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Old 04-09-2009, 07:26 AM   #1
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Patulous Eustachian Tube surgery Fluffyshouse

I am trying to connect with Fluffyshouse, who last posted in October of '07. As I am headed toward some surgery in 6 weeks, I want to know how she is doing. All her threads are now closed.

 
Old 04-20-2009, 01:43 PM   #2
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Re: Patulous Eustachian Tube surgery Fluffyshouse

Quote:
Originally Posted by crazyears51 View Post
I am trying to connect with Fluffyshouse, who last posted in October of '07. As I am headed toward some surgery in 6 weeks, I want to know how she is doing. All her threads are now closed.
I have PET (right side) from a cranial infection. Treated at Johns Hopkins for over a year. They say no surgery works for PET. All are very risky since if the etube is blocked infections can occur and cause other problems. I'm very interested in hearing about your PET, andwhat kind of surgery you're contemplating and where you're getting it done.

 
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Old 07-24-2009, 10:41 PM   #3
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Re: Patulous Eustachian Tube surgery Fluffyshouse

This message is for crazyears51. I am Fluffyshouse. I saw that you tried to contact me, but I thought it was spam. I'm so sorry. I hope you are still checking this site because I will talk to you about PET and my experiences. I had surgery by Dr. Poe in Oct. 2007. I am autophony free now. It was my fourth surgery in just a few months and Dr. Poe tried something he had never done before. He placed catheters down my Eustchian tubes, and it worked for the most part. Once in awhile I get autophony and take Premarin nose drops for eight weeks and by that time the autophony is gone. I have not had any autophony since January of this year, 2009. Since fixing my ears, placing the catheters in the Eustachian tubes is the method of choice by Dr. Poe in Boston. He is the one to go to for PET. He is very caring. He's the best doctor ever. I'm sorry again, crazyears51, for ignoring your email to me. Please contact me through this thread. I have my life back and want you to have the same.

Last edited by fluffyshouse; 07-24-2009 at 10:42 PM. Reason: wrong word, and to add more words

 
Old 07-25-2009, 12:40 PM   #4
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Re: Patulous Eustachian Tube surgery Fluffyshouse

Hey..good to hear from you guys again!! Fluffy, could u elaborate on your surgery more? Whats the exact procedure? What material is the catheter and how long is it? Are u completely PET free now?
-KSM

Last edited by hb-mod; 07-25-2009 at 03:22 PM. Reason: Removed quote of preceding post

 
Old 07-25-2009, 08:50 PM   #5
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Re: Patulous Eustachian Tube surgery Fluffyshouse

Hey KSM,

It's good to hear from you. It's been a long time. Yes, I am autophony free right now, and have been since Dr. Poe put catheters in my E-tubes October 2007, almost two years ago. I have had a couple bouts of autophony and have taken the drops that I mentioned in my previous post. That took care of the autophony. So no autophony since January.

The catheters are made out of the clear tubing that hospitals use for various things, and is filled with some kind of wax. They are as big as a match.

I have to have ventilation tubes in my eardrums right now because they have been filling with fluid. But as long as I have them, I am great. The vent. tubes should be falling out any time now and we are waiting to see if my ears fill with fluid again. If they don't, I won't have to have the tubes, which would make me so happy.

But if I have to have the vent. tubes, Dr. Poe will try and find a manufacturer who will make custom made catheters for my Eustachian tubes. I have weird E tubes, not like a normal person.

I heard in June that Dr. Poe has done about 23 PET people using the catheters in the same way as he did mine. Most of them have not needed vent. tubes in their eardrums. It's just my luck right now to need them.

Dr. Poe went to Finland for a year on Sabbatical but is back in Boston now picking up his practice once again.

He told me he has had such good success fixing autophony with the catheters that that is his method of choice now, instead of the cartilage grafts.

I hope I have answered all of your questions. I wish you could get your ears fixed, too, if you haven't yet. I cannot imagine life having autophony every minute of every day again.

Take care,

Cathy

 
Old 07-26-2009, 05:06 AM   #6
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Re: Patulous Eustachian Tube surgery Fluffyshouse

Quote:
Originally Posted by fluffyshouse View Post
This message is for crazyears51. I am Fluffyshouse. I saw that you tried to contact me, but I thought it was spam. I'm so sorry. I hope you are still checking this site because I will talk to you about PET and my experiences. I had surgery by Dr. Poe in Oct. 2007. I am autophony free now. It was my fourth surgery in just a few months and Dr. Poe tried something he had never done before. He placed catheters down my Eustchian tubes, and it worked for the most part. Once in awhile I get autophony and take Premarin nose drops for eight weeks and by that time the autophony is gone. I have not had any autophony since January of this year, 2009. Since fixing my ears, placing the catheters in the Eustachian tubes is the method of choice by Dr. Poe in Boston. He is the one to go to for PET. He is very caring. He's the best doctor ever. I'm sorry again, crazyears51, for ignoring your email to me. Please contact me through this thread. I have my life back and want you to have the same.
Fluffyshouse,

How good you are to keep up with the forum after so long, to report your success. I did have more cartilage surgery in one ear and it has held so far with the intermittent autophony I'd had (vs. being patulent all the time, which I wasn't). I don't have much time right now but I'll write later. I am going to give your information to my doctor in MI. Thanks for writing back.

Lee

 
Old 07-26-2009, 03:48 PM   #7
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Re: Patulous Eustachian Tube surgery Fluffyshouse

Dear Lee,

I am so happy that you wrote. I feel so bad for not writing the first time you tried to get to me. I quit writing on Healthboards after I had my ears fixed, and didn't check it until the other night when I saw it was you trying to reach me. Maybe something inspired me. I don't know.

I'm glad your cartilage graft is holding for the most part. I had two grafts in one ear, but they didn't work at all. Dr. Dennis Poe in Boston said I was his most difficult patient at the time two years ago. I figure I was his guinea pig for others with PET. Anything to help, I guess

Take care,

Cathy

 
Old 07-30-2009, 05:23 PM   #8
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Re: MESSAGE TO FLUFFYSHOUSE

MESSAGE TO FLUFFYSHOUSE

Hello everybody,

I'm new there and also have PET since long years...
I'm french and here, there is no solution like you in States with dr Poe.

I just want to talk with fluffyshouse, I have some very important questions.
I want to talk about the catheter procedure to some doctors in my country, the goal is to informe them about that procedure, because in France, nothing except injections are possible.

Hello fluffyshouse
I'm so happy for you to have good results with your surgery, I wish you a long terme relief.

Are you still there ?
Or how to contact you in other way...?

Thank you.

 
Old 08-04-2009, 10:02 PM   #9
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Re: Patulous Eustachian Tube surgery Fluffyshouse

Hi,

Yes, I am here. I will check with Dr. Poe's assistant in Boston where he practices medicine and see if Dr. Poe has written up how he places the catheters.

He does the surgery up through the throat, the most uninvasive way of doing surgery in the ear. He uses special instruments to do the surgery, which he invented himself.

Dr. Poe also teaches how he does it and invites other doctors to learn. I will see if I can find out when he is teaching the course again. It is much easier to place the catheters than to do the cartilage grafts. And a much better success rate.

Dr. Poe was in Finland for a year and came back to the US in June.

Haven't your doctors in France ever met him? He travels a lot to many seminars around the world. It would be a very good thing if some doctors in France would learn Dr. Poe's method. There is a doctor in Switzerland who has trained under Dr. Poe, but as far as I know, he is still doing the cartilage grafts. If you want to know his name, let me know.

I will write again when I have more information from Dr. Poe's office. I care about you, so keep checking this site for my reply.

Cathy

 
Old 08-05-2009, 02:55 PM   #10
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Re: Patulous Eustachian Tube surgery Fluffyshouse

KSM79 - I got your message and tried to respond, but it wouldn't let me. Try again, and then I will try. Thank you.

 
Old 08-05-2009, 02:56 PM   #11
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Re: Patulous Eustachian Tube surgery Fluffyshouse

UserName 2 - I emailed Dr. Poe's office today to find out answers to your questions. KSM79 is helping us out. Thank you, KSM.

Cathy

 
Old 08-07-2009, 12:20 PM   #12
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Re: Patulous Eustachian Tube surgery Fluffyshouse

Thank you very much for your answer and help (and KSM79 too, very interesting link).

Yes, I've seen this Dr in Switzerland (Geneva, Dr Kujawski), but I didn't accept the graft surgery for many reasons: risk, price too big, no reimbursement, results not guaranted...

I don't know and don't think somebody in France met Dr Poe, but I would to make this possible, or tell about his method to be teached.
I know that catheter insertion was done in Belgium and Holland, but I read some failure... and threw the ears I can't no more since I've been multiple operated in the past (otitis, eardrums, ossicles...)

- are your really PET free, or at least is the patency greatly reduced ?
- for inserting catheter, he did it just threw the throat, not threw the nose ?
- have you still ventilation tube inserted ?
- I think the catheter method seems to be more easy and should be less expensive than the cartilage graft, am I right ?

Thank you again.

Last edited by User Name2; 08-07-2009 at 01:24 PM. Reason: forgot question

 
Old 08-07-2009, 01:10 PM   #13
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Re: Patulous Eustachian Tube surgery Fluffyshouse

KSM79, don't mind, I've read your link, it was deleted after.

Another way to find it:
in a famous colored search engine -> more -> books -> paste this: "eustachian tube catheter bluestone" go to page 166.

 
Old 08-07-2009, 01:12 PM   #14
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Re: Patulous Eustachian Tube surgery Fluffyshouse

- are your really PET free, or at least is the patency greatly reduced ?
- for inserting catheter, he did it just threw the throat, not threw the nose ?
- I think the catheter method seems to be more easy and should be less expensive than the cartilage graft, am I right ?

Hello my French friend,

I hope you don't mind me calling you that since you haven't used a name.

I am still waiting for Dr. Poe's reply in response to your post the other day. I will post as soon as I hear something.

In answer to your questions:

I have catheters in both ears, along with ventilation tubes in both eardrums, but they should be falling out soon. I am almost patent free. I have had a few break throughs in the almost two years that I have had the catheters.

I take a medication called premarin, which a chemist has to make. It is in liquid form and inserted through the nose while laying down. It goes into the Eustachian tube and swells it up, and causes just enough scar tissue to prevent patency. I use this medication for six weeks. After only a couple of days of using the medication, the patency is gone, but I continue to use it for the remaining weeks.

Dr. Poe always does PET surgery through the throat - less invasive than cutting open the eardrum. The patient is just left with a bad sore throat, which heals after three days. A ventilation tube is put in the eardrum if the patient has to fly home because of a little swelling in the ear from the surgery.

I was Dr. Poe's first patient to have the catheter placed for PET. It took a few hours in surgery while he was figuring out the size of catheter to use for me. But he has since shortened the surgery time to half an hour. He does it quick and much more easily than the cartilage graft, which was unsuccessful for me anyway. His goal is to do it in his office instead of the hospital, which would save a lot of money. I don't know how close he is to doing that at this point, since he just got back to his practice after the Sabbatical in Finland.

I don't know the cost of the catheter placement now. But with the time in surgery drastically reduced, I would imagine it must be less expensive. I hope so, anyway.

Dr. Poe used the Shea catheters on me before using the catheters that I have now. The Shea catheters did not work for me.

Besides the very few bouts of patency, I am autophony or patent free - completely. There is no popping or clicking whatsoever. I have slight ringing in my ears but that has been there since I got a virus in my ears that started PET in the first place.

I look forward to hearing from you again soon and keeping me posted as to what you and your doctors do, or learn about the catheters.

I wish you much success in your search for helping yourself and others. If there is anything else I can do for you or any questions you might have, please let me know. I care and am here to help.

Cathy

 
Old 08-10-2009, 04:19 PM   #15
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Re: Patulous Eustachian Tube surgery Fluffyshouse

Hello Cathy,

You can call me Gil.
"user name" is my real pseudo (I know it's odd).

I'm so happy you're really pet free, I hope more people will have no more this horrible condition...

I've heard about premarin, do you still use it ? Are the drops painful ?
For my part, I use pur iodine (in water), it has the same effect than patul-end (induce irritation of ET), it works well but it's so horrible to use (like patul-end), and pet always returns after some days... so I resign to use it when I can't no more managed pet by sniffing or other.

I know it's long to receive reply from Dr Poe's office (I ever contacted him in the past).


Gil

 
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