This is the first post I’ve made here, I have to admit that because I don’t have MAV I tend not to participate too much, however because I was misdiagnosed with everything from TMJ to BPV (even a tentative MAV) prior to being sent to the fabulous team at UCLH in London, sometimes the diagnosis we’ve been given isn’t always correct so this may help some people here which is why I am posting.
Before I start I also want to thank @turnitaround (James), we’ve had a number of long private chats through here and between us we keep researching and keep updating each other and I’ve really appreciated his support.
I have a twice visualised Perilymph Fistula on the right side. UCLH have patched it twice but it’s having none of it. Before I start raving about the wonderful Professor Saeed who heads up UCLH, if you are ever sent to Mr Kahlil there (Prof Saeed recruited him), he is brilliant too. They really understand what it is like to live with the symptoms we do, which makes a refreshing change from most GP’s and even some local ENT’s.
When I went to see Prof Saeed yesterday I was practically suicidal, I’d had enough, I felt there was no help left for my condition or it’s debilitating symptoms. I had been controlling the worst of the symptoms since second repair fail with Amitrip but I became allergic and five sets of different meds later am now allergic to all of them too.
So @turnitaround , Prof Saeed said right off the bat that because it took me so long to get referred to UCLH I now have Secondary Hydrops as well as the leaking fistula - you were right. He has all my balance tests etc so his plan of attack is to do a 3rd repair himself using a different technique, one where the “glue” is adhered to the bone all around the outside of the round window not just the membrane itself.
He is hoping that if it works, the hydrops will settle as he can’t give me meds. If it doesn’t work he is doing the ablation with gentamicin (apologies for spelling). I will need physio post that as most of my right hand balance will be wiped out. If that doesn’t work then he will sever the nerve and we begin re-training my brain to use balance information only from the left side. Drastic solutions but mine are drastic times as been dealing with the PLF a long time now and it’s not healing at all on it’s own.
I mentioned to him about the diuretics post op to reduce Perilymph production to take the pressure off the leak that @turnitaround found and he is looking into it. James, you said he was the man to see and you were right. You can tell he is the boss and he is a doer like me, so I feel so much better mentally this morning that we have a plan and he promises he won’t stop until he fixes it.
So, I have everything crossed that my body doesn’t reject the 3rd patch when the op is done (waiting for confirmation but end of July/beg of August) and that finally I will be able to get back to the love of my life, fitness training. All this can’t bend, can’t raise heart rate, can’t be anywhere with noise because it all causes an attack of vertigo that lasts hours so I can’t exercise, is as mentally challenging to me as dealing with the awful symptoms.
All I can say to you is if you don’t feel you have been given the right diagnosis, please keep pestering your doctors for referrals to the right people - it took me 4 years of insisting before I finally saw the lovely Mr Kahlil at UCLH. The symptoms for menieres, MAV and PLF’s are so close please keep going until you are sure.
Thank you James for allowing me to continue on this site because I haven’t found one for PLF’s specifically (maybe you lovely MAV people could adopt us??) and for not giving up (even when I had) and for researching like mad like me. I really appreciate your messages in my darkest hours and I’m thrilled you’re running this site now.
My apologies for any grammar/spelling errors, I’ve had CSF fluid leaking into my brain for so long my brain doesn’t work as well as it used to. Good luck to everyone on here and I hope you all find some relief very soon.