I am suspecting that I may have Perilymph Fistula....very similar symptoms to Meniere's but cause by trauma-induced leakage of the inner ear. Any information in regards to diagnosis, treatment, prognosis, would be great. thanks.
There's a book called 'Finding Balance' by Sue Hickey, who from memory had this. If you live in Australia, you're welcome to my copy...ironically I came across it just this afternoon!
I know I mentioned it before but I have a SCD and suffer the same pressure, pain and loss of hearing issues that you have. I wear EarPlanes to help reduce these symptoms. I don't take any medicine but others do take a decongestant. I just finished 6 flights with a total of 48 hours in the sky and I did so successfully with only using the EarPlanes. I still had those symptoms but at a tolerable level. I also had Ativan with me in case of an attack with such long flights. I didn't need it.
Hi bubbagump, I was diagnosed with Meniere's in my left ear in 1970. That ear basically crashed in three years. In the early 1980s I developed Atypical Meniere's in my right ear that gradually progressed to full Meniere's over several years. In the early 1990s the vertigo took a sudden turn for the worst. The vertigo was resistant to ever increasing medications so they did balance testing. Balance testing suggested the possibility of a perilymphatic fistula (PLF). I had a right middle ear exploration done and they found and patched three PLFs. I immediately felt 100% better and did well for several months, but then the severe vertigo returned. They did a second middle ear exploration and found one of the patches had blown. They repaired it and I have been vertigo free ever since. It is my understanding that PLFs can lead to very rapid hearing loss. Flying may aggravate a PLF, but I was flown from Anchorage, Alaska to San Antonio, Texas for the middle ear exploration twice without any problems. Here is a link to a good reference article for you. http://vestibular.org/perilymph-fistula Best regards, Jim
Thanks...that's good to know. But even with EarPlanes you still have some issues right? How do those things work anyway, is it possible to avoid that kind of pressure by just plugs? On long flights you can just plug up before descent, or all throughout as well? My concern is that SCD like Meniere's there's no wound/tear, so in the long run pressure doesn't make it worse. Whereas for PLF because there's a tear, going on a plane might make the tear much worse.
this is very interesting...can you elaborate on how/why your left ear "crashed"? Even with Meniere's your ear will work or at least have some functionality for many ears or even decades right? as for your right ear, so it was completely misdiagnosed right? It's only PLF but they said it's Meniere's? I am not sure about "rapid" hearing loss but I do have fluctuating hearing loss. Flying seems to make it worse, and probably started the whole thing. Valsalva maneuver made me dizzy. Lifting weights sometimes make me dizzy. My eustachian tube has been blocked ever since symptoms started.
You are correct ... still feel it but to a much lesser degree. I'm still functional. I found this to explain how they work: How do EarPlanes work? Answer: Ear DiagramEarPlanes consist of two elements: a hypoallergenic silicone ear plug and a ceramic pressure regulator. The silicone earplug has four circumferential rings which provide an airtight seal between the product and ear canal. The ceramic element is a controlled porosity filter, one end of which is exposed to the external cabin pressure, with the opposite end exposed to the sealed chamber formed when the ear plug is inserted in the ear. Thus, as the cabin air pressure changes, a pressure differential is created across the ceramic filter, thereby causing air to flow through the filter. The filter acts as an impedance to the flow of air into and out of the ear canal. Discomfort is caused by blockage and/or swelling of a passengers Eustachian tube(s). The air pressure changes induced by the aircraft's descent are too rapid for the blocked Eustachian tubes to adjust properly. However, EarPlanes, provide an equal but opposite impedance on the exterior of the middle ear, allowing relief. Discomfort is reduced because the air pressure difference on the exterior and interior of the middle ear is lessened allowing the Eustachian tubes to function more normally.
I'm not sure if you have this right. SCD is not anything like Meniere's except that it shares some of the same symptoms. A SCD is a hole or thinning of the temperal bone above the superior canal of the inner ear. It creates a third opening to the brain where normal people only have 2. This extra opening creates havoc with the brain as the signals/pressure coming through that openingare confusing to the brain. The hole or thinning can be seen on a high resolution CT scan. Pressure, whether in an airplane or a weather system, makes it much worse. Hope this helps
Bubbagump ... I'm not saying you have a SCD, just trying to calm your fear of flying because of the problems and point out things that may work for you I have a son and a daughter. My son has the same problems when flying with pressure and deafness whereas my daughter doesn't. Did he inherit some defect in his ear from me? Maybe. He now wears the EarPlanes when flying and they help him.
I don't think you get what I am saying. I know what SCD is, SCD is like Meniere's in that there is no wound. The actual cause of the SCD and Meniere's is not affected by a wound. The thinning bone is not going to thin quicker or break if you get on a plane. As with Meniere's, the fluid imbalance in your inner ear organs is not going to get much worse on a plane. So, that means in the long run, going on an airplane is not going to be make your conditions much worse. You may feel temporary symptoms, but it's not going to make it permanently worse since the underlying cause is something else. PLF, on the other hand is an actual wound. Which means any pressure on the wound should by logic make the tear worse or prevent it from healing. Scuba divers get it all the time and they are grounded from flying by their doctors (whether or not they listen is another story). Meniere's and SCD patients are generally not grounded by their doctors.
not yet...i don't think there's a test for it. the only way is to do surgery to look for a fistula and even then it's not accurate because it can be too small to see.
Hi bubbagump, My ENT thinks I probably had a PLF in my left ear too and that is why it crashed so fast. I was an Air Force pilot and road the altitude chamber multiple times. My PLFs were probably caused by barotrauma. No my right ear wasn't misdiagnosed. I initially had Atypical Menieres which became full blown Menieres over several years. The PLF symptoms occurred almost ten years later. Jim
It is my understanding that anything that causes increased or rapidly changing pressure on the middle ear can cause a PLF. After my PLF repair I was advised to never scuba dive or sky dive. I think Menieres can also cause PLFs. Jim
Thanks Jim. My doc says that mine is not fistula because the vertigo did not hit until the next day, after I woke up from bed. She said with fistula it is supposed to hit immediately upon trauma. She says what I have is pressure-sensitive Meniere's. Would love to get your thoughts.
