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Old 11-06-2009, 01:06 AM   #1
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Jeninportland HB User
Looking for advice on latest surgery options for Patulous Eustachian Tube

Hi everyone,

I am in Oregon and since June of this year have been experiencing PET symptoms. My ENT thinks that is what I have and prescribed SSKI-potassium Iodine for 3 mos to see if condition improves. Been on for over 2 mos with no improvement.

I have been searching for answers to this dreadful condition and have seen several of the postings that have provided some useful info. I wonder if I might get a reply from someone who has had sucessful outcome from surgery with the catheter procedure. I know Dr. Poe has been highly recommended but when calling his office 2 mos ago he was either leaving for sebatical or not seeing new patients at that time. Another doc in Boston who was trained under Dr. Poe would be willing to see me but he mentioned doing a graft surgery. I am not too crazy about that procedure and others have mentioned the catheter one has better results for most.
ANYONE>>>>please help!!!
This condition is quite life changing to say the least

 
Old 12-01-2009, 09:35 AM   #2
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ALC2009 HB User
Re: Looking for advise on latest surgery options for Patulous Eustachian Tube

Hello,

I'm also very interested in which surgical options for PET seem to be the most successful. Looking back through the postings over the past 5 years, it seems like the treatments are evolving toward favoring the catheter over the cartilage graft.

For me, this started in January 09. I took a short plane flight with a cold and on the descent had a lot of pain in my right ear. I used a bunch of Afrin to try to make the swelling and pain go away and I wonder if that might have triggered something. But I was also going through a stressful time and had lost 5lbs. over the previous year. Also, during this time, I stopped taking the pill and started again. I guess this may also be related. Seems like I unwittingly had the perfect combination of circumstances for PET.

I had intermittent autophony until my ENT tried a myringotomy a month ago. Now I have constant, maddening autophony. I think it must be related to the trauma to the eardrum. I've read about the Shea clinic version of the catheter surgery, but I believe this goes through the eardrum and I absolutely refuse to have anything else done to my eardrum at this point. It seems promising that Dr. Poe will do the catheter through the throat, but I guess the trick is to schedule some time with him. Not sure I can deal with another 6+ months of this!

Have either of you tried the Premarin or PatulEND nose drops? I'm hoping to try these once my eardrum heals.

Good luck,
Allison

 
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Old 12-15-2009, 07:43 PM   #3
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Jeninportland HB User
Re: Looking for advise on latest surgery options for Patulous Eustachian Tube

Quote:
Originally Posted by ALC2009 View Post
Hello,

I'm also very interested in which surgical options for PET seem to be the most successful. Looking back through the postings over the past 5 years, it seems like the treatments are evolving toward favoring the catheter over the cartilage graft.

For me, this started in January 09. I took a short plane flight with a cold and on the descent had a lot of pain in my right ear. I used a bunch of Afrin to try to make the swelling and pain go away and I wonder if that might have triggered something. But I was also going through a stressful time and had lost 5lbs. over the previous year. Also, during this time, I stopped taking the pill and started again. I guess this may also be related. Seems like I unwittingly had the perfect combination of circumstances for PET.

I had intermittent autophony until my ENT tried a myringotomy a month ago. Now I have constant, maddening autophony. I think it must be related to the trauma to the eardrum. I've read about the Shea clinic version of the catheter surgery, but I believe this goes through the eardrum and I absolutely refuse to have anything else done to my eardrum at this point. It seems promising that Dr. Poe will do the catheter through the throat, but I guess the trick is to schedule some time with him. Not sure I can deal with another 6+ months of this!

Have either of you tried the Premarin or PatulEND nose drops? I'm hoping to try these once my eardrum heals.

Good luck,
Allison

Hi,

I wonder how you are doing? I just got back online from moving and having a down computer. To answer your question, I have NOT tried either of the drops. I am open to the premarin ones but am hesitant to taking the PATULEND as I have read they are very difficult to administer. I posted a reply on this thread as to what I have tried. I am going to rule out Superior Semi Circular Canal Disorder and then if that comes back negative will have a CAT scan of e-tubes to see if patulous. I am not certain I have PET but it is most likely what I have based on my symptoms.

I hope you have improved.
Jen

 
Old 10-08-2010, 04:05 PM   #4
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KimberlyJames11 HB User
Re: Looking for advice on latest surgery options for Patulous Eustachian Tube

I completely agree that living with this condition is life changing. I know the doctor you're talking about up in Boston. My doctor told me that very few people get relief from these catheters and that one guy coughed them up (they fell out of his e-tubes).

Currently I am on Premarin. No relief but I have an appointment in about a month. Nothing else has worked so I'm opting for surgery.

The surgery involves closing my e-tubes to simulate closed e-tubes found in normal eustachian tube dysfunction and then put ear tubes in.

 
Old 10-08-2010, 10:57 PM   #5
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ALC2009 HB User
Re: Looking for advice on latest surgery options for Patulous Eustachian Tube

I'm subscribed to this thread, but I haven't posted here in a while. Last year, I went through a long journey trying to figure out the source of my autophony problem. After many frustrating months of being told I had a Patulous Eustachian Tube, I decided to rule out the other primary cause of autophony -- Superior Semicircular Canal Dehiscence -- before going forward with surgery.

In the end -- although I never had big problems with dizziness -- a CT scan showed that I did have SSCD. I had surgery to repair this problem earlier this year (a middle fossa craniotomy to resurface the dehiscent canal), which solved the problems I was having. Now I'm back to normal and feeling extremely relieved and grateful.

I'd strongly encourage anyone struggling with PET to consider getting a CT scan to rule out SSCD before going forward with other treatments. Also, you might want to look up the online support group for SSCD. (I'm not sure I can post the URL here.)

Good luck with everything!

 
Old 02-23-2011, 11:03 AM   #6
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winterj HB User
Re: Looking for advise on latest surgery options for Patulous Eustachian Tube

I thought Premarin and Patul-End were administered the same way?

Quote:
Originally Posted by Jeninportland View Post
Hi,

I wonder how you are doing? I just got back online from moving and having a down computer. To answer your question, I have NOT tried either of the drops. I am open to the premarin ones but am hesitant to taking the PATULEND as I have read they are very difficult to administer. I posted a reply on this thread as to what I have tried. I am going to rule out Superior Semi Circular Canal Disorder and then if that comes back negative will have a CAT scan of e-tubes to see if patulous. I am not certain I have PET but it is most likely what I have based on my symptoms.

I hope you have improved.
Jen

 
Old 08-01-2011, 04:03 PM   #7
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x97freeman HB User
Re: Looking for advice on latest surgery options for Patulous Eustachian Tube

I have been suffering from PET since I was 14 years old (I'm now 32). I've tried Potassium Iodine, something called PIMA syrup, PatulEND nasal drops, PE tubes, and recently two surgical remedies: eustachian tube abrasion (creating scar tissue) in my right tube and cartilage grafting in my left. Nothing, including the surgeries, has helped. The autophony was better for about 2 weeks following the surgeries, but it quickly came back. My conclusion at this point is that there is no relief, and certainly no cure.

The autophony goes away if I hold pressure to the back of my neck with both hands, thus closing off the tubes temporarily. Of course, as soon as I let go, the tubes reopen and my symptoms are back, and also it looks ridiculous, but it brings some short relief sometimes. I found this technique on my own fairly quickly after I started having symptoms, so I imagine it may be second nature, but to those of you that don't know it, I hope it helps.

So, to clear this up, the objective of this post is not to discourage anyone from seeking remedies, though the most drastic and invasive have not worked on me. On the contrary, I'm writing this post because in the end, I found myself much happier after I came to the conclusion that there is no help. I realized that I have to live my life to the fullest despite this affliction. In the grand scheme of things, there could be far worse things from which to suffer.

If I may say so, myself, I used to be a very talented singer (my first Bachelor's degree is in vocal performance) but eventually had to change careers as a result of this affliction. I am happier now, having moved on in life, than I have ever been. My autophony is pretty much continuous, so I have to ask people to repeat themselves regularly (and many times I need to hold my breath to hear what they're saying), but despite that, I try to remember that life is a gift, and I'm so glad to be alive. I hope this helps.

Last edited by x97freeman; 08-01-2011 at 04:07 PM.

 
Old 08-02-2011, 01:26 PM   #8
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ALC2009 HB User
Re: Looking for advice on latest surgery options for Patulous Eustachian Tube

I'm still subscribed to this thread, so I see the messages pop up now and then.

I am fortunate enough to still be free of the horrible autophony problems I was having when I first posted to this thread. I would really urge anyone struggling with autophony to have a CT scan done to rule out Superior Semicircular Canal Dehiscence (SCDS), especially before undergoing other surgeries for PET.

You might want to consult a neurotologist, a specialist who deals with neurological and ear issues. The CT scan that's required is a very fine-grade scan, 0.5 mm I think. A regular scan might not show the dehiscence, so it's worth searching for someone familiar with the condition who knows what to look for.

The surgery for SCDS is not easy, but it worked for me, thank God. I really don't know how I would have coped if I hadn't found a solution. Talking, especially in crowded situations, was a nightmare for me.

Best of luck to everyone suffering with autophony!

 
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catheter, dr. poe, ear irritation, patulous



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