Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Hi Jenni!
Thanks for the reply! I am FINALLY heading to an ENT (I've found it particularly hard in Canada to get a referral to an ENT with this problem which has been very frustrating). I've been to several doctors, but no ENT specialists. I would at least like to see if I may be a candidate for this Balloon Dilation thing. I feel like it's my last hope! I am going to get checked for TMJ too, but I do not have any other symptoms of TMJD so i do not have high hopes.
I wonder if I may have similar allergies that you are suffering from, as I too moved to the Pacific Northwest from Toronto 5 years ago, and you are right, it didn't happen overnight but the allergies may have worsened over time. I do not have any nasal issues though which surprises me because I've ALWAYS had nasal problems and never ear issues. It's so strange. Also, my etd affects just the one ear not both. I am also curious whether it could be an anatomical issue such as a deviated septum that is disrupting the functioning of my eustachian tube?
Have you tried the "EarPopper". I purchased one (for almost $200) and it doesn't work for me at all That said, I read SO many great reviews I was sure it would at least help alleviate the pressure in my ear. Sadly, not the case for me but it may work for some of you on here!
Jenni - you are lucky to have a few hours of each day with clear ears. What usually causes them to clear? A yawn? Doing valsalva maneuver? For some reason valsalva maneuver help me the first and second time, but doing it anymore than that just makes it worse.
One thing I am thankful for is that I do NOT have any ringing/tinnitus.
All I have to say is I know WAY more about the anatomy of the ear than I ever cared to know! lol. It is nice though to have other people to talk to on here that understand ....
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Quote:
Originally Posted by JenPlus2
Hi Shay-
I hadn't come on here in awhile because its truly hard to come back and say you thought you were better but you ended up not being so. I have done the balloon dilation and while it did help me so that I could pop my ears (valsalva), I still have had reoccurrences of ear pressure that is upsetting and mystifying to my current drs. I've done pressure testing and now nothing shows as wrong! My ent who did my dilation suggested that I have tmj disorder but I felt it was an excuse for not finding a right answer. I have chronic allergies too for which I receive weekly injections. The last flare up of ear pressure lasted 2 months or so and I recovered. This episode has been hanging on a bit longer. I'm not sure that the dilation is always the answer, BUT I have been where you are at my wits end, and willing to do whatever. I probably am in that place right now actually. It's been a couple months and I'm done, my husband is done, my kids are done....it's a never ending battle. I'm sorry I can't say that balloon dilation is the magic answer- I wish I could because then I wouldn't be back here, searching for answers like you. Do you have allergies? I take a xyzal (stronger version of Zyrtec) everyday, and try to do neilmed sinus rinses as well. I also take klonopin for the horrible anxiety this has caused me. I am going to be checked out for tmj, as I do have jaw spasms that have become very noticeable, but I don't know about tmjd. It's certainly nice to talk to you all on here especially when you're struggling. It makes it easier to get through the day.
Hi Jenn!
Thanks for your reply. Just out of curiosity, what are the potential negative side effects of the balloon dilation? My MAIN problem is just being unable to "unpop" my right ear. It's always "full" with lots of pressure. ESPECIALLY if I'm driving thru mountains or going up and down an elevator (I live in the mountains AND in a condo building unfortunately). I do take the stairs as much as possible. Today my ear was feeling really good and then I made the stupid mistake of taking the elevator and bam, i've been unable to clear the pressure ever since.
Any info you have on balloon dilation would be awesome! Especially the potential negative side effects I read in another post that you said it has helped you with clearing if the ears still to this day?
Thanks again writing ..... I can't say enough how great it is to talk to people that understand! I feel so bad for my husband as I'm always going on about my symptoms! And as much as he tries to understand, he doesn't
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Hi shay-
The balloon dilation procedure's side effects for me (and I think everyone is different)were an initial swelling period that made my clogged feeling worse to the point of almost insanity for a few weeks followed by loud ( I mean THUMPING) opening and closing of my e tubes every single time I swallowed followed by intermittent periods of patulous Eustachian tube (they kept sticking open to the point I was afraid to yawn). My dr wasn't Dr Poe, just an ent who learned how to do this procedure through classes or whatever. He was completely unhelpful after the procedure and thought I was supposed to have instant results. After calling him several times a day with complaints of the above side effects, he bothered to look into it and informed me that according to Dr Poe, the e tubes take about 6 weeks to heal. It was a pretty terrifying ordeal for me. I actually was told I didn't need to pop my ears at all and discovered that they were able to pop when blowing my nose one day and they both just loudly popped. I discovered I had control over this as time went on and use valsalva (gently) to this day. It might not be 100% valsalva actually because I don't hold my nose and blow back I hold my nose and use the air in my throat to gradually add pressure till they pop. I think this might be safer but not sure.
For the big question 'would you recommend this procedure?'
In short, probably not. Here's why. I was desperate and know what it's like to be desperate. But I felt even worse in the weeks following the procedure and in speaking with another ent afterwards, learned that many don't offer the procedure because some of the side effects can be nasty. He told me I was probably lucky that my e tubes didn't get stuck open for good because that could be a potential side effect. He recommended at the very least that I not do a re dilation. He explained that he has many patients suffering from ETD, and that if this was a cure- all that he would practice it because he sees the suffering of ETD patients. It does make sense to me that if it was a cure that many ENTs would use it.
I can relate to your family not getting it. Unless you feel it you can't get it. Of course the decision to do the procedure is up to you. I'm just relating my experience. There's different reactions to everything for everyone. If you need anymore info let me know.
Jen
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Quote:
Originally Posted by earmom
The FCR we tried, functional cranial release, was performed by a chiropractor. Worth trying!
Hi "ear mom"!
Can you please tell me more about FCR? What is it and do you know if there are any potential negative side effects? What exactly does it entail?
I would love to hear more, I am desperate to find something to help my ear pressure ...
Thanks in advance!
Shay
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Quote:
Originally Posted by JenPlus2
Hi shay-
The balloon dilation procedure's side effects for me (and I think everyone is different)were an initial swelling period that made my clogged feeling worse to the point of almost insanity for a few weeks followed by loud ( I mean THUMPING) opening and closing of my e tubes every single time I swallowed followed by intermittent periods of patulous Eustachian tube (they kept sticking open to the point I was afraid to yawn). My dr wasn't Dr Poe, just an ent who learned how to do this procedure through classes or whatever. He was completely unhelpful after the procedure and thought I was supposed to have instant results. After calling him several times a day with complaints of the above side effects, he bothered to look into it and informed me that according to Dr Poe, the e tubes take about 6 weeks to heal. It was a pretty terrifying ordeal for me. I actually was told I didn't need to pop my ears at all and discovered that they were able to pop when blowing my nose one day and they both just loudly popped. I discovered I had control over this as time went on and use valsalva (gently) to this day. It might not be 100% valsalva actually because I don't hold my nose and blow back I hold my nose and use the air in my throat to gradually add pressure till they pop. I think this might be safer but not sure.
For the big question 'would you recommend this procedure?'
In short, probably not. Here's why. I was desperate and know what it's like to be desperate. But I felt even worse in the weeks following the procedure and in speaking with another ent afterwards, learned that many don't offer the procedure because some of the side effects can be nasty. He told me I was probably lucky that my e tubes didn't get stuck open for good because that could be a potential side effect. He recommended at the very least that I not do a re dilation. He explained that he has many patients suffering from ETD, and that if this was a cure- all that he would practice it because he sees the suffering of ETD patients. It does make sense to me that if it was a cure that many ENTs would use it.
I can relate to your family not getting it. Unless you feel it you can't get it. Of course the decision to do the procedure is up to you. I'm just relating my experience. There's different reactions to everything for everyone. If you need anymore info let me know.
Jen
Hi Jen,
Thanks for the reply. Wow - that sounds awful and is making me completely re-think having this done. I am sorry you had to go through that - that does sound terrifying. Especially when your doctor wasn't being very helpful. 6 weeks is a long time to wonder - is this going to get better? Of course I am going to see my ENT and see what he thinks ... but the thought of making things worse at this point is just not even an option. I'm already going crazy enough!!!! If this got worse I'm not sure what I'd do.
That's the worst part about ear stuff - it seems like all the "options"' such as getting tubes put in or balloon dilation seem to either work well OR terribly! It makes getting any of these ear surguries such a gamble! I don't like that either may potentially make things worse. Same with the valsalva maneuver - sometimes it makes my ears feel good, but if I do it too much it makes them feel TERRIBLE and worse than ever (like right now). Also the "earpopper" that I have - sometimes it works and other times it makes my ears feel awful. I would do anything just to find something to help me MANAGE the situation, but it's been 2 years and I have yet to find anything that helps. And on top of that not knowing why it started makes it all the more frustrating. I was REALLY hoping this balloon dilation surgery might be the answer but I am really not willing to take a chance to make things worse. Ugh!!!!! The thought of having this for the rest of my life is VERY depressing
Sorry to be a downer! I've just been having a bad "ear" day! If you have any other suggestions of anything that helps you even at least temporarily clear your ears I would love to hear them! And of course to anyone else our there who may have some suggestions for short term (or of course long term) ideas.
Shay
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Shay-
I'm not really sure what's going on w my e tubes right now- so far pressures check out as normal but they don't feel right. I can still valsalva them but I try not to do it too much because it makes things worse after awhile for sure like you said and sometimes one of my tubes will get stuck open briefly which is a whole new kind of nightmare. I'm not sure if I read in your post if you've done allergy testing. If not, you should. This is what I think happened to me- I had allergies I was barely treating for awhile and they just exploded after awhile. I didn't think I had any real major allergies but it turns out I had MAJOR allergies. I now do allergy shots weekly and have been taking antihistamine daily, but am recently cutting back because I think ithey're drying my nasal membranes way too much and possibly drying out my e tubes causing the strange feeling. I'm day 2 off the antihistamine and haven't had any major effects yet so we will see.
Honestly some of the only things that helped me really were antihistamines in the beginning once I found out about my allergies and daily use of non preservative nasal saline. I tried the neilmed stuff for awhile but feel like it kinda messed with my e tubes honestly, so I switched back to a spray that you can also use to irrigate. It's arm and hammer Simply Saline. Not sure if its sold in Canada. I also try to distract myself if I can, but currently am going through
alot in my personal life that caused a huge flare up of my anxiety disorder and probably depression. I'm just starting treatment for that, so hopefully ill see some improvement. I've taken some time off work just to deal with it, so distraction hasn't really been happening lately. But it had helped me before. I think when you see your ent you need to try to find out what caused the ETD in the first place so that you can treat the cause and hopefully the e tube symptoms will calm down. I'm here to talk if you need me.
Jen
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Oh and Shay, I was just wondering if the ear popper and valsalva work to open your right (problem) ear? Before I had the dilation, my left ear wouldn't pop no matter what.
Jen
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
hi jen plus 2 I was just wondering if you have headaches along with your etd? Ive recently started getting mild headaches on my temples right above my ears and dont know if its because of etd or because Ive been so stressed over this. I also read that tmj headaches are associated in that area so im seeing a tmj specialist this week to get a splint done. I continue to pray for you and everyone on this board as only the lord knows why he puts us thru these difficult times. Ive never really appreciated my health as now i know that it is a priceless thing and would give everything i own to be healthy again. Wishing everyone better health always...you are not alone
The following user gives a hug of support to mh214: ShayWentz (04-01-2013)
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
No, I don't get headaches from e tube trouble, but I do get headaches and facial pain. I get tightness in my cheek (either one or the other, mainly the left) and sometime numbing sensations there too. I've had an MRI and seen a neurologist, but the MRI didn't show any major issues. I'm at that point where I wish the MRI would show something at least. Like I said, I've narrowed it down to being caused by either my allergies or tmj disorder, or both. There's nothing else showing that causes it.
I agree with you that once you experience a life changing health problem, no matter how big or small, it makes you realize how much we take for granted. We also become desperate to the point of wanting to give up anything to get better.
It's good that you're getting every avenue checked out. That's what I'm doing too. I'm seeing another tmj dr next week because the first 2 didn't make me feel so confident because they couldn't read my tmj MRI. That was a little disturbing to me because if they're a so called expert, they'd be able to read the MRI. I mean, a brain surgeon doesn't say he's not good at reading MRIs of the brain. That's crazy! In the meantime I'm treating my allergies as usual, with weekly shots and Zyrtec and rinsing out my nose with saline 2-3x a day. I have been trying to lay off the ear popping because it seems to make things worse after awhile and really doesn't seem to help much anyway.
It's nuts that something so small could cause so much distress! Hoping the sympt
The following user gives a hug of support to JenPlus2: ShayWentz (04-01-2013)
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
No, I don't get headaches from e tube trouble, but I do get headaches and facial pain. I get tightness in my cheek (either one or the other, mainly the left) and sometime numbing sensations there too. I've had an MRI and seen a neurologist, but the MRI didn't show any major issues. I'm at that point where I wish the MRI would show something at least. Like I said, I've narrowed it down to being caused by either my allergies or tmj disorder, or both. There's nothing else showing that causes it.
I agree with you that once you experience a life changing health problem, no matter how big or small, it makes you realize how much we take for granted. We also become desperate to the point of wanting to give up anything to get better.
It's good that you're getting every avenue checked out. That's what I'm doing too. I'm seeing another tmj dr next week because the first 2 didn't make me feel so confident because they couldn't read my tmj MRI. That was a little disturbing to me because if they're a so called expert, they'd be able to read the MRI. I mean, a brain surgeon doesn't say he's not good at reading MRIs of the brain. That's crazy! In the meantime I'm treating my allergies as usual, with weekly shots and Zyrtec and rinsing out my nose with saline 2-3x a day. I have been trying to lay off the ear popping because it seems to make things worse after awhile and really doesn't seem to help much anyway.
It's nuts that something so small could cause so much distress! Hoping the symptoms will fade like they did before for me. I am sure yours will get better it hasn't been that long so as to be chronic.
Jen
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Ok thanks for replying i guess my headaches are probably from the pred or nasal inhalant dide effects or maybe the stress of it all who knows. I really have faith that my condition won't become chronic although these medications haven't seemed to help. I wish i could at least get some time of relief as oppose to having it all the time. Within the first six months before you had the dilation surgery, did you get any time of relief from the pressure in your ears? Like a few days or weeks without the symptoms? Or was the pressure their always? So many question i know sorry if i bug you
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Mh214-
Unfortunately for the six months prior to my dilation surgery I experienced no real relief from my symptoms. I will say though that the sensation of pressure (needing to pop the ear) changed to more of a 'fullness' feeling like my ears.
You're not annoying me with your questions, as I've said, its hard going through this, and most people don't understand. It's an invisible illness and so people can't see that you're not feeling well and therefore don't understand. There are people who do understand, and its nice to have those people to vent to.
Hope you were able to have a good weekend and holiday despite the ear madness. Sometimes deep breathing helps me, or just closing my eyes and visualizing my body healing itself. Truthfully I don't know if my e tubes are causing the problems I'm experiencing- I just feel like its them. I have had normal tympanograms, though I'm starting to become skeptical of their accuracy. I have succeeded in only popping my ears twice today, instead of the usual 10000x so that was a plus. Try just closing your eyes and breathing for a bit, it really truly seems to help, and I'm telling you this as a veteran sufferer of this nonsense.
Jen
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jen plus 2 im going back to my ent today to get a tymponogram test done and see what the next step is. Im going to ask him about the pe tubes and what he thinks. You said you had them right? How were they and did you get any relief from them? Im so scared of getting them because all i seem to hear is negative stories about them and how it made things worse. I hope the tymponogram test helps in finding something to help me with my case. I'll keep you updated and let you know the results
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Hi mh214-
PE tubes didn't work for me- they were a pretty scary experience I must say. My new ent told me that PE tubes shouldn't be used for ETD unless there's fluid behind the ear drum. I never have fluid behind the drum, so PE tubes didn't help me. Keep in mind that even though you're desperate now, you don't necessarily want to do anything drastic just yet. You haven't yet tried allergy testing/treatment and you still are finding out if your tmj could be contributing to your ear pressure. I'm just trying to rationalize with you- PE tubes should be a last resort, like my e tube dilation surgery was. Please ease believe that even though it stinks to deal with, it most likely will pass. Try adding a daily antihistamine to your routine. Zyrtec is what I use. Take it for at least 7-10 days to let it build in your system to see if it provides you with any relief. It's worth a shot, better than rushing into putting holes in your ear drums. I know PE tubes work for some, but they don't for everyone, I think it's something like 50/50 chance. Even my e tube dilation wasn't the perfect solution, though it did improve things for me. See that tmj specialist, and follow up with your ent. Tell him/her that you're not experiencing relief yet and are interested in finding out what else she can offer you, especially ask about allergy testing. It seems trivial, these little things, but they could have a big
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Hi mh214-
PE tubes didn't work for me- they were a pretty scary experience I must say. My new ent told me that PE tubes shouldn't be used for ETD unless there's fluid behind the ear drum. I never have fluid behind the drum, so PE tubes didn't help me. Keep in mind that even though you're desperate now, you don't necessarily want to do anything drastic just yet. You haven't yet tried allergy testing/treatment and you still are finding out if your tmj could be contributing to your ear pressure. I'm just trying to rationalize with you- PE tubes should be a last resort, like my e tube dilation surgery was. Please ease believe that even though it stinks to deal with, it most likely will pass. Try adding a daily antihistamine to your routine. Zyrtec is what I use. Take it for at least 7-10 days to let it build in your system to see if it provides you with any relief. It's worth a shot, better than rushing into putting holes in your ear drums. I know PE tubes work for some, but they don't for everyone, I think it's something like 50/50 chance. Even my e tube dilation wasn't the perfect solution, though it did improve things for me. See that tmj specialist, and follow up with your ent. Tell him/her that you're not experiencing relief yet and are interested in finding out what else she can offer you, especially ask about allergy testing. It seems trivial, these little things, but they could have a big impact on ETD.
Jen
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jen plus 2 well it turns out the tymponogram results showed no abnormalities which is weird because the pressure in my ears is not my imagination it's really there. He asked for me to get a ct scan of my ears tomorrow so that's the next step. I guess we'll see what happens there. Were your tymponogram results show abnormalities before you had the surgery? My Dr. said my e tubes don't seem to be the problem but i always hear that crackling sound when i swallow and yawn not to mention the pressure. I guess we'll see what the ct scan says. He also said i should see an otologist have you any experience with one of those? Just wanna get to the root of this uggggh sorry to be such a nag
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Mh214-
Yay! I'm so happy for you that the tymps were normal. Did the ent say what they'd be looking for with the ct scan? I think you need an MRI of the brain and inner ear (the part near the brain) to rule out inner ear disorders but if you don't have tinnitus or vertigo then you probably don't. So if I were you, since I'm also in a similar situation, I'd check out your tmj and possibly see a neurologist. You may be experiencing this due to your headaches- there's certain types of headaches that apparently can cause ear fullness/pressure. I think the best bet truthfully now since you have the tmj appt is to also see a neurologist. They will most likely or the MRI. MRIs can showing finer detail vs. a ct scan. Possibly they can do an MRI of the tmjs at this time too? I'd see a neuro and request an MRI since the symptoms haven't disappeared and you're still feeling them.
One other explanation is that you're Eustachian tubes could simply be intermittently dysfunctioning. So in that case, they might not work correctly ALL the time, just most of the time. If you've become sensitized to pressure changed in your ears, which you might have after that infection, you may notice this more than someone else. This is my other working theory for me. And don't think you're imagining the pressure, SOMETHING is causing it, you just need to figure out what.
In answer to your question, no I didn't have normal tympanograms before my dilation, or rather I had abnormal ones in the left ear.
So my suggestions for you are: tmj specialist visit, neurologist visit, and allergy testing(yes, still). Allergies can cause the tube to become inflamed and though it might not close off your tubes, it could be causing that sensation of pressure.
Hope you feel much better after getting this good news!
Jen
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Quote:
Originally Posted by JenPlus2
Oh and Shay, I was just wondering if the ear popper and valsalva work to open your right (problem) ear? Before I had the dilation, my left ear wouldn't pop no matter what.
Jen
Hi Jen!
To answer your question, the valsalva does clear it/provide relief for me for a few minutes the first couple times I do it, but usually doesn't work for long. And - the more I do it, the worse it gets. I typically try to not do the valsalva maneuver until the end of the day because I know that if I start doing it, even though I will feel better for maybe the first hour, it ends up making it feel much worse. The ear popper seems to work SOMETIMES but most of the time just makes it worse, so I rarely use it. That's interesting that the valsalva maneuver didn't work for you at all? It's so frustrating how there is no consistency with eustachian tube dysfunction .... with what works and what doesn't. Such a tiny little tube causing SO many problems!
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Hi again,
Question for you all on here - are both of your ears affected or just one? Also, how long have you guys been having eustachian tube dysfunction issues for? I am at about 2 1/2 years now ....
I love reading everyone's posts on here ... even though I wish none of you had to deal with this, I feel so much comfort knowing that I can talk to people that understand. I am heading to an ENT at the end of May in Vancouver and I have like a full on typed report of information I've gathered to bring it! I want to nail down the cause ... any advice is always welcome. I don't want to waste my appointment as it's taken SO long for me to actually get one.
I hope we all get this figured out soon.
Shay
That said, I read SO many great reviews I was sure it would at least help alleviate the pressure in my ear. Sadly, not the case for me but it may work for some of you on here!
I read in another post that you said it has helped you with clearing if the ears still to this day?
