constant dizziness and perilymph fistula

This might take a little bit. For 5 to 6 years now, I have had vertigo spells. They would happen about 2 to 4 times a month, last for a few minutes and then I would feel off for a day or two. They were real vertigo (room spinning) spells, and I would have to lay on my back and close my eyes to get rid of it. Accompanied with this I have had noises in my ears( ringing and crackling), neck tightening and discomfort, and also my eyes strain very easily( they get very tired, red and swollen). Although I have not expierenced any hearing loss. Over the past few months I have felt off all the time, kind of a dizzy feeling. The eye strain has gotten worse, red eyelids, sunken tired eyes(swollen muscles probably), and lots of squinting. I have had my eyes checked( perfect 20/20), I have had a brain MRI( negative),I have had a neck MRI and MRA, I have had balance testing 3 times, and hearing tests( normal). All three balance tests, I have had bilateral vestibular weakness with 25 percent worse on the right side. The first balance test, I did not test positive for perilymph fistula, 2nd test they didnt test my for fistula, and the 3rd test was positive for right side fistula. So they decided to go ahead with perilymph fistula surgery on the right side. I had local anesthetic (so  I was awake). When she was in there doing the packing of the graph, evrytime she touched anything or put pressure on anything it was setting off dizzy spells. After the surgery she said she may or may not have noticed a little dampness in there ( perilymph fluid). I was extremely dizzy when it was over. I could not move my head at all without veritgo/dizziness. That slowly got better over a week, but I still dont feel much different from the surgery. I havent had any vertigo spells, but I still feel dizzy and off. Still have eyestrain and neck discomfort. My question finally is. Do you think there is something else going on in my inner ear? The doctor said she has never seen anyone get so dizzy during the procedure. MY second question is, it has been 2 and a half weeks now since the surgery. Have I not given it enough time yet??? The doctor doesnt seem to give me any straight forward answer. I just want a second opinion on this.

[Wear/a/Jimmy]

The doctor doesn't give you straight forward answers because the balance mechanism is a big mystery...  A BIG MYSTERY.  There are many aspects/parts of the body that interact with the balance mechanisim and pin pointing which one is the cause is difficult & corrective treatment etc is a mystery too.

That said a 25% weakness in a lot of clinicst is considered normal. In others the cut off is 20%, I used 25% myself.

I would spend some time finding a clinic that specializes in only in balance, because I kid you not, your average ENT clinic is not suffecient in the balance area to take care of such matters.

I doubt it is a fistula:

http://www.balancetherapyoftexas.com/perilymph.html

Now you may want to look at this web-site:

http://www.onbalance.com/patient_info/BalanceSpecialistsDetail.aspx?id=TX

NeuroCom balance machines run on average 100K and the diagnostic studies that they do are usually not covered by insurance. Now I mention this because I do believe they are useful, but rarely are they owned by ENTs or balance practitioners. In other words, if someone is serious about balance rehab, a good indication of that is owning a NeuroCom system, despite the fact there is little to know reimbursement for the machine.

Bridget Wallace is one of the brightest I have ever met regarding balance. Another is Dr. Barrin from Ohio State Univ. He has been published many times, and acts as a consultant for several diagnostic companies in equipment design etc.

Also, please reveiw you medications you are on, or have been on. You would be surprised what is out there that can cause vestibular issues.

[SneakyJackson]

The 25 % percent is just to the rt ear. It is 25 % percent worse then the left, but there is also an overall bilateral weakness. So alltogether it is more then 25%. I am also a 27 year old male. So I dont think my vestibular function should be this bad yet. What makes me so curious is why, from the doctor pushing on my inner ear was it setting off multiple dizzy spells. They were like my normal dizzy spells but way worse over and over again in a matter of a half hour while she was in there. As for my meds, they only thing I am on is lexapro 10mg once a day(the lowest dose). I have tried coming off that and no change. I am on it because I have anxiety over the dizziness. Two other things I should mention. I had chronic sinus infections for about 4 to 5 months straight in 2000 while in my second year of college. They were due to allergies, because I am from MN and moved to San Jose California for school. I would get one sinus infection cure it with an antibiotic and then get another within a week. This last for 4 to 5 months straight, until they decided to do endscopic sinus surgery and put my on allergy shots. It helped. Also I have had two head injuries. I was drilled in the head with a softball while pitching in 2001. I had a concussion, but mild. The more important head injury was landing on my head and neck on the rt side at high speeds while snowboarding in 2002. I had ringing in my ear for about a day after and whiplash for about a week. Being younger and dumb at the time never had anything looked at. That injury and the test result is why they thought fistula. My problem is that it seems like my dizziness is becoming more of an everyday thing, and it affects how much I want to do in a day. Also my eyes get really tired all the time ( red swollen, etc...) I just want some relief.Thanks

[Nancy T]

You were awake during fistula surgery?? Brave guy. They put me out, but woke me up near the end when I started snoring, I think.

I don't think it's all that surprising that someone playing around inside your ear would cause dizziness!! That said, I did not get vertigo during the last of the surgery when I was awake, though I think that was only the last few minutes.

I was quite dizzy after the surgery, much dizzier than I had been previously, but, as in your case, it improved over a few days. However, the surgery did not help. PLF was suspected in my case because I had a sudden hearing loss and increased dizziness when I sneezed hard. But my hearing did not fluctuate one bit in the four months between sneeze and surgery (as would be typical for PLF), and I did not have the more severe dizziness that PLF patients usually have. Also I was not affected by pressure, as is typical for PLF. I drove over two mountain ranges in the three weeks following the sneezes, without any increase in symptoms.

As you no doubt know, PLF is often a controversial diagnosis. If you didn't have a significant and immediate improvement after the surgery, I believe that makes it much less likely that you actually had a PLF. It sounds like your surgeon was pretty uncertain. I think that the real test of whether PLF diagnosis was correct is to have a dramatic improvement right after surgery.

Dr. Epley believes there is an inner ear concussion syndrome--he has a Web site where you can read about it. Perhaps all that head trauma just did some kind of damage to your inner ear that wasn't necessarily a fistula. Another great site on dizziness is Dr. Timothy Hain's (much more comprehensive than Dr. Epley's, and very up to date and informative).

Perhaps when you're healed from the surgery, your doctor will send you for vestibular rehab therapy.

Presumably you have been seeing a NEURO-OTOLOGIST (also spelled neurotologist), that is, an ENT with extra training in the inner ear, hearing and balance. If not, you should. W/a/J is correct that most ENTs don't know much about it. See membership list at American Neurotology Society and also see the Vestibular Disorders Association Web site for a list of specialists (although on the latter site, at least, not all the docs are necessarily neuro-otologists; the association does not verify credentials).

Best of luck figuring it out--dizziness can be awfully hard to figure out in some cases. Vestibular therapy can often help, and finding the right medication can work wonders in some cases. Keep trying. Stay active as much as you can--that's important too.

Nancy T.

[Nancy T]

BTW, neither the NeuroCom site that W/a/J posted nor the VEDA site (Vestibular Disorders Association) has a complete list of neurotologists. Some of the most competent and respected ones aren't on those lists. I don't know about the NeuroCom site, but to be on the VEDA site, the provider has to pay the membership fee and submit their contact information--some do and some don't, and that has nothing to do with how good or well-known they are. Some doctors simply don't bother.

[Wear/a/Jimmy]

No money is required to be on the NeuroCom site, but to get on the site you have to own NeuroCom equipment. NeuroCom is without a debate the best equipment out there. Period!  Basically it is NeuroCom & enough said from that point on. I should know, A) I am a doctorate level Audiologist B) My company sells NeuroCom & other brands too.

The OP is placing way too much emphassis on an ENG study. I have no doubts that an ENG study could be done the next day and there would be different results...  I should know A) I am a doctorate level Audiologist, B) My company sells ENG equipment, C) In my day I have done well over a 1000 ENG studies.

ENG studies are crude at best, interpreting the results are liken to reading tea leaves, or cards. The actuall hit rate for ENG studies is around 40%. Which means I could toss a coin and have better results! Sad, but true. Even if a person tests normal, that does not mean the intire vestibular or balance system is functioning normally. That is because the study does not really test the complete system. Then you have practitioner issues, who performed the test, what equipment was used, was the patient on any medications at the time of testing, was calibration re-done between each test session (considered necessary, but rarely done)?  In a nut shell, I have little faith in ENG studies, and I dispise them. But they do serve some purpose, when you use the cross checking principle, case history etc, their results can (at times) be helpful in forming a diagnoses.

[SneakyJackson]

Do you know of any places in MN that have neurocom equipment???
Also how does Neurocom equipment work? Why is it so much better then normal ENG testing??

Thanks  Justin

[Wear/a/Jimmy]

ENG testing is limited in that it tests the horizontal semi circular canal and to a limited extent the visual input mechanism of the balance system. NeuroCom equipment can test the somatasensory input into the system & visual input. It has a portion called Dynamic testing, where the one stands on a plat form, and the plat form moves, ofcourse the patient moves in order to adjust their balance, the equipment measures the amount of movement & compares the amount of movement/adjustment to normative data.  

This is just basic information, and to be honest it would take even scratch the surface of NeroCom equipment. But the test data recieved should also be used much like ENG data, collected reviewed, crossed checked with other test data, including ENG & case history to establish a diagnossis.

I know of no one in MN with a NeuroCom machine. I no longer live in the states, so it is not that easy for me to get on a phone and find an answer to your question.

Sorry,