Tulio Syndrome

[Omaschwannoma]

Hi All,

Just got my most recent audio report back and got an answer to what happened to me that day.  Audiologist had to stop the testing as during one part I became nauseous and felt like I was going to fall off the chair.  At that time there was a low tone sound and that's when it hit me.  He wrote on report he suspects Tulio Syndrome.  So, of course I "googled" and read about this.  Looks like it could be number of reasons so going to contact Dr. A to talk to him about this.  I did have episode of servere vertigo 2 weeks ago that left me with increased ear fullness in my good ear.  Sure hope there's no more issues with me as I'm pooped out with this business! 

Tired of feeling "special".

[Omaschwannoma]

My guess it's got to do with my good ear as that's the one the speaker wire was in as my left ear is totally dead so he didn't put a speaker wire in there.  I use "speaker wire" because I don't know any better how to describe what was stuck in my canal and gave off the low-tone sound. 

[Omaschwannoma]

Here's an update on what's cooking in my good ear....

Dr. A thinks the issues with my good ear are AIED (autoimmune inner ear disease) or MD (menier's disease).  He thinks any treatment will create a bigger problem and I seem fine now. 

After looking into both of these dx's seems there's really nothing out there one can do but wait for the other shoe to drop.  Good thing I'm taking lip reading and sign I guess. 

What is life without two vestibular nerves going to be like? 

As for another tumor in my good ear, well my MRI is due in 2 years, so that answer will have to wait until 2010.  As of last year, MRI's show no tumor.  Probably very slim this is the cause though. 

[Cheryl R]

Arushi,     How frustrating for you.           We were just supposed to have one AN with a good recovery and that was it!         It gets so much harder when later we find out more issues are part of our lives.              Wasn't the auto immune the one Rush Limbaugh has also?              That is good that for now you are fine.   
    Remember I am one with both vestibular nerves gone.        Remember I was one last spring who just got up past my surgery and walked no different than what I do all the time.        Why I don't know.         I did ask pre op if there was any chance that I had already compensated and they said maybe.              All I can say is that angels have been watching over me.                 Yes I do have some balance issues.          My everyday normal walking gets by ok.        I may weave in some places.          I have to pay more attention in the dark.                 My worse problem is slick winter conditions.         I absolutely panic on anything icy.                 I do have a wider based gait which I don't think I do all the time.      I don't even pay attention to it as my 5 yr old Abby asked me why I was walking funny.     She knows about Grandma having had the ear problems so told her it was part of that. 
Remember a year ago how sweet you were over my dismay over not getting to listen to Christmas music due to my hearing getting worse.            You don't know what it means to me this year to know that I will be listening to it.        I never dreamed that I would have my hearing back.   
That is my biggest thing I am thankful for this Thanksgiving.           
      I hope things go as well for you as they have for me.        You will be in my prayers and thought that it will.                           Cheryl R

[Cheryl R]

Arushi,  One more thing which I forgot.    My biggest problem is walking long distances outside.   Going to our state fair bothered me after walking so long.          We never took a vacation this summer so trips might be a future problem.             I want to go back to Disney World and bet that would be a problem too.             
My surgeon did say that I may not improve any more than what I am now.     Time will tell.
                                                  Cheryl R

[wendysig]

Hi Karen,
Sorry to hear about your latest problems -- for some it seems the fun never ends, unfortunately.  I hope it takes years for "the other shoe to drop" as you put it.  Are you experiencing any discomfort or other problems he can treat.  Maybe just treating symptoms for now can offer you some relief.

Take care and best wishes,
Wendy

[Omaschwannoma]

Cheryl,

Just finished readng your post and boy did it make me feel better--many, many, thanks.  I did forget you are w/o two balance nerves and do well, you do get around and that's excellent news.

Yep, hope the hearing loss stays where it is for a long time. 

Dr. A said in his most recent posting (yesterday) he is not saying I will go deaf or lose my balance nerve, but need to be monitored (tried to get out of all of it as AIED and MD are progressive and decided what was the point), but Dr. A tells me "No, we need to monitor as we are not sure what is going on yet."  SIGH!   Guess the AIED and MD are "best guesses" based on my symptoms.  So I am tethered to doctors and tests--sheesh!  He's a great doctor, funny how I want to lose him!  Never want to be tethered to pharmaceuticals, OTC drives me nuts (calcium, mag, VitD, fish oil), wish I could just get up in the a.m. and have my lemon water, espresso and move on.  If I have to be tethered he's one I don't mind being connected to. 

My frustration is not having a dx, who needs it anyway--right?  If it is either one, or heaven forbid the ominous long shot of another tumor, there's not much you can do.  I will let this go as it serves no pupose for me now.  Heck, I'm not sliding off the earth today and ear pain is over, I am jogging outside no less, and in no pain.  I am thankful for today! 

[Patti UT]

Hi All,
 I have googled Tulio Syndrome and come up with Superior Canal Dehiscence Syndrome as being the same thing.   Arushi, has you doc given any indication that this could have been a caused from the surgery?  I have never gotten over the constant vertigo, feeling of stationary things moving around me and under my feet, much of which is intensified by loud noises and especially by pressure build up in my head with barometric pressure changes with storm weather.  I'm really wondering if this syndrome is a by product of the actual AN removal in the bony canal in which this syndrome is thought to originate.  Any thoughts?

patti UT

[Omaschwannoma]

Hi Patti,

Yeah, I wondered about the dehiscence on my operated side as he said my tumor destroyed alot of bone.  I wonder if I don't have a dehiscence on my good side.  Before my 2nd surgery he did suspect a dehiscence and ordered CT of the temporal bones, unfortunately the slices weren't thin enough and nothing showed. 

After the 2nd surgery the oscillopsia was gone with rehab, but it's back ever so slightly.  It doesn't make me ill like it did before, nor do I want to fall backwards. 

As for my good ear I do feel increased aural fullness, constant tinnitus, pressure fluctuations, occasionally fluttering sensations, and when I had that one-time vertigo/nausea attack there was pain in that ear.  The pain is gone, as is the severe vertigo. 

The treatment for a dehiscence would be surgery and included in that is drilling so the chances of losing hearing due to the noise of the drill would cause deafness if the dehiscence is on the good side; hence, his reluctance to treat--this is my guess anyway.  If the dehiscence is on my operated side facial nerve damage would be the outcome as it's already dehiscent and I have a slight palsy (to most undetected except for the trained eye). 

So a "wait and watch" for increase in symptoms is probably wise. 

I am using my ear plug more now when I'm outside on windy days, at the grocery store, malls, loud places to keep the vertigo at bay and this is working fine.