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Old 10-06-2011, 02:40 PM   #46
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Re: My Story of Eustachian Tube Dysfunction

Hey, Jenni ! ...
If any one had told me a few months ago that I would be soooo happy about knowing which direction to point nasal spray.....after all these years. You are right , it is unbelieveable that this is not common knowledge....even the pharmacists don't seem to ahve a clue either.
Well it's Thanksgiving weekend here, ....good time to get all this terrific info & to celebrate Hope !!
Mia

 
Old 10-06-2011, 07:43 PM   #47
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Re: My Story of Eustachian Tube Dysfunction

I can relate! i wasted my first bottle of spray because i didn't know how to use it, i evenually paid for the 2nd bottle $130, but i didn't care, i wanted it to work so much! I'm on my 3rd bottle, so far no results, but at least i know it's getting to my E tubes!! hope u have better luck!

 
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Old 10-07-2011, 01:25 AM   #48
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Re: My Story of Eustachian Tube Dysfunction

thank you dlt48 for sharing more about Dr weeks. Its good to know hes out there, not sure what else I should do, if putting tubes in is a good idea or not. Ive heard so many stories good and bad. But thats my Dr's only option.

Jenni I was trying to find the post you guys were talking about with the correct way to use nose spray, was curious where to find it, I want to make sure Im doing the same. My Dr told me to angle it to the direction of the ear. But whenever I do that the spray seems to bounce off the side of my nostril and just drip back down out my nose. I mean how far do I need to shove the tip up my nose for it not to do that? I know your not suppose to spray towards the septum and he says if you do thats what causes your nose to get bloody from the spray, but no matter what I do my nose gets bloody from using the spray. I also read some where that with ETD to angle the spray straight back like at a 90 degree angle from your face. So I was curious which technique is correct.
I do notice a difference from flonase and nasonex. Flonase made my nose bleed more and didnt seem to help with my symptoms, but nasonex helped more. When I dont use it - talk about sinus pain! So Im affraid to stop taking it.
Also curious Jenni about Astelin, does it seem like it has the same side effects as other antihistamines? My problem is I cant take decongestants and antihistamines, the side effects are too much for me. (Not a good thing with ETD)
When I started having this problem I did do the allergy testing too, had the shots for 3 years. They didnt help me, but that was a long time ago, I wonder if they are better now.
I do think allergies play a huge role too. Im in the process of restuffing our sectional couch. Same time this started again this year we got the new couch a couple weeks before, its filled with feathers. Hypoallergenic or not Im not taking a chance. Ive read alot about people sleeping with blankets and pillows with down goose or duck feathers and never think anything about an allergy to them. Coincidence or not for my case I dont know... but the feathers are going bye bye.

 
Old 10-07-2011, 09:44 AM   #49
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Re: My Story of Eustachian Tube Dysfunction

I spray straight back almost to my throat so it can hit your tubes. I also read right after to plug your nose and blow a little and that should help it go up into your tubes.
I had a melt down last night and emailed my dr saying i have to figure out how to have this surgery again. I can't do it anymore. I can't focus on anything because of the head pain. I don't want to leave the house-ever. I can't sleep because my shoulders and neck are so tense i can't get comfortable...I'm just losing it. I think its worse now because i am not on any pain meds like i was before my last surgery. Its just seeing what my ins will pay for and how much money i will need, but, i just can't do it anymore. Sorry so negative. I did have a woman contact me who is going to have this surgery done in Nov. So it will be nice to hear about someone else's results too. i'll keep you updated

 
Old 10-07-2011, 10:22 AM   #50
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Re: My Story of Eustachian Tube Dysfunction

dlt48,

my heart goes out to you....I think it is good you can let off steam here.......
The despair is very hard to deal with......you have been through so much....

Let's hope your Dr contacts you soon.

I wanted to mention a device I have for self-massage. It is called a Shiatsu massager. You plug it in, position it behind your shoulders, neck ( I even do my feet) and these metal rotating metal balls.....under cloth of course, ...... mounted on a thick plastic frame, massage gently.....who knows ,it might relax your neck muscles etc if you can track it down.

Hang in there !!
Mia
xo

 
Old 10-07-2011, 11:45 AM   #51
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Re: My Story of Eustachian Tube Dysfunction

Dlt, sorry to hear of your distress. I WISH, wish, wish there was a quick solution, some magic little something we could alter, take, do to make this miserable condition disappear. It's good to vent and reach out for help when we've reached our threshold. Quality of life is critical! My heart goes out to you. I'm keeping you in my thoughts and sending you support and strength. Do let us know how the other patient's surgery goes--what results she obtains. {{{hugs!}}}}

 
Old 10-07-2011, 01:42 PM   #52
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Re: My Story of Eustachian Tube Dysfunction

Hello !
Jenni : I now have an appointment mid-November with an allergist, thanks to you sharing your info....I admire how pro-active you are.( I have been whining for months)

dlt48: do you like the hydropulse irrigation device ? Does it bring any relief. I am wondering about ordering one.
I googled "bio-feed back & ear pain" & saw some interesting stuff.....might be worth a look for you as you try to manage all the discomfort.

msMarie C; if you google nasal irrigationsystems reviews , you will see the devices that dlt was referring to.
The hydra Sense I mentioned is not a mechanical device, just saline out of a bottle , but with a good nozzle .
Mia

 
Old 10-07-2011, 06:02 PM   #53
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Re: My Story of Eustachian Tube Dysfunction

I do have a hydropulse They r about $100 but I love mine and use it every day. Since I groom dogs, I use it everyday after grooming to clean any bacteria out of my sinus. My thinking was....if I spend that much $ on something I will use it! But it is so much more comfortable to use than another irrigation system. Dr. Weeks e mailed me back..same day...incredible. I apologized for being all over the place. One day I think I can wait and the next I'm desperate. I think not being on pain meds since my last surgery I can't focus. I never get a break from the pain so I'm more desperate. He is going to check w
my ins and get back with me. He said let's finally get this gone! He's confident that he can fix this. I know it did for a while, so I am willing. No other dr has given me even a moment of relief. Or even mentioned this new procedure. I will let u know how it goes. Hopefully this will be it and it will give others hope. That would be the most amazing part to help everyone else who is suffering.

 
Old 10-07-2011, 06:09 PM   #54
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Re: My Story of Eustachian Tube Dysfunction

"The hydra Sense I mentioned is not a mechanical device, just saline out of a bottle , but with a good nozzle."

Ah, I see. I thought it might have been some kind of oral, internal hydration booster. I've just been drinking water to hydrate. With respect to the possibility of tissue hydration being helpful for people suffering from ETD, one gentlemen (on another board) recommended Hyaluronic Acid. From what I've read, it's good for synovial fluid, not sure it will help with ET mucosa, though, unless there's a connection between the two. I might pick some up from my local health food store and add to my daily supplements. As for nasal rinses, I've been using the Neilmed saline solution. Sometimes I add additional nasal meds or oregano oil to the mix, but nothing has worked long-term as of yet.

 
Old 10-08-2011, 12:15 AM   #55
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Re: My Story of Eustachian Tube Dysfunction

dlt48,
Has Dr Weeks said when this type of surgery will become more popular where the average ENT will know about it and beable to do it instead of the regular tube surgery? I just wonder how long its going to take till all insurance companies will accept this time of treatment. And why so many ENT's dont know about it, dont Dr's have to go thru some kind of continuing education for their license? Its just so aggravating that our level of health is based on what Dr we happen to see.
What can we do to make this surgery more mainstream?

 
Old 10-08-2011, 03:21 PM   #56
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Re: My Story of Eustachian Tube Dysfunction

I asked my ins liason I've had thru all this. I told her it was all about the $. She couldn't believe it. If ins won't pay drs won't learn it. My pain dr told me, drs need to go to these conferences, maybe they won't use what they learned in a week, or a month, but maybe next yr they will need this knowledge. He's all for education. All I can do personally is blog anywhere I can that this works. Yes I have to do it again. But my dr is confident. He said , let's knock this out for good !! What other dr is willing to go out on a limb for any of us!! Hopefully this will take this time. He is confident it will, then I will shout from the frickin rooftops so others will quit chasing all our symptoms and fix the root of the problem!! Right now I can't even move my neck. I know why, but it's so frustrating seeing others spend so much money and time chasing symptoms.. My dr always ends his e mails by saying, my friend, we will beat this. And I know my ins doesn't pay him crap. I've seen the eob's. But he's still willing. I will keep in touch and hopefully as this gets proven it will be a standard procedure and change so many lives!!!

 
Old 10-09-2011, 10:52 AM   #57
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Re: My Story of Eustachian Tube Dysfunction

DLT: Can you tell me more about your neck symptoms? How do you think they relate to the ETD? Did you have neck problems prior or have you noticed that the stiffness coinciding with ETD is different? Just curious because my neck has developed new symptoms (swollen glands, muscles, tightness all around, especially down the sides from the ears) and I wondered if others experience this. It don't think it's merely tension. It feels like tight balls of pus wanting to pop. I can feel fluid flowing around (not in) my left ear. It drives me nuts. For me, this all developed after the ETD!

 
Old 10-09-2011, 03:22 PM   #58
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Re: My Story of Eustachian Tube Dysfunction

For me, never had neck problems before ETD. I believe its from tensing up so much because of the pain we feel in our heads. I have done physical therapy and been to a chiropracter and hypnotist, but when the ETD is gone, so is the neck pain. I wish i could describe for you how i felt after surgery. Not only was the pain gone, but my energy was back-i don't understand it myself, i'm sure it has to do with chronic pain. I'm tired of wasting my life "waiting" when i know what worked. I just got back from taking lunch to my 96 yr old grandma, and we discussed life and death. All she has now is memories. I'm exactly 1/2 her age and i want more good memories so when i am 96 i can say, i made the best of my life. And right now i'm not. I am willing to take that chance to be better. I don't know how long it will take for drs to "catch up". I will ask Dr Weeks what he thinks when i see him. He teaches at conferences all over the country, so he would know. How do new procedures get approved if no dr is willing to step out of the box? I'm so sick of drs staying in thier "little protected boxes"!!! I hate reading of everyone suffering, it breaks my heart because I get it...how can something so stupid as ETD ruin your whole life?? It does tho, everyone it touches, any sex, any age, from any country. I've heard from them all over the healthboards. And the funny thing is most are willing to do ANYTHING to get better. We just need drs to catch up. That's why i am going back to all my drs to tell them what they missed in my diagnosis. My biggest problem now is I can't focus to do even the simplest task. I quit getting the paper because i couldn't concentrate to read it. I have so much work for my bus backed up because i can't make myself focus on anything...... I've become a hermit, or a "hobbit" as my one son calls it. I'm only 5 ft tall so i guess i am a hobbit, that's a hermit!! Its a chore to have to leave the house to buy groceries. I know the depression is creeping in again, that's why i asked Dr weeks what he thinks, and when he said lets get rid of this thing once and for all, i am in! I will ask him about how many other drs are willing to do it and how many insurances are paying. I know one of his patients contacted me. She has to pay for the dilation part, but ins is covering the rest. I thing there is a way to figure it out for everyone. I just hope he can book me soon.......keep up your hope everyone!!!!

 
Old 10-09-2011, 07:51 PM   #59
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Re: My Story of Eustachian Tube Dysfunction

Hang in there, Dlt! The one thing that keeps me going is knowing that the only constant in life is change. It will not always be like this. I trust that. And I hope all goes through with your insurance quickly and easily for the new surgery and, too, that the larger balloons will relieve you of this problem once and for all. Rooting for you, for all of us. Big hugs!

 
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Old 10-09-2011, 08:13 PM   #60
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Re: My Story of Eustachian Tube Dysfunction

Well put , Marie !

 
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