Sorry I've been kind of quiet the past few days or so...had a big event I was presenting at this weekend AND got hit with the double-whammy: a nasty head cold. The only upside to the cold is it seems to have temporarily driven my ETD symptoms underground. I'm not going to get too excited over that, since I was tricked earlier this year into thinking a cold "cured" my ETD.
That said, I'd rather deal with a cold than ETD, so it is a kind of ironic holiday...
Other news...I contacted Dr. Poe's office and looks like I will be seeing him this spring if my ETD problem is still sticking around. He's booked through April, which I'm fine with because it gives me time to work on controlling mold allergy problems and other possibly underlying issues. If anyone can get to the bottom of this, I'm confident Dr. Poe can. But let's hope the ETD goes away with allergy therapy in the meantime...even though I've always wanted to spend some time in Boston and can then brag that I "went to Harvard," ha ha.
I'll report back in soon. Hang in there, everyone. Relief will come eventually...we weren't born with this monster.
P.S. Dr. Poe IS offering continuing education lectures to physicians demonstrating the newest eustachian tube surgeries...let's hope this means many will take his courses and learn the techniques, and that it will soon become a more routine and widely accepted approach to managing this horrible health nightmare. And that insurance companies will realize that this really can be the quickest route to health and recovery for the patient, instead of years of going back and forth from doctor to doctor.
Jenni i am sooooo excited for you to see Dr. Poe!!!! Dr. Weeks actually just flew back to teach this surgery at a conference in NYC (with the video of my surgery). He said my tubes will "be a star". lol. He was excited since he learned a new technique to getting to the tubes because of my anatomy. He said it was pretty tight in there. Its just so frustrating how do u get drs to learn this stuff? I started writing on another healthboard before this, and an actual dr would reply. His answer was there wasn't enough research yet......so how do we get the research, if no one is wiling to do it? And the money my ins could have saved by not chasing all my symptoms, but actually treating the problem...hundreds of thousands of dollars! Anyway i am so excited for you and can't wait to hear what he has to offer you. Everyone from all over the country talks about this Dr!! He's also suppose to be extremely compassionate, which is also very rare! I'm waiting to hear on ins. I am very lucky i have a woman who is a "liason" to my ins company, so i have someone to personally talk to and she helps me gets things pushed thru quicker.
We definitely need more than two coastal doctors offering new treatments! I'm in the Midsouth. The possibility of being able to afford a coastal trip is nil at this point. I've mentioned before, I've never been one to feel depressed--I'm a trooper, strong, work through the hard stuff and trust all will be all right--but this gets me down. I hate waking up in the morning because of it, and that's not like me. It's disheartening. I wish I knew whether I had PET or just regular old ETD. It's hard to know, because one might not present with the classic symptoms of PET (And I'm wondering, Jenni, if maybe you have PET and this is why the cold helps alleviate the symptoms and the tubes are not helping). Will add more later (to discuss why I'm uncertain which pathology I may have). Have to get to work. Glad you've got an apt. with Poe, Jenni! And glad to have found others who are consistent and determined in their mission to resolve this! Blessings, Anne Marie.
Marie, I think one of the hardest parts of this dysfunction is losing who we used to be. Having my own business, I worked many hours, but I loved it! And when I stopped eating from the pain, there was only one dr who really knew I was sick and that was my gynecologist of 20 years. Only because she KNEW me. All these other drs don't know us. Maybe they think we r just whining, and that we r just lazy. My dad didn't believe me when I told him how all these drs were dismissing me, so he decided to come w/me on an appt. He wanted to tell them, THIS WAS NOT HIS DAUGHTER, something is wrong. He got to see my reality. The dr told us " I was imagining all of my symptoms, because I had already been to the best specialists around". My dad was so ******. He just kept asking the dr "what's the next plan?". Of course since the dr had no clue what was wrong, I was told to see a psychiatrist--again. That my problems were in my head.
You need to get the right diagnosis of either PET ot ETD because they r the opposite. Have u researched each ones symptoms? What do your drs say about it? I know it can be confusing. At first i used to hear my self breathe-like thru a snorkle all the time, which sounded like PET. But after a while that went away to the feeling of water in my head and the crackling noises. Confusing! Dr Poe is the main dr working on PET right now. I found a great video on the web from him. I've spent almost the last 4 yrs obsessed and looking up info on my computer!! It can be life consuming.
I personally know that when I had my tubes opened I got a rush of energy, then I realized it was the level I had before, I just forgot what it was like to feel normal!
I understand the money situation, we have flown to San Diego 4 times in the last yr, but it has been worth it to find a dr that knows what he's doing and always is looking ahead for an answer. And I have an amazingly supportive husband, which helps.
I've given up spending my life on the net and realized I have to trust someone now to know what they r doing. I'm optimistic it worked once, it can work again, if my body will just co operate this time!!!
Ugh, having a cruddy symptom day. I was doing well for a few days, hardly thought about my ears, and then I exposed myself to what is supposed to be aggravating my symptoms (aka mold), and within a few hours, I started feeling that pressure in the back of throat and back jawline area (below ears) that I associate with e-tube pressure, and my tinnitus ramped up. My current ENT-allergist doesn't believe we can feel pressure in the e-tube, but that is the one thing I have to disagree with him on, as I do think I can feel mine...and the pressure feeling corresponds to the super crunchy noise when I flex my e-tubes to open them. I also got an attack of the itchy ears, and then only thing that calms that down is a benadryl pill, which I can't take during the day or I'll be a zombie.
It's very hard NOT to expose myself to the allergy antagonist because my job actually involves dealing in antique items, so it goes without saying that I end up around musty things that have been in storage for literally decades. My work studio smells extremely musty (it's full of old things!), so we are going to buy a second HEPA filter for there, more of an industrial sized one, and then a THIRD HEPA filter to run in my office. Geez.
Dlt, did any of your doctors ever tell you you might be having a reaction to something in your line of work? I know you said you caught a bug from your work that maybe caused the damage that started the ETD madness...
I love my job, and I have been doing it 14 years, so I can't really just up and decide to quit and pursue something else. I wouldn't make as much money, and jobs just aren't out there, especially for someone changing careers. A solution has to be found.
Another weird tidbit: my five-year-old daughter came into my office where I was working with some old objects, and soon was complaining, "Mommy, why are my eyes crying when I'm not sad?" Her eyes were beet-red and streaming tears. I think she's allergic, too! I quickly removed the objects to the studio storage area, and her symptoms subsided rapidly. It really is enough to make me paranoid and a little hysterical.
Today I'm ordering all my ear-related health records to be forwarded to Dr. Poe's office in preparation for an April appointment. If anyone is preparing to visit him or Dr. Weeks, it would be a good idea to start gathering your records so they won't have to repeat tests, like the MRI I had in Jan. The other thing is, these doctors are such experts in their field that they may be able to spot a pattern in your health history that has been ignored by all the others...
Marie, I have thought about PET and whether I have it...what makes me think I probably don't is that decongestants do help me temporarily, and I definitely don't have autophony or breathing sounds in my head/ears (mine is more muffled when the ears feel especially bad). My two symptoms are a feeling of fullness that now is no longer in the ears but confined to the throat/under ear area and intermittent tinnitus. Once in a while, I'll get spasming myoclonus in my right ear, but there are noise triggers I try to avoid that cause it (talk radio up too loud, certain pitches of voice).
Having a cold definitely makes me feel better, though, and seems to temporarily freeze my ability to click my throat/e-tubes, which has become an OCD-like habit I get stuck in at times. My newest doctor jokingly said it's like kegel exercises for the throat, lol, because it's something you can do without anyone being able to notice.
Maybe we should get a rundown of everyone's symptoms to compare/contrast? Post them if you can.
Jenni sound like allergies may play a big part for you in all of this. i have tried to change my environment as much as possible with the sprays and shampoos i use on the dogs. The only chemical i have is a disinfectant for cleaning, that is suppose to be the safest one. I did get my infection from inhaling the dander of a dog with pseudomonas infection, but my ETD came on after my first sinus surgery, within about 2 weeks i was back in my drs office complaining of feeling like i had water in my head and my ears constantly clicking. I told my husband today to imagine the most annoying person he knows is following him around and every time he swallows they crunch food in his ears!! And you just want to smack em!! I may have some good news tho, can't say yet, but hopefully by tomorrow i will know for sure. I just know i need to get better soon, this has been such a strain on my marriage, mostly me feeling so much guilt, because all i can think of is getting better and the noise in my head constantly! Can anyone else hear their tubes crackle when they breathe in sometimes? Sometimes i just move my jaw a certain way and they do that little snap....so annoying!!!! just cut my head off!
Ok so here is my exciting news! Dr. Weeks office called and asked me if i could fly there by Tues so (that show on tv with drs-that i don't think i can name) can tape the ET dilation surgery! Then i have to be in Hollywood on Fri for taping! I am so excited that he is going to be able to show so many people about this new surgery! Finally someone to give everyone suffering some HOPE!!! My head is spinning, so much to do, it's crazy! I can't wait to feel better. Maybe this will open doors for more drs to start using the new techniques available out there so they can HELP people instead of dismissing us. got to run, i'll keep in touch!
The Following User Says Thank You to dltt48 For This Useful Post: SundanceWoman (10-21-2011)
I'm posting another update about my ear problems. My ENT doctor referred me to another ENT doctor who performs adenoidectomies and ear tube surgeries. This Tuesday, I had an appointment with this surgeon who looked at my adenoids and stated that though there was "residual adenoid tissue" it was not blocking the eustachian tube. Therefore, he wanted to hold off on any surgery. I went through another series of hearing tests there in which they found that my hearing was pretty normal and that all I have is a "sluggish eardrum." Has anyone else here ever heard that term before? In the meantime, this ENT doctor sent me on my way with yet another nasal spray (Dexacort) along with a follow up appointment in December.
So there continues to be no resolution for me. And now I question if I possibly have a different condition affecting my ears such as TMJ disorder. I've read that TMJ may have similar symptoms to ETD such as ear pain, ear fullness and tinnitus. When I went to the dentist for a check up several months ago he stated that my teeth had some kind of erosion possibly due to grinding my teeth at night. I don't really know if I'm grinding my teeth at night if I'm sleeping, and there has only been a few occasions in my life in which I've woken up with jaw pain. Sometimes, I notice a slight grating sound when I open and close my jaw, but I don't experience any pain or headaches. I'm wondering what kind of specialist tests for TMJ disorder? Is it a dentist or orthodontist? Many of these TMJ disorder related questions atr more suitable to ask on the TMJ Healthboard. I just wonder about what else may be the cause of my ear problems.
Dlt, that is AWESOME! Wow! I don't have cable, but hopefully will be able to watch it online sometime...super exciting!!! This will be great to get the word out there about this new surgery. You will be a star!
Leah, it may be worth at least a trial run with a TMJD bite splint to see if it starts resolving symptoms. Some people find that that IS exactly what is causing their ear issues: referred pain from stressed TMJ joints.
You can find dentists that specialize in the disorder. From what I understand, most of it diagnosed based on reported symptoms. My ENT referred me to my previous HMO's TMJD clinic. I had a bite splint made for me a few months back and tried it to see if it would change anything about my ear issues. It cost about $40 through my insurance, plus a couple copays as I had to go back a second time to have it refit; it was causing damage to the inside of my cheeks. So basically it cost me $100 with insurance to give it a shot. Unfortunately, it seemed to worsen my feelings of fullness in the ears. And since my ears were affected so negatively by elevation changes while driving, I finally straight out asked the dentist if TMJD could wreak such havoc with the eustachian tube itself. He looked at me like I was slightly crazy, and indicated that it couldn't. That's pretty much when I gave up hope treating it this way, because I'm sure my e-tubes are involved.
That's when I decided to go ahead and get PE tubes, first for one ear and then the second ear. And they do help with driving. I've had more good days than bad since tube surgery, but I still get feelings of fullness...now lower down, more in the deep ear/back neck/below ear area. From what I understand, that's where the e-tubes actually are. And I think I can feel when they are inflamed, even though my middle ear is nicely depressurized by the tubes. I guess it's better than having the pressure throughout the whole area, but I was hoping for a complete cessation of symptoms, of course...
One thing I will say has died down to almost nothing is that crackling with swallowing or clicking while speaking. I'm grateful for that. It took many months for that to go.
Sluggish eardrum I have not heard, but it almost sounds like they are saying you have some kind of impedance in the middle ear space...because I'm not sure what else would cause a sluggish reaction beside a positive/negative ear pressure issue. Which again brings us back to ETD. The problem with ETD, I've found, is that if your problems are intermittent, if you don't get tested right during a bad spell, your finding can come up as normal. "Luckily" the day of my first tube surgery, my right ear was having a hard time. And the tests picked up on it...not only the tympanogram but the hearing test showed I had some kind of obstructive issue in the middle ear on that side. That has done a lot better with the tube, as it used to be my more symptomatic ear. The other thing is that now I can fly with the tubes in, whereas before it would have been dangerous since my ears couldn't equalize pressure reliably. And we're celebrating my mom's 75th, so it was important to me that I be able to fly on the 18th of this month.
dlt48 thats awesome! Let us know when the show airs, cant wait to see it!
My last appt my ent brought up my deviated septum, he suggested that it could possibly play a role in ETD. Does anyone else have or had a deviated septum (or had surgery) and noticed any relation to ETD? The TMJD had me thinking, just so much that is around the ear that can effect it, so I wondered if the septum could do the same.
Lenore, I have heard of sinus surgery performed concurrent with tube surgery. A dr in NYC (I think?) does it that way. Also, I read about a little-understood sinus located behind the eyes that can interfere with ears and give us that dreaded stuffy feeling.
I just flew last night for first time since pe tubes were installed. My ears did not get pressure build-up on decent, but the right one still popped lightly at least 5 times when landing. I do think the e-tubes continue to try to function even with tubes in. My ears still pop when driving hills; it is a slightly different sound than before tubes. More a soft snap like a rubber band. It's not too annoying as it's infrequent enough not to be a nuisance. What is more troubling is that my ears, especially the left side, seem to still react and feel fullness and inflammation deep inside on days when I get a mold overload. And that's several times a week due to my job. We have just invested $1300 in heap filters, including an industrial sized one for my shop. I feel depressed that this is attacking my livelihood as I have been doing my business with no issues for 14+ years. My degree is in English lit; jobs with a BA are not exactly plentiful so I don't know what I'll do if I can't get a handle on these symptoms.
I have a followup appt w ENT-allergist on Nov 2 and am asking for full allergy screening and to get started on the shots. I also just sent a request for all my ear-related records to be sent to Dr. Poe. If this isn't getting better by spring, looks like it's Boston for me.
PS My ears popped 4 times while writing this
Hope everyone is starting to feel better. Do know that some of the worst symptoms (complete ear blockage, crackling when swallowing or speaking) have passed for me. So recovery happens...but for me it has been a very slow process...
DLT, can't wait to see your update; thinking good thoughts for you.
The Following User Says Thank You to jenni9033 For This Useful Post: dltt48 (10-19-2011)
Jenni, I'm so glad to hear that the pressure equalization tubes are helping and that several of the worst symptoms have abated. I hope the trend continues and that you'll reach full recovery by spring!
Interesting that you mention the small sinus behind the eyes, because for a long time it felt like I'd blown something out right behind my left eye, toward the outer edge, and too, just below it, after doing several Valsalva maneuvers one particular day. It took weeks before that eye felt normal again.
My Eustachian tubes seem to be improving, but there's still some pressure build up, especially when driving, and there's still that crackling (though definitely not as much!). The part that's really disconcerting right now is the pressure not in the ear but in the tissues surrounding my left ear (near the mastoid and just below). Not sure if it's muscle strain, but it feels like glands in these areas are becoming increasingly more swollen. Ah well . . . onward I go. Hoping everything will clear sooner or later.
Thanks for keeping us posted. If work becomes a real issue you may consider becoming a teacher via alternative licensure (you get licensed as you work). Many states now have such programs. Just a thought.
Wishing you and everyone else good health.
Last edited by msMarieC; 10-19-2011 at 04:55 PM.