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hedy-446 06-18-2010 09:51 PM

Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
Hi everyone...I've been suffering from Patulous Eustachian Tube for 4 months now. My story is similar to others with the took 3 months for me to even find an ENT that diagnosed me.

Once I was diagnosed my doctor recommended I try Patulend drops which I have been using for 5 weeks now. I do feel the drops are helping since I am no longer getting autophony and sometimes my ear pops clear and feels normal for a bit. I am still getting a decent amount of fullness and clicking though.

I went for a follow up with my doctor and he seemed skeptical that my symptoms would improve further with the Patulend even though the Ear Institute recommends using them continuously for 3 months. He offered to put a tube in my ear to relieve the pressure and clicking. I was shocked by this because he never mentioned this as an option when I was diagnosed and I thought ear tubes didn't work for PET. He said it might work, it might make it worse or do nothing. Put on the spot, I decided against it today but I have another follow up in 3 weeks.

Does anyone with PET recommend ear tubes? From what I read online it seems it doesn't help most people or, if it does, the symptoms just come back when the tube falls out. There is so little info about PET...even from doctors so it is so hard to make decisions.

I actually have an appointment with Dr. Poe in Boston but it's not for 3 months. I'm debating if I should try the tube or just power on with the drops and wait for Poe.

I appreciate any advice!

KSM79 07-07-2010 09:53 AM

Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
Hi Hedy...Dr.Poe is working on putting Customized Vent Tubes in order to treat PET. The designs and specs are yet to be approved by the FDA. And only then can he start production and implementation!!
I suggest you wait until you see Dr.Poe and let him take a call. PET has no cure. Nothing has been permanently successful. Its hard I know..but just have patience.

hedy-446 07-07-2010 04:53 PM

Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
Thanks...I know about Poe's catheter surgeries. I was talking about grommets. I was wondering if it was worth trying those before I see Poe. It seems people have mixed results...more often negative so I don't know.

KSM79 07-08-2010 08:26 AM

Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
I have had extended discussions over whether or not to insert grommets with my ENT. Quite a few ENT's actually. Again, unfortunately, its not effective. U might feel relief for some time, but PET comes back. And its not permanent relief. So my advice is wait until you see Dr.Poe.

hedy-446 07-08-2010 02:39 PM

Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
Actually, I've had a few people tell me it was effective for them. You are right though that the majority seem unhappy with them.

The problem is that there are so many different symptoms people have with PET. Some people only have autophony and other me....have tons of pressure, clicking and popping. If I only had autophony, I feel certain that I would feel pretty normal now because the Patulend is very effective on that. Not so much for the other symptoms, which are what I was considering the grommets for. Although I have been encouraged that the other symptoms just take longer to go away and I should persist with the drops....which I am doing. seems that everyone has different symptoms and different causes so different treatments are in order. Maybe there is no official cure, but there are definitely many effective treatments to try and there are definitely people who consider themselves cured. I hope you don't give up!

Thanks for the advice and opinion though. In the end, it probably is wisest to wait, it's just really hard!

fluffyshouse 08-03-2010 11:03 PM

Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
I agree with those who say to wait to see Dr. Poe until you get vent. tubes in the eardrums. I have vent. tubes along with PET, and they DO NOT help. I am waiting for them to fall out so I can wash my hair in the shower.

Good luck with Dr. Poe. He is the best caring and most knowageable doctor there ever was.

I look forward to seeing him again when his new shims have been FDA approved. I am waiting to hear about the status of them.

All the best. And I am sorry you have PET, too. 'Life changing.

hedy-446 08-04-2010 03:16 PM

Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
Thanks Fluffy.....I really hope Dr. Poe can help me. I think I'm most afraid of him telling me there is nothing he can do, but it doesn't seem like that happens with him.

As afraid as I would be to get surgery, I can't imagine living like this so I hope he will consider me a candidate.

I've read about your experience and I know your PET is very severe. Does it seems Poe only operates on the most severe cases that have 24/7 autophony or do you know others that have had surgery with less severe cases? There isn't all that much info out there and although many people praise Poe, there are only a few that have actually written about their surgeries. I imagine he does many in a year so I'm hoping the lack of posts means that most are successful and those people have just moved on.

It sounds like your recent surgery didn't work....I know you have had frustrating. You mention Poe is awaiting approval for a new device. I understand it's still a catheter but a better fitting that correct? Is this because a few people have had them slip and this is to hopefully avoid that?

I'm so grateful for any info or advice. I think I am most anxious about the unknown and there is so little info out there.....good or bad.

KSM79 08-04-2010 03:18 PM

Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
hey... how are u doing?

hedy-446 08-04-2010 03:29 PM

Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
Hi K-

I'm pretty much the same.

Anyway, I'm basically just waiting for my appt with Poe next month. I've sent him all my records and test results and I'm waiting on a packet from him the mail.

I been ok autophony wise for the past week. I always have the Patulend ready just in case it comes on bad. I used it for 3 months straight and at this point I'm only using it for autophony if and when it happens. For me, I think the drops do help with the autophony, but I'm not sure they've really done anything permanent to my ears at this point and I'm always plagued with pressure, popping and clicking. I've tried just about everything and had just about every test so I'm open to something more aggressive now that I feel I've given the drops their due and I'm anxious to see Poe.

fluffyshouse 08-04-2010 04:19 PM

Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Once Dr. Poe determines you actually have PET, he will suggest surgery to try and fix the autophony. As far as I know, he will do surgery on any level of PET, because when I first saw him four years ago, my PET was not as severe as it is now.

I agree that the lack of posts means that people have found relief through Dr. Poe's surgeries. I am a rare case, but know that Dr. Poe will fix me eventually. The new shims come in different sizes to fit more peoples' Eustachian tubes. The catheters that I have now are just hospital tubing that is used when you are hooked up to an IV. It is placed in the Eustachian tube through the throat, then filled with bone wax.

Those catheters worked for me for a very long time, then a year ago the one failed. But, again, I know Dr. Poe is the doctor for me. I am excited about the new shim he has developed. Hopefully, it will be available by the end of the year, but I don't know.

He will do a scope through your nose to look at your E-tubes, and also look at your eardrum for the movement it does only with autophony. He takes a long time to exam you and to talk to you. It is not a quick appointment but he's so friendly and patient, I am always sad to leave him.

The shim is better fitting, and opens up at the top like an umbrella to prevent slipping. It's just so exciting that he thought of it, and I am looking forward to getting my own new set. All of my surgeries have not been failures. They worked for awhile, but it is my body's make-up that is strange, not the methods used on me. Dr. Poe has not had many failures with the catheters so you have a lot to look forward to, as far as relief.

Where do you live? Do you have far to go to see him? He is worth going around the world for. Tell him that Cathy from Salt Lake City, Utah says hello.

Please stay in touch. I care.

With friendship,


hedy-446 08-04-2010 04:57 PM

Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
Thanks so much Cathy!

I've actually had a couple of the tests done for PET and had the scope up my nose before too. I saw a doctor here in CT where I live...I think he is a colleague of Poe's. He looked at my bad ear and said my E-tube was wide and PET was my problem. He said he could clearly see I didn't have standard ETD...which I never thought I did because I could physically feel my tubes opening and I had intermittent autophony. He recommended Patulend which I used for a few months. It's hard to say how much it has helped but if I do get a bout of autophony it will get rid of it quick. I'm not sure it's physically changed anything though...I think I just get congested. He actually does the cartilage graft surgery, but I figured, since I'm so close to Poe, it is worth getting his opinion. Also, I know he's doing this new surgery which is less invasive and seems to have a better success rate....although I know the grafts have worked for some people.

Unfortunately, even when I don't get autophony, I get tons of pressure and my ears pop and click when I take deep breaths and swallow and sometimes even when I don't get full on breathing autophony, I still have an echo/vibration.

Was autophony your only symptom or did you have popping and clicking and pressure too? If so did you feel the surgeries helped with that too or only the autophony?

Luckily Poe isn't far and I'm actually from Boston so I know it well.

fluffyshouse 08-04-2010 05:12 PM

Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
You are lucky to live near-by Dr. Poe. It is a great travel ordeal for us to get there, but worth it. I tried the Pat-ul-end, and never had a worse headache and pain in my life after dropping those drops in my nose. I was in so much pain. They went in the trash really quick. I am glad they work for you.

I had the popping and clicking for so many years before I actually got the autophony. I thought that was how it was for a normal person. After I had the catheters put in, all of that went away along with the feeling of fullness and pressure. Poof! all gone with those catheters, until the one failed. The fullness and pressure are gone but I currently have ventilation tubes from having Radiesse injections by an ENT here in Salt Lake City this last spring. So as soon as the tubes fall out and my eardrums close up, I will know if they helped with the pressure and feeling of fullness.

Along with the autophony, I have the clicks and pops, big time. I don't pay much attention because I know what it is, and someday, they are going to all be gone through Dr. Poe.

I also lie down every afternoon to relieve myself of autophony and I know that helps me get through the day.

I am trying to keep a positive attitute, and it has helped. We will get fixed - you and I and the others, if they want to. I am lucky that I have excellent insurance, and frequent flier miles so I can travel to Boston. I love it there, so don't mind going. You are from a beautiful place.

Thank you for writing back. And remember, you are on your way to getting fixed. I promise. I want to know every detail of your visit to Dr. Poe. Remember to say hello and I highly recommend him.


hedy-446 08-04-2010 05:47 PM

Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
Cathy....I am so glad to have found you! You are exactly the person I needed to talk to and this is exactly what I needed to hear!

I think I am at that earlier stage you describe. I believe I may have had this for a long time on some level because I used to get autophony sometimes after a hard workout. I thought it was normal and it wouldn't last long so I didn't think much of it.

Last year I had my tonsils out and 6 months later I got a really severe cold. While I had the cold my ears were popping when I blew my nose and after the cold left me they never stopped. Then I started having the autophony at random for short periods of time. I believe the tonsillectomy or the cold or a combo pushed me over the edge.

I saw tons of doctors, had an MRI, CT scan, blood tests...everything...and after 3 months, two doctors finally said PET. Although it's hard to feel lucky with this disorder, I know many people suffer for years without even knowing what they have and even then are often given few options. Even though this has been the toughest 7 months of my life, I know this is a short time span for PET and I feel blessed for having Poe on the horizon. I also know that I needed to have all those tests and try drops before I would have been able to consider anything more aggressive so in many ways my situation is moving as fast as possible.

Reading your post, I am so grateful I didn't get the tubes out of desperation to try anything and I am so glad to hear that the catheters helped all your symptoms. This gives me so much hope...especially since I feel I am in the earlier to mid stages of this disease and can hopefully catch it quick and kill it.

I am with you.....I believe we will recover from this 100% and I hope I can help other people the way you are helping me. I can't wait to sing and exercise my butt off again!

Thank you! I will definitely let you know what happens and I hope you will continue to talk about your experience too. Not enough people talk about it.


fluffyshouse 08-04-2010 06:14 PM

Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
Dear Alena,

I quit talking about it on this site a couple of years ago. I got tired of it and it was a constant reminder to me of what I had. I kept having to repeat over and over again to people. But the other day, I had a feeling to see what was being said, and that is when I saw your posts. Maybe I was meant to find you to help you get through, what is also the hardest time in my life. But not for long because the end is near.

I appreciate you telling me that you are glad you found me. That makes all my writing on Healthboards worth it. I figure that PET is NOT going to make me a better person, so I decided to help others that have it or who treat it - namely my ENTS where I live. I am educating them on it, so they can help others.

I have a much better attitude about it now than I used to, and it helps along with that nap every day, like I said earlier. A lot of times, I won't have autophony for the rest of the evening if I lie down.

I am looking forward to hearing about your visit to Dr. Poe and hearing what the status of the shims are. I am sure he will discuss that with you so please let me know. I start back to work in October where I talk and talk, so am hoping the shims will be available at least by October. You know how difficult it is to talk to people when your voice and breathing are screaming out of your ears.

Oh, it was a cold that blew out my ears, too. I know that was the last straw. Dr. Poe gives this warning to all people: never blow your nose hard, and never stifle a sneeze. I was doing both of those all the time. I am paying the price, I think.

Many, many hugs - you are almost there.

I had to diagnose myself because my ENT at the time did not believe that I had it. But because of me, he recognizes PET people when they come in to see him and he can advise them as to their options like seeing Dr. Poe or using Pat-ul-end drops.

hedy-446 08-14-2010 07:34 AM

Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

I have another question for you if you don't mind. I noticed on one of your old posts that you mentioned TMJ pain from clenching your teeth. I also started having face and jaw pain a few months after the PET started. I believe it is a result of clenching from the stress of PET. It has gotten better but still bothers me. I did have a bite guard made but I would wake up clenching on it and hurting worse.

My question is, do you still wear your mouthguard and did you find it helpful? I'm wondering if I should give it another chance or just leave it alone and hope it will get better when my stress level goes down. I just hate the thought of making things worse or causing myself more pain, but I don't want to end up with jaw problems too.



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