Hi Jenni, i too have a hepa in my room, and a humidifier since where i live the air is always dry. One of my big frustrations with this, is i didn't have a problem with ETD until after my first sinus surgery, three yrs ago. So i know it wasn't the actualy sinus infection that caused it, but the surgery itself irritated my tubes. I know that a respiratory infection started it up again, after i had my tubes opened up, so maybe this will be a life long thing, but i'm sure hoping it's not. I do a saline flush every day with my hydropulse. I read that can keep the mucus away from your E tube opening so they can heal. The dr i saw yesterday gave me a little explanation about why he thinks the earpopper took away my facial pain. He said that pushing air up into your tubes helps if you have an infection like i did, because most infection needs an environment w/ no air to grow. That's why it grew so big in my maxillary sinus because my sinuses were blocked of any air getting in. Basically sinus surgery just opens up your tubes so your sinsuses can get air, then they hope the infection will go away on it's own. Interesting tho.....just another reason why our tubes may be swollen and why the earpopper might work. So far we have, irritation, infection, allergy....what else? I think that's the frustrating part, not knowing WHY!! I'm going to spend the next week "married" to my earpopper! lol and see if i can get any more results. The first time i used it, it only took 10 days to get rid of the redness on the sides of my nose and the pain i had, to the touch, so i'm giving it my best shot this next week to get this water out of my head! I'll let you know how it goes. Its nice having someone to talk to that understands.. thanks
No problem...I'm always here, and there are so few people in my life that can understand how maddening this affliction can be. They think, "It's not life-threatening...how bad can it really feel?"
I also like the earpopper device...I had so much trouble finding reviews on it outside the website testimonials, but it really does work to at least temporarily blast the tubes back open. It's pricey, but it was worth it for me as a back-up helper when I'm really feeling lousy.
Between earpopper, HEPA, copays, surgery (twice), meds, nose sprays, saline sprays...this has been one costly 9 month health issue! Hope the specialists like Dr. Poe who are working on it can figure it out...sooooooon.
Hi Jenny, I just read the post from the lady who said chemotherapy is nothing compared to this. Wow I hope I never have to go thru that, but it's nice to be understood. But, don't u feel the same way about yourself sometimes. Kind of like, it's not ******* cancer, it's just clogged tubes, why am I such a baby!!!
I just got an e mail from my dr in San Diego. He said to keep trying the sprays for the next few weeks, but if they don't work, we can dilate again with a bigger balloon, that he wants me to fell better, forever. I am so excited!!! I was worried he wouldn't try again. So I am going to be very diligent the next few weeks trying my hardest to get them open. I don't want surgery again, but honestly it was so simple, and I felt amazing as soon as I woke up, no pain, nothing but free from this head clicking and pressure. Actually my dr here said it's not so simple, that he wouldn't even know how to get in there to dilate my e tubes. I may have to get a 2nd mortgage, lol, but we will figure it out. When I read my ins papers and what he actually got paid, its unreal. Maybe 10% of what is billed, the ins paid. Maybe he'll give me a deal. I see some hope in the near future!!! I will keep u posted.
Had second ear PE tube surgery on Tuesday, so now I have one in each ear. I can't tell yet if it's helping with the fullness/pressure, since the eardrum feels swollen and blocked on that side. I do remember having some of this stuffy/blocked feeling for a while after I got the first side done, so I'm going to try waiting it out patiently and see.
Let me know if the tubes provide relief. Also, did the tube in the one ear help with the crackling? Actually, I'm not sure if you mentioned sticky, crackling noises in the ETs when yawning, swallowing, etc. Did you experience that, too? [No need to answer--I just went back and read your earlier response. ]
Last edited by msMarieC; 09-22-2011 at 05:53 PM.
Oh, and DLT48, did you have sticky crackling sensations in the eustachian tubes, too, when swallowing, yawning, etc? Oh, and to top it all off, I woke up Saturday morning with a weird click/pop in my throat. Doesn't seem to be related to the ETD. It only happens when my head is turned a certain. But makes me think that all the tension and stress of the ETD is pulling other structures out of balance. So frustrating. :/
Hi, Jeni -- I just went back a few pages and saw that you had the click in your throat with swallowing! How bizarre! As noted above, I just developed this! I literally woke up with it on Saturday. I wasn't attributing it to the ETD, but now I'm rethinking that. This all started for me in May/June. How long before the sticky, crunchy sounds left? And same question regarding the clicking--how long before that passed? Was there something you did that helped with those symptoms?
Yes i have crackling. When i swallow, or breathe in. Even in the back of my neck i hear crackling when i move it. The ETD tenses up your muscles and you can get a stiff neck and shoulders. I go for a massage every once in a while to loosen up my muscles. ETD causes MANY other symptoms-but once you get rid of it, all the other things should go away. I feel like i am finally at the end of this awful problem. I've been a social hermit for 3 yrs, spending every minute either on the couch crying, or on the internet, trying to find answers. My husband has put up with alot. I don't think i could ever repay him for being so patient when i was hurting. I felt like i was so mean to everyone. I wrote my good bye notes to my family a few times.......you are not crazy to be so devastated! I thought i was crazy, until i started reading message boards and realized how it affects everyone this way. That's what makes me angry about my dr here, saying that drs won't do any new procedures around here because insurance won't pay. Ummmm does he know how much people are willing to pay for plastic surgery!!!! And they're not suicidal! So frustrating-we need more drs looking for answers and willing to try new procedures. I found my amazing dr in San Diego-he has been worth every flight from Utah to see him. For him, if plan A doesn't work, then he has a plan B, and if that doesn't work, then plan C and on, until it's fixed! Most drs give you that "deer in the headlight" look, and have no plan B. It took over 3 yrs to get a dr to diagnose me, maybe because they had no answer for me, on how to fix it?? There is an answer, just keep looking, have faith, and never, ever give up!
It was perfect for a few weeks, then I got a bad cough, went on a z pak and inhaler, but my ears started clicking again. My dr put me on a steroid spray and the ear popper for 2 months now. Not as bad as it was, but still not right yet. I forgot what it was like to really feel normal again until I had the dilation. It was like magic. Now that I know how I can feel, I don't want to go on with this condition very much longer knowing that my dr can fix it, but I need to have a little patience. But just knowing he will dilate them again with a bigger balloon and maybe put me on antibiotics longer next time, I have hope. I KNOW I can be fixed. And I won't have to suffer another 3 yrs not knowing how to feel better. It has to be worth it to you. I was completely drained of life and was willing to try the procedure. It worked, and I feel bad that I got sick and messed it up! But I'm willing to give it another try because it did work, so I have to give it another try.
Wow - hope and frustration intertwined! I can't believe the luck, but am also glad you know there is a light at the end of the tunnel--a way out.
What a battle we've all been fighting. What a struggle! As I noted in an earlier post, this has been much more difficult for me than chemotherapy. With chemo I'd feel bad for a couple of days, but I was never almost non-functional. Occasionally I had to nap, but that was it. ETD has diminished my quality of life.
I hope we all find a solution soon. Reading your story and Jeni's has been most helpful. I hope we can stay in touch and help each other see this through.
If i have learned anything in the last few years, it's don't ever give up. I almost did, but i got to "see the light" for a few weeks so i know THERE IS HOPE! I know most of us have lived without hope for a long time and that's a scary place to be. My dr told me he prays for me every day. I told him, i'm glad he does, because he's probably much higher up on god's list than i am!! I'm feeling fortunate that i am so stubborn!!! Always looking for an answer. I'm giving it my best the next few weeks. I have quit dairy products and i really believe it has made a difference. I actually went to the gym today and it's been 4 yrs! I have laid on the couch and lost so much weight there was no way i could have gone. So life is getting better. Our tubes are staying swollen for some reason, whether it's infection, allergies, or damage. There is a reason, even acid reflux can cause ETD, so look at every possibility. I am hoping i have an allergy to milk. I recently found out it bloats me like i'm 7 months pregnant. I've drank milk all my life, but allergies can come at any time. Keep looking for your answer, and if you really get to the point you just can't do it anymore, look at the new procedures. I don't know what coast you live on, but there is a dr on both of them that are PASSIONATE about ETD and really know what we are going through. Keep looking and trying!!!!! You are worth it!!
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.