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  • HELP with grommets and dizziness. PLUS Superior Canal Dehiscence diagnosis.

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    Old 04-24-2014, 11:59 AM   #1
    BLouise
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    HELP with grommets and dizziness. PLUS Superior Canal Dehiscence diagnosis.

    Hi
    Im a 23 year old who has just qualified as a nurse, but unable to work due to this ongoing illness...will try & keep this short but it is all pretty complicated !
    I've been unwell for almost a year, suffering from dizziness and unbalance. I was originally diagnosed with vestibular neuritis, as my caloric test showed I had 79% vestibular damage. The treatment for this didn't work.....I then went for a 2nd opinion (best decision I ever made...), I also have eustachian tube dysfunction (shown by reduced hearing and negative pressure) but also a CT scan and VEMP test has shown I have superior canal dehiscence....(which has been a bit of a shock !) but anyway, i obviously have lots of ear problems happening, and the surgeon decided it would be worth trying grommets to see if they helped reduce my ear pressure problems. The treatment for the canal dehiscence is a BIG op which i want to avoid at all costs....

    Had the grommets done last week..and the dizziness/ balance issues are so much worse! i also have bad ear ache in my right ear. i feel this especially after yawning, belching and sneezing...does anyone else who had grommets suffer from any of these problems? and if so, did the they improve? I know i was dizzy before the grommets, but i would quite like to get back to my 'normal' level of dizziness, as this is now pretty much unbearable. Any stories/ advice would be so much appreciated!

    Also, i'd be interested to hear from any of you suffering superior canal dehiscence. Have you had surgery? and was it a success? i can hardly find any support sites for this condition.
    Thankyou

    PS - Can anyone tell me how i post this in the Ear, nose and throat board?! I can't work it out...

    Last edited by BLouise; 04-24-2014 at 12:43 PM. Reason: want this post post to be in the ear, nose & throat board NOT general health ??

     
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    Old 06-30-2014, 09:38 AM   #2
    Monterey
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    Re: HELP with grommets and dizziness. PLUS Superior Canal Dehiscence diagnosis.

    My third ENT doctor put the holes in without the grommets and they did not work. the pressure was less but it was temporary only. dizziness persisted. he did not know what the issue was. My fourth ENT doctor finally diagnosed me with SCD last year. it took 4 doctors in four years to find out what was wrong with me. He did not recommend surgery as it was a major procedure...especially as I have it in both ears and not just one. I have to be careful on what I do as the dizziness can be extreme but until they can perfect an easier process, I will hold out as long as I can.

     
    Old 06-30-2014, 11:59 AM   #3
    BLouise
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    Re: HELP with grommets and dizziness. PLUS Superior Canal Dehiscence diagnosis.

    Thank-you so much for your reply. Your story sounds SO similar to mine, although luckily i only had to wait 9 months before they worked out it was SCD. I have just posted a new thread with an update on what's happening with me. The dizziness after grommets did settle down but i am still constantly dizzy and unable to work. I have a specialist balance appointment to discuss surgery this wednesday … i guess i feel like I have no option but to have it done as I can't live my life at the moment! Which method of operation did they discuss with you? The craniotomy one? sounds so invasive but it sounds like there is a less invasive one where they go through the mastoid bone…but i have no idea if this is more successful or not. fingers crossed something easier comes up!

     
    Old 06-30-2014, 03:06 PM   #4
    Monterey
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    Re: HELP with grommets and dizziness. PLUS Superior Canal Dehiscence diagnosis.

    They indicated it would be the craniotomy option as the most effective. I am holding out for something new. It sounded much too intensive of a procedure as they had to make the whole behind the ear and then move my brain aside to patch the hole. I have not heard of anyone having the surgery lately. I keep my eye on the healthboard hoping something will come up.

     
    Old 06-30-2014, 03:16 PM   #5
    BLouise
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    Re: HELP with grommets and dizziness. PLUS Superior Canal Dehiscence diagnosis.

    That sounds incredibly intensive. Can I ask where your from? As from what I've read they seem to do the craniotomy option more often in the US. I will have to let you know what options they have for me on Wednesday. I have so many questions to ask! I will also a be looking out for as much advice as possible. As there doesn't seem to be a huge amount out there, glad I found someone else with a similar experience though. And I hope we can help each other somehow!

     
    Old 07-06-2014, 01:50 PM   #6
    BLouise
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    Re: HELP with grommets and dizziness. PLUS Superior Canal Dehiscence diagnosis.

    Hi again, I just wondered have you heard of Round Window Reinforcement surgery? My surgeon says this is a very low risk op which may reduce symptoms. i have been offered this surgery or the trans-mastoid plugging.

     
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    dizzy lightheaded nausea fatigue tired, ear, ear ache, grommets, superior semicircular canal dehiscence vertigo



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