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Old 06-04-2008, 02:09 AM   #46
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Re: PET Patulous eustachian tube - Started new therapy it's working

So do u think the surgery was successful? Or u think you would want to wait for a little longer to decide if it was..

 
Old 06-04-2008, 03:42 AM   #47
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Re: PET Patulous eustachian tube - Started new therapy it's working

Quote:
Originally Posted by KSM79 View Post
So do u think the surgery was successful? Or u think you would want to wait for a little longer to decide if it was..
I would like to wait a year to make that decision, my ear has seemed better but it's winter here and its always better then anyway and I have been sick too... On the weekend I went out for a couple of drinks and it played up then, dehydration!! and it tried to play up a bit today but it did recover quickly...

So at this stage I would say it hasn't completely worked but maybe it's not as bad, lets see what happens when summer comes!!!!

 
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Old 06-04-2008, 08:23 AM   #48
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Re: PET Patulous eustachian tube - Started new therapy it's working

What has your Doc done exactly..Is it the cartilage graft which Dr. Poe does or is it the Collagen injection. Could you explain the procedure in a detail if you dont mind. I can discuss with my Docs here in India and see if it can be replicated.
Thanks

 
Old 06-04-2008, 06:29 PM   #49
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Re: PET Patulous eustachian tube - Started new therapy it's working

Quote:
Originally Posted by KSM79 View Post
What has your Doc done exactly..Is it the cartilage graft which Dr. Poe does or is it the Collagen injection. Could you explain the procedure in a detail if you dont mind. I can discuss with my Docs here in India and see if it can be replicated.
Thanks
It's the same as Dr Poe using Alloderm, I think I have explained it previously

 
Old 06-11-2008, 08:27 PM   #50
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Re: PET Patulous eustachian tube - Started new therapy it's working

Update:

Don't bother people it didn't work

Now that I have healed and my cold has cleared up the PET is back just as it was before..

Waste of time and money, at least I tried..

Seems to me the only thing that can help a bit is sound therapy...

Sorry guys

Is there anyone out there who has had any success????

 
Old 06-12-2008, 07:40 AM   #51
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Re: PET Patulous eustachian tube - Started new therapy it's working

I'm so sorry, Petear. I think everyone was hoping it would work. I know I was. Thank you for the update. Now I guess we just look for other options. There's got to be something out there that can take care of this problem. Best of luck to you and to all of us who have to deal with this.

 
Old 06-12-2008, 09:18 AM   #52
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Re: PET Patulous eustachian tube - Started new therapy it's working

SH**...really sorry to hear that. I guess all of us pinned our hopes on you. Have you talked to Dr.Atlas about it.. maybe he could try again. Many of the cases with Dr.Poe didnt work the first time, but he tried again..and some of them got relief the second time round.
Isnt there even a 10% improvement??
Really sorry again!!

 
Old 07-31-2008, 10:48 AM   #53
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Re: PET Patulous eustachian tube - Started new therapy it's working

Hey just tryna keep the thread alive...Where is everyone??

 
Old 08-10-2008, 10:54 AM   #54
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Re: PET Patulous eustachian tube - Started new therapy it's working

There are several specialists in London who offer treatments for PET I was misdiagnosed with PET and I have seen Mr Gerald B Brookes (correctly diagnosed me) and Mr Alec Fitzgerald O'Connor (misdiagnosed me), if you are willing to travel down there and see somebody in a private setting.

Mr Gerald B Brookes (he is probably the best ENT/Neurotologist in the U.K), Mr Azhar Shaida, Mr Alec Fitzgerald O'Connor, Mr John Graham, several more, use the internet and you will be surprised how many docs know about and offer treatments for PET.

Good Luck, make the trip, at least for a consultation for peace of mind, it will probably cost you a couple of hundred quid.

I have also been to see Dr Kujawski in Geneva, he misdiagnosed me with PET, so I had a bad experience with him and would not recommend him

Last edited by moderator2; 08-10-2008 at 11:10 AM. Reason: please do not leave huge quotes in your posts

 
Old 08-10-2008, 11:25 AM   #55
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Re: PET Patulous eustachian tube - Started new therapy it's working

Hey John, Thanks for the info. Do you have an Inner Ear problem..if so..what are your symptoms? And how can you be sure its not PET.
Do any of the Docs you mentioned have a definite cure for PET??
Will await your response..
Thanks
KSM

 
Old 08-10-2008, 04:16 PM   #56
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Re: PET Patulous eustachian tube - Started new therapy it's working

Quote:
Originally Posted by KSM79 View Post
Hey John, Thanks for the info. Do you have an Inner Ear problem..if so..what are your symptoms? And how can you be sure its not PET.
Do any of the Docs you mentioned have a definite cure for PET??
Will await your response..
Thanks
KSM

There are many, many ear conditions where autophony can exist as a symptom, Superior Semicircular Canal Dehiscence Syndrome, Perilymph Fistula (my diagnosis), Otitis Media, Menieres Disease, PET, etc, etc, - too many too list.

There are also doctors in India who offer treatments for PET, I am surprised you have not had success in finding a doctor, I have had email contact with ENTs in India, in fact I wrote emails to hundreds of ENTs/Neurotologists all around the world. You will find Dr K P Morwani in Mumbai offers treatments for PET, similar method to Dr Shea, also Dr Manish Prakash in Gurgaon (just outside Delhi) - both of these doctors were trained in England, Dr Jayashankur Narayana in Mumbai - he is trained in the USA and Germany.

NEVER assume you have PET just because you have autophony - only a competent, qualified ENT/Neurotologist can make the correct diagnosis.

Good Luck.

Last edited by JohnUK; 08-10-2008 at 04:20 PM.

 
Old 08-10-2008, 10:49 PM   #57
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Re: PET Patulous eustachian tube - Started new therapy it's working

May I ask what you do have?

 
Old 08-10-2008, 10:58 PM   #58
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Re: PET Patulous eustachian tube - Started new therapy it's working

sorry only saw your first entry just seen your answer so disregard..

 
Old 08-10-2008, 11:18 PM   #59
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Re: PET Patulous eustachian tube - Started new therapy it's working

I just looked up your condition John and it seems the main symptom is dizzyness, is this true for you? I have had a CT scan which came back normal and have had the camera up my nose which showed to two ENT doctors that the base of my ET tube was open at the time, I don't get dizzy or have any hearing loss in fact my hearing is pretty good, my ear does however feel like there is a lot of pressure in it when it tries to equalize like when a train goes through a tunnel or your driving up a steep hill, I am going on a plane next week so that will be interesting, and my autophony is intermittent, what are your thoughts??

 
Old 08-11-2008, 09:07 AM   #60
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Re: PET Patulous eustachian tube - Started new therapy it's working

Dear Petear,

I am sorry for all you have been through. I too have had failed Eustachian tube surgeries - Dr Kujawski "so called ET specialist" misdiagnosed me.

However in my case my ET surgeries gave NO relief at all, this gave away the game. In your case you mention you have been achieving relief from ET treatments, a cold giving you relief, etc, this tells us your diagnosis may be correct!

Please tell me, the pressure sensation you describe, was it there BEFORE your recent ET surgery? - has the pressure feeling always been there when your symptoms started?
would you say the pressure is a full feeling sensation in your affected ear? or would you say the pressure you feel is more like a negative pressure sensation? how are your tympanometry/tympanogram looking - type A, type B or type C???

Full feeling can be a symptom of PET and also many other ear conditions.

If your tympanogram reads Type B or Type C - I doubt you have PET, if your pressure sensation is a feeling of negative pressure - I doubt you have PET - please tell me if this is the case BEFORE your recent ET surgery?

If you feel negative pressure - you CANNOT have PET, you have the opposite problem - a ET which is too narrow or something is obstructing your ET (mucus, fluid).

I am NOT a expert - these are my personal opinions based on my experiences and my knowledge from literature I have read and discussions with specialists.

GOOD LUCK - a solution exists for all problems.

J

Last edited by JohnUK; 08-11-2008 at 09:13 AM.

 
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