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2 years suffering and trying to stay positive. ..

Posted , 4 users are following.

pattichrist
pattichrist

As I've told you all I've been suffering with dabilitating vertigo (dizziness 24/7) for just over 2 years. I've been gone to several ENT's and 2 Vertigo "specialists " in my area. I've had every CT SCAN (thank goodness nothing ominous was found) taken e very pill they divested for dizziness, nausea and the they even put me on anxiety /depression meds (those I really didn't understand? ) with absolutely no relief. I finally got into the VISTIBULAR CLINIC at the university of michigan where they ran their own series of tests. I went back yesterday and got the following info. I'm hoping it helps SOMEONE ELSE WHO MIGHT BE GOING THRU THIS.

It seems the nerve in my left ear is 100% blocked. They have NEVER had a patient like this before. The condition usually follows some type of head or neck trauma. I've had neither. In addition to my brain being unable to communicate to the left side of my body the "crystals" were all too familiar with are also 100% inactive. The Dr did do an additional CT yesterday on my ears to see if there are any bone fragments in there which could be my culprit. I do not have those results as of this post.

The one thing I really didn't want to hear is unfortunately what the Dr told me. I am to start VISTIBULAR therapy at the university hospital (a one and a half hour drive that I need to have someone take me to as I'm not driving right now) first apt next Wednesday. The Dr six this could take up to 6 to 8 months ( maybe less maybe more) to get any type of relief OR IT MAY NEVER GO AWAY.

I just am trying to stay positive. I run one of the locations of our family's music studio's but haven't been able to put a full day in (pretty much not working) months. My husband and I run a worship band a at our church. I'm lucky if I can get up and get ready to go to church let alone try to perform without falling over. My husband and I also have a classic rock band that hasn't scheduled a gig due to far the lead singer might fall off the stage. I have a 15 year old who is a competitive dancer who I can't get back and forth to her plethora of classes every week. I'm not sure how I'll do when the competing season is here and we travel for her weekend functions. And of course any social life or activity that requires standing and moving is always iffy. I tried to go grocery shopping and ended up in bed for a day with the worst migraine I've had in over 27 years.

So that's my story this far. I hope this is of some help to someone out there who's looking for a reason for their vertigo.

Thanks for listening and commenting.

Patti

1 like, 7 replies

7 Replies

  • Sochima822
    Sochima822 pattichrist

    Posted

    Well, sorry but this good news that they were able to find the culprit. I hope you get relief once you start therapy. Hope it all works out, best of luck.
  • catherine64077
    catherine64077 pattichrist

    Posted

    Hi, I had a dizzy spell in 2014, getting out of bed, the room just went spinning.  A friend gave me these pills that she took when she had an attack, they made me so sleepy, but it went away after a couple of days.  After the ER exam, he named out stress, and I know that had to be the cause, even my friend said that had to have been her cause.  I have been having neck pains for months, due to my stress living with my OCD daughter and her twins, then a week ago I got out of bed and the room started to spin, I quickly lied back down and focused on something.  Went to the pharmacy and they gave me these pills that didn't make me drowsy for about a week.  I live in Costa Rica, so I can just go to any pharmacy, tell them my symptoms, and they issue pills for however days.  Anyway, my neck pain has gone away, but I stopped taking theses pills every eight hours, down to Twice a day.  I still get out of bed gingerly not to feel dizzy, but I know it could happen.  Yes I still have this stress which I am trying not to let it take over me for.  

  • Terry6872737
    Terry6872737 pattichrist

    Posted

    I know that this news has been bittersweet.  I am sorry that it is so serious of a deficit in your vestibular system.  Is there an indication that the VRT can help to alleviate the vertigo?  I know that in some cases they actually inject gentamicin into the middle ear to kill the vestibular nerve to relieve severe cases of vertigo.  It would seem that if there is already no signal coming from the ear that the brain would not be confused creating the vertigo.  Are migraines not playing a part in it as well for you?  I know that I have read a lot about the symptoms related to vestibular migraines, that is what the anti-depressant was for, more than likely.

    I sincerely hope that there is something that can be done to help alleviate the symptoms for you. 

    • pattichrist
      pattichrist Terry6872737

      Posted

      I had another CT done that is now showing "Dehiscence of my left superior semicircular canal".......  Not really sure what this all means but am headed back for therapy on Wednesday.

      ?I'm also expecting a call from my Dr on Monday to discuss how to proceed with this new news.

      Thanks for the reply!

      Patti

  • pattichrist
    pattichrist

    Posted

    Since writting the above post I received the results of the CT done on my ears.

    ?The left ear shows "Dehiscence of the left superior semicircular canal".  Now the Dr is going to call me tomorrow to see how we continue with this new information....

    i just pray there is an operation that will fix it!  LOL

    Patti

    • Terry6872737
      Terry6872737 pattichrist

      Posted

      There is a surgical procedure to repair the dehiscence.   What is called the middle cranial fossa approach has been used most commonly. Plugging of the canal with fascia (fibrous tissue), using small bone chips to secure the fascia in place, has been shown to be more effective than canal resurfacing in achieving long-term control of symptoms. The main risk of this procedure is hearing loss in the affected ear, although this risk is low in patients who have not undergone prior SSCD surgery or prior stapedectomy.

      I have read that the procedure is very effective in relieving both the vestibular symptoms and auto-phony associated with SSCD. Plugging of the superior canal typically results in decreased function in this canal alone, while preserving function in the other semicircular canals. The reduction of function in the superior canal has minimal negative functional consequences.

      Hoping that this is new hope in resolving your issues!

  • catherine64077
    catherine64077 pattichrist

    Posted

    I too think it's my ear,  I have never fallen like my daughter.  She slipped in the bathtub and must have hit her head on soap dish.  She had a really bad case for a month, only because we didn't know about these meds we are taking...she is fine now.  As for me I don't have headaches, I feel fine during the day, I just sit around, not to get on this lap top too much, don't want a stiff neck.  At night, if I do a wrong turn while getting up out of bed, I will have a spinning episode, which I close my eyes and open focusing on something, then I get up gingerly.  I lay with my head propped up on my back.  When I return to Dallas, I will seek a doctor to look into my ears.  I am 72, and I am too active to be sitting around.

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