i cant beleive this...the ent told me today i have hydrops! all my tests came back normal i cant understand, when they did the test on the inner ear my fluid levels were well within the normal range! how is this all my tests came back normal! he said because i feel the pressure and fluid thats how he knows! please help! lib

Sounds a bit odd! Must say you seem to have a bad fluid problem where as mine is mild and v intermittent - just eustacian tube problems. A lot of inner ear conditions can cause fluid not just hydrops inc ETD and Lab. Hmm. Maybe he is right? xxx

Sounds a bit odd! Must say you seem to have a bad fluid problem where as mine is mild and v intermittent - just eustacian tube problems. A lot of inner ear conditions can cause fluid not just hydrops inc ETD and Lab. Hmm. Maybe he is right? xxx

dont you find it odd that my fluid levels were well with in normal range, i cant understand how the inner ear fluid test was normal.
i think i need a second opinion, what do you think, he also said my sinus on the same side was blocked and i need surgery on it. but that would not fix the inner ear. what do you think? lib

dont you find it odd that my fluid levels were well with in normal range, i cant understand how the inner ear fluid test was normal.
i think i need a second opinion, what do you think, he also said my sinus on the same side was blocked and i need surgery on it. but that would not fix the inner ear. what do you think? lib

Isn't that fluid test for the middle ear? Hydrops is in the inner ear......which is behind the middle ear.

Hello there,

Just to say that you should get a referral to a neurotologist. See the post 'Which Specialist to See' - put that heading in search and it will bring up the post. They are the best people to make the call on an inner ear diagnosis - if it turns out you do have hydrops then you want to be dealing with someone who knows their stuff, knows which meds to give you and can help to get the condition under control. The fluid test you are referring to is, I presume the ECOG - it isn't entirely reliable either way, whether positive or negative and isn't really the ultimate way to diagnose hydrops - generally you need someone very experienced who can listen to your symptom history and based on that plus tests can make the call. ENT's are not always the best people to do this.

I remember one of your other posts - this ENT told you that it's not possible for lab to go on for more than 3 months - a good indicator that he may not know his stuff regarding inner ear conditions - I am being treated in a neurotology department and am 15 months in to this bout. They clearly see this all the time. However, it is unusual in the earlier stages (not later) for lab to be episodic, although not necessarily unheard of. I would seek out a good neuro oto and get a second opinion.

If it is hydrops, don't despair - there are many people walking around with hydrops, on the right diet and medication, who feel a lot better a lot quicker than people with uncompensated lab. The people you often come across on the net with hydrops or menieres are often the most difficult cases who are unfortunate to be hit very badly. This is true of any condition - I have 2 friends living very happy lives with asthma - there will be an unfortunate few who are disabled by asthma. People who feel well with hydrops probably aren't bothering to write on healthboards. It's totally possible that even if you do have it, you might have this bout and then never be troubled again, or alternatively get the condition under control with diet or drugs and rarely be troubled by it. Many, many people live happy, active lives with hydrops.

Hope this helps,

best,

hbep.

Hello there,

Just to say that you should get a referral to a neurotologist. See the post 'Which Specialist to See' - put that heading in search and it will bring up the post. They are the best people to make the call on an inner ear diagnosis - if it turns out you do have hydrops then you want to be dealing with someone who knows their stuff, knows which meds to give you and can help to get the condition under control. The fluid test you are referring to is, I presume the ECOG - it isn't entirely reliable either way, whether positive or negative and isn't really the ultimate way to diagnose hydrops - generally you need someone very experienced who can listen to your symptom history and based on that plus tests can make the call. ENT's are not always the best people to do this.

I remember one of your other posts - this ENT told you that it's not possible for lab to go on for more than 3 months - a good indicator that he may not know his stuff regarding inner ear conditions - I am being treated in a neurotology department and am 15 months in to this bout. They clearly see this all the time. However, it is unusual in the earlier stages (not later) for lab to be episodic, although not necessarily unheard of. I would seek out a good neuro oto and get a second opinion.

If it is hydrops, don't despair - there are many people walking around with hydrops, on the right diet and medication, who feel a lot better a lot quicker than people with uncompensated lab. The people you often come across on the net with hydrops or menieres are often the most difficult cases who are unfortunate to be hit very badly. This is true of any condition - I have 2 friends living very happy lives with asthma - there will be an unfortunate few who are disabled by asthma. People who feel well with hydrops probably aren't bothering to write on healthboards. It's totally possible that even if you do have it, you might have this bout and then never be troubled again, or alternatively get the condition under control with diet or drugs and rarely be troubled by it. Many, many people live happy, active lives with hydrops.

Hope this helps,

best,

hbep.
hi,
thank you so much for the uplifting message, i have been better these last few weeks, except for the anxiety and i dont know why i keep waking up in yhe middle of the night sweating. i hate the whole diet idea, i dont want to have to live like that but i have no choice if it is what he said hydrops or mieners syndrom. when you say have this bout and never be troubled again do you think this can just go away? (the dr. MR. never lasts longer than 6 ) said this is for life, makes me so sad, i have not been spending any time with my hubby or daughter because i am so freaked out.i think a second opinion is a must. thank you again for your message i do really appricate you and all you have done for me by talking! lib

Hi lib,

I'm so sorry you're feeling so anxious and down. Ok, first things first, please do get a referral to a neurotologist - honestly - I have bumped up the post 'Which Specialist to see' it's now on the first page of the board, do read that, and then you could ask Subs if he'd be kind enough to post the list where you can find a neuro otoI do know that tests can come back negative even if it's lab or hydrops - how long have you been ill? I do feel that if you are doubting your diagnosis this will make your anxiety much, much worse, I was frantic before I felt I was in the right hands with the right diagnosis - the 2 ENT's I saw were awful. I'm not saying yours is wrong - I'm just saying most ENT's, unless they have made a specific effort to specialise in dizziness, just aren't specialised enough. Having said that, I do think until you see someone else you should probably stick to the advice the ENT has given you, stick with a low sodium diet, see if it helps. It can't hurt, but it could really help - if it is hydrops then the key is to get it under control with diet and/or drugs.

Secondly - I don't think you should base the idea of future happiness and an end to your anxiety around this not being hydrops. I have no idea if you have this or not, but to hear a condition is for life is tough - and yes, in effect, hydrops is a life - long condition, BUT it differs widely in severity. The reason why I say you may never be bothered by it again is because some people have a few attack and then aren't troubled again for yrs or only ever very sporadically, or never - alternatively they control it completely with diet and/or drugs - the diet isn't the right solution for everyone, although generally people should try it and see. That's why I mentioned asthma - I'm absolutely sure you will know people with incurable conditions - asthma - excema - irritable bowel - I know people with all these conditions - they all live full, happy lives, rarely troubled by their conditions. Of course if you search hard enough you will find people who have all these conditions, including hydrops who are very ill, but generally they are the exception to the rule. Many get these conditions under control and are ok. Believe me when I say there are people who improve and get back to normal far quicker with hydrops than with labyrinthitis - hydrops isn't curable but it can be treated with drugs, often very effectively.

It's really, really important that you try and stop worrying - at this stage some of the awful feelings you might be having could be down to the anxiety caused by your condition as opposed to your condition. During the times you feel better you should be enjoying that and enjoying spending time with your family. Whatever this is, the best thing you can do for yourself is get the stress you feel about it under control, easier said than done I know, but the mind can have a massive impact on the body. Whatever you have, worrying isn't going to help, it can only hurt. Like I said above I do feel one of the things that will help you do this is to feel confident in your diagnosis - get a second opinion from a neurotologist.

Hope this helps,

hbep.