a bit of a blow - Inner Ear Disorders Message Board

scant5 · 08-12-2003, 09:18 AM

First of all thanks hbep and Jen for your advice on a neuro. I have written these names down. On a bit of a bleek note, I knew I would be opening up a can of worms by doing this. I made a few calls yesterday, first up to the ENT clinic hoping they could direct me to a neurototo and the Dr. spoke to me specificically, so I drilled him about my results and he is convinced although not 100% that it is not inner ear related. That was my first blow. Then I called a Dr. who is very reputable the one that everyone tries to get into see. I called to see if she had any names. The Secretary called me back later in the day to say unfortunately she did not know anyone to recommend. Needless to say at 7:00 this morning I get a phone call from this Dr. to talk to me about what has been going on and what she told me was that I may have to accept the fact that sometimes there is no answer to what is going on and that I may have to come to terms with this and have some residual effects of this for the rest of my life. I have now been put into such a state of funk that I have to go and see my acupuncturist to see if he can mentally pull me out of this. Hearing that I may never fully recover was something I never wanted to hear. Forgive me for being so glum but I think I need to really think about the Neuro because I don't think mentally I can subject myself to another let down. I actually feel pretty good as far as my symptoms but my mental aspect of this is probably at its lowest right now. I cried all morning. My husband can't stand to see me this way....I can't stand to see me this way....I was always to full of spirit and vitality...This really blows.

I hope the rest of you are having a better day than I am.

Kathy

Miza03 · 08-12-2003, 11:23 AM

Kathy
Sorry to hear you are feeling so down.
I have a similar story to tell and I hope it will help you. In 1999 when I had my first round of the dizzies, I saw an ENT who had a very good reputation. He eventually sent me for an ENG. I got sick in September and had the ENG in December. I waited until January 2000 to get the results of the test. At that time he told me that it was not my ear, there was nothing he could do for me and basically just go away. I was devasted. Around the same time, I saw a neurotologist. Based on my symptoms etc, he told me I most likely had an mild inner ear problem and the test was inconclusive because by the time I had the test the compensation process had already begun. He told me some people are very sensitive to even small changes to the vestibular system and I was just likely more sensitive than most. I believed this because I could never ride in the back seat of a car or go on rides in an amusement park. He also told me that if I ever got a middle ear infection that was bad enough, or something that effected my eustachian tubes the problem could come back. Well low and behold I got a really bad cold, my Eustachian tubes got all messed up and I am dizzy again. I always believed it was my inner ear and I still believe that it is my inner ear or the symptoms would not have come back after the middle ear infection as the doctor said.
I am almost in month five. I had terrible clicking in my ears and I was dizzy most of the time. The clicking is getting considerably less and I am getting better.

Long story short. Doctors look for the simple solution and when it's not there they tend to think it is all in the patients head. You need to find a neurotologist who will listen to you and give you piece of mind that this will eventually go away.

Take Care and I hope you feel better really soon.
Mia

dizzyblonde1 · 08-12-2003, 12:30 PM

Hi scant, been away for a few days but just logged on again and found your post.

I'm really sorry you're feeling so low and you've had such negative info from the Doctors you've spoken to. I know that people do often have to learn to live with symptoms which noone can find the cause of, perhaps unfortunately you are one of these - BUT - don't resign yourself to this yet!!!!!.

If, having been seen by the appropriate experts, having had all of the appropriate tests done, no answers are found then maybe this is a possibility. But until that time comes - and that is not until you have been seen by a good neuro-oto who fully understands the implications this monster has on your life - then you should'nt give up hope!!!

Chase those names you have been given and put all your effort into getting seen by a specialist. I'm not saying it is happening in this case - but sometimes doctors do want to wash their hands of you if your problems are beyond their level of knowledge and expertise. You need to carry on fighting until you have explored every option open to you as (as I think I have probably said before) you cannot fight something if you do not know what you are fighting.

Even if your brain has compensated somewhat and this makes the clinical tests unreliable, neuro-oto's should have a fairly good idea of the problem just from your description of your symptoms as they spend day after day with dizzy people. Mine pretty much ruled out the diagnosis given to me by the ENT specialist following examination, just from an e-mail I sent describing how I felt!

Don't give up yet hon, put all your energy into seeing a neuro-oto. Am sending you big hugs - you can still fight this thing xx

dizzyblonde1 · 08-12-2003, 12:42 PM

just wanted to add, there is a "New York Eye and Ear infirmary" which has a website and details about it's practitioners. It does seem to have neuro-oto's there. Neuro-otology is classed as a subspeciality of otolaryngology on this site. Good luck xx

hbep · 08-12-2003, 01:47 PM

Scant,

I could not agree with Miza and Dizzyblonde more. I also went to see an ENT who I was told was the absolute best in my area, the one who other ENT's would turn to if they were stuck with an ear problem. He didn't even send me for tests, Scant, he was so sure I was a mystery. He wasn't a horrible man, Scant, just confused by my symptoms - he was actually quite nice to me, but missed my 2 diagnosies completely. He based his assumption that I did not have VN on my not having vertigo, within 2 minutes of seeing the neuro oto, he told me it was v. usual for non specific dizzies to become vertiginous later on, he wasn't phased at all, he'd seen it all before.

I notice that your ENG results indicated that there's no inner ear problem but pointed to a possible central problem. Well, here's another thing that might cheer you up. I have referred before to my friend with labyrinthitis. He, like me and Dizzyblonde, went to the neuro otology department at Queens Square. He didn't get in to see them until he'd been dizzy for a year and like you had shown excellent and gradual improvement just by keeping active etc... Anyway, they were v. pleased he was improving, took this as a positive sign and sent him for VRT to build on that. Later he asked to be sent his ENG etc results, it turns out that they were completely normal apart from something that indicated a central (not inner ear) problem. He didn't ask about the specifics of his tests when he was in there, and was very surprised by what he read. He still hasn't asked and is still improving. I'm presuming the neuro oto he saw was experienced enough to see an improvement, and to know it could be built on, regardless of what the tests said. I'm guessing by Miza's experience that this isn't uncommon.

I do agree with Dizzyblonde, this specialist, however knowledgeable she may be, could simply be talking out of her range of experience. Even if she's right, and what you have isn't curable, per se, it could be manageable - menieres disease, an inner ear disorder, for example, is totally incurable and yet many people have it and lead happy, healthy lives with the developments that have been made in to how to manage it through drugs etc....

It's so true Scant, you need to know what you're fighting, and it would be so sad to give up that fight until you've made sure you've seen people who really, really feel confident with dizzy disorders. I'm presuming from what you said about the specialist you talked to that she isn't a neuro oto. I understand the fear of dissapointment, but what have you got to lose?

I recently wrote a post to Kippers where I explained that I've been ill once before, from my late teens in to my early twenties - 6 yrs in total. I had chronic fatigue syndrome (M.E) at a time when little was known about it. I managed to crawl my way through university and afterwards basically collapsed. I spent months bed bound, with what I believed to be (and is considered) an incurable condition. I figured either I'd get better or I wouldn't but there was nothing I could do. My mother, (a force to be reckoned with, lol) took the situation in hand, found out about a specialist in CFS in a London hospital and despite my despondency and lack of hope, talked me in to going. By being both open minded and knowledgeable he tried out a new, experimental treatment on me, along with various other things, without which I believe I would still have CFS today. Ok, I know, lol, I am ill today, but I had a good run of a number of years of health and I don't have chronic fatigue syndrome, 8 yrs later I just happened to get another stupid condition but hey.... I clearly have runt of the litter health, and it is true, illness teaches you a lot, about yourself, other people. I can separate a sheep from a goat in the blink of an eye. It's also the reason I've been so utterly dogmatic in seeking out treatment this time, Scant. I truly believe when it comes to illness, knowledge, knowing the force you are reckoning with, and ruthlessly seeking out the right specialists, can make all the difference.

I'm thinking of you Scant, I know how strong you've been through all this, I know you've got it in you to cope with this, and forge ahead until you get answers. Remember that the mind is a powerful tool. That spirit and vitality you've mentioned will also be making all the difference in getting well. Hold on to them.

best,

hbep.

[This message has been edited by hbep (edited 08-13-2003).]