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PLF.. Finally got a diagnosis... few questions.

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Old 12-30-2011, 12:11 PM   #1
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Join Date: Jan 2011
Location: New London, CT
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sukanya HB Usersukanya HB User
PLF.. Finally got a diagnosis... few questions.

Hello! I haven't posted on this board in almost a year. Let me give a quick background:

Woke up November 2010 with the whole world spinning after a cold/sinus infection, went to ENT who dx with vestibular neuritis. After VN I got BPPV a few times. Started to feel good in May 2011. Then in July 2011 I started feeling very off balance again with headaches. My ENT was a moron so I just went to a GP who dx with migraine associated vertigo. Was put on Propranolol (only 40mg) and never really got better. Some days I've been 100%, others not so much. I've NEVER had any spinning vertigo aside from the BPPV and when I woke up from the VN. No hearing loss either. My only symptoms are feeling off balance (esp in grocery stores etc), motion sickness in the car (sometimes), and tinnitus

In November, I finally got an appt with a neuro-otologist, Dr. Lehrer in Teaneck, NJ. He was great, almost taking 3 hours with me on my first visit. I did the balance (romberg) testing as well as all the hearing stuff. He didn't believe I have migrainous vertigo. He think it had something to do with too much fluid in my endolymphatic sac OR in my perilymph He had me come back yesterday for the glycerin test.

I did the glycerin test and I got better with it in my system than without (less swaying on balance tests). He said this indicated that there is a leak in the perilymph. He dx'd me with perilymph fistula, in both my ears. He gave me a diuretic and he said my only other option is surgery. I am going to see him again in February.

I thought this was strange cos I read that PLF is rare in both ears. What's stranger is that I've NEVER had any head or ear trauma. No car accidents and I never played sports. I've never gone scuba diving, only snorkeling, over 2 years ago, and never had any ear issues from it. I fly all the time, and this past time (over thanksgiving), I didn't even use "ear plane" ear plugs and I felt fine. Got the usual ear clogging that even my husband felt upon descent. Most of my "dizzies" with flying come from walking around the actual airport. However, as the PLF symptoms do describe, I do feel worse with more activity, which is only then relieved by rest. But that's only sometimes.. ie: Some days I can marathon shop at the mall and feel perfectly fine. Other days, I have trouble working around the house.

While I was doing my glycerin test I snuck a peak at my chart and my visit notes from my very first visit, which included all those testing results. I was wondering if someone out there could help me with the technical terms for the audiometry portion:

Exam showed slight shakiness on the romberg and shakiness on the quix with a sway to the right. There was no spontaneous or positional nystagmus, but she tilts back on the quix after the positional testing.

The CAE shows a slight drop at 6k in both ears with some asymmetry on the BSAS on the right. There was positive fistula testing in both ears, more so on the left. She will return for a glycerin test

I know that the 1st paragraph is those balance tests and I understand that. Was wondering if someone could explain what the second paragraph meant. I'm a bit confused because in the office when he showed me my hearing test chart he said I had the hearing of a 16 year old! (I am 26).

Anyone else out there have PLF with no head trauma or hearing issues? It's funny cos I thought I'd be soooo relieved to have a diagnosis after so much suffering.. Instead I am left more confused than I was before

Last edited by sukanya; 12-30-2011 at 12:18 PM.

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