Re: PET Patulous eustachian tube - Started new therapy it's working
My name is Michael P and I also have PET. I believe I may have had this condition since Jr. High school yet did not realize I had a condition then since it started when I was very young and assumed I was no different than anyone else until college. I wonder if it may have been caused by use of tetracycline for acne when I was young. Please let me know if you have PET and have used tetracycline when you were a youth. My condition would be considered borderline (I know there is a better medical term) because it is very dependant on my weight. If my weight falls below 180 my tubes start to open and I need to head for the greasiest hamburger place I can find, fast. I find the science to this condition fascinating. If my weight climbs to 195 and I miss a couple meals, the body seems to begin to feed itself on the fat surrounding the eustachian tubes FIRST and will cause the condition. Fasting for my religion becomes more of a sacrifice than for most and intolerable. I guess I will need to see Dr. Poe since I have recently been getting borderline high blood pressure readings so the eating fat therapy does not sound sustainable. I can tell you what to avoid, caffeine, sugar, running excessively and rapid weight loss. If you need a quick but temporary fix you can use a saline sinus cleanse from the drug store. I am also interested in a long term solution. It sounds like Dr. Poe has a procedure that undoes the defect in the eustachian tube where the opening is too large by creating a pocket and filling it with some material. I am a web developer and if I get some help I plan to post what I discover on a web site to help other sufferers of this condition get educated and to find a good doctor and get the treatment they need. I feel sorry for the patient that has this condition permanently and would hope they see Dr. Poe as soon as possible. I read somewhere that Dr. Poe is training other Drs in his procedure so he is not the only one doing them. Good luck and God Bless. Remember there is always a reason for our trials, it just might take some time to realize what that purpose might be. It certainly adds humility and thankfulness for what we do have going for us.
Re: PET Patulous eustachian tube - Started new therapy it's working
I am commenting after reading a post on another thread. I made a commitment to myself: If this worked, I would try to reinforce this theory and try to get the word out to people suffering with PET issues.
I have been suffering with the symptoms that you describe for approximately 2 years. I stumbled across a post on a different web site that drew a correlation to PET and a probable sleep disorder. The post also correlated TMJ/Bruxing (Teeth grinding) and Acid reflux as common symptoms that commonly pop up with PET. I know this sounds strange but the logic that followed made a huge amount of sense. I will try to lay it out for you and to let you know that I had all of them. PET is only a final symptom of a journey of unintended consequences that got me to this point.
The logic goes something like this:
1.) Poor sleep (failure to transition through Stage 2 sleep to REM) can cause many health problems … in this case PET (Patulous Eustachian Tubes).
2.) Bad habits develop...Stage 2 sleep is where all of the bad habits develop. Most/All (as I understand) teeth grinding/teeth clenching/saliva swallowing/snoring/tossing & turning happens in stage 2 sleep. I did not even think I had a sleeping disorder... I seemed to fall asleep easily, but awoke easily. Note: If you stay in stage 2 sleep all nite, you have a sleep disorder.
3.) Bad habits lead to more bad habits: The teeth grinding causes excess saliva leading to Acid Reflux on an empty stomach. If your like me, you are probably on Prevacid or another PPI med ... getting off this will be another challenge.
4.) Unintended Consequences....The teeth grinding/clenching over conditions the jaw muscles which pinch the eustachian tubes. Installing/purchasing a nite guard only encourages more biting and saliva generation... something like a dog with a stick in it's mouth.
5.) The feedback loop starts ... The grinding and the Acid reflux keeps the poor paitent in Stage 2 sleep all nite.... and the problem gets worse .. if it is only in one ear, the symptoms will eventually spread into the other ear. My ears would also pop in an out during the day when under stress (clenching my jaw)
6.) The cure ... Quit grinding your teeth / shed the nite guard and get through stage 2 sleep as quickly as possible. Essentially let the jaw muscles, built up over the past 10 years chewing on my nite guard, atrophy.
I left the nite guard on the bed stand and began taking herbal supplement 5-htp which was recommended on another thread (designed to boost serotonin levels: I could just have low serotonin). It has been two weeks ... still can tell i’m grinding some, but the symptoms are beginning to fade.
Note: I am not a doctor and I am sure there are many holes in the logic, but it appears to be working. I went to many doctors (ENTs) and they all looked at me and told me there was really nothing they could do. I was convinced I would have to learn how to cope with this (PET) or go insane. Hopefully, I will not have to do either. It probably would not hurt any of us to go to a sleep clinic and validate some of this.
Good Luck, I think there is hope.
Jeff
Last edited by moderator2; 03-10-2008 at 06:20 AM.
Reason: posted commercial website
Re: PET Patulous eustachian tube - Started new therapy it's working
UPDATE: Went to see new Dr in Perth Australia
Dr Atlas was brilliant, he totally understood me and said how ridiculous it was to suggest me putting on weight, my problem is clearly not sudden weight lose due to the fact that weight gain makes no difference, anyway he asked how it affected my life and I burst into tears poor man, I guess that answered his question, he mentioned Dr Poe in the US before I has a chance to and suggested laser surgery on the ET tube which will be done through my nose, so no cutting!!! and depending on how bad the ET tube is he may inject some fat, he says this is what Dr Poe has documented and is sending me a paper written by Dr Poe on the procedure, the risks are that my ear may be over corrected and I have a blocked ET tube but I am willing to take that risk.. He has done this procedure for others too which is good.. He sent me for a CT scan too when I mentioned that my Mum and Granddad had ear problems in their left ear too, but he thinks my results will come back fine, he seems to think it's something I was born with and it has progressed over time..
He was so lovely and took heaps of time with me, such a different experience from the other ET doctors I have seen, it pays to wait and pay the big bucks for sure...
So next step is they get my CT results and then ring me with surgery dates, hopefully not too long a wait ( I will have to put the babies off a bit )..
Also they did a hearing test before I went in and it was normal, my left ear being better than my right!!!!
Thanks for all your support through this I hope it works out I will keep you posted.
Re: PET Patulous eustachian tube - Started new therapy it's working
Petear, thanks for posting updates, and please continue! At this point I am working on controlling the diet (trying out the Specific Carbohydrate Diet for the LPR acid reflux), and the true test will be this summer when the DC humidity hits again. I would like to move to a cooler/drier climate, since that seems to help. May also start thinking about the surgery option again, though I'd love to be able to control this at the root of the problem if possible.
Re: PET Patulous eustachian tube - Started new therapy it's working
update::: I just found out I will be also be having an alloderm graft in my et tube, look it up it sounds great.. Surgery a week on Monday will hopefully be home tuesday and I will write a message then for you all...
Re: PET Patulous eustachian tube - Started new therapy it's working
Hi PET Ear.. I hope your surgery went great. Just wanted to know if Dr.Atlas injected fat through the nose or through the mouth? Its surprising how this can be done through the nose.
I am sure you'll tell us all about your surgery anyway but just wanted to ask you this questions anyway!!
-KSM
Re: PET Patulous eustachian tube - Started new therapy it's working
I have just come across this message board and I'm so happy to know there are other people out there like me! I also have PET and I've never met anyone else who does. No one seems to understand what we go through every minute of every day, so it's been so nice to read your messages and know how you feel, and to know that you know how I feel. I've had it now for several years. I really don't know when it started, but I was diagnosed with Meniere's disease maybe 10 years ago. The Meniere's isn't bad. I have an episode maybe once or twice every 6 months or more. Somewhere between then and a couple of years ago, the PET started. It's mostly in my left ear, but my right ear seems to try to keep up with my left. I have a lot of popping and I sometimes hear fantom sounds. Symptoms are relieved when I have a cold or if I'm sleeping. Usually lying down and sort of scrunching up my neck puts pressure on the E tubes and helps a ton. Unfortunately, you can't really live much of a life by sleeping or lying down! If my tubes are open everything is airy, I can hear myself breathing, and my voice is loud in my head. Sometimes it sounds like I'm actually breathing through my ears instead of my nose or mouth. Lots of times I can hear my pulse in my head. Plugging my nose and sniffing closes the tubes and brings wonderful relief until I swallow, yawn, talk, or inhale again. It's extremely annoying and debilitating.
I talked with an ENT here in Utah who put me on Iodine drops (SSKI) and a nasal spray that had estrogen in it, I think. They didn't help at all. He said the next step would be injecting gel into the E tubes. The gel would last for about 3 months. He said that if the gel injections worked, they could try injecting gelfoam that would last longer, a year maybe. If that didn't work the next step would be surgery where they close the E tube permanently. This would require tubes inserted which fall out after a year, and having the tubes put in again every year.
I'm extremely curious to know if surgury works. I'm not to the point where I feel like my life is over, but lately I see myself going down that road. It's getting harder and harder to put myself in social situations because the noise level is always so high and the popping in my head is so bothersome. Sometimes it's all I can think about and I'm forced to stay at home where it's quiet. I do find relief whenever I am able to focus on other things...it takes my mind off of it and it's like it's not a problem for a little while. But when I'm thinking "Do I go spend time with friends or stay home because my ears are driving me crazy?" that's not a decision people should have to make. I'm sure you all understand! Keep up your posts and I'm very interested in sharing tips and experiences. Thank you so much for letting me know you all are out there!
Re: PET Patulous eustachian tube - Started new therapy it's working
Hi Guys
I haven't had the surgery yet I go on Monday so I will keep you updated..
I'm really glad I'm getting the alloderm graft rather than fat, as fat would eventually be absorbed by the body, alloderm is like skin and will grow and become part of my ET tube, hopefully closing it up a bit.. Ask your doctors about it???
Re: PET Patulous eustachian tube - Started new therapy it's working
hi petear,
Isn't Alloderm , skin taken from your own body? Or is it some artificial material.
Just curious. And will they inject it through your nose or your mouth?
-KSM
Re: PET Patulous eustachian tube - Started new therapy it's working
Quote:
Originally Posted by KSM79
hi petear,
Isn't Alloderm , skin taken from your own body? Or is it some artificial material.
Just curious. And will they inject it through your nose or your mouth?
-KSM
it's made from doner skin cells so not my skin and it's not artificial, it's dried or something and when grafted the blood vessels expand and join with mine to become new skin, if you look it up it will explain it better, apparently it's more succesful than using your own skin as your own skin requires more than one stage of surgery or something like that... sounds promising though...
They will go through my nose with a mini camera so I expect my nose will be a bit sore after, I will let you know anyway...
Re: PET Patulous eustachian tube - Started new therapy it's working
Quote:
Originally Posted by AlyseL
Have any of you tried PatulEnd or know of someone who has? If so, does it work? How effective is it and is it worth it? Thank you!
Yes I have, the first time it worked well but after not so well and it stings like buggery... I was also a bit concerned as to whether the ingredients may in the long term cause more problems by the way it burns so much...
Re: PET Patulous eustachian tube - Started new therapy it's working
Hi PetEar..Have u had your surgery? We are all dying to hear about the results. Please do so when you get a chance.
Looking forward to hearing from you.
Re: PET Patulous eustachian tube - Started new therapy it's working
Hi
I'm back home, it's too soon to tell if it's been a success.
So far my ear isn't blocked which I thought might happen but the alloderm graft takes a few weeks to integrate properly so it may block up a bit later, the surgery was done through my nose so my nostrils and sinuses are sore and swollen and my throat is a bit sore but that's all the pain... Dr Atlas has done the same surgery as Dr Poe just using alloderm instead of cartlidge and I don't have a grommet (tube) in my ear as he said Dr Poe only uses them for patients who have to fly home.... So I just need to heal a bit and get back to normal life and then I will know if it's worked.. But I do feel a lot better than I thought I would after surgery...Dr Atlas also said it was a very difficult surgery so I can see why a lot of ENT's may avoid it, hence finding a great Dr is the answer.
Re: PET Patulous eustachian tube - Started new therapy it's working
Hi PetEar..Glad that you're feeling better. I just wanted to know if Dr.Atlas injected Collagen also in your ET's.
How is your surgery different than injecting fat or Collagen into your ET's?
I am planning on getting the fat injected into my ET's..just wanted to ask you if you spoke to Dr.Atlas regarding that.
Please let me know if you have any information.
Thanks
KSM
Re: PET Patulous eustachian tube - Started new therapy it's working
No he didn't inject fat or collegen, I was going to get fat injected a few years ago and decided against it, the reason is that fat will eventually be absorbed by the body and you will be back at square one, with the alloderm graft, alloderm is like doner skin so it will eventually graft to your own skin and become permanent, also if you get a substance injected into your et tube your blocking it up, whereas a graft isn't blocking it up, it is possible the graft will grow to block the tube it's a risk, but it's not injected in a way to block it from the start if you get what I mean... Look up alloderm..
Re: PET Patulous eustachian tube - Started new therapy it's working
Hmm..yeah it does make sense. i am sure it was an expensive surgery. I want to ask you how much it cost you but you cannot give out that information on here. But I know how much Dr.Poe costs..i am guessing you do as well? So is it Dr.Atlas as expensive as Poe?
I hope you recover completely and the PET is gone.
Keep us posted
Re: PET Patulous eustachian tube - Started new therapy it's working
I have private health insurance so most of it was covered, the gap to pay is a couple of grand. In australia we also have medicare which covers some medical expenses, I'm not sure how it works in the states...
good luck!
