Patulous Eustachian Tubes?

[Kris4444]

I can't win for losing lately. Does anyone else have this problem? Has anything helped you?

Here is a brief summary:

In October I had a bunch of fluid come out of my right nostril upon bending over and my left ear immediately filled up. I worried about a CSF leak so I went to the ER where they did a CT scan and found fluid in the mastoid sinuses on the left side. They prescribed nasal spray and sent me on my way.

I went to Mayo in January and saw an ENT because I was still having a hard time hearing out of that ear (very stuffy, can hear myself talk and breathe, not to mention that high pitched noises made my eardrum pound).

They did an MRI and they too saw fluid in the mastoid sinuses on the left side. The ENT did endoscopy of the sinuses and didn't see anything exciting. He said not to worry about the fluid, keep using the nasal sprays.

It is now 8 MONTHS later and nothing has changed. In fact now I have pain in my right jaw area and I am extremely sensitive to high pitched noises, I want to hurt Celine, Mariah and small laughing children . I am literally feeling like I'm going to go nuts hearing my own voice and breathing.

Today I saw the ENT who performed my sinus surgery in 2000. I had seen him right after Mayo as well. He looked at the CD from the ER and said he does not see any fluid in the mastoid sinus. I told him that I was SHOWN the fluid at Mayo on both the original CD and the MRI from Mayo. He read the report from Mayo and said that he would need to see the actual images but that "radiologist often say things in reports that aren't actually the case" I told him that I was pretty confident that Mayo has excellent radiologists and their MRI report reflected exactly what the ER's CD did.

He examined me and did a test where he looked down my ear as I panted and then plugged my nose and bared down to make my ears pop. Sure enough he said, the eustachian tubes are stuck open. It's called Patulous Eustachian Tube Disorder.

I asked what he could do to fix this. He said it often resolves on it's own. I asked him about my issues with connective tissue diseases and EDS. He said that it's very possible that my connective tissue which is supporting the eustachian tube by helping it close is weak and has loosened to the point where it no longer can close the tube.

Is there surgery that can repair this or can you suture it closed I asked??? No he said.....hmmm. That is not what the internet says.

I asked for a second opinion. He said he wanted the MRI images from Mayo but gave me a colleagues information who is strictly an EAR doctor. He sent me away with yet another nasal spray.

Over the past few months I have gotten so many new diagnosis'. None of them have any hope at the end, no help, just learn to deal with it. I CANNOT deal with THIS. I refuse to walk around like this forever. I also have 5% hearing loss! I am 41 years old! What will it be like at 60?

Thanks for letting me vent. I don't know where else to go or who to talk to. I will call the doctor at Mayo tomorrow and have sent an email to my EDS doc to see if he has an ENT that he refers his patients to. Hopefully one of them will have some answers. I would have surgery tomorrow if there was even a slight chance that it will make this stop.