My So Called Dizzy Life

My Chronicles of Vertigo, Nystagmus, Imbalance & Dizziness

Perfection is Overrated Anyway (I wish I believed that)

on September 20, 2012

Waiting for the Doc to Give Me a Magical Cure

I saw a new specialist last week.  Like the previous ENT I was seeing, this doctor is also in the Head and Neck Surgery department.  He specializes in medical and surgical problems of the ear and side of the skull base and is sub-boarded in neurotology.  Whatever all of that means.  I was at the point where I’d truly accepted that I will never know why I got Vestibular Neuritis (which doesn’t mean that I don’t still wonder); I just wanted a doctor that could help me.  While a part of me knew that there wasn’t really going to be anything magical he could do to suddenly fix me, I still was hoping…

Well, there was no good news.  The doctor told me that I will never be perfect.  His words, not mine.  This will affect me for the rest of my life.   I want to feel normal again.  I want to live my life without dizziness and unsteadiness.   I don’t want to be defective.  It’s hard not to be discouraged by that.

The doctor suspects that I have a combination of an uncompensated vestibular neuropathy and migraine associated dizziness (MAD!)   No matter how many vestibular rehabilitation therapy (VRT) exercises I’ve done; no matter how much I’ve encouraged my brain to compensate, it just hasn’t fully done the job.  For some reason it just takes some people’s brains a longer time to compensate for the damage that the Vestibular Neuritis has caused.

Doctor’s Instructions: I am to continue my VRT and I have also started working with the Wii Fit to help with balance.  He encouraged me to continue to stay active.  The doctor is also starting me on a medication to help with migraines.  I haven’t felt like I’ve been having migraines – just a constant headache since this all started – but I don’t really have many options so I am going to give the drug a go.

The doctor also said that “we could consider transtympanic gentamicin to ablate the rest of the right inner ear balance function.”  (He showed me a picture of the inner ear and pointed to the area that is dead and said that he thinks there is a nerve area that is still active, which is why I’m uncompensated.)  This procedure is also called  “intratympanic gentamicin treatment” or “chemical labyrinthectomy.”  Sound fun yet?  The doctor would use an antibiotic called gentamicin and inject it into my middle ear through my eardrum.   The goal is to damage my ear further (but also decrease any vertigo and dizziness)  This is known as a destructive treatment.  Very reassuring.  Even more reassuring was when the doctor told me that there was a 20% chance that it would leave me with hearing loss. (They say 20% because it sounds better than the hard truth – a 1 in 5 chance).  Oh, and it could also leave me with a hole in my ear drum, but he said that surgery could fix that (yay).

I have made no decision regarding what I will do.  I’m not a decisive person.  I have trouble chosing what clothes to wear in the mornings.   Or which flowers to buy.  Silly, insignificant decisions are hard for me.  This decision is out of my league, yet rests on my shoulders.  Do I go for the possibility of lessening my symptoms, but possibly losing my hearing?   Should I just give my VRT more time?  There is also the possibility that this procedure won’t even help, due to factors like incorrect diagnosis or ineffectiveness of the drug.   But it could still damage my hearing.  I’m not trying to be negative; rather I need to be honest with myself about the true risks involved.  It’s a long way to fall from wishing that there could be a magical cure out there to dealing with the reality of losing my hearing.

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3 responses to “Perfection is Overrated Anyway (I wish I believed that)

  1. Marissa says:

    SO glad I found your blog! Do the docs feel 100 percent confident of what ear has been damaged from the Vestibular Neuritis?

    I can relate to the decision. One ENT doctor along the way wanted me to have an Posterior semicircular canal occlusion. He said there was a likelihood that I would loose hearing. I was so torn because I didn’t feel 100 percent confidence radiating from the doctor.

    Wishing you all the best with your decision! Hang in and know you are NOT ALONE!

    Much love,
    Marissa

    • Emily says:

      Hi Marissa! I’m glad that you found my blog as well. We “dizzies” have to stick together! 🙂

      The doctors are 100% confident that my right ear is the one that has been affected; when I went in for VNG, VEMP, & ECochG testing, the VNG testing showed the damage without a doubt. You can read about it here: https://mysocalleddizzylife.wordpress.com/2012/07/09/my-vng-vemp-ecochg-testing/

      I’ve sent the specialist a list of questions, which I’m hoping will help me make a decision. I wish the doctors had more medical knowledge in this area. Sometimes I get the feeling that people will look back on these treatments in 20 years and just find them just as archaic & insane as lobotomies or bloodletting. Whoops, I let a little negativity in there. 😉

      Were you also affected by Vestibular Neuritis or do you have something else? What treatments did you end up pursuing?

      • Marissa says:

        Thanks for the link! I have undergone most of these tests.

        The VNG also showed nystagmus in my case. The testing found I had loss in my left ear, but not enough to be producing the chronic disequilibrium and vertigo.

        I have been diagnosed with BPPV, Fistula, canalithiasis, cupulolithiasis, and now nero-vestibular dysfunction. It’s all over the place:)

        I agree that we will look back at these treatments as being archaic. Look at the testing we have currently endured:). I acknowledge that vestibular testing and treatment has evolved over the last 20 years, but there are just so many unanswered questions and patients left with no solutions or answers.

        I am currently undergoing VRT ( 2nd round). I am noticing increased stamina. I still feel the same, but I can now endure a bit more. http://abledis.com/who-cares-about-improvement-when-you-still-feel-like-s

        Much love,
        Marissa

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