Here’s a post from the not-so-friendly Healthboards (has anyone here dealt with their mods? AWFUL)
This woman, like me, injured her ear, in her case when diving into water and ended up with MAV-like Hydrops post PLF complaint for which she never got patched.
Here’s her summary after 2 years:
"Re: Perilymph Fistula Sufferers? (and the joys of BPPV)
yes- many people tried to write it off as anxiety for me too. i am lucky in a way that this all started after diving into water… so i knew i couldn’t develop an anxiety disorder from swimming!
i’m pretty sure i have the same thing but i haven’t had too much show up on tests. i’m sure the testing i have doesn’t compare with what u have had. i did see an ent in NJ who is quite versed on PLFs… he gave me a PLF diagnosis but as soon as i come back to canada most doctors say ‘you don’t have that’ ‘if you did, it would have healed’ etc… etc…
i was told i have meinere’s as i have symptoms like meinere’s but i’ve noticed they worsen with activity… everytime i pick something up, sneeze, yawn etc…
i’ve had almost 2 years of this to notice all the small things… my symptoms fluctuate so i have better moments and worse moments.
the best i can describe this as it’s like a storm cloud following you around… you just feel ‘off’ 24/7. anxiety is heightened, fatigue, vision or concentration seems to be affected… i get obvious dizzy moments but i also get times when i just feel that something is wrong and it’s hard to tell i’m dizzy.
i’m still not too sure about my diagnosis and i’d like some more tests if possible. i believe i am also losing CSF so this might complicate things… when my symptoms continue for a while they can get more neurolgocial.
so far, i’ve had head scans, ear CTs etc… nothing seems to have come up."
she seems to do better after 3/4 years btw, the leak ended up subsiding. I’ve tried to contact her for an update, but she seems to have left that board many years ago.
Her last useful update is some 5 years after her initial injury:
“well- i did but the dumbass dr. i saw locally (i’m in canada) didn’t patch me… long story as he basically screwed up. i didn’t bother with it again since i thought just the op could help in wound healing… which it did. i was consulting with a specialist in Lousiana who I was going to get the surgery thru… he’s well versed on PLFs and fixes many, many of those who were failed by other doctors or who didn’t know what was wrong. but i became pregnant with our 3 child and luckily the pregnancy helped fix things… i’m not 100% but much better these day… hoping it sticks! if not, i am still ready to see the specialist there… there is no way i can go back and live with what i had again… it’s terrible and i never want to be so debilitated again.”
Hope this is useful to anyone who suspects a physical inner ear injury. Having done a lot of research, personal accounts of injuries like this are like fairy-gold-dust on the internet.
Basically, it shows that you can make huge progress towards recovery without surgery, but you have to be incredibly patient.