What have you experienced

[jinxkwb]

Hi everyone.  I'm new to this board.  I found it and I figured this was the best place to pick some brains on the subject.

About a month ago I started feeling dizzy.  Went to the Dr after it turned into constant dizziness that I could barely walk.  I also had a constant twitching on my left eye, and a feeling like my left ear had something "in it"  but my hearing didn't really feel affected.  My dr put me on antivert, antibiotics and steroids.

A few days later I didn't feel insanely dizzy anymore, but still felt off balance and dizzy at times.  I also started experiencing "pins and needles" on the left side of my face and some slight numbness, coupled with minor tinnitus.  (this seems to come and go)

Anyway, I went to see a ear nose a throat dr and they seemed to think I have BPPV.  Since then I have seen that Dr twice and have voiced my concerns that I really feel like something is inside my head.  I see them again on the 22nd, and I am planning on asking for a scan to at least give me an answer or peace of mind at least, otherwise I think I need to find a new Dr.

Have any of you ever been diagnosed with BPPV by mistake?

[volleymom]

Hi Jinx,
I think an MRI with contrast would be a good idea, I had some similar symptoms, but without the dizziness.  I ignored the symptoms for years and just told my dentist about the increasing facial numbness.  My family doctor referred me to a neurologist, who ordered the scan.
The neurologist was great, and referred me for surgery after the benign tumor was found. By the time I scheduled the surgery, one side of my tongue was pretty numb.
Almost 4 years after Retrosigmoid surgery, I am doing pretty good. Not much hearing on one side, but I am working and carrying on.
Good Luck to you!

[Derek]

Hi there...

Agree...MRI scan with contrast is the only definitive method of establishing whether or not you have an acoustic neuroma.

Best of luck and do keep us updated!

Regards

Derek

[jsanders1379]

I have an AN AND had BPPV- did your ENT do the Epley maneuver to diagnose/treat the BBPV? mine did & turns out I had the BPPV in my non-AN ear, which he got rid of by doing the Epley.  I've never heard of Bppv causing facial symptoms. I would definitely ask for an MRI. Good Luck!

[jinxkwb]

They did do the epley on me and I think they got a false positive for BPPV from that.  When they did it the first time I didn't feel any more dizzy, but my eye did dilate a bit, so I dont know for sure if it was a real positive.

  The facial numbness is sorta new, (last few weeks) and it comes and goes.  The last few days it seems to be increasing.  The first few times it was just pins and needles, now my cheek up to my eye and upper lip feel numb/cold.  I wont see the ENT until the 22nd.  Personally I'm starting to get pretty worried about having facial paralysis.  Not to mention the constant feeling of being on a boat.

My concern right now is that the ENT is dead set on BPPV, which doesnt explain my numbness.

Has anyone been prescribed something like prednisone to help shrink the tumor?  My regular Dr had put me on it when the dizziness was really bad and within a few days the dizziness was much better.

I will update once I learn more or things change.  If my face is any more numb by tomorrow I'm just going to make an ER trip and get scanned.  Forget waiting, I want answers.

I just want to move forward here and start feeling better.  Thanks for the replies, the more I learn about this hopefully the less worried I will be.

[Gearbox123]

Hi Jinx, I was told by my first E.N.T  that I had BPPV, and went to RUSK Inst in N.Y.C for Vestibular therapy, only to find out that wasn't the problem a few weeks later I  had a MRI with contrast and they found a small 3mm Tumor on my Vestibular nerve, which has caused me have a lot of problems with my balance. I think like the others that you should get a MRI , WITH CONTRAST , this way you can have peace of mind, and move on with your life. I wish all the best with your tests and results , good luck!

[jinxkwb]

Hi Jinx, I was told by my first E.N.T  that I had BPPV, and went to RUSK Inst in N.Y.C for Vestibular therapy, only to find out that wasn't the problem a few weeks later I  had a MRI with contrast and they found a small 3mm Tumor on my Vestibular nerve, which has caused me have a lot of problems with my balance. I think like the others that you should get a MRI , WITH CONTRAST , this way you can have peace of mind, and move on with your life. I wish all the best with your tests and results , good luck!

Thanks for the reply.  Sadly I'm glad to see someone else was also told they have BPPV when it was actually AN.  I hope you've had success in recovering!  Thanks again.

[hruss]

Jinx, I had similar to your symptoms regarding balance and nistagam - when my right eye (the AN side of my face) was moving right, it vibrated, rather than being steady. The only way for the doctors to figure out that I had a tumor was for me to go into the tube. I had visited a number of other specialists, but none of them believed it had a tumor, until the MRI showed a big chunk in my head.

I didn't experience anything else and had my hearing intact. Please, get an MRI for your own sake.
Also, when my tumor was discovered, I couldn't get operated on the same day. The doctors put me on steroids for 5 days because as they told me, the tumor was swollen and they needed to stabilize it first.

I look forward to hearing what the results from the MRI are.

Best of luck,
Hrissy

[jinxkwb]

Well, I had my MRI with and without contrast yesterday.  Definitely an experience.  I got a dvd copy of the results and of course I played DR and started looking at it myself.  Clearly I have no idea what I'm looking at, so I'm not about to make any assumptions of what I was looking at or anything.  The only thing I can say is that there is nothing insanely obvious in the images.

Today I'm seeing my Dr to review the results and find out what he has to say.  I don't know if anyone else who has good days and bad days, but today is one of the bad ones and I'm getting really frustrated.

Thanks for all the replies, I will update tonight most likely after I talk to the Dr.  I'm sure I will have a million questions.

[jinxkwb]

Well, the ENT looked at the MRI and said that I do not have AN.  Problem is he has no idea what's wrong and now were moving onto a Neurologist to see if they can figure it out since I have facial symptoms and dizziness still.  The ENT seems pretty confused as to what is going on at this point.

So the next step they want me to do an ENG/VNG and consult with a neurologist.  Hopefully someone can figure this out.

I just wanted to thank everyone who replied and who has read these posts.  I truly appreciate it as this whole ordeal has been very troubling for me.  Thanks again, and I will update if we ever find the cause of this, maybe it will help someone else some day.

Thanks again everyone and best of luck.

[Derek]

Jinx...

Great news for you. Hopefully it is something far less dramatic and can be easily and readily sorted.

Best Wishes

Derek

[hruss]

I am very happy to hear you have no traces of tumor, Jinx!!

I hope that the neurologist will be able to find what the reason for the facial pain is.
But it is so much easier to know that you can be cured with a pen (neurologist cure with a pen, surgeons - with a scalpel)

Best,
Hrissy