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.
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.
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
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
Quote:
Originally Posted by lib
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
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
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.
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.
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
'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.
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
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.
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 - 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!
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
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
I'm in W. Springfield too! How funny...
