Joni63

[PETD is Patulous Eustachian Tube Disfunction - stays open all the time instead of opening and closing when needed. It is a major pain!

Did you have your specialist visit yet twinsmom? Wondering how you made out?

What is a PETD?

twinsmom,

How did you 2nd opinion go?

Joni

so anxious to hear about what the blood work showed? I know that before my MRI with gad certain tests..think to see about kidneys had to be ok. Was that it?

Judy

Judy! So glad your new ENT is very good! Unbelievable that the other Doctors couldn't figure out it was ear wax causing your problems. Stick with his guy - he sounds awesome.

My mom recently bought me a Sinus Rinse bottle caused NeilMed from Walmart. It's supposed to be as good or better than the Neti Pot. I haven't tried it yet, but plan on it soon.

The bloodwork for kidneys was fine. It was my vitamins that are off. I'm very low in ferritin (7) and vitamin D. My Dr. is good at taking the tests that I ask for, but not really good with vitamins because she told me to take a multi and she'll re-test me in a month. I'm trying to supplement somewhere between a normal dose and a dose for anemea. I bought some liquid D, (Carlsons) and liquid iron (Florivital) and I can tell you I will NOT buy liquid anything ever again, lol!

I also cancelled the MRI for now. I called the office and told them I wanted to try the vitamins for a while to see if that makes a difference with my tinnitus before I do the MRI. They said it was fine and my bloodwork for kidneys would be good for 6 months.

I really believe the vitamins are causing the tinnitus, especially the D which I think started to decline since August because I stopped drinking milk. December was when I noticed it and that's when the sun is hard to get enough of.

Oh, and the fluid in my ear is gone! The ENT never mentioned it, but I figured it was still there. But when I went to my PC she said there is no fluid in either ear. And it does feel much better!

Glad to hear all went well with you Judy.

I had my visit to the ENT and he said everything is working normal and my hearing has returned - but I still hear myself breath and when I talk it is like I am in a barrel. He doesn't want to see me for a month and hopes that the Eustachian Tube will heal by itself and go back to normal.

My doctor didn't diagnos the follwoign - he is avoiding it since he is so busy...But of what I have read on the web - it looks like I have a Patulous Eustachian Tube PET - open all the time. It can happen when you lose only 5-10 lbs in weight (I lost 10 while getting the celiac diagnosed) and apparently 1/3 of the PET patients have an autoimmune disease! Sometimes if you gain weight back it goes away - but otherwise it has to be dealt with with nose drops and sometime surgery!!!

I am going to get a second opinion tomorrow...

Hi twinsmom,

That is great you found some information that could be your answer. I hope your 2nd opinion goes well and you get some relief! I think not knowing what's wrong is worse than having the answer.

It's great news that your hearing has returned to normal. Maybe your ENT is right and it will heal by itself and you won't need further intervention.

twinsmom, did they ever suggest an MRI for you? It just seems as though they would be able to see what's going on with your eustacian tubes that way.

Keep us posted about your appointment tomorrow.

I went for bloodwork today for the MRI and my PC is in the same building so I popped in to check the results of bloodwork I had done last week for thyroid and different vitamins. Turns out they need to see me so something must be whacked out. I'm kind of glad, but a little nervous.

I'm wondering if thryroid problems or vitamins deficiencies can cause ringing in the ears. I think I've read that both can, but I need to go digging around some more to find out for sure.

Maybe I should just put off the MRI with gladolinium until I get treated for whatever is wrong from the vitamin/thyroid tests. My appointment is this Monday.

Thank you for the info about the Chropractor. I will keep that in mind if I get no relief from the ENT.

Had my visit today. They did a complete hearing test and everything looks and works normally. The ENT looked baffled and is sending me for an MRI of my head. He said he was looking for damage to the 8th nerve? I'm pretty nervous about the scan and what they will find. I'm waiting for them to call me back for the referral before I make an appointment.

I choose less invasive practices first. When my ear starts building fluid I go to a soft touch chiropractor (activator style). I've actually had to grab a tissue a couple times during an adjustment because he got my ear to really draining. It was gross but OH it felt so good to have that relief.

Can you explain what the Choropractor does to get the fluid draining? I'm very interested in alternative methods. I've considered candling...any opinions if that would help ear fluid?

Thanks!

Did they have you flushing your outer ear when they punched the hole in.....to help drain and to prevent further infection? Seems like in this day and age they would have gotten away from such barbaric practises and found something more effective than that!

flourgirl, Is it common practice to have a hole put in your eardrum for drainage. Is that what you are saying is barberic or the flushing out of the ear? I'm not sure I would want anyone to purposely puncture my eardrum without trying many, many other options first. It sounds dangerous, but for all I know it could be everyday common practice.

Belly Fat

Thanks -

I forgot to add that I am on the steroids (since this past tuesday - he doesn't know what is wrong - but he said steroids may help??) Maybe he is thinking something is inflammed in there - so far it isn't working!!!

I was also just diagnosed as Celiac 2 months ago and have been gluten free since then. I have never had ear problems!!!

I go to the ENT again on tuesday and will suggest the clogged eustasian tube possibility. I have heard alot of talk about getting a cat scan to diagnose things for the ears - you may want to suggest that too - I am.

I will let you know what happens with my ENT appointment too. It is driving me nuts!!!!!

I really think you may need further testing. Maybe the steroids will shrink swelling, if that is what is causing your problem. I hope you get relief soon. Let me know how you make out tuesday.

I've only had one other ear infection in my life and it was in the same ear as I'm having most of my problems now.

I know how it must be driving you nuts. I feel the same way at times. Sometimes the ringing will get louder during the day and it makes me stop for a minute to get my bearing on where the sound is coming from. It's very strange when I realize it's just in my head and no one else can hear it.

Good luck to you. I'm having 2 Redbridges tonight to see if that will help. Not a solution, but I just feel like a couple beers.

I had the flu a month ago and got an ear infection. My ENT put me on an antibiotic and the infection went away - but the fluid did not. So they did a myrinotomy (put a hole in my ear drum) to make the fluid go away. The fluid went away but I still can't hear well. I can hear myself breath and talk - like a finger is in my ear - and have pressure in my ear and I am terribly uncomfortable - a month later. I read something about Auto Immune Ear Disease (AIED) and or Meniere's Disease which can be associated with or brought on by celiac.

Has anyone had problems with their ears like this?? Or know anything about the diseases above - or have any suggestions on how to fix it!!!

I'm in the middle of trying to get my ear problems figured out now. Mine started ringing in December and have not quit. (I was just dx'd Celiac in August) I ended up with an ear infection about a month ago and was put on antibiotics. Like you, my infection has cleared but the fluid and pressure is still there. I'm visiting an ENT on Monday to see if they can figure out what's going on.

I've read that clogged eustacian tubes can cause fluid in the ears. It surprises me that I'm having this problem now since my nose has been stuffed up all my life and has been so much clearer since going gluten free. It makes no sense to me.

I'll let you know what happens after my appointment monday.