I have lost the hearing in my right ear and had tinnitus before the deafness hardly started. I am of the opinion that the hearing loss and tinnitus are related to the Sjogrens. I lost my hearing in 1997 and it got very bad over the next couple of years. I was seen by the ENT I have now--20 years with him already and we haven't killed each other yet---his ENT father and he assessed me and did some testing that I don't even remember. I was then scheduled for a Right labyrinthectomy and nerve section. This is a pretty dramatic surgery where doc goes in and removes all the hearing apparatus in the ear plus the mastoid bone on the right side. He then went up and with a diamond tipped drill he destroyed the hearing nerve at the base of my brain to the right ear. He studied in Europe and is also a base ofd the brain specialist who does surgeries on some ENT issues and also works with neurologists on heavy duty brain surgery.
The reason for the surgery was to destroy all the parts of hearing that could pick up any sounds that I couldn't even hear plus the nerves that would precipitate the tinnitus. It did not remove the tinnitus and it is with me all the time. However, it did knock it down a notch so that it doesn't drive me as crazy. I had the surgery 18 years ago. It is a rugged sugary and it also destroys 50% of ones balance. I had to go to rehab to learn exercises that would help with my balance. Basically didn't walk so hot for a while and couldn't drive for several months.
Since then I have learned that they have some type of hearing device that one can place in the ear that makes a white noise and this is supposed to over ride the tinnitus. I guess Kenny Rogers, the singer, had these in both ears because his tinnitus was so bad. The Sjogrens affected the central nervous system and this can cause the deafness and the tinnitus. I don't know if you are losing your hearing but that can occur with the Sjogrens. I just had IV soul medrol, 1000 mgm once a month for 5 months, in the hopes that it would halt the hearing loss that has started in my left ear.
I don't know if the soul medrol will help the tinnitus, it didn't touch mine. Right now I am going through a louder period with my tinnitus. It tends to be bad and then better and I swear some of it is related to the amount of rest that I get and also how I feel physically. I still have some balance issues but I have 3 different causes of the balance issues so it is hard to sort it out. I hope you can find a specialist who can help you with this. I would not recommend that people rush into the surgery like I had because not everyone does as well as I do with the balance issues. Good luck.Irish