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Old 02-13-2012, 08:01 PM   #1
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SuziQ82 HB User
Patulous Eustachian Tube Dysfunction

Hello,
I am trying this route as a last resort. I've had symptoms of Patulous Eustachian Tube dysfunction since at least 1999, although I had no idea that's what it was. I actually went to an ENT for problems with dizziness, tinnitus and, what I called, noises way too loud in my head such as my voice, my breathing, chewing, heartbeat, etc. You get the idea. The doctor didn't seem to know what I was talking about but did say conclusively that I had tinnitus and, at the time, Labrynthitis. That was cleared up with medication but the symptoms of autophony persisted. And over time went from just the left ear to both ears equally bad. I have continued to go to the ENT, audiologists, and even was sent to neurologic surgeon and even heart specialist trying to figure out the source of the amplification of the noises within. Needless to say, it has been an exhausting and frustrating search. A friend of mine was diagnosed with Superior Semi-circular Canal Dihessence (?). The symptoms were very similar, so I was checked for that. I was not my case. I kept searching the net until I found Dr. DiBartolomeo's site concerning Patulous Eustachian Tube dysfunction. EVERYTHING matched. I went to links and all the symptoms were the same. Even down to the fact that it can lead to isolation and depression. After over a decade of absolute frustration, I began to see why I was feeling the way I was. I ordered PatulEND for the Ear Foundation and used it for nearly 3 months. NO improvement. I contacted Dr. DiBartolomeo for a doctor in my area and was referred to a constituent. I saw him and after noting that the PatulEND had not worked, he wanted to try putting tubes in my ears. I have read enough info to suggest that this is NOT the route to take. The doctor here suggested Dr. Poe in Boston who has a surgical procedure. I've tried contacting him, but haven't heard anything as of yet.
I'm just wondering if anyone our there has had ANY success. I read one post that said we should just learn to live with it. That is actually quite impossible as the problem worsens and as more and more activities are affected.
Sorry this is so long but I've been enduring this for over a decade and it's way past intolerable!

 
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reallyreilly (05-31-2012)
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Old 02-17-2012, 08:48 AM   #2
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dltt48 HB Userdltt48 HB Userdltt48 HB Userdltt48 HB User
Re: Patulous Eustachian Tube Dysfunction

I had the opposite problem, my tubes were shut all the time, instead of open, like yours. Dr Poe is one of only a few drs in the world who are doing a new surgery for PET. I know a few people who have apps with him in the next few months. I hear he has a long wait, but I believe it would be worth it to you. He treats all types of Eustachian tube dysfunction. I went to a dr in San Diego who works closely with dr Poe and he fixed my tubes, after yrs of pain and suffering. I agree, you cannot just, learn to live with, this kind of problem. Good luck and be positive, there are finally drs out there researching and learning more every day, to help people like us.

 
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SuziQ82 (06-04-2012)
Old 05-31-2012, 08:53 AM   #3
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Re: Patulous Eustachian Tube Dysfunction

Quote:
Originally Posted by SuziQ82 View Post
Hello,
I am trying this route as a last resort. I've had symptoms of Patulous Eustachian Tube dysfunction since at least 1999, although I had no idea that's what it was. I actually went to an ENT for problems with dizziness, tinnitus and, what I called, noises way too loud in my head such as my voice, my breathing, chewing, heartbeat, etc. You get the idea. The doctor didn't seem to know what I was talking about but did say conclusively that I had tinnitus and, at the time, Labrynthitis. That was cleared up with medication but the symptoms of autophony persisted. And over time went from just the left ear to both ears equally bad. I have continued to go to the ENT, audiologists, and even was sent to neurologic surgeon and even heart specialist trying to figure out the source of the amplification of the noises within. Needless to say, it has been an exhausting and frustrating search. A friend of mine was diagnosed with Superior Semi-circular Canal Dihessence (?). The symptoms were very similar, so I was checked for that. I was not my case. I kept searching the net until I found Dr. DiBartolomeo's site concerning Patulous Eustachian Tube dysfunction. EVERYTHING matched. I went to links and all the symptoms were the same. Even down to the fact that it can lead to isolation and depression. After over a decade of absolute frustration, I began to see why I was feeling the way I was. I ordered PatulEND for the Ear Foundation and used it for nearly 3 months. NO improvement. I contacted Dr. DiBartolomeo for a doctor in my area and was referred to a constituent. I saw him and after noting that the PatulEND had not worked, he wanted to try putting tubes in my ears. I have read enough info to suggest that this is NOT the route to take. The doctor here suggested Dr. Poe in Boston who has a surgical procedure. I've tried contacting him, but haven't heard anything as of yet.
I'm just wondering if anyone our there has had ANY success. I read one post that said we should just learn to live with it. That is actually quite impossible as the problem worsens and as more and more activities are affected.
Sorry this is so long but I've been enduring this for over a decade and it's way past intolerable!
I have also had this pulling down feeling in my right ear for the past two months. I fell and hit my head on a rock in March and this feeling started shortly after that. I've dismissed it as a side affect but some of the other symptoms that where listed like hearing my own breathing, heartbeat and voices when I play my white noise machine. I have also all my life had this nerve racking inability to sit next to anyone eating something crunchy....it is magnified and is really upseting. I have an appt this afternoon and I will have my doctor check in PET. Thank you so much for shorting my journey. It took 10 years for the medical field to diagnosis my Fibromyalgia and I certianly do not want to go through that lab rat testing again.

 
Old 05-31-2012, 06:20 PM   #4
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dltt48 HB Userdltt48 HB Userdltt48 HB Userdltt48 HB User
Re: Patulous Eustachian Tube Dysfunction

SuzyQ82, I know a few people who have seen Dr. Poe. He is known to be the best for PET. Jennifleck is on these boards, under Eustachian Tube dysfunction-you should follow her and read her story. She just got back from seeing him and was very pleased. I had the opposite problem, my tubes were stuck shut. I know the isolation and depression, but i found a dr on the west coast Dr. Brian Weeks, doing a new surgery, and it worked for me. Don't settle for the excuse "learn to live with it", I read that all over these boards and it makes me SOOOOO angry. I didn't, and I got better. It took time and some patience-but hang in there-don't give up! You just need to find the right dr. Good luck!

 
Old 06-04-2012, 12:43 PM   #5
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SuziQ82 HB User
Smile Re: Patulous Eustachian Tube Dysfunction

Thank you so much for the encouragement! I will surely continue this search until I have satisfaction! I'm glad to hear that your search and procedure were successful... Thanks again.

 
Old 12-24-2012, 03:30 PM   #6
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peter580 HB User
Re: Patulous Eustachian Tube Dysfunction

i also got this on and off and its super disturbing, I think its to do with the teeth and jaw allignment possibly malocllusion, if you have crowding (any tooth lodged within your mouth that failed to come out) or malocclusion this could be the cause, as ive had this horrible condition , and i had suspected that it could be maloclussion so i went and put braces, after 1 month the Heart beat and autophony stopped completely, am amazed and happy hope this helps

 
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