Hello! Firstly, thank you to James @turnitaround for tagging my story in this post. I haven’t been on here for a while as I am now 4 years post my last surgery at UCLH in London with the incredible Prof Saaed and am now symptom free (albeit deaf in right ear with tinnitus in that ear, but for me that was a high price well worth paying).
I haven’t read all of your thread but a lot of the symptoms you describe I had, post a car accident. The car accident part is important. I too had the full on vertigo but also that feeling of being “pushed” from the right side, moving in space etc.
Let me first say, James is spot on - MOST PLFs can heal on their own given enough time AND following the protocol. And yes, in standard PLFs drugs like Amitrip can help you function day to day. James is incredibly knowledgeable about PLFs and he kept me going during my darkest hours with it.
However, what I don’t think I ever went into on here is the fact I had a further type of PLF than just the round and oval windows. And for Doctors out there that don’t think PLFs can be SEEN or aren’t real - they absolutely CAN be seen during surgery, Prof Saeed stopped my last operation to call in his entire surgery team to take a look at the leaks in my ear, and they are therefore a very real injury.
Now back to the additional injury - THAT injury (in the words of Prof Saeed) “can only be caused by something like a car accident”, ie the whiplash. Now, unfortunately I do not remember the technical name for that injury. There are semi circular canals in the inner ear that go upwards, there was a tear in one of these (in addition to the tears in my oval and round Perilymph windows) and it was that tear rather than the windows which were causing most of the problems. In my final op, Prof Saeed patched this too.
He said that this does NOT heal on it’s own as the round and oval windows often do. Surgery would be the only option for this type of injury.
Having said all of that, I came home from that op with a list of things I am unable to do, even four years later. I am unable to bend forwards from the waist, if I need to pick up something from the floor I have to go down on my haunches, I am unable to lift anything heavier than a kettle and no straining. I am unable to raise my heart rate, so exercie is limited to walking (I was a PT before this so that is the hardest compromise for me).
The surgery has left me with a heightened sensitivity to sound (crazy when I’m now deaf in that ear but remember we take in a lot of sound through the conductivity of the bone), noise can physically hurt, like the washing machine on spin, drills etc, so I stay away from those. But mostly good ear plugs, or covering that ear with large old fashioned ear defenders can help. But I do not get vertigo any more, I do not get that nauseous feeling or feeling like I am moving in space, I can get on a plane (although I do scuba breathing on ascent and decending). I am not allowed on the underground (tube, subway) but thats ok. I have been to the theatre and cinema (with ear plug in that ear) and been fine.
I really do empathise, Prof Saeed literally saved my life as I got to the point where I could not vision even a semblance of a life living with the torture that is multiple PLFs. I really do hope you find some relief soon. One thing that helped me temporarily (6 months but that was enough for me to find UCLH in London) was botox injections just above that ear and around it. That was enough to numb the nerve to stop it sending the dizzy signals to the brain. Controversial but worked for me.
However, if they just did all those tests on you (yes I was strapped into the chair, I had hot and cold water poured into that ear whilst they watched my eye movements), it will take a while for the trauma of those to subside.
I sincerely hope you find your relief from it, keep talking to James @turnitaround he is a complete sweetheart and kept me going through 4 dire years AND he really knows his stuff about PLFs!!
Good Luck and Take care
Tx