Well, it's been almost a week since I got the pe tube inserted in my left ear (already had one in the right). I have been suffering severe ear pressure/sense of fullness since having it done...so I am pretty depressed about that. My ear feels worse now than it did before the surgery!
I am hoping it is just in a swollen phase after surgery, or that my eardrum has to get used to the tube. To be honest, I don't remember worrying so much after I had the right side done, because that ear was so messed up that any pressure I felt afterwards would have just felt like the pressure I had before the surgery.
It's hard not to beat myself up over this, but I feel like I have backslid some with this surgery. It's also hard to find things others have written about their recovery from pe tube surgery. All I find are people complaining that they have fullness/pressure! All from a surgery that is supposed to give us relief of that.
To answer earlier questions...I think it was around month 3 or 4 of my ETD that the clicking/crackling with every swallow went away. And I did go through that phase a couple months ago with ticklish clicking in my throat. The e-tubes opened and clicked when I spoke. VERY annoying. One way to test if that phase is gone is to speak the word "cookie." This word will cause your e-tubes to open/close...mine now do so without a click/crackle. So I am glad that phase has passed. Hopefully for good.
What I have been left with is this remaining severe pressure/fullness in my left ("good") ear. The right ear with the older tube feels fine. So hopefully I just need to give it more time to heal and calm down. Yesterday I did start crying again in the evening over this whole ordeal, and my husband had to talk me out of going down that dark path, since I sure don't need my sinuses to stuff up...more mucus = more ear clogging.
I am going to see an ENT-allergist on Weds the 5th for a better battery of allergy tests. The tests I had with the old allergist were the scratch tests plus a blood screen. It picked up on four allergies. Intradermal skin testing is the gold standard, however, and will give us a much better picture of what I am allergic to and how we can treat it with immunology. I really do suspect that there is an allergic basis to this situation since all my ear infections/itching/e-tube issues came on after moving from a dry, hot climate to this very moist, wooded area. I never had ear infections as a child...I never thought about ears until about 6 years ago, when I moved here and started getting severe itching so deep into the ear canal that it had to be the middle ear space that was affected. I also had 3-4 ear infections over same space of time. Too coincidental. The newest research is showing a strong link between middle ear disease and allergy. Knock out the allergy, and you get your ears back. That is my hope!
Thanks to everyone who is writing and keeping the thread alive...we all can take comfort from each other's words of wisdom, and fight the good fight together.
The clicking is driving me crazy. I can't go to sleep at night without trying not to swallow long enough to fall asleep. I just got my operative report back from my dilation surgery, and it looks like i also had really swollen turbinates that he fixed too. I had to do some research to understand what they were and how they functioned, but it was interesting. I don't think i'm having a reaction to dairy, i've been off of it for quite a while and still feel underwater, with constant clicking.
Jenni i hate to say it, but my ENT in San Diego and here told me tubes are not the answer... I was hoping you would get better relief since you did with the other one. I'm sorry, don't go to that dark place...been there and it's NO fun. If i'm not better by Nov/Dec, i will go back to San Diego and have them dialted again with a bigger balloon. I have to, because it worked 100% for me, just didn't last long enough. It's funny you both talk about itching ears. The only time i had that was right after my surgery, i thought i was going to go crazy! But it only lasted a day or two, thank goodness. I wish i could take your helplessness away. The only way i get through this is knowing i can try again. Don't give up hope!! And i hope your ears start feeling better soon.
Jenni, I hope the fullness is just the ear growing accustomed to the PE tube and that it resolves soon. Last week was a maddening week for me. Developed a sore neck from working non-stop with my head tilted over a laptop (I provide live captioning for hearing-impaired students all day) and it seems to be aggravating the ETD. Now I have a super sore neck and angry ears.
Let us know what the allergist finds! You may be onto something with that line of inquiry. An acquaintance who'd moved to Seattle fell deathly ill, to the point where she couldn't get out of bed, and after a long, drawn-out series of doctor visits it turned out that she was allergic to evergreens! She had to quit her job and return to the mid-south where there are mostly deciduous trees. Thankfully she's fully recovered.
DLT: If only we could find the magic bullet--isolate a single culprit, like dairy, that's easy for us to control On one hand, if it's not that, then you get to enjoy your dairy once again. Hooray! On the other hand, mystery remains unsolved. I sure do hope the bigger balloon does the trick for you, for good.
I wanted to give you all another update about my ear problems. My last report, I stated that I was taking Astepro nasal spray. There was no improvement with my symptoms, which I reported to my ENT doctor 5 days ago. It was recommended I try Sudafed for about 2 more weeks, otherwise tubes in my ears along with an adeniodectomy was recommeded. I noticed Sudafed temporarily relieves some of the ear pressure. However, there is still no significant improvement. The pressure, slight fullness and ongoing tinnitus since late February of this year still presists. I've also noticed that at times, when I move my head up and down, there seems to be a sensation of swishing or trapped air in my right ear (my problematic ear) that I don't really notice in my left ear. At this point, I'm wondering if my ongoing ear congestion has something to do with air trapped in the middle ear. Once again, leading me to have more questions than answers with this whole ordeal.
jennifleck, I'm sorry to hear about the discomfort you're experiencing with your left PE tube. I hope these after surgery symptoms are only temporary. I've also tried to find threads on positive stories about PE tube surgery, but all I've come across are complaints about ear fullness and distortions in hearing after this surgery. It's unfortunate to read about these experiences. I wish there were easier or more reliable solutions to this ETD obstacle.
dlt48, just out of curiousity, what are turbinates and what are their function?
I wish you all well as we all continue to weather the ETD storm.
I think anyone who has ETD always gets a sore neck easily- we are already tense from the pain and any little thing can make it worse. I'm sorry. It sounds like you have a very rewarding job tho.
Jenni, i am the opposite of you. I live in dry desert country which every ENT says is terrible for my sinuses, so i use a humidifier every night to put moisture in the air! I love it when i go somewhere humid-my skin even feels better, i never want to come back home. If i could afford it, i would live by the ocean!
I've also tried Sudafed and nose sprays. Talk to Jenni more before you decide on tubes. I don't mean to discourage you, but do as much research as you can. Alot of specialists on the internet will give you information if you ask them. They can't diagnose, but they may give you some information so you can weigh the facts and make your own decision.
You may only have symptoms in one ear because you have a separate Eustachian tube for each ear. One could be working, while the other isn't. I can hear air crackling in my ears constantly, so i know how frustrating these sounds can be. Sometimes i wonder if we aren't all talking about the same sounds, but we describe them differently. Some say it sounds like air, some say water, crackling, or bubbling....But it's mostly the pressure that really gets to all of us.
I also get a sore neck often...my job requires hours at a time of computer usage. I recently had a neck X-ray that shows I have developed a complete reverse curve in it, with a couple of the disks starting to be compressed and some early arthritis developing. The doctor said it's because your head weighs as much as a bowling ball, and we were never meant to spend years (decades, in my case) with your head craned forward over a keyboard trying to read a screen. Something to think about. There are muscles that run all the way up the neck that supposedly can contribute to eustachian tube problems. I have not researched enough to understand the physiology, but I have had some interest in trigger point therapy, where specialists can actively massage troublesome spots and hopefully release some of the tension that might be causing some of our symptoms.
There are so many avenues one can travel down to try to figure out the problem. TMJD is another big one. I actually find my symptoms of ear fullness tend to be worse after wearing my night splint, so I have all but abandoned that line of thinking.
If I could get rid of the fullness/pressure in my ears, I would pretty much consider myself cured of the problem. Over time, the random crackling sound has died down to the point for me where it is usually only brought on by a very big yawn or by voluntarily flexing muscles in the back of my neck to pull open the e-tubes (I do this compulsively in spurts throughout the day when my ears feel full and subject myself to the clicking/crackling sound...wish I had never learned that distracting trick). Apparently hearing a click is normal on occasion with swallowing or a big yawn. The click is the e-tubes equalizing pressure. They are supposed to do it every few swallows or yawns, but certainly not all the time, not to the point where it drives you to distraction.
Here's a weird one...when I've gone kayaking a few times this summer...out in the middle of a lake...my symptoms temporarily disappear. My ears unblock. I feel normal. It's sad to have only had a few times where I've felt completely normal all summer. My thought again is that this must be an allergy to something that is growing here in the Pacific NW, and getting out on the water gets me far enough away from the plants to reduce symptoms. Testing showed I was allergic to three grasses and one common outdoors mold...but with more intense testing, who knows what the new ENT-allergist will turn up? I could be allergic to evergreens, too! The good thing is, many kinds of allergy are completely cured with immunology/shots. It's a 3-5 year commitment...but worth it, if it fixes me. We'll see what the new doctor says.
As for tubes...I would proceed with caution, too. From what I've read, it's about a 50-50 shot in adults whether it will help or not. It seems to have bought me some relief in my worst ear, but now my "better" ear feels worse after having a tube put in. Maybe I gambled and hit the jackpot on one ear, and struck out on the other? The only upside is that I can now fly again without worrying about eardrum damage as the tubes will automatically equalize my ear pressure. I do hope the new tube settles down and I can get some relief.
For me I also have looked into TMJ and found out my spine is the same (from grooming dogs i bend over constantly instead of raising my table) so i too have arthritis in my neck and back. I 've heard the same about your head being as heavy as a bowling ball. I had a chiropractor want me to do a 2 yr program for thousands of dollars.... I've also been told i have allergies, tried hypnosis, everything. I chased every symptom and spent so much money. I truly believe it's our Eustachian tubes. Not our spine or neck or arthritis or TMJ etc. I believe these are our symptoms of ETD. I've been on this wild goose chase for almost 4 yrs. now. I know i can only go off my own experience, but i feel i've been down the road all of you are going on. Concentrate on the problem, your tubes. Allergy is an absolute possibility, since inflammation is probably what we are all fighting with. My tubes were so inflammed my dr had a hard time dilating them. I just know when my tubes were opened up ALL my symptoms dissapeared..somehow we all need to get our tubes opened up and all our symptoms will go away. I truly believe that. I think most drs don't know how to open them up, so they have all these other "reasons" why we are miserable. I know i was miserable because my tubes were stuck shut! So lets get drs to admit that, and figure out how to open them up!! Sorry i'm just so frustrated for all of you because i KNOW how miserable this is! I hear everyone's story and my heart breaks because i was that suicidal girl, thinking there never was going to be an answer. Now i have hope and want to give it to all of you! I know what it's like going from one dr to another...hoping the next one will have the answer.
Yes, I tried chiro for this, and he wanted to do like a two or three year plan, yikes...I put that on hold for right now...although he did manage to get my ear to pop during one adjustment.
Yesterday morning I had very little pressure in the ear with the new tube...thought it was all over. Then had a bad evening of pressure, so, guess not. This morning it's not so bad, but we'll see what evening brings. My doctor told me to give it a while to let it settle down.
I listened to a radio program yesterday that was touting the use of curcumin (a form of turmeric) to calm down inflammatory states in the body. Apparently there is real research behind this (Baylor University study, others)? I do not know if my problem is an inflamed set of e-tubes, or tubes plugged with sinus drainage (yuck). But it may be worth a shot trying a run of this supplement...apparently it can even work better than prednisone, and we all know what kind of side effects come with prednisone usage!
Hi Mia, welcome aboard the ETD train...wish our route was more pleasant and scenic, but at least we have supportive conversation along the ride.
Anyhow, on a more serious note, sorry to hear you've got the monster. I have found coming here and sharing information to be a more positive direction for me to go during what has been a real struggle for me. I know exactly what you mean about doctors seeming nonchalant. I think many of them do not understand the condition very well, cannot fathom how it feels. Unfortunately the common treatment protocol (nasal spray, decongestants) has been proven in several studies to have little effect on treatment outcomes. But doctors know they have to prescribe us *something* instead of just turn us away with a shrug. I personally find that decongestants help some, but the effect of a 12 hour pill falls short of 12 hours (for me), and I can't take a second one because it will keep me up at night.
Before I got ETD, I went for a long time, maybe even a couple years, with a chronic runny nose and post-nasal drip at night. I spent last fall believing I had a non-stop cold...I would wake up with a sore throat, sneeze off and on throughout the day, and just generally feel bad. I had a doctor a while back tell me that my sinuses showed signs of inflammation or allergy. He prescribed me Claritin, but it didn't seem to really change anything one way or the other.
Oh, and I kept getting middle ear infections. The final one, at the end of December, left me in this chronic ETD state.
It's now my belief that allergies are the primary causal factor in my situation, and initial allergy testing showed allergies to three common grasses and one common mold...so...next step is a visit with an ENT-allergist on the 5th. I want more comprehensive testing, and I want to know what is making me sick. I did not grow up with ear infections and think it's kind of ridiculous that I'm having to have tubes in my ear as an adult in my 30s. I'm walking around feeling alienated and miserable, and now partially deaf, but having to keep it inside.
The last allergist I saw could sympathize somewhat with my problem because he said he got off a flight a few years ago with blocked ears that turned into ETD. I asked him how long it took him to get better, and he said, "The initial 80% I got over fairly quickly, probably within a month. But that last 20%...it took months and months for that to resolve. It took a very long time." I did find some hope in the fact that his *did* finally heal...
I've been dealing with alot of eustachian tube problems for 7 months now, particularily in my right ear. After several appointments with an ENT doctor, allergies and an enlarged right adenoid are most likely contributing to my ear problems. I'm thinking of going through with an adenoidectomy and possibility getting a pressure equalization tube put in my in my ear.
To answer your question, I don't have a stuffy nose with my condition. However, every once in awhile, I have phlegm at the back of the throat; Post nasal drip I suppose. When post nasal drip is really bad and I start coughing, it just agrevates my ear problems.
I understand what you mean by how hard it is to explain to others about eustachian tube problems. And though I also appear fine, I don't think many of those without ETD understand how frustrating it can be to deal with ongoing pressure, fullness and, in my case, tinnitus in the ear all the time. The first 2 1/2 months of these problems were the worst for me, crying alot and being depressed because i had no idea what was causing my symptoms. After finding out about the most likely contributing factors to my ETD, I've been able to cope with it mainly by distractions of work, social lufe and my hobbies.
I hope you can find a good ENT doctor to help you with further treatment of ETD.
"I understand what you mean by how hard it is to explain to others about eustachian tube problems. And though I also appear fine, I don't think many of those without ETD understand how frustrating it can be to deal with ongoing pressure, fullness and, in my case, tinnitus in the ear all the time."
Indeed. People just don't know about this pathology and how debilitating it is. I'd never known how horrible ear related dysfunction can make one feel! I never even knew such a thing as ETD existed!
Yep, I had no clue there was something called ETD, either. I never thought about ears before this. Even when I went through the scattered ear infections I've had after moving here, I would throw some antibiotics at them, get better, and promptly forget my ears existed. I now call the ears the "seat of well-being." Mess with them, and it's very, very difficult to feel like a normal member of the human race.
how much was the consult? I will drive down there and check him out. I've seen 2 ent drs. over the last 2 yrs and no diagnosis for my clogged ears. I started taking an antidepressent and now I dont' want to get out of the house. It's really getting bad and I have two kids to raise....i hope he can help. My ins. is HMO and I will have to use my own cash for the consult.