← Return to What can be done to help with hyperacusis?
DiscussionWhat can be done to help with hyperacusis?
Hearing Loss | Last Active: Sep 8 6:30am | Replies (106)Comment receiving replies
Replies to "Hi to all! Forgive my long post but I wanted to share my experience to see..."
Shelby2019 I must reply to you and hope this isn't too long. Rarely do I ever hear about spinal fluid leaks because my experience over a long period of time is that so few ENTs know what to do with spinal fluid leaks that I will say there aren't any. First I have questions. Has an ENT told you that you currently have fluid in either ear? Has your hearing diminished? Have you had an audiogram? Our experiences are not exactly the same but we certainly have similarities. When you said that multiple ENTs were puzzled I knew I had to respond to you.For over 50 years I had been to 16 doctors in 6 states who all treated me for fluid in my right ear. I have had over 40 myringotomies with ventilation tubes plus three other major procedures. My ENT sent me to a neuro-otologist for BAHA evaluation and he took one look in my ear and immediately told me I had spinal fluid leaks. Yes, leaks in my right ear not my head, not my spinal column, but my right ear. It was decided the condition was a birth injury. I had a right inner ear nerve section in 1992 and developed a waterfall of spinal fluid in my head and since that time I have a CSF Shunt in my head. After the shunt I still needed the tubes in my ears because although I did not know it nor my doctor I still had spinal fluid leaks. The neuro-otologist BAHA evaluation and his " leak revelation" resulted in surgery two months later and my "ear hero" closed off 12-13 leaks and permanently closed my Eustachian tube. Is it possible to get to your spinal fluid with a q-tip? It doesn't seem likely unless the leak is closer to your ear. I will tell you this less than a month before I had the leak surgery the fluid was coming out my ear and down my cheek. I was stopped at a traffic signal and had to take my ha out and blow the fluid through it. What a pleasant thought! Hyperacusis, single tone tinnitus, pulsatile tinnitus, and Meniere's are mine also. How to find a doctor who will help? I don't know. I struck out 16 times. After the fact I would recommend a neuro-otologist who has experience in ID ing and treating what I have just described perhaps at a sizeable teaching hospital. I went to Mayo in MN a long time ago and can only imagine the progress they have made since. I was given good advise. It takes awhile to tell it and I pray you find the resulting answers and it won't take as long as it did me. I hope this has been understandable and helpful.