aja

For those of you that don't know me, I had a patulous eustachian tube on my left side for almost 9 years.
I wanted to let everyone know that 8 months ago I underwent the cartilage graft PET surgery with Dr. Poe in Boston.
This has been my experience with the surgery:

The surgery took 3 1/2 hours (it doesn't normally take that long but he said mine was one of the worst cases he'd ever seen and it was a lot of work to reconstruct it). the recovery (like all surgery) was horrible. the first 48 hours were the hardest. he did the surgery by putting a camera in my nose and he did all the work by going up the back of my throat. the pain for the first 48 hours was due to the swelling in my throat (3 1/2 hours of having instrumentation up there). after the first 48 hours it got a little easier, and after a week I was able to swallow food with out it being very very painful. my throat and my nose were the things that hurt after the surgery. there was no pain at all in my cheek/face/ear/eustachian tube.
he had to take cartilage from my nose because he needed a lot (normally he takes it from the outside part of the ear, but he told me he had to take it from my nose because he needed so much), so my nose hurt and was swollen and I was worried that I would end up looking different because he had to take the cartilage from there but eventually it went completely back to normal and now it looks the same as it ever did.
ok, now about my ET/my ears. My hearing was really sensitive after the surgery for quite some time, maybe 2-3 weeks, the sound of a knife and fork was very uncomfortable for example, but that went away eventually, once enough time had passed after the surgery, it was just from the trauma.
After the surgery, my left ear (which is the side that was patulous) felt "plugged" and my hearing was very quiet on that side. i noticed a significant reduction in my hearing on that side. this is because my eustachian tube was blocked, because of what he'd done and because of the swelling. i was terrified that it was going to stay permanently blocked and I would never hear properly out of that ear again, but Dr. Poe assured me that with time it would gradually "clear" and my hearing would be fully restored. He was right. after about 6 weeks, my left ear started to pop and crackle and squeak here and there, and bit by bit it "cleared". this was because the swelling had gone down and also because when he does the procedure he has to over correct it (over block it) to begin with and then the body absorbs a bit of the cartilage and the idea is that you end up with just the right amount (or as close as he can get).
It's now been 8 months and I can say that i've been really delighted with the results of the surgery. I'm so so so glad I did it.
my life is not 100% PET free, it does come and go a little bit, but it's an enormous improvement compared to how it was before. before the surgery my life was very difficult indeed because my PET was so bad (I used to have it very bad). It's really hard to say how often I get it now, it really varies.
I've spoken to other people that have had the procedure and they say that when they get PET now, the autophony is not nearly as bad. in my case, when my ET open nowadays, the autophony is just as loud as it was in the past, but it doesn't last as long (it's not as relentless) usually my ET closes up again quite soon...sometimes within a 30 seconds, sometimes 20 minutes. Sometimes I might get PET on and off for 2-3 days (which can be botersome). other times I'll go 3 weeks with bearly any PET at all. It does still play up when i do exercise for instance. or if I'm really stressed. But I can tell you that it's not enough to really interfere with my life any more.
In the past I wanted a solution that would fix it completely; i didn't want something that would "improve" it. but i can tell you that I'm so grateful for the improvement. I can deal with it being a small feature in my life. I've been able to do many things I couldn't have done in the past. I feel like I can now a least work my life around it.
something that I want to make clear to you is that *in my case*, my ear does not feel different or altered in any way, I just have PET far less often than I did before. that is the only difference. just less PET. my ear doesn't feel weird in any way or changed (it did for a while after the surgery but only for 6 - 8 weeks).
I have been in touch with a couple of his other patients and their stories are very similar to mine. the only down side is that for some people it seems to come back eventually because the body absorbs all the cartilage, but Dr. Poe has ways of working with that. He builds on the scar tissue that is left behind from the graft so that eventually your eutachian tube is plumped up enough by your body's own material. One of the guys I spoke to was PET free for 9 months, but now it's come back and he's going back to have the procedure done again (but this time it won't be as major because he'll be building on the scar tissue). each case is different i suppose. and i wouldn't be surprised if there are people who's PET hasn't come back (to the point where they've needed more work) since the procedure, perhaps the ones that didn't have it that bad to begin with. i don't know, I'm just speculating.
I know how frightening it is going ahead with something like this (oh how I know). the best thing is to make an appointment to see dr. Poe and talk to him about it. i can only tell you about my experience, but I know that everyone is slightly different (but the 2 other people I spoke to both said their ears felt "normal", just less PET, like me).
Dr. Poe is very serious about not permanently over correcting the eustachin tube, which I found very reassuring. he prefers that you come back several times if necessary till it's just right, or till the frequency of PET symptoms is reduced enough for you to be able to live with it, than to over correct/block your eustachin tube and leave you with a whole new set of problems.
Dr. Kujawski is a doctor in Geneva who I understand was trained by Dr. Poe in how to perform the same work. They are the only people doing it as far as i know.
Again, I want to tell you that to date, I'm very very pleased with the results and if i could go back in time I wouldn't hesitate to do it again. It really worked out for me. If mine starts to come back too frequently then i won't hesitate to go back and see him again.