FuLL4290
01-08-2007, 05:35 PM
Deleted message.
Sponsor
lib
01-08-2007, 06:19 PM
middle ear myoclons, muscle spasm of either tensor tympani or stapedial or both, look up these conditions.
lib
lib
winterj
01-09-2007, 04:18 PM
LIB - are you the same Lib who wrote during your time leading up to surgery w/ Dr. Poe. Was curious how your PET is doing since the surgery? I am still in the initial stage of trying to get my doctor to refer me to Dr. Poe.
Thanks,
Jenny
Thanks,
Jenny
singingear
01-09-2007, 05:50 PM
I have the same type problem....plus some PET??? following a cold and alot of stress.... if that is what it is...seems like abit of what LIB has..although....maybe not...hard to tell... but I see alot of different diagnosis here...and not everyone with the same symptoms have the same diagnosis...I have exhausted myself on the internet.. too readily appllied my symptoms to others diagnosis'....prob not a good idea.
..I will have to wait it out...see more docs and/or live with these new horrible ear problems.. I have no choice...the docs aren't that great...I've been to MORE than many...and these diagnosis are sketchy at best. Docs can't figure out the cure for the common cold!!!! remember this!!! Different docs and specialists have many diferent views, opinions and form of treatment.its called "PRACTICING medicine" for a reason. Make sure you see a doc and make your own determination. as well Don't get scared about what you read here!! and on the INTERNET!!! Make a place in your heart/ mind to understand the more you think and obsess the worse these things are.I've left many posts that have been unanswered here. thanks for the time. Good luck to everyone.
..I will have to wait it out...see more docs and/or live with these new horrible ear problems.. I have no choice...the docs aren't that great...I've been to MORE than many...and these diagnosis are sketchy at best. Docs can't figure out the cure for the common cold!!!! remember this!!! Different docs and specialists have many diferent views, opinions and form of treatment.its called "PRACTICING medicine" for a reason. Make sure you see a doc and make your own determination. as well Don't get scared about what you read here!! and on the INTERNET!!! Make a place in your heart/ mind to understand the more you think and obsess the worse these things are.I've left many posts that have been unanswered here. thanks for the time. Good luck to everyone.
lib
01-09-2007, 10:38 PM
LIB - are you the same Lib who wrote during your time leading up to surgery w/ Dr. Poe. Was curious how your PET is doing since the surgery? I am still in the initial stage of trying to get my doctor to refer me to Dr. Poe.
Thanks,
Jenny
jenny,
dr poe is wonderful, he actually figured out i had myoclonus after we tried the p e t surgery. if you read all of my posts it will explain how we came to the conclusion and the surgeries i had to sever the offending tendons.
myclonus in my case was causing p e t type symptoms, and can cause very similar symptoms.
what are your symptoms?
lib
Thanks,
Jenny
jenny,
dr poe is wonderful, he actually figured out i had myoclonus after we tried the p e t surgery. if you read all of my posts it will explain how we came to the conclusion and the surgeries i had to sever the offending tendons.
myclonus in my case was causing p e t type symptoms, and can cause very similar symptoms.
what are your symptoms?
lib
winterj
01-10-2007, 12:19 PM
Hi lib, I read through a lot of your posts leading up to your surgery w/ Dr. Poe...felt like I was following a soap opera, and then I couldn't find the follow-up posts!
I am located in Northern VA, and my allergist just referred me to Dr. Fitzgerald with Capital Ear Group. I have the feeling and sound of air blowing in my ear, and my allergist has watched it happen through my ear and confirmed that it opens or closes differently from my other ear which is (more) normal. And I also have autophony. This is all intermittent, with some days worse than others, especially warm, humid days, which is all summer, most of spring and fall, and a lot of winter in this area. When my nose is stuffed up, it happens more, so I drink a lot of water, but that's only a temporary fix. Even though claritin-d is supposed to make it worse, it helps decongest my nose a little bit, helps w/ the PND, and doesn't seem to affect the ear problem otherwise. It's worse in the mornings when I first get up, so my doc suggested using an airplane pillow to prop my head up more. The symptoms are relieved by tilting my head or putting my head between my knees.
I've tried Patul-End from Dr. B in Calif, but I have a hard time getting it into my eustachian tube, so that isn't really helping. When I get tired of drinking water, or it's just not practical, I spray lots of saline into my nose, but that's not the most reliable solution either, and it gives me a headache when I sniff too much. Also makes my nose run, but that's ok, cause that's when I breathe best and have the least ear problems.
I had my deviated septum fixed with Dr. Marion, but that hardly helped. Since he couldn't find anything else "wrong", he just said if I know other climates that bother me less, then I should just move. And I'm ready to do it if it works.
Sorry for such a long post!
-Jenny
jenny,
dr poe is wonderful, he actually figured out i had myoclonus after we tried the p e t surgery. if you read all of my posts it will explain how we came to the conclusion and the surgeries i had to sever the offending tendons.
myclonus in my case was causing p e t type symptoms, and can cause very similar symptoms.
what are your symptoms?
lib
I am located in Northern VA, and my allergist just referred me to Dr. Fitzgerald with Capital Ear Group. I have the feeling and sound of air blowing in my ear, and my allergist has watched it happen through my ear and confirmed that it opens or closes differently from my other ear which is (more) normal. And I also have autophony. This is all intermittent, with some days worse than others, especially warm, humid days, which is all summer, most of spring and fall, and a lot of winter in this area. When my nose is stuffed up, it happens more, so I drink a lot of water, but that's only a temporary fix. Even though claritin-d is supposed to make it worse, it helps decongest my nose a little bit, helps w/ the PND, and doesn't seem to affect the ear problem otherwise. It's worse in the mornings when I first get up, so my doc suggested using an airplane pillow to prop my head up more. The symptoms are relieved by tilting my head or putting my head between my knees.
I've tried Patul-End from Dr. B in Calif, but I have a hard time getting it into my eustachian tube, so that isn't really helping. When I get tired of drinking water, or it's just not practical, I spray lots of saline into my nose, but that's not the most reliable solution either, and it gives me a headache when I sniff too much. Also makes my nose run, but that's ok, cause that's when I breathe best and have the least ear problems.
I had my deviated septum fixed with Dr. Marion, but that hardly helped. Since he couldn't find anything else "wrong", he just said if I know other climates that bother me less, then I should just move. And I'm ready to do it if it works.
Sorry for such a long post!
-Jenny
jenny,
dr poe is wonderful, he actually figured out i had myoclonus after we tried the p e t surgery. if you read all of my posts it will explain how we came to the conclusion and the surgeries i had to sever the offending tendons.
myclonus in my case was causing p e t type symptoms, and can cause very similar symptoms.
what are your symptoms?
lib
lib
01-10-2007, 10:13 PM
Hi lib, I read through a lot of your posts leading up to your surgery w/ Dr. Poe...felt like I was following a soap opera, and then I couldn't find the follow-up posts!
I am located in Northern VA, and my allergist just referred me to Dr. Fitzgerald with Capital Ear Group. I have the feeling and sound of air blowing in my ear, and my allergist has watched it happen through my ear and confirmed that it opens or closes differently from my other ear which is (more) normal. And I also have autophony. This is all intermittent, with some days worse than others, especially warm, humid days, which is all summer, most of spring and fall, and a lot of winter in this area. When my nose is stuffed up, it happens more, so I drink a lot of water, but that's only a temporary fix. Even though claritin-d is supposed to make it worse, it helps decongest my nose a little bit, helps w/ the PND, and doesn't seem to affect the ear problem otherwise. It's worse in the mornings when I first get up, so my doc suggested using an airplane pillow to prop my head up more. The symptoms are relieved by tilting my head or putting my head between my knees.
I've tried Patul-End from Dr. B in Calif, but I have a hard time getting it into my eustachian tube, so that isn't really helping. When I get tired of drinking water, or it's just not practical, I spray lots of saline into my nose, but that's not the most reliable solution either, and it gives me a headache when I sniff too much. Also makes my nose run, but that's ok, cause that's when I breathe best and have the least ear problems.
I had my deviated septum fixed with Dr. Marion, but that hardly helped. Since he couldn't find anything else "wrong", he just said if I know other climates that bother me less, then I should just move. And I'm ready to do it if it works.
Sorry for such a long post!
-Jenny
hi jenny,
i also live in nova...springfield.
i hate to share my horror with you but i can tell you i have seen dr. fitzgerald more than once, he was one of the worst drs. i had seen, in fact, he basically told me i was crazy and needed meds. he was the biggest waste of my time, and insurance money. so with that, i recommend you see dr sismanis in richmond or dr poe in boston. is dr marion here in west springfield? i saw dr oppenhiem, he came close but was of no help, i believe they are in the same practice. i have heard good things about marion and noses.
i had the wind noise and they could see my eardrum flutter, it was from the myoclonus, but at first dr poe and i thought it to be p e t, as it sure looked that way, but after surgery he could see it move and we knew my etube was swollen shut and thats when dr poe said he believed this was muscular and told me what i needed to do next....he is AMAZING, does not give up and keeps his thinking cap on. i came back to va and went back to hopkins......where i got no where.....i was talking with dr poe on the phone regularly and was planning a trip back to boston when i stumbled upon dr sismanis' name.....went to see him and the rest is history....he is like poe, amazing, compassionate, careing and educated....so he severed the tendons....dr poe said i sounded so much better when i called him last.....thats a dr that pays attention and really cares.
so my advice, call your allergist, who is it by the way? and ask to see sismanis.
also usually p e t is better when your stuffed up.....interesting .
where are you in va?
lib
I am located in Northern VA, and my allergist just referred me to Dr. Fitzgerald with Capital Ear Group. I have the feeling and sound of air blowing in my ear, and my allergist has watched it happen through my ear and confirmed that it opens or closes differently from my other ear which is (more) normal. And I also have autophony. This is all intermittent, with some days worse than others, especially warm, humid days, which is all summer, most of spring and fall, and a lot of winter in this area. When my nose is stuffed up, it happens more, so I drink a lot of water, but that's only a temporary fix. Even though claritin-d is supposed to make it worse, it helps decongest my nose a little bit, helps w/ the PND, and doesn't seem to affect the ear problem otherwise. It's worse in the mornings when I first get up, so my doc suggested using an airplane pillow to prop my head up more. The symptoms are relieved by tilting my head or putting my head between my knees.
I've tried Patul-End from Dr. B in Calif, but I have a hard time getting it into my eustachian tube, so that isn't really helping. When I get tired of drinking water, or it's just not practical, I spray lots of saline into my nose, but that's not the most reliable solution either, and it gives me a headache when I sniff too much. Also makes my nose run, but that's ok, cause that's when I breathe best and have the least ear problems.
I had my deviated septum fixed with Dr. Marion, but that hardly helped. Since he couldn't find anything else "wrong", he just said if I know other climates that bother me less, then I should just move. And I'm ready to do it if it works.
Sorry for such a long post!
-Jenny
hi jenny,
i also live in nova...springfield.
i hate to share my horror with you but i can tell you i have seen dr. fitzgerald more than once, he was one of the worst drs. i had seen, in fact, he basically told me i was crazy and needed meds. he was the biggest waste of my time, and insurance money. so with that, i recommend you see dr sismanis in richmond or dr poe in boston. is dr marion here in west springfield? i saw dr oppenhiem, he came close but was of no help, i believe they are in the same practice. i have heard good things about marion and noses.
i had the wind noise and they could see my eardrum flutter, it was from the myoclonus, but at first dr poe and i thought it to be p e t, as it sure looked that way, but after surgery he could see it move and we knew my etube was swollen shut and thats when dr poe said he believed this was muscular and told me what i needed to do next....he is AMAZING, does not give up and keeps his thinking cap on. i came back to va and went back to hopkins......where i got no where.....i was talking with dr poe on the phone regularly and was planning a trip back to boston when i stumbled upon dr sismanis' name.....went to see him and the rest is history....he is like poe, amazing, compassionate, careing and educated....so he severed the tendons....dr poe said i sounded so much better when i called him last.....thats a dr that pays attention and really cares.
so my advice, call your allergist, who is it by the way? and ask to see sismanis.
also usually p e t is better when your stuffed up.....interesting .
where are you in va?
lib
singingear
01-10-2007, 10:18 PM
winterj,
as far as I know congestion helps PET ???. Certain nose drops such as premarin irritate the sinuses & ET forcing closure of the ET.....what a cruel joke. I want congestion...funny but not smoking has helped quite a bit. If you smoke it helps to stop....who knows with all those chemicals in cigaretttes. My ears feels clogged mainly now...like cloudy...especially when i swallow.....NOT normal at all.
as far as I know congestion helps PET ???. Certain nose drops such as premarin irritate the sinuses & ET forcing closure of the ET.....what a cruel joke. I want congestion...funny but not smoking has helped quite a bit. If you smoke it helps to stop....who knows with all those chemicals in cigaretttes. My ears feels clogged mainly now...like cloudy...especially when i swallow.....NOT normal at all.
winterj
01-11-2007, 10:34 AM
lib and singingear,
Thanks for writing back :) I'm in W. Springfield too! How funny...
I don't smoke, but I do cough a lot - think I just have very sensitive system. As for the stuffed nose, it feels like air won't go through the nose and tubes, and that's connected to the ear problems somehow.
Dr. Marion is in Seven Corners & W. Springfield - I think he works w/ Dr. Oppenheim because that name sounds familiar. Dr. Marion did a good job w/ my surgery, but he wasn't very helpful w/ the e-tubes - basically said there's nothing physically wrong with my ears, and *unfortunately*, they weren't acting up when he looked into them, and I think he thought I was crazy as well.
My allergist, Dr. Hurtado in Arlington, is the most helpful and can actually see the problem. Unfortunately, it's not his area, so he keeps referring me to other doctors - he wants to be sure there's no other way to fix this before he sends me off for surgery again (even though I feel like I've tried everything!).
Which doctor referred you to Dr. Poe? I'll look into seeing Dr. Sismanis too.
Thanks for writing back :) I'm in W. Springfield too! How funny...
I don't smoke, but I do cough a lot - think I just have very sensitive system. As for the stuffed nose, it feels like air won't go through the nose and tubes, and that's connected to the ear problems somehow.
Dr. Marion is in Seven Corners & W. Springfield - I think he works w/ Dr. Oppenheim because that name sounds familiar. Dr. Marion did a good job w/ my surgery, but he wasn't very helpful w/ the e-tubes - basically said there's nothing physically wrong with my ears, and *unfortunately*, they weren't acting up when he looked into them, and I think he thought I was crazy as well.
My allergist, Dr. Hurtado in Arlington, is the most helpful and can actually see the problem. Unfortunately, it's not his area, so he keeps referring me to other doctors - he wants to be sure there's no other way to fix this before he sends me off for surgery again (even though I feel like I've tried everything!).
Which doctor referred you to Dr. Poe? I'll look into seeing Dr. Sismanis too.
winterj
01-11-2007, 10:41 AM
Lib - does Dr. Sismanis do the same surgeries as Dr. Poe, or does he have a different approach?
Singingear - where are you located. I apologize if you said it in another post...short-term memory!
Singingear - where are you located. I apologize if you said it in another post...short-term memory!
singingear
01-11-2007, 11:55 AM
covina california, east of los angeles
lib
01-11-2007, 08:50 PM
only dr poe can do the p e t surgery, dr sismanis did my surgery for the myoclonus.
i did not need a referal to poe, my ins did not require it.
where in west springfield are you? i live off of the ffx co pkwy.
see sismanis for now, he is in richmond and if you had to pay out of pocket it would not be a ton, but he saw my moving eardrums so he is familiar. can you describe your symptoms in detail and describe the autophney as best as possible.
lib
i did not need a referal to poe, my ins did not require it.
where in west springfield are you? i live off of the ffx co pkwy.
see sismanis for now, he is in richmond and if you had to pay out of pocket it would not be a ton, but he saw my moving eardrums so he is familiar. can you describe your symptoms in detail and describe the autophney as best as possible.
lib
winterj
01-11-2007, 09:45 PM
Lib,
'm off the Parkway too, kinda near Springfield Mall. Do you think it's worth it for me to see Dr. Sismanis if I have PET? Or since the symptoms are so similar, it might actually be Myoclonus? Also, did you mean for me to describe my symptoms on here, or to the doc?
It sounds like Dr. Poe needs referrals because he has a very busy schedule - the referral has to come from the doctor diagnosing the problem. Dr Sismanis' office asked me for the same thing when I called today, even though my insurance doesn't require it. My allergist's office called it a "Prescription Referral".
SINGINGEAR - there's a doctor in southern California - Dr. Bartholomew (sp?) - the one who came up w/ PatulEnd.
'm off the Parkway too, kinda near Springfield Mall. Do you think it's worth it for me to see Dr. Sismanis if I have PET? Or since the symptoms are so similar, it might actually be Myoclonus? Also, did you mean for me to describe my symptoms on here, or to the doc?
It sounds like Dr. Poe needs referrals because he has a very busy schedule - the referral has to come from the doctor diagnosing the problem. Dr Sismanis' office asked me for the same thing when I called today, even though my insurance doesn't require it. My allergist's office called it a "Prescription Referral".
SINGINGEAR - there's a doctor in southern California - Dr. Bartholomew (sp?) - the one who came up w/ PatulEnd.
lib
01-11-2007, 11:18 PM
Lib,
'm off the Parkway too, kinda near Springfield Mall. Do you think it's worth it for me to see Dr. Sismanis if I have PET? Or since the symptoms are so similar, it might actually be Myoclonus? Also, did you mean for me to describe my symptoms on here, or to the doc?
It sounds like Dr. Poe needs referrals because he has a very busy schedule - the referral has to come from the doctor diagnosing the problem. Dr Sismanis' office asked me for the same thing when I called today, even though my insurance doesn't require it. My allergist's office called it a "Prescription Referral".
SINGINGEAR - there's a doctor in southern California - Dr. Bartholomew (sp?) - the one who came up w/ PatulEnd.
jenny,
i am off of modisto, near huntsman.
i think it could be myoclonus, that why i asked for the detailed symptoms, as little or big as they are just as detailed as possible.
i did not get a referral for either dr. and i have taken a canadian to sismanis with no refferal. but maybe your allergist could do this. i just called and made my appointment, the another dr i was seeing contacted poe and discussed my case, but i already had the appt. with poe before i saw this dr. i was trying any one i could because poe books so far out. and if dr sismanis thinks its p e t he could refer you to poe.
maybe we could compare symptoms soon...
let me know!
lib
'm off the Parkway too, kinda near Springfield Mall. Do you think it's worth it for me to see Dr. Sismanis if I have PET? Or since the symptoms are so similar, it might actually be Myoclonus? Also, did you mean for me to describe my symptoms on here, or to the doc?
It sounds like Dr. Poe needs referrals because he has a very busy schedule - the referral has to come from the doctor diagnosing the problem. Dr Sismanis' office asked me for the same thing when I called today, even though my insurance doesn't require it. My allergist's office called it a "Prescription Referral".
SINGINGEAR - there's a doctor in southern California - Dr. Bartholomew (sp?) - the one who came up w/ PatulEnd.
jenny,
i am off of modisto, near huntsman.
i think it could be myoclonus, that why i asked for the detailed symptoms, as little or big as they are just as detailed as possible.
i did not get a referral for either dr. and i have taken a canadian to sismanis with no refferal. but maybe your allergist could do this. i just called and made my appointment, the another dr i was seeing contacted poe and discussed my case, but i already had the appt. with poe before i saw this dr. i was trying any one i could because poe books so far out. and if dr sismanis thinks its p e t he could refer you to poe.
maybe we could compare symptoms soon...
let me know!
lib
winterj
01-12-2007, 11:53 AM
jenny,
i am off of modisto, near huntsman.
i think it could be myoclonus, that why i asked for the detailed symptoms, as little or big as they are just as detailed as possible.
i did not get a referral for either dr. and i have taken a canadian to sismanis with no refferal. but maybe your allergist could do this. i just called and made my appointment, the another dr i was seeing contacted poe and discussed my case, but i already had the appt. with poe before i saw this dr. i was trying any one i could because poe books so far out. and if dr sismanis thinks its p e t he could refer you to poe.
maybe we could compare symptoms soon...
let me know!
lib
Sure, sounds good to me. Sounds like we are really close - I am between Sydenstricker and Rolling. When I called to make an appt w/ Dr. Poe, the receptionist said I would need a written referral letter from my doctor diagnosing the problem first; same thing for Dr. Sismanis. Maybe more and more people with these problems are coming out of the woodwork, which would be a good thing. I've also met someone in Fredericksburg who had surgery with Dr. Poe - I think he was the first or one of the first. He said surgery helped a lot, but he still occasionally has symptoms.
So right now it is humid outside, or maybe it's the air pressure changing since it's supposed to rain. Because of that, my nose feels stuffed, and when I swallow, all of a sudden when I breathe I feel and hear air in my right ear, almost as if it's blocked and the air won't go all the way through. So I'm tilting my head to clear it, but that gets uncomfortable after a while. So I'm also drinking lots of water, which thins everything out and makes my nose feel like I can get air through, which in turn helps my ear. When I talk, the "air" also moves with my voice, and I can hear it in my ear, like a simultaneous echo. My symptoms are also set in motion when I exercise, even just fast or hilling walking.
i am off of modisto, near huntsman.
i think it could be myoclonus, that why i asked for the detailed symptoms, as little or big as they are just as detailed as possible.
i did not get a referral for either dr. and i have taken a canadian to sismanis with no refferal. but maybe your allergist could do this. i just called and made my appointment, the another dr i was seeing contacted poe and discussed my case, but i already had the appt. with poe before i saw this dr. i was trying any one i could because poe books so far out. and if dr sismanis thinks its p e t he could refer you to poe.
maybe we could compare symptoms soon...
let me know!
lib
Sure, sounds good to me. Sounds like we are really close - I am between Sydenstricker and Rolling. When I called to make an appt w/ Dr. Poe, the receptionist said I would need a written referral letter from my doctor diagnosing the problem first; same thing for Dr. Sismanis. Maybe more and more people with these problems are coming out of the woodwork, which would be a good thing. I've also met someone in Fredericksburg who had surgery with Dr. Poe - I think he was the first or one of the first. He said surgery helped a lot, but he still occasionally has symptoms.
So right now it is humid outside, or maybe it's the air pressure changing since it's supposed to rain. Because of that, my nose feels stuffed, and when I swallow, all of a sudden when I breathe I feel and hear air in my right ear, almost as if it's blocked and the air won't go all the way through. So I'm tilting my head to clear it, but that gets uncomfortable after a while. So I'm also drinking lots of water, which thins everything out and makes my nose feel like I can get air through, which in turn helps my ear. When I talk, the "air" also moves with my voice, and I can hear it in my ear, like a simultaneous echo. My symptoms are also set in motion when I exercise, even just fast or hilling walking.
winterj
01-12-2007, 11:57 AM
wow, i am reading about myoclonus now...sounds very similar to PET! Guess I'll ask my doctors about that too.
singingear
01-12-2007, 01:28 PM
thanks for tip about Bartholomew ....there are alot of conditions that can cause autophony....and finding zebra's can be hard. I am unclear on my own diagnosis. My specialist in LA says he has a client with PET...he only get symptoms when he plays tennis. Lucky him....
The symptoms of PET is often treated by irritating the sinuses with PREMARIN nose drops. It is a female hormone. Cure ?
When I was 18 years old... in my right ear I also had a rare condition known as bells palsey. Not many docs knew or still know about it's cause...cure etc. It related to the herpes/chicken pox virus in the ear area. It caused facial paralysis in me .like stroke like. I had it for 3 months straight....with a paralysed face..took steroids..and massaged my face rigoursly..also had electrical stimulation for the nerves...no one knows for sure ....all these things are STRESS related...for me...somehow my Open/Clogged ETubes seems related to a virus somehow. It is just my intution...especially since it followed a cold...in early 2005 2years ago I was feeling fine... Then I got a sinus and ear infection. I have headaches since...CT scans, MRI's etc..OSA tests (mild)...then when I thought it was bad I got a cold this last Nov....now on top of all that I have PET, Mylocous, Extremely sensitive hearing, clogged, cloudy, painful, pressure, neck pain, occassional tittinus...
sorry for the rant...but it's a bit much. thanks
The symptoms of PET is often treated by irritating the sinuses with PREMARIN nose drops. It is a female hormone. Cure ?
When I was 18 years old... in my right ear I also had a rare condition known as bells palsey. Not many docs knew or still know about it's cause...cure etc. It related to the herpes/chicken pox virus in the ear area. It caused facial paralysis in me .like stroke like. I had it for 3 months straight....with a paralysed face..took steroids..and massaged my face rigoursly..also had electrical stimulation for the nerves...no one knows for sure ....all these things are STRESS related...for me...somehow my Open/Clogged ETubes seems related to a virus somehow. It is just my intution...especially since it followed a cold...in early 2005 2years ago I was feeling fine... Then I got a sinus and ear infection. I have headaches since...CT scans, MRI's etc..OSA tests (mild)...then when I thought it was bad I got a cold this last Nov....now on top of all that I have PET, Mylocous, Extremely sensitive hearing, clogged, cloudy, painful, pressure, neck pain, occassional tittinus...
sorry for the rant...but it's a bit much. thanks
winterj
01-12-2007, 02:49 PM
SingingEar - how do you differentiate between the PET and the Myoclonus? The symptoms sounded so similar on the site I was reading!
Dr. B. is the one w/ the Ear Foundation in Santa Barbara who came up w/ the Patul-End spray...you've probably seen it on other posts here.
I've read that a lot of people get PET after sinus/ear infection like you said, but i've never had one that i've known of. However, i do get stressed easily, so i wouldn't be suprised if there's a link there. I also think I'm super sensitive to certain things in the environment and that could be one of my causes. Also, I don't know if I have a viral infection, but my lymph node is often swollen when my ear is acting up, and the lymph nodes are related to infections.
Anyways, I feel your pain. I always seem to get the disorders that no-one else has and people never understand my problem!
Dr. B. is the one w/ the Ear Foundation in Santa Barbara who came up w/ the Patul-End spray...you've probably seen it on other posts here.
I've read that a lot of people get PET after sinus/ear infection like you said, but i've never had one that i've known of. However, i do get stressed easily, so i wouldn't be suprised if there's a link there. I also think I'm super sensitive to certain things in the environment and that could be one of my causes. Also, I don't know if I have a viral infection, but my lymph node is often swollen when my ear is acting up, and the lymph nodes are related to infections.
Anyways, I feel your pain. I always seem to get the disorders that no-one else has and people never understand my problem!
lib
01-12-2007, 05:55 PM
Sure, sounds good to me. Sounds like we are really close - I am between Sydenstricker and Rolling. When I called to make an appt w/ Dr. Poe, the receptionist said I would need a written referral letter from my doctor diagnosing the problem first; same thing for Dr. Sismanis. Maybe more and more people with these problems are coming out of the woodwork, which would be a good thing. I've also met someone in Fredericksburg who had surgery with Dr. Poe - I think he was the first or one of the first. He said surgery helped a lot, but he still occasionally has symptoms.
So right now it is humid outside, or maybe it's the air pressure changing since it's supposed to rain. Because of that, my nose feels stuffed, and when I swallow, all of a sudden when I breathe I feel and hear air in my right ear, almost as if it's blocked and the air won't go all the way through. So I'm tilting my head to clear it, but that gets uncomfortable after a while. So I'm also drinking lots of water, which thins everything out and makes my nose feel like I can get air through, which in turn helps my ear. When I talk, the "air" also moves with my voice, and I can hear it in my ear, like a simultaneous echo. My symptoms are also set in motion when I exercise, even just fast or hilling walking.
hi jenny,
your right, we are right next to each other, i live in lake forest, its a neighborhood on huntsman lake.
i also know jim in fredricksburg, we actually went to surgery together in boston when he had his 2nd ear done.
the air moving with your voice sounds like myoclonus, with p e t you hear your voice and breathing in your ear loudly like shouting, like talking in your ear with a megaphone. i had movement, vibrations and and echo effect, but it was not my voice after all it was the ear drum spasming to my voice. does this sound like you?
maybe the starbucks at huntsman?
lib
So right now it is humid outside, or maybe it's the air pressure changing since it's supposed to rain. Because of that, my nose feels stuffed, and when I swallow, all of a sudden when I breathe I feel and hear air in my right ear, almost as if it's blocked and the air won't go all the way through. So I'm tilting my head to clear it, but that gets uncomfortable after a while. So I'm also drinking lots of water, which thins everything out and makes my nose feel like I can get air through, which in turn helps my ear. When I talk, the "air" also moves with my voice, and I can hear it in my ear, like a simultaneous echo. My symptoms are also set in motion when I exercise, even just fast or hilling walking.
hi jenny,
your right, we are right next to each other, i live in lake forest, its a neighborhood on huntsman lake.
i also know jim in fredricksburg, we actually went to surgery together in boston when he had his 2nd ear done.
the air moving with your voice sounds like myoclonus, with p e t you hear your voice and breathing in your ear loudly like shouting, like talking in your ear with a megaphone. i had movement, vibrations and and echo effect, but it was not my voice after all it was the ear drum spasming to my voice. does this sound like you?
maybe the starbucks at huntsman?
lib
lib
01-12-2007, 06:06 PM
thanks for tip about Bartholomew ....there are alot of conditions that can cause autophony....and finding zebra's can be hard. I am unclear on my own diagnosis. My specialist in LA says he has a client with PET...he only get symptoms when he plays tennis. Lucky him....
The symptoms of PET is often treated by irritating the sinuses with PREMARIN nose drops. It is a female hormone. Cure ?
When I was 18 years old... in my right ear I also had a rare condition known as bells palsey. Not many docs knew or still know about it's cause...cure etc. It related to the herpes/chicken pox virus in the ear area. It caused facial paralysis in me .like stroke like. I had it for 3 months straight....with a paralysed face..took steroids..and massaged my face rigoursly..also had electrical stimulation for the nerves...no one knows for sure ....all these things are STRESS related...for me...somehow my Open/Clogged ETubes seems related to a virus somehow. It is just my intution...especially since it followed a cold...in early 2005 2years ago I was feeling fine... Then I got a sinus and ear infection. I have headaches since...CT scans, MRI's etc..OSA tests (mild)...then when I thought it was bad I got a cold this last Nov....now on top of all that I have PET, Mylocous, Extremely sensitive hearing, clogged, cloudy, painful, pressure, neck pain, occassional tittinus...
sorry for the rant...but it's a bit much. thanks
singingear,
i want to point out that both p e t and middle ear myoclonus are very rare.
i have to wonder what the likelyhood of developing both disorders is, i believe one problem is probably to blame, but figuring it out is an adventer.....i know this from my ordeal.
lib
The symptoms of PET is often treated by irritating the sinuses with PREMARIN nose drops. It is a female hormone. Cure ?
When I was 18 years old... in my right ear I also had a rare condition known as bells palsey. Not many docs knew or still know about it's cause...cure etc. It related to the herpes/chicken pox virus in the ear area. It caused facial paralysis in me .like stroke like. I had it for 3 months straight....with a paralysed face..took steroids..and massaged my face rigoursly..also had electrical stimulation for the nerves...no one knows for sure ....all these things are STRESS related...for me...somehow my Open/Clogged ETubes seems related to a virus somehow. It is just my intution...especially since it followed a cold...in early 2005 2years ago I was feeling fine... Then I got a sinus and ear infection. I have headaches since...CT scans, MRI's etc..OSA tests (mild)...then when I thought it was bad I got a cold this last Nov....now on top of all that I have PET, Mylocous, Extremely sensitive hearing, clogged, cloudy, painful, pressure, neck pain, occassional tittinus...
sorry for the rant...but it's a bit much. thanks
singingear,
i want to point out that both p e t and middle ear myoclonus are very rare.
i have to wonder what the likelyhood of developing both disorders is, i believe one problem is probably to blame, but figuring it out is an adventer.....i know this from my ordeal.
lib
singingear
01-12-2007, 10:45 PM
Lib,
I know...2 rare disorders?? ..actually that would make 3 for me...but thats another story. In brief 4 years ago I had a benign but often unheard of tumor removed from my knee. It is called PVNS....talk about horror stories....DO NOT READ ABOUT IT.unless you want to be scared...anyway...very rare. and now this...I should play the lottery with this luck!!
Winterj,
it's hard to tell exactly what condition (IT) is...and I e-mailed santa barb dr today...guess i could try the drops...couldn't hurt but some stinging.
I am very hesitant to be convinced of a diagnosis either way at this point because it was following a cold/virus...lots of stress related to the condition itself and my determination to FIND a diagnosis...
there is too much and not enough information at the same time...PET...or myclonus....both rare..or something else...or a combo.....and there is so much varied opinion ....of course when you hear your own voice in your ear...you gotta wonder..and when certain symptoms match up....what is causing this???? Stress is a factor either way...
I can't have this...I am a singer/songwriter/musician (as a living & love). with PET I am done. so I just can't have it..or it's gotta go away.
I know...2 rare disorders?? ..actually that would make 3 for me...but thats another story. In brief 4 years ago I had a benign but often unheard of tumor removed from my knee. It is called PVNS....talk about horror stories....DO NOT READ ABOUT IT.unless you want to be scared...anyway...very rare. and now this...I should play the lottery with this luck!!
Winterj,
it's hard to tell exactly what condition (IT) is...and I e-mailed santa barb dr today...guess i could try the drops...couldn't hurt but some stinging.
I am very hesitant to be convinced of a diagnosis either way at this point because it was following a cold/virus...lots of stress related to the condition itself and my determination to FIND a diagnosis...
there is too much and not enough information at the same time...PET...or myclonus....both rare..or something else...or a combo.....and there is so much varied opinion ....of course when you hear your own voice in your ear...you gotta wonder..and when certain symptoms match up....what is causing this???? Stress is a factor either way...
I can't have this...I am a singer/songwriter/musician (as a living & love). with PET I am done. so I just can't have it..or it's gotta go away.
lib
01-12-2007, 11:36 PM
singingear....do you hear you voice loud like a megaphone? and your breathing loud like a megaphone?
lib
lib
singingear
01-13-2007, 01:30 PM
I don't know about megaphone volume wise...but if you put your finger in your ear and talk....that is exactly how I hear (autophony)
lib
01-13-2007, 04:09 PM
well that could be from a few different disorders. can you hear your breathing loudly?
singingear
01-14-2007, 04:49 AM
yes somewhat loud ...it drives me batty when it come on.
singingear
01-14-2007, 01:52 PM
lately what happens most is..when i swallow both ears feel extremely cloggy...like the e-tubes move abnormally.....also when I belch (burp)
and the feeling is almost a spasm in both ears...(but when I read about mylocous) it doesn't seem to describe this either...so it really confusing.
I don't know...very strange...trying to describe these symptoms to someone else is sometimes like trying to tell a blind since birth person what purple is.
..not so much autophony in left ear in the last 2 weeks (thank god)...this is my main problem when it happens ...
and the feeling is almost a spasm in both ears...(but when I read about mylocous) it doesn't seem to describe this either...so it really confusing.
I don't know...very strange...trying to describe these symptoms to someone else is sometimes like trying to tell a blind since birth person what purple is.
..not so much autophony in left ear in the last 2 weeks (thank god)...this is my main problem when it happens ...
winterj
01-14-2007, 07:40 PM
hi all,
Today has been miserable for me - very muggy weather out, and i made the mistake of going for a long walk in it - afterwards, my ear wouldn't stop "popping", and my nose was super stuffed, so i drank lots of water and sprayed lots of stuff up my nose - PatuelEnd and lots of saline...of course a lot of it dripped back down my throat, so that's burning now, and I think I'm lightheaded from all the sniffing/sniffling. Ended up canceling my evening plans cause it took my energy away, not to mention it's kinda hard to socialize when your throat's burning and you feel lightheaded.
Anyways, I don't know anymore about what I have, but at least my allergist agreed to the prescription referral for Sismanis. I say I feel "air", but I don't know if that's what it really is - maybe it is my breathing. I'm always trying to think of how to explain this to other people, and "air" just seems easier for others to comprehend. Also, I don't think most people out there realize how debilitating these problems are since they can't "see" the symptoms, and I'm not sure if my explanations actually get the point across.
Anyways, LIB - Starbucks at Huntsman would be good, maybe one evening this week?
I know the guy in Fredericksburg as James, so it's probably him.
Today has been miserable for me - very muggy weather out, and i made the mistake of going for a long walk in it - afterwards, my ear wouldn't stop "popping", and my nose was super stuffed, so i drank lots of water and sprayed lots of stuff up my nose - PatuelEnd and lots of saline...of course a lot of it dripped back down my throat, so that's burning now, and I think I'm lightheaded from all the sniffing/sniffling. Ended up canceling my evening plans cause it took my energy away, not to mention it's kinda hard to socialize when your throat's burning and you feel lightheaded.
Anyways, I don't know anymore about what I have, but at least my allergist agreed to the prescription referral for Sismanis. I say I feel "air", but I don't know if that's what it really is - maybe it is my breathing. I'm always trying to think of how to explain this to other people, and "air" just seems easier for others to comprehend. Also, I don't think most people out there realize how debilitating these problems are since they can't "see" the symptoms, and I'm not sure if my explanations actually get the point across.
Anyways, LIB - Starbucks at Huntsman would be good, maybe one evening this week?
I know the guy in Fredericksburg as James, so it's probably him.
lib
01-14-2007, 08:39 PM
lately what happens most is..when i swallow both ears feel extremely cloggy...like the e-tubes move abnormally.....also when I belch (burp)
and the feeling is almost a spasm in both ears...(but when I read about mylocous) it doesn't seem to describe this either...so it really confusing.
I don't know...very strange...trying to describe these symptoms to someone else is sometimes like trying to tell a blind since birth person what purple is.
..not so much autophony in left ear in the last 2 weeks (thank god)...this is my main problem when it happens ...
well i guess ill solve your problems......yes in fact i can tell for sure that with myoclonus when you swallow or burp it will trigger the spasms, ahhh another clue.....and no you will only find a few things out there that they write about burping and myoclonus, one paper was by dr epley, he had 2 patients that had sx with burping, but i have found at least a dozen or more....i am one of them.
funny as you continue to add sx to posts it matches more and more....
i believed mine to be p e t related......turned out it was not, it was myoclonus.....hope this helps.
and the feeling is almost a spasm in both ears...(but when I read about mylocous) it doesn't seem to describe this either...so it really confusing.
I don't know...very strange...trying to describe these symptoms to someone else is sometimes like trying to tell a blind since birth person what purple is.
..not so much autophony in left ear in the last 2 weeks (thank god)...this is my main problem when it happens ...
well i guess ill solve your problems......yes in fact i can tell for sure that with myoclonus when you swallow or burp it will trigger the spasms, ahhh another clue.....and no you will only find a few things out there that they write about burping and myoclonus, one paper was by dr epley, he had 2 patients that had sx with burping, but i have found at least a dozen or more....i am one of them.
funny as you continue to add sx to posts it matches more and more....
i believed mine to be p e t related......turned out it was not, it was myoclonus.....hope this helps.
lib
01-14-2007, 08:57 PM
hi jenny,
funny i was getting popping today as well today, i think it can be weather related too. but i do better in the summer, not sure why.
yes that is jim, i know him, we email a bit, and instant message, and went to surgery together in aug 04. he is better, he was the one who called poe after our surgery, and said i was the same, we went back the next morning together and poe the wonderful dr he is, brain stormed and figured me out.
jim was a huge help to me....
i think air is myoclonus because there is no mistaking autophoney......i thought what i was feeling and hearing was autophoney, but after surgery dr poe said it is hearing your voice and breathing like a megaphone in your ear, loudly and clearly......mine was noises and sensations, movement, vibrations and distorted.......a bit different, but not by much..
tomorrow is a holiday......are you working?
lib
funny i was getting popping today as well today, i think it can be weather related too. but i do better in the summer, not sure why.
yes that is jim, i know him, we email a bit, and instant message, and went to surgery together in aug 04. he is better, he was the one who called poe after our surgery, and said i was the same, we went back the next morning together and poe the wonderful dr he is, brain stormed and figured me out.
jim was a huge help to me....
i think air is myoclonus because there is no mistaking autophoney......i thought what i was feeling and hearing was autophoney, but after surgery dr poe said it is hearing your voice and breathing like a megaphone in your ear, loudly and clearly......mine was noises and sensations, movement, vibrations and distorted.......a bit different, but not by much..
tomorrow is a holiday......are you working?
lib
winterj
01-14-2007, 09:08 PM
i feel like i'm playing the game "taboo" in here!
koyla - what do the breathing exercises help w/, as far as ear problems go? I have a friend who does them and was showing them to me the other day.
koyla - what do the breathing exercises help w/, as far as ear problems go? I have a friend who does them and was showing them to me the other day.
winterj
01-14-2007, 09:25 PM
hi jenny,
funny i was getting popping today as well today, i think it can be weather related too. but i do better in the summer, not sure why.
yes that is jim, i know him, we email a bit, and instant message, and went to surgery together in aug 04. he is better, he was the one who called poe after our surgery, and said i was the same, we went back the next morning together and poe the wonderful dr he is, brain stormed and figured me out.
jim was a huge help to me....
i think air is myoclonus because there is no mistaking autophoney......i thought what i was feeling and hearing was autophoney, but after surgery dr poe said it is hearing your voice and breathing like a megaphone in your ear, loudly and clearly......mine was noises and sensations, movement, vibrations and distorted.......a bit different, but not by much..
tomorrow is a holiday......are you working?
lib
Unfortunately, I do work tomorrow during the day, but not in the evening, but apparently we're not supposed to meet anyone from these boards...If it's the same James, he is in his 30s and his symptoms started from scuba diving. If all else fails, he knows how to reach me. We met on *******, but i also use google. I think his symptoms still come back from time to time. I do hear my voice in my head, but not sure if it's as loud as a megaphone.
WinterJenny
funny i was getting popping today as well today, i think it can be weather related too. but i do better in the summer, not sure why.
yes that is jim, i know him, we email a bit, and instant message, and went to surgery together in aug 04. he is better, he was the one who called poe after our surgery, and said i was the same, we went back the next morning together and poe the wonderful dr he is, brain stormed and figured me out.
jim was a huge help to me....
i think air is myoclonus because there is no mistaking autophoney......i thought what i was feeling and hearing was autophoney, but after surgery dr poe said it is hearing your voice and breathing like a megaphone in your ear, loudly and clearly......mine was noises and sensations, movement, vibrations and distorted.......a bit different, but not by much..
tomorrow is a holiday......are you working?
lib
Unfortunately, I do work tomorrow during the day, but not in the evening, but apparently we're not supposed to meet anyone from these boards...If it's the same James, he is in his 30s and his symptoms started from scuba diving. If all else fails, he knows how to reach me. We met on *******, but i also use google. I think his symptoms still come back from time to time. I do hear my voice in my head, but not sure if it's as loud as a megaphone.
WinterJenny
lib
01-14-2007, 09:25 PM
yes....i understand your feeling that way.....frustrating!
like selling my house, we have it for sale by owner, people drive by and stop to write my number down, but never call....i hate it!
like selling my house, we have it for sale by owner, people drive by and stop to write my number down, but never call....i hate it!
lib
01-14-2007, 09:30 PM
i think it could be jim, but i dont remember the scuba part, but his sx do come back, do you remember if he had it in both ears? i have not heard from him in a while, cant find his addy. i hope hes ok.
winterj
01-14-2007, 10:03 PM
I did a search for "patul-end" and one of the pages it lists is patulouseustachiantubesyndrome, which is james' page.
lib
01-14-2007, 10:54 PM
i am looking for the site about p e t that he has but am having a hard time finding it, although i do remember he had one.....that was 2 or more years ago....i hope i find that info.......its got to be the same sufferer.....no doubt. he has my info but i cant find his.
there is also a dr in switzerland
there is also a dr in switzerland
winterj
01-14-2007, 11:11 PM
I think I found a number to call you at. James' page is the 7th listing when you do a GOOGLE search for patul-end. I think he did have it in both ears, even when he was lying down, and he had symptoms all the time. He was ready to get his tube closed when he found Dr. Poe.
WinterJenny
WinterJenny
singingear
01-14-2007, 11:15 PM
well i guess ill solve your problems......yes in fact i can tell for sure that with myoclonus when you swallow or burp it will trigger the spasms, ahhh another clue.....and no you will only find a few things out there that they write about burping and myoclonus, one paper was by dr epley, he had 2 patients that had sx with burping, but i have found at least a dozen or more....i am one of them.
funny as you continue to add sx to posts it matches more and more....
i believed mine to be p e t related......turned out it was not, it was myoclonus.....hope this helps.
yes...it makes sense...
I will ask th specialist in early feb...this is so strange...lots of autophony the first 6 weeks...now more strange spasms...really hard to explain..and describe symptoms...i try to imagine myself as the doc listening to me explain...i honestly don't know if I'd get what i'm talking about...unless i had the exact sensations...how can a doc tell if I for sure have myoclonus, PET...or something else...i really hope someday this goes away or i deal with it better...how do people treat this kinda myoclonus???
funny as you continue to add sx to posts it matches more and more....
i believed mine to be p e t related......turned out it was not, it was myoclonus.....hope this helps.
yes...it makes sense...
I will ask th specialist in early feb...this is so strange...lots of autophony the first 6 weeks...now more strange spasms...really hard to explain..and describe symptoms...i try to imagine myself as the doc listening to me explain...i honestly don't know if I'd get what i'm talking about...unless i had the exact sensations...how can a doc tell if I for sure have myoclonus, PET...or something else...i really hope someday this goes away or i deal with it better...how do people treat this kinda myoclonus???
winterj
01-14-2007, 11:24 PM
SingingEar - My doc looked into my ear while it was acting up and he could actually see it moving differently from the normal ear...so, I'd suggest doing whatever it takes to make it act up (not sure how frequent your symptoms are, but mine are intermittent) - if he can see it, then you have proof that it's not all in your head so to speak, and he can document something he can see w/ his own eyes.
lib
01-14-2007, 11:26 PM
yes thats jimmy.....*******.....found it! check it out....what a small world!!!!! im up for a while!
lib
01-14-2007, 11:29 PM
i had the same singing ear, i think the ear tension is what changes your voice and the way you hear it.....and like winter says.....see it move, but, like poe says....you have to catch the muscle in the act
winterj
01-15-2007, 09:52 AM
Paying attention to my symptoms this morning -
-Tried to sleep on left side last night, and right side still bothering more today. Since left side was bothering me a little bit, think it'll just be which ever side I sleep on more.
-The reason I don't breathe through my nose is because it sets off the symptoms in my ear
-When the symptoms are active, my voice is louder and in my ear, and I can hear/feel my breathing move w/ every breath, almost as if it's trying to break through a barrier.
-Tried to sleep on left side last night, and right side still bothering more today. Since left side was bothering me a little bit, think it'll just be which ever side I sleep on more.
-The reason I don't breathe through my nose is because it sets off the symptoms in my ear
-When the symptoms are active, my voice is louder and in my ear, and I can hear/feel my breathing move w/ every breath, almost as if it's trying to break through a barrier.
lib
01-15-2007, 01:10 PM
winter,
try seeing if it goes away if you stop breathing for a minute or so, pich your nose and close mouth, see if it changes anything.
lib
try seeing if it goes away if you stop breathing for a minute or so, pich your nose and close mouth, see if it changes anything.
lib
winterj
01-15-2007, 04:17 PM
Ok, I held my nose like I was going under water in the pool, and I simulated breathing in and out (simulated because my nose was pinched and my mouth was closed).
Instead of feeling the air/breath go back and forth through my e-tube, it was a muted version of it, and kinda felt like it suctioning in my ear.
Instead of feeling the air/breath go back and forth through my e-tube, it was a muted version of it, and kinda felt like it suctioning in my ear.
lib
01-15-2007, 05:05 PM
hmmm and did you try to just stop breathing all together for a minute or so?
singingear
01-16-2007, 03:54 PM
i had the same singing ear, i think the ear tension is what changes your voice and the way you hear it.....and like winter says.....see it move, but, like poe says....you have to catch the muscle in the act
that's what I'll try to get accomplished at the doctor......this sucks. trying to get back to my songwriting...and singing......pretty damn hard...feel kinda ironically cursed...i'm mean evryone need there ears but come on....
that's what I'll try to get accomplished at the doctor......this sucks. trying to get back to my songwriting...and singing......pretty damn hard...feel kinda ironically cursed...i'm mean evryone need there ears but come on....
singingear
01-16-2007, 03:56 PM
Paying attention to my symptoms this morning -
-Tried to sleep on left side last night, and right side still bothering more today. Since left side was bothering me a little bit, think it'll just be which ever side I sleep on more.
-The reason I don't breathe through my nose is because it sets off the symptoms in my ear
-When the symptoms are active, my voice is louder and in my ear, and I can hear/feel my breathing move w/ every breath, almost as if it's trying to break through a barrier.
this is kinda similar to me. when i sleep on which ever ear side...it hurts...kinda extra sensitive...and raw...my ear feels like it bends easy and hurts...also hard to describe...then depending positional sleeping my given ear (s) are affected with pain...
-Tried to sleep on left side last night, and right side still bothering more today. Since left side was bothering me a little bit, think it'll just be which ever side I sleep on more.
-The reason I don't breathe through my nose is because it sets off the symptoms in my ear
-When the symptoms are active, my voice is louder and in my ear, and I can hear/feel my breathing move w/ every breath, almost as if it's trying to break through a barrier.
this is kinda similar to me. when i sleep on which ever ear side...it hurts...kinda extra sensitive...and raw...my ear feels like it bends easy and hurts...also hard to describe...then depending positional sleeping my given ear (s) are affected with pain...
winterj
01-17-2007, 11:03 AM
Hmm, mine never hurts, so I don't know what that means.
I have appointment w/ Dr F. today, but I'm not expecting anything except him being codescending like the rest. If nothing else comes out of it, at least he'll hear one more patient telling him about this problem.
I was worried that with this colder weather my symptoms wouldn't act up. But *fortunately*, I've been able to 'force' them to happen, so at least he should be able to see that all is not normal.
Singing - have you seen your doc yet?
I have appointment w/ Dr F. today, but I'm not expecting anything except him being codescending like the rest. If nothing else comes out of it, at least he'll hear one more patient telling him about this problem.
I was worried that with this colder weather my symptoms wouldn't act up. But *fortunately*, I've been able to 'force' them to happen, so at least he should be able to see that all is not normal.
Singing - have you seen your doc yet?
singingear
01-17-2007, 03:18 PM
feb 1rst is my appt. with dr dittiro. he's a specialist...but with all docs...who knows? I was sent to him thru a ref. at kaiser hosp. and have seen him once before when he diagnosed me with pet
winterj
01-17-2007, 05:26 PM
good news :)
Lib - you won't believe this, but Dr. F actually acknowleged I have pet!!! You and all the other patients must have paved the way!!!! He was confidant that it's not palatal myoclonus. I'm thinking about still going to see Dr. Sismanis anyways since he's more familiar with all this, just to be sure. However, Dr. F agreed to write the referral letter that Dr. Poe requires for the initial appointment :) :) I can't believe someone has acknowleged this after all these years. If it wasn't for the internet I think I would've gone crazy. Of only 300 doctors in this field, what took them so long to talk about this I don't know. But I went in expecting the worst, so something good had to come out of it. I'm still in shock that he even knew about it.
Lib - you won't believe this, but Dr. F actually acknowleged I have pet!!! You and all the other patients must have paved the way!!!! He was confidant that it's not palatal myoclonus. I'm thinking about still going to see Dr. Sismanis anyways since he's more familiar with all this, just to be sure. However, Dr. F agreed to write the referral letter that Dr. Poe requires for the initial appointment :) :) I can't believe someone has acknowleged this after all these years. If it wasn't for the internet I think I would've gone crazy. Of only 300 doctors in this field, what took them so long to talk about this I don't know. But I went in expecting the worst, so something good had to come out of it. I'm still in shock that he even knew about it.
lib
01-17-2007, 10:34 PM
thats great! did you ask about middle ear myoclonus?
palatal is different. how was he sure it was p e t? i would stiill see sismanis.....and dr poe?
palatal is different. how was he sure it was p e t? i would stiill see sismanis.....and dr poe?
winterj
01-17-2007, 10:45 PM
yeah, i'm still going to see Sismanis and then Poe, since they know this stuff. I keep forgetting his name - Fitzgerald? based it on my description and said he was pretty familiar w/ palatal myoclonus, and that it wasn't that. Regardless of whether he's right or not, he's HEARD of pet, which is a huge step up from my other ENTs, and he's documenting it, which is another giant step (I always have these sad scenarios running through my head that I want to explain to my teachers and bosses why it's hard for me to talk for presentations, interviews, whatever and I'm sure that if i had a doctor's note it would be more believable, but what doctor would even write this kind of note if they don't believe me or understand me, so now it's at least *possible*...)...yes, it's the little things that make me happy:)
winterj
01-17-2007, 10:47 PM
i think he knows just enough about pet to know that it exists and what it does, that it's miserable, and that there are others who know a lot more about it, so he's happy knowing that much and passing the torch to someone who knows more.
lib
01-17-2007, 11:14 PM
cool, i agree it does sound like p e t, but so did mine, that why i asked if you asked about middle ear, not palatal.
mine was a tough case to figure out. please ask dr sismanis if he thinks it could be middle ear myoclonus , and did dr f scope your tubes?
dr sismanis probably will, and poe will for sure.
mine was a tough case to figure out. please ask dr sismanis if he thinks it could be middle ear myoclonus , and did dr f scope your tubes?
dr sismanis probably will, and poe will for sure.
singingear
01-18-2007, 01:55 AM
lib, if you can please. list names of the tests the doctors have done related to diagnose. PET & myclonus. i realize this is a big favor and some work but i would certainly appreciate it. it would be quite good to bombard my doc with this valuable inforrmation. thank you.
lib
01-18-2007, 08:24 AM
singingear,
sometimes a type of stapedial reflex test will show myoclonus, but not often.
they have to see or hear the noise or believe your symptoms in both. the e tubes and be scoped through the nose, that is not always conclusive either.
there are no real tests for either unfortunately. i found that making the clearest list of symptoms is helpful. it is important to really be specific in these symptoms. in talking to you, your clues came about in several different posts, a lot of key info in each. now put it all together. also you are best seved by a neurotoligist, not an ent as they know nothing. however a few out there one day will as my dr is a teacher and he showed me to his students, so i hope the retained that for others sake.
lib
sometimes a type of stapedial reflex test will show myoclonus, but not often.
they have to see or hear the noise or believe your symptoms in both. the e tubes and be scoped through the nose, that is not always conclusive either.
there are no real tests for either unfortunately. i found that making the clearest list of symptoms is helpful. it is important to really be specific in these symptoms. in talking to you, your clues came about in several different posts, a lot of key info in each. now put it all together. also you are best seved by a neurotoligist, not an ent as they know nothing. however a few out there one day will as my dr is a teacher and he showed me to his students, so i hope the retained that for others sake.
lib
winterj
01-18-2007, 10:29 AM
Lib - What does the scope tell them? Were your symptoms also relieved by the usual PET reliefs, like putting your head between your knees?
I just looked at my receipt from Dr. Fitzgerald's office, and I'm happy to report that "Patulous Eustachian Tube" is actually listed in the Diagnosis section, #381.7 :)
I just looked at my receipt from Dr. Fitzgerald's office, and I'm happy to report that "Patulous Eustachian Tube" is actually listed in the Diagnosis section, #381.7 :)
winterj
01-18-2007, 10:50 AM
Was just re-reading some of the posts...
You guys mentioned burping setting off the symptoms - it will set mine off too, but not all the time. It only happens if it's one of those days or moments where I would've had symptoms anyways from something else, like swallowing or yawning or whatever.
Lib - does Patul-End help w/ Myclonus? I'd like to say Patul-End helps me sometimes, but haven't had enough success w/ it to say for sure.
Singing - if you are trying to get Patul-End, and you haven't had a response yet...well, I think I got their attention when I submitted the order form. Guessing they are pretty busy and don't have time to respond to all calls/emails, so you have to be pretty proactive. But I'm sure you already knew that, given the field that we're dealing with here!
You guys mentioned burping setting off the symptoms - it will set mine off too, but not all the time. It only happens if it's one of those days or moments where I would've had symptoms anyways from something else, like swallowing or yawning or whatever.
Lib - does Patul-End help w/ Myclonus? I'd like to say Patul-End helps me sometimes, but haven't had enough success w/ it to say for sure.
Singing - if you are trying to get Patul-End, and you haven't had a response yet...well, I think I got their attention when I submitted the order form. Guessing they are pretty busy and don't have time to respond to all calls/emails, so you have to be pretty proactive. But I'm sure you already knew that, given the field that we're dealing with here!
Remmy
01-18-2007, 12:34 PM
Hi All.
I am a PET sufferer too. I've been diagnosed with Patulous Eustachian Tube by Dr. Kujawski in Geneve. Dr. Kujawski and Dr. Poe know each other and share almost the same approach to face with PET.
In my case, the abnormal patency of my tubes is due to a blind laryngo-pharyngeal acid reflux from my stomach, that has severely damaged my tubes: they got burnt and now the their mucosal tissue is "gently dying". That's what Dr. Kujawski said.
As far as I've understood, it is not easy to diagnose PET. I'm gonna tell you why he is so sure that I've PET.
1) Symptoms
--- AUTOPHONY: in my case it's very slight, but once in a while I can hear the sound of my breath amplified and like through a barrel; also, sometime I hear my voice differently, echoing in my ears, BUT NOT MUFFLED like when you have a cold
--- HEARTBEAT: sometime, I can hear it when my right/left ear is on a pillow
--- POPPING sensation when yawning or swallowing (only when swallowing saliva, not when swallowing food.... that's strange); sometime, they pop without any apparent reason
--- HYPERACOUSY: now it's very rare, but some months ago the sound of dishes, when my mother washed them, used to bother me
--- Sometime, I can hear the sound of my saliva going down my throat
--- HIGH FREQUENCY tinnitus. This is permanent!!!
--- LIGHTHEADEDNESS (did I spell it correctly?): not always, anyway
--- My drum moves too much in&out when I travel by train, expecially when the train enter into a tunnel or comes out of it
2) Impedenziometry: when I perform repeadtly VALSAVA's and TOINBEE's manouvres, my middle ear do not keep the pressure!!!
3) Endoscopy of the tubes: my laryngopharingeal zone is burnt by stomach acid and my tube (mainly my right one) show an athrophic anterior wall, so that you can se a small hole when they are in a relaxed position (that is when they should be closed).
Anyway, my PET is fortunately slight, so it is not a living hell, like a friend of mine in England is used to say.
The initial cure given by Kujawski in my case is: anti acid (proton pump inibitor) to reduce acidity, plus a corticosteroid nose spray to help my tissue to heal.
If this is not enough, surgery may be an option. A basic descritpion of this surgery can be found on Kujawski's site:
www.eustachian-tube.net
(The site is under revision, but the links on the right still work)
I found also a small report by Dr. Poe about PETR (Patulous Eustachian Tube Reconstruction); Dr. Poe's surgery should be more or less the same as Dr. Kujawski's. Here's the report.
A question.... did you experience significant weight loss BEFORE PET started?
Just to understand if weight loss is a frequent predisposing factor.
Patulous Eustachian Tube
Reconstruction [ PETR ]
Dennis S Poe, MD
Objective: The patulous
Eustatian tube (ET) appears to be due to al longtidinal concave defect
in the mucosal valve at the superior aspect of its antcro-lateral wall
and causes troublesome autophony. It was hypothesized that submocosal
graft implantation to fill in the concavity within the patulos tubal
valve by PETR may produce lasting relief of symptoms.
Study design:
Retrospective review.
Setting: Tertiary referal center, ambulatory
surgery.
Patiens: 11 eustatian tubes in 8 adults with two or more
years of confirmed continuous patulos ET symptoms refractory to
medical
care.
Intervention: Endoluminal PETR was perfonned in 11
separate
cases using a combined endoscopie trans-nasal and trans-oral
approach
under general anesthesia. A submouscosal flap was raised
along the
antero-lateral wall of the tuba lumen up tot the valve and
mobilezed
superior 1 y off of the basi-spenoid, The pocket was filed
with
Alloderm implant restoring the nonnal convexity and competence to
the
mucosal lumen valve.
Main outcome measure: Autophony symptoms
were
scored as 1) complete relief, 2) significant improvement, 3)
unchanged,
4) worse.
Results: All cases reproted immediate complete
relief of
autophony. Results with follow-up ranging from 2 tot 18
months (ave 9.2
mo), 6 (55%) caes had complete relief of symptoms, 5
(45%) significant
improvement. There were no complications.
Correlation between patulous
ET and other conditions was strongest
with laryngo-pharyngeal reflux
and rheumatological conditions.
Conclusions: Patulous ET appears to
bu caused by a concave defect in
the rubal valve.s antero-latcral wall.
Submusocal graft inplantation
to restore the normal convexity to the
valve wall apperas capable of
giving lasting relief of symptoms. Long-
term study is needed.
I am a PET sufferer too. I've been diagnosed with Patulous Eustachian Tube by Dr. Kujawski in Geneve. Dr. Kujawski and Dr. Poe know each other and share almost the same approach to face with PET.
In my case, the abnormal patency of my tubes is due to a blind laryngo-pharyngeal acid reflux from my stomach, that has severely damaged my tubes: they got burnt and now the their mucosal tissue is "gently dying". That's what Dr. Kujawski said.
As far as I've understood, it is not easy to diagnose PET. I'm gonna tell you why he is so sure that I've PET.
1) Symptoms
--- AUTOPHONY: in my case it's very slight, but once in a while I can hear the sound of my breath amplified and like through a barrel; also, sometime I hear my voice differently, echoing in my ears, BUT NOT MUFFLED like when you have a cold
--- HEARTBEAT: sometime, I can hear it when my right/left ear is on a pillow
--- POPPING sensation when yawning or swallowing (only when swallowing saliva, not when swallowing food.... that's strange); sometime, they pop without any apparent reason
--- HYPERACOUSY: now it's very rare, but some months ago the sound of dishes, when my mother washed them, used to bother me
--- Sometime, I can hear the sound of my saliva going down my throat
--- HIGH FREQUENCY tinnitus. This is permanent!!!
--- LIGHTHEADEDNESS (did I spell it correctly?): not always, anyway
--- My drum moves too much in&out when I travel by train, expecially when the train enter into a tunnel or comes out of it
2) Impedenziometry: when I perform repeadtly VALSAVA's and TOINBEE's manouvres, my middle ear do not keep the pressure!!!
3) Endoscopy of the tubes: my laryngopharingeal zone is burnt by stomach acid and my tube (mainly my right one) show an athrophic anterior wall, so that you can se a small hole when they are in a relaxed position (that is when they should be closed).
Anyway, my PET is fortunately slight, so it is not a living hell, like a friend of mine in England is used to say.
The initial cure given by Kujawski in my case is: anti acid (proton pump inibitor) to reduce acidity, plus a corticosteroid nose spray to help my tissue to heal.
If this is not enough, surgery may be an option. A basic descritpion of this surgery can be found on Kujawski's site:
www.eustachian-tube.net
(The site is under revision, but the links on the right still work)
I found also a small report by Dr. Poe about PETR (Patulous Eustachian Tube Reconstruction); Dr. Poe's surgery should be more or less the same as Dr. Kujawski's. Here's the report.
A question.... did you experience significant weight loss BEFORE PET started?
Just to understand if weight loss is a frequent predisposing factor.
Patulous Eustachian Tube
Reconstruction [ PETR ]
Dennis S Poe, MD
Objective: The patulous
Eustatian tube (ET) appears to be due to al longtidinal concave defect
in the mucosal valve at the superior aspect of its antcro-lateral wall
and causes troublesome autophony. It was hypothesized that submocosal
graft implantation to fill in the concavity within the patulos tubal
valve by PETR may produce lasting relief of symptoms.
Study design:
Retrospective review.
Setting: Tertiary referal center, ambulatory
surgery.
Patiens: 11 eustatian tubes in 8 adults with two or more
years of confirmed continuous patulos ET symptoms refractory to
medical
care.
Intervention: Endoluminal PETR was perfonned in 11
separate
cases using a combined endoscopie trans-nasal and trans-oral
approach
under general anesthesia. A submouscosal flap was raised
along the
antero-lateral wall of the tuba lumen up tot the valve and
mobilezed
superior 1 y off of the basi-spenoid, The pocket was filed
with
Alloderm implant restoring the nonnal convexity and competence to
the
mucosal lumen valve.
Main outcome measure: Autophony symptoms
were
scored as 1) complete relief, 2) significant improvement, 3)
unchanged,
4) worse.
Results: All cases reproted immediate complete
relief of
autophony. Results with follow-up ranging from 2 tot 18
months (ave 9.2
mo), 6 (55%) caes had complete relief of symptoms, 5
(45%) significant
improvement. There were no complications.
Correlation between patulous
ET and other conditions was strongest
with laryngo-pharyngeal reflux
and rheumatological conditions.
Conclusions: Patulous ET appears to
bu caused by a concave defect in
the rubal valve.s antero-latcral wall.
Submusocal graft inplantation
to restore the normal convexity to the
valve wall apperas capable of
giving lasting relief of symptoms. Long-
term study is needed.
winterj
01-18-2007, 01:43 PM
Hi Remmy, thanks for posting. I don't have all the symptoms you describe, but from reading up on your posting, sounds like there's a link between LPR & PET. My doctor thought I had GERD, but maybe it's LPR. I've always had the cough and PND, so I wouldn't be surprised if they've worn down some tissue after all this time.
winterj
01-18-2007, 02:23 PM
holy crap :eek: - i just called Dr. Poe to schedule my consultation, now that I will be getting my referral letter - he's booked until MAY!!, even just for consultations :(:dizzy: so much for spring break in boston!
lib
01-18-2007, 09:27 PM
yup.....its 4-6 months wait for him.....about 3 for surgery if you go that route.
Remmy
01-20-2007, 01:19 PM
Hi Winterj.
Dr. Kujawski told me that, in case of GERD, your stomach and esophagus may not suffer from it, since the acid coming is not that strong and does not stay there long enough to damage tissues. Anyway, since your LP tissues are more delicate, they may get damaged.
So you may have GERD without damages in your esophagus but with your tubes "burnt"!!! That's my case. And I could see the burnts during endoscopy, also in my throat.
Bye
Remmy.
Dr. Kujawski told me that, in case of GERD, your stomach and esophagus may not suffer from it, since the acid coming is not that strong and does not stay there long enough to damage tissues. Anyway, since your LP tissues are more delicate, they may get damaged.
So you may have GERD without damages in your esophagus but with your tubes "burnt"!!! That's my case. And I could see the burnts during endoscopy, also in my throat.
Bye
Remmy.
winterj
01-23-2007, 03:28 PM
thinking i might need that endoscopy too :(
winterj
01-23-2007, 03:44 PM
singingear,
sometimes a type of stapedial reflex test will show myoclonus, but not often.
they have to see or hear the noise or believe your symptoms in both. the e tubes and be scoped through the nose, that is not always conclusive either.
there are no real tests for either unfortunately. i found that making the clearest list of symptoms is helpful. it is important to really be specific in these symptoms. in talking to you, your clues came about in several different posts, a lot of key info in each. now put it all together. also you are best seved by a neurotoligist, not an ent as they know nothing. however a few out there one day will as my dr is a teacher and he showed me to his students, so i hope the retained that for others sake.
lib
Any idea of what to expect at initial consultation w/ Dr. Sismanis?
sometimes a type of stapedial reflex test will show myoclonus, but not often.
they have to see or hear the noise or believe your symptoms in both. the e tubes and be scoped through the nose, that is not always conclusive either.
there are no real tests for either unfortunately. i found that making the clearest list of symptoms is helpful. it is important to really be specific in these symptoms. in talking to you, your clues came about in several different posts, a lot of key info in each. now put it all together. also you are best seved by a neurotoligist, not an ent as they know nothing. however a few out there one day will as my dr is a teacher and he showed me to his students, so i hope the retained that for others sake.
lib
Any idea of what to expect at initial consultation w/ Dr. Sismanis?
winterj
01-23-2007, 04:47 PM
Lib, or anyone else - have you seen Dr. Charles Limb at Johns Hopkins for PET?
lib
01-23-2007, 11:00 PM
no i have not, actually had not heard of him, i saw dr carey there....what have you found out about him....anything good?
winterj
01-30-2007, 12:05 AM
I saw Dr. Sismanis today - he scoped my nose and I almost passed out - got dizzy and broke into a cold sweat! Good news is he thinks I have PET and yet again, was awesome to hear a doc talk about it.