All of the ENT's say I'm over thinking things

Posted , 5 users are following.

As some of you may know, I have been spaced out for about 9 yrs. I always feel this way. I still go on with my life but the quality of life is not as good as it use to be. I had all of the ENT test done and the report came back unilateral weakness to the right of 10% which they call insignificant. fixation supression was present. bilateral weakness was absent. directional preponderance to the left of 20% which they call insignificant. the clinical impression is positonal nystagmus and the results suggest an abnormal vng.

So I asked the ENT do I have BPPV and one said yes and the other asked if I get vertigo, which I don't and then told me no. He said if you have an abnormal VNG then we do vestibular therapy which I did for 6 months and did not help. He then said well that's all we can do.

Is there an ENT here or somebody that can give me a straight answer?

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  • Posted

    i found almost all ents know nothing about vestibular issues. they just dont have the training. they are little more than a gp. you need to see a neurotologist. neurotologist specialises in this field. even a neurologist doesnt fully understand vestibular issues.

    • Posted

      I agree, ENT's don't seem to know much. I have been to a Neurotolgist and Neurologisy and had all of the CT scans and everything comes back normal. I have been to every doctor you can think of to the point where I feel like I am almost one myself. I just don't understand how I can have issues with the test the ENT's gave me and they tell me not to read into them too much.

    • Posted

      i went threw this for 10 years. then i finally found a doc who specializes in these issues.

    • Posted

      What did you have and how did you get fixed. Your doc is not in NY by any chance?

    • Posted

      i have menieres disease and yes i am and my doc is in ny. lol. syracuse, ny. i see a dr. charles woods at university otolyngology.

    • Posted

      Glad you got a diagnoses. I am in lower NY so a bit far for me. I thought Menieres for me but I because I always feel spaced out they said no. Plus I don't get vertigo, just a bit of a drunk feeling for me all the time.

    • Posted

      rocksolid- since you have struggled for 9 years, you should consider the travel to waffalobill doctor. i was helped by otolyngology. i am better now. but i had to find the right doctor. you need testing that dizzy clinics do to rule out things. i know NY is big, but why not think about calling. it could change your life for the better. no ENT or Nuerologist, PCP, could help me or diagnose me properly.

      good luck

    • Posted

      doc is in syracuse. i actually live in lower ny to. binghamton. hes the closest to our area who specializes in it.

    • Posted

      i am close to the bottom of the state. i can be in PA in under a hour. the trip to syracuse is about a hour. would be shorter but i live in the country and have to drive to town to get on the highway. it sucks but going to docs who cant help is worse. i made dozens and dozens of trips to docs who did nothing for me cause they don't have the training. over the course of 10 years i could have bought a couple new cars with the money i wasted on docs who did absolutely nothing for me. i remember one trip to the hospital. they did blood work, cat scan. i sat in a bed in the er for 4 hours. just to occupy that space cost $5000. just to be told nothings wrong, go home.

    • Posted

      I will think about it. it would take like 6 hrs to drive up there. been to so many docs who have not helped

    • Posted

      you must be way down the east side. might be closer to hit nyc or even Conn.

    • Posted

      i here you waffalobill. before i was diagnosed properly, i had been to so many doctors. had been admitted to the hospital. no real answers. i knew i was days away from being hospitilized. thats why i say, if you found a good one, that is gold and she should consider it. i travel different state to see mine. its about hour and half with traffic. but, its only every few months now. so many of these idiot doctors today cant or wont help. you get the MRI-catscan, blood work, youre fine must be crystals. or must be viral infection. had i not seen my doctor, i dont think i would be working. i would have had to give up my job of 27 years. she should consider having a friend drive her or like you said look at NYC- otolaryngology dept. dizzy clinic. i read in 2 medical articles recently, that VM- is the second cause of vertigo. so if its so high up there, WTF!?! excuse me but why do doctors have no clue about it. needless suffering. they were actually talking about cutting my nerve before my proper diagnosis because i had VN - diagnosis. can you imagine? cutting it, gone forever when i dont have it.

    • Posted

      rocksolid- i bet it, we all do. we all have had to fight and see countless doctors until that magic one says i am100% sure this is what you have and we can treat it. how can it hurt you to try another doctor, one that has helped waffalobill. what if this doctor can help you. i know this is miserable and hard. but there is help. i found i had to guide my treatment, until i got to the final doctor who saved me. have a friend drive you. think about it.

    • Posted

      I can do the drive, it's just so far. My wife is ready to kill me ( not really ) but she has put up with a lot. I always said maybe this doctor can help and they don't and I know what my wife is thinking. I will reach out to the doctor that waffalobill say and see if they can suggest somebody down here. I am on Long Island.

    • Posted

      hospital stay was bout $20,000 one time. no answers. ER visits had to total $40,000 or so. 6 cat scans,mri, dozen ekg, countless bloodwork. could have bought a house. got no answers.

    • Posted

      i had the same experiences in the hospitals. MRI, catscans, bloodwork, and 2 wrong diagnosis. crap is what is was. but since then, it will be a year tomorrow, i am better, i have finally been properly diagnosed, i am living my life, working but still avoiding certain things that i have to. every time my medication gets increased a symptom disappears. so ive made great progress. i even just traveled with my family last wek out of the country for april vacation. i was terrified of the flight. i got my doctor to clear me. i have had a little trouble since returning. but i went right back into work upon return.

    • Posted

      rocksolid, i know you feel that no doctor can help you. i felt the same. the entire thing is devastating. especially when its affecting your brain. but there is help. you just have to push to find that one doctor who can help. who can diagnose you properly. if the drive is too far, have you researched "dizzy clinics" near you. or an Ear Nose and throat hospital? that is where my doctor is. they have an entire clinic dedicated to these disorders. look for this near you. usually in a major city. and i know how you feel, your wife. its hard because this thing is not visual. it was difficult for my husband to understand. especially when i had to say i cant do certain things anymore. one minute i seemed ok, the next i was dizxy, confused, and had trouble talking.

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