I don’t want to keep racking up medical bills if I don’t have to, but I’d also love to rule out all of the worst case stuff that keeps finding its way back into my brain (things like MS, brain tumor, etc…).

I did have a Head CT at one point, and the doc that gave me the result said that he thought he might have seen something, but that he showed it to another doc and that that doc said it was nothing to worry about and normal for someone my age (33). I asked the ENT about it at my last visit, and I guess that the only thing that went in the record was that the CT is clear. This just feed my fear that Doc #1 was right and that there WAS something there, and that Doc #2 was an idiot and that I’m sitting here with some devastating disease and don’t even know it.

ARGH!!! It’s all enough to make you tear your hair out!

Hi SlightCrazed-

I feel like a nag about this on this site, but here goes: A disorder called Superior Canal Dehiscence (SCD) mimicks MAV’s symptoms (and many other vestibular disorders too.) Yes, you should question your CT Scan. Even “something” should be looked at by a radiologist who knows how to look for SCD-----usually a neuroradiologist is best at this. First of all, in order to detect SCD, the doctor ordering it (hopefully a otolaryngologist or neurotologist) should talk to the neuroradiologist and explain what he’s looking for (SCD) and how he wants the CT scan run. This high-resolution CT scan is done at specific angles and so forth and you need to get “volume rendered images.” Unless the radiologist has done this type of high-res CT…most likely you will just get a regular one. Go to this site to see more:

http://www.dizziness-and-balance.com/disorders/unilat/scd.htm

Of course, you may or may not have this. I was diagnosed with MAV first and then I insisted on the high-res CT that finally DID detect SCD on both sides. Push, push, push those doctors and educate yourself tons on ALL of the possible diagnosis’ that you could have. There are at least 13 different vestibular disorders whose symptoms intermesh with each other. You (or a good doctor) need to untangle and eliminate all of the possiblities. It’s not a qucik process…it’s a long journey. The key is…DON’T GIVE UP!!!

Cheers and blessings to you-

Linda

Slightcrazed,

If the diet change and Ami is making a difference, that’s a pretty good indicator as is the ENT’s diagnosis. Baloh often says not to go from doctor to doctor hoping for something more concrete than migraine if the DX fits because you may end up wasting your money and stressing out endlessly. A second opinion wouldn’t hurt if you really think they’ve missed something. I know the feeling of second guessing. Granot wants me to have an MRI to be sure there’s no golf balls growing in my head. I still haven’t followed up!

Re SCD. A new paper just came out showing that “when a diagnosis of superior canal dehiscence syndrome (SCDS) was made based solely on CT scans, 80% of cases assessed were false positive … dehiscence of SSCC was demonstrated in 5 (3%) of the 164 ears assessed. Of the five ears noted to have a dehiscence of SSCC, the condition was also considered clinically to be SCDS in only one ear (0.6%).”

Scott 8)

Good article…it seems that I forgot to mention that I and most patients of SCD are not solely diagnosed on CT Scan alone. Sorry about that mis-information in my last post! There is another VERY important test called a VEMP (Vestibular Evoked Myogenic Potential) that also has to be done to help diagnose SCD. And, lastly, a patient should have “ear symptoms” ranging from hearing one’s eyeballs or heartbeat to fullness and pressure----just for starters. A good doctor should NEVER diagnose SCD based solely on the CT results alone. I did 3 migraine prophylactic drugs, the migraine diet, the no salt diet, benzos, etc. before I let my doc saw my skull open.

This article doesn’t mention the VEMP test…maybe it’s not available in Asia yet.

FYI…when all of my symptoms started, my pain migraines skyrocketed in frequency and severity. Now, after my first SCD surgery, the migraines have all but diminished. I’m one of the unlucky bi-lateral ones who has it on the other side and I am looking at another craniotomy this year to diminish the rest of my dizzies. There is emerging interest by some doctors in this field about the relationship between migraines and SCD----my doc is doing a study about it. It will be interesting to see in the years to come if it all ties together somehow.

Cheers-

Linda

Never stop researching and checking and asking and pushing for answers, especially if you have doubts and are uncomfortable. It is your health and your peace of mind.

Hi Linda

I have never heard of this condition and I tried to understand the article you posted. Strange thing is I have a benign Mastoid osteoma above my right ear. It is a hard bony protruding lump about 2cm round. I’ve been told that it wouldn’t be the cause of my dizzy problems but I’ve wondered since it’s so close to the ear canal. Does this fit with the diagnosis you described in any way? I’d love to know if removing it would stop the dizzies.

Thanks

Linda,

I was just informed by another member that i should get in contact with you. I live in oregon and have had symptoms for 4 years but just had 2 violent attacks of vertigo which left me feeling like there was some irreversable damage. To make a very long story shotrt, I finally met with Dr. Wackym (is he by chance your doctor too?) who was convinced I was suffering from MAV until I went through all the tests. I ended up with a positive VEMP and ECOG and then he sent me for the CT to rule out the SCD. Well, at my follow up appointment he told me about the tests and showed me the CT which he said appears the have a very small SCD. He then told me he would like to treat me with meds first. He prescribed me Verapamil and said if I get any relief at all from it then it is definitely MAV but if I don’t see any results from the Verapamil then it is definintely a SCD. I quit the Verapamil after 4 days because it made me feel flat, exausted and gave me problems sleeping. I think I will call his office and try to start off wiht 1/2 the dose. I guess I need to give the MAV meds a try to figure out if it is SCD or not. What is your opinion? Even though I had a positive VEMP, ECOG AND CT Dr. Wackym still isn’t totally convinced it is SCD because I don’t have a lot of the symptoms it produces. I don’t know what to think. I am very to new to all this and thought I was just gonna get a clear diagnoses of MAV and that just wasn’t the case. My quality of life the last 4 years has been so depressing. I need all the advice I can get. Thanks so much.

Leslie

I’m kinda in the same boat, my ENT hasnt done any ruling out tests he just said MAV from my symptoms, I do worry he has got it wrong but he’s meant to be the best in the south east of England so I am trusting him.
I hope u feel better soon

im sure everything is fine. Did you ask the dr what he thought he saw? and how its related to age? Mris are better than ct scans. I have had something found on my mri that wasnt seen on my last nor on ct scan. Its extremely rare and very unlikely anyone here has it, and possibly?? has nothing to do with my vertigo. Few drs ever see it thats why it was missed.
So if your uncomfortable with your dx you can ask for mri. But what ive found is you can have something like me and stumble on to it (before its emergency time)(<.5% population) or they find it under emergency situations, so if it was major its likely it would have reared its head by now and causing different symptoms, id say 99.5% clear!