Patulous Eustachian Tube vs. ETD

Hi! I know how frustrated this situation can be, especially since it seems that there is no cure! I have been diagnosed with ETD, and my ENT told me that my Eustachian Tube was Patulous, which he described as meaning "floppy." I too felt frustrated and like there was no cure, but after a hearing test and a pressure test in my ears it was clear I personally needed to get Pressure Equlizer tubes in my ears. I got tubes in my ears in June of 2018, and although it is not a 100% cure and my first week of healing was absoulte HELL (only in my right ear though, which is my ear that is more affected.) I will have a check up soon in a few months on the tubes in my ears, but truly this feels like the best thing I could have done for myself. I would suggest you revisit the ideas of tubes, because they truly have changed my life. The great thing is, if they don't work-- they can take them out! I wish you nothing but the best, I know how hard this is!!

I have ETD not patulous though, but during my search of youtube I observed a couple videos on the patulous ETD I suggest searching youtube for ETD or just patulous .

One lady described her therapy and stated it

works for her. ETD is confounding and just when I think I am cured it comes back. Some days I perform a sinus rinse and like yesterday I used every therapy I know. I would suggest reading my prior posts but they are not applicable in your case. There is a therapy out there that will work, the one I mentioned uses a strong salt slurry. The ear is one region of the anatomy that can be troublesome with few remedies and cures seem unattainable. You are not alone in your discomfort. Keep at it.

Hello CrazyOverCats

By the way, me too (re the cats). I am writing to tell you (since you asked) that I have been officially diagnosed with Patulous Eustachian Tube. It was a long and trying process and took two years even though I knew what was wrong. After two incorrect diagnoses I found an audiology centre which did a correct testing procedure for Patulous Euscachian Tube. The audiologist said they had never been asked to do this test before and she practised on people in her clinic before my visit. The test was conclusive. Two ENTs I saw after this confirmed the diagnosis which has never been described to me as 'floppy'. I understand the tube to be stuck in the open position (only my left is affected). The first of the two 'good' ENTs was not able to see the eardrum moving with breathing but the second could and I understood that there is a correct breathing procedure that has to be done to be able to see this. I do not think yours is patulous. You would have the autophony, hearing your own voice distorted, hearing your eating sounds (which then, but only then, makes it harder to hear conversation) and hearing your own breathing. I do not hear my heartbeat. There is an ear fullness associated with this caused by the pressure of the air coming through the tube but no head pressure or muffled hearing. My symptoms go away when I am lying down and I can press a point on my neck for brief relief. In both cases it is venous congestion that closes the tube. I do not know what caused this and the constant autophony hit suddenly one weekend four years ago and has never improved. I was told there is nothing that can be done so, as with all the other health problems I have, I live with it but it isn't living, it is just existing, miserably, from one day to the next. I feel for you. You have been through so much and tried so hard to help yourself. I do hope you can find somebody who can help you.

With best wishes, Maureen

My Mum has a very similar situation and a doctor in Texas operated - and was supported by Dr Poe.

its an awful condition.

get in touch if you'd like his details and ill get them for you.

mum flew from Ireland to see him earlier this year

I Am following as I can definitely relate with some of your symptoms. Back in March I developed a middle ear infection. Since then I have had constant ear fullness and slight tinnitus. I have been to two ENT doctors. The first one suspects hydrops or Ménière’s disease. He did a hearing test and said it was normal which was a little confusing to him because usually there is low frequency hearing loss with Menieres The one that I went to yesterday says it is a coin toss as to whether I have Ménière’s or a patulous eustachian tube. He did a more extensive hearing test and it showed that I do have a low frequency hearing loss which is suggestive of Ménière’s disease. Has anyone mentioned that to you ? I have ordered the drops and I am anxiously awaiting to try them. I surely hate to hear they didn't help you. I am seeing a neurotologist on July 3. Please keep this thread going. Like you, I do not hear my heartbeat or breathing in my ear. When the ENT asked me yesterday which ear did my voice seem louder, I did notice it was my left ear, the one that I Have this awful fullness in. He immediately said autophony. I live outside of Augusta, Ga so we aren't to far away. I will add that I am clenching my jaw, and my first ENT wants me to see a specialist for TMJ. I also have had neck issues for 30+ years. PLEASE keep us informed of your progress

Hi....I am so happy that I saw your stream of posts on here, although I am sorry that you are suffering. I am trying to find the same answers to a similar ailment....:((

I had a very difficult surgery (complete pancreatectomy with islet cell transplant) six months ago. My head never felt great during recovery (foggy head, etc...) but I had a tough surgery and it took 7 hours to recover from a 12 hr surgery and I almost died twice. The surgery was a success, but in June I had a small cold that lasted three days. I had a sudden onset of Vertigo and after a week, my primary sent me to PT where they did the manuveur which made that stop. However, right sided head pressure and headaches ensued.

Neurologist did a brain MRI and CT, all normal. He told me to stop the migraine meds my primary temporarily put me on and put me on a week of steroids, low dose. That helped the headaches, however, suddenly MY EARS FELT WEIRD. I do not really hear my own voice or breathing, but there is pressure and I feel like hearing is muffled with a bit of tinnitus in the right ear.

I saw the PA at the ENT office (who is pretty sharp) and she noticed 1: my TMJs were a bit inflamed (she felt from having my mouth propped open from surgery and recovery for 17 hours) 2. Thought it might be my eustachian tube because I lost more than 23 lbs in 3 weeks in recovery

She had me come back for a hearing test...... 1. hearing speech was normal 2. hearing loss in the higher range (moderate severe in both ears) and checked the eustachian tube (didn't tell me to breathe any special way while looking in there though) and said although the air pressure test they did was normal, it could be the pastuous eustachian tube which "is difficult to treat." They left the choice for hearing aids up to me......

Sooooo......she said we could try steroids for two weeks, but five days in, they have done nothing to help.

I do NOT hear my own breathing or voice very much, but I am a music teacher and it is tough to sing because I can't hear clearly. Being around a lot of people who are talking (meeting, restaurant, etc...dishes clanging, students all speaking loudly) make me wince and cover my ears and desire to run out of the room.

I just don't know what to do................I was totally normal before this surgery in terms of hearing, head, ears, etc....and I am a music teacher:( I will see if there is a neurotologist near me and consult one, but it seems that it may not help.

BTW, there is another woman I know who started with headaches five months post surgery like me....went to ENT and had to get hearing aids due to hearing loss but the tinnitus remains.

Very tough to figure out. Thank you for hearing me out....if you have any luck, please let me know. I already went through four years of chronic pancreas pain to find my great surgeon and I am a bit worn out. I hate the thought of living the rest of my life with this feeling:(( Jolie

Wow! You have been through a lot . I think your PA was right in the possibilities, but I would recommend seeing a Neurotologist . With the loss of weight, that might affect your Eustachian tube and cause some of your symptoms. What area of the country do you live in?