I havent posted on here in a longtime but I do come through once in awhile and read the posts. The last time I posted I was in the process of being diagnosed with either MAV, PLF or SCDS.
I am 4 weeks post op now from a PLF and SCDS repair on my right ear and Im a 75% symptom free and feeling human again!! Of course ear surgery bring its own new “symptoms” so Im hoping things get even better as I reach the 6 week and 3 month recovery stages.
It was a very hard road to get to these diagnosis… I saw 9 doctors in 2 states over the course of almost a year. When I returned to the States a month after my symptoms started I was repeatedly told I had VN after 3 months went by and I didnt get better only worse then the doctors kept saying it might MAV or Mdds. I just knew it wasnt right especially when all the preventive’s were making me feel worse and couple of these meds I had been on years ago for another issue. I always knew I had a PLF but finding a doctor who believes in PLF’s can be damn near impossible. Finally, after seeing a doctor who specializes in PLF’s, I redid my VEMP test and it was positive for Superior Canal Dehiscense but he also said abnormal VEMP test can be positive for PLF’s as well. I had my CT re done but they couldnt see a hole in the bone just a “severely” thin right canal. Now I was in between 2 doctors one thought its just a PLF and the other thought its SCDS… I decided to go ahead with the SCDS repair and asked the doctor to patch the round and oval window also, he agreed he would. When he got in there he was able to visualize a tear in my oval window. He was glad I insisted on the PLF repair too!!
My surgery for the SCDS was a Transmastoid Resurfacing. Eventhough I didnt have a hole sometimes the bone can become so thin that its not functional anymore. There are few doctors that are knowledgable about SCDS and few that believe thin canals can cause SCDS symptoms. I look back now at how many Neurotologists looked at my CT scan and never even noticed how thin the canal was or asked me to repeat the scan because there are very special parameters for a SCDS temporal bone scan.
Of course I wonder if it was really just the PLF… who knows. I am 75% dizzy/vertigo/rocking free, no nauseau, no headaches, no more skakiness/inner vibration, no oscillopsia, brain fog is 50% better. I still have pulsatile tinnitus and regular tinnitus but it is probably from the packing in my ear.
Im not writing this post to discourage anyone that they dont have MAV. I 100% believe its real and a horrible condition to suffer from. This just my story and I want to share with anyone who might be suffering for years and not responding to MAV treatments. I had to do a lot of my own research and force doctors to listen to me but in the end Im glad I pushed.
Take care everyone!!