Surgery x 3

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I had the endo Sac decompression done in 2013 and it helped with the vertigo, a little with balance and only lost 3% of my hearing prior to the surgery. Starting in April I noticed I was started to have more and more vertigo.  Calling into work frequently.  I had my yearly check up in July and received a decametasone injection in my ear that worked about a month for the vertigo.  My hearing test showed no change.  Then I was having a major Menieres flare and had another hearing test done which showed in less than a month I lost an additional 10% hearing loss.  Was sent back to the specialist I wanted the nerve cut, I don’t care if I have no hearing in that ear only to be told no because I’m showing signs it is going in my other ear.  I had the 2nd Sac decompression and had a csf leak.  Which was closed and dried, discharged home after a day.  I had severe pain, nausea, vomiting.  I was told to go to the nearest ER.  They were treating me for meningitis cause my spinal tap showed WBC in it.  I was in the hospital for 5 days.  Started having gel oooze from my incision and was transferred back to the hospital that performed the surgery. I had to have s craniotomy, they cleaned the infection out.  I was told the CSF leak was still closed and dried.  I was in for 5 days again. Since being home, I’ve had a lot of pain but what is killing me is the spasms in my ear.  I can’t stand it.  Headaches are horrible.  I can’t think, can’t get my words out right, no appetite, no balance and I’m having vertigo again.  Anyone else go through this.  I just want to get back to work and life but I feel it may be a loss. 

0 likes, 14 replies

14 Replies

  • Posted

    Dear Willow,

    I'm so very sorry to hear your story.  What terrible experiences you've been through.  Since you're having headaches and can't get your words out right, I think you should find a way to get back to the emergency room.  It doesn't sound like you should be thinking about getting back to work at this point.  Are you in the U.S.?

    Take good care,

    J-

     

    • Posted

      I am in the US. I’m seeing my Dr tomorrow.  Hopefully get some answers. 
    • Posted

      So happy to hear that you'll be seeing someone soon.  Let us know how it goes!

      Take good care,

      J-

  • Posted

    Hi Willow,

    I’m sorry to hear about your MM experience. I’m sure after what you’ve been through, it would seem hopeless. Hang in there though and keep us posted. We all suffer in various degrees, but at least I know I’m not alone. Cheers and God bless.

  • Posted

    I seen my family docwho believes I am still having a leak.   He wanted to order an MRI but the specialist wants to wait.  I did have blood work done and my results showed that my WBC have increased by 4 points over the normal high.  Seeing the surgeon tomorrow hopefully to get more answers.   Thanks for the prayers. 
    • Posted

      Are you feeling better than you were before? Reading your story made me really feel for you - it must be horrible. Let us know how it goes with the surgeon. Will say a prayer for you x
    • Posted

      I feel better than I did but not much.  I’m still having the headaches, vertigo has reared it’s ugly head again but only when I go from a laying position to sitting and vice versa.  Still having the spasms in my ear and the incision is still leaking.  My family doctor told me I will be out of work for 2 more months which will kill me. I’ve been working since I’ve been 12 and just want to get back to life.  But my balance issue is one of my biggest issues. I can’t walk straight if I tried.  I see the surgeon tomorrow so I’ll find out more than.  I just don’t know what to think anymore. Very disappointing and scared for my future. 
    • Posted

      Really gutted to hear you’re not much better Willow. I understand completely, I’m 21 and this has come out of nowhere for me and im scared for my future too. I’ve just been referred to the UK’s top doctor for this so really hoping for answers. Don’t stop until you’re completely better, I’ve found that doctors can be way too dismissive if you let them. Glad you’re going to be looked at tomorrow, it’ll be okay in the end, it has to be!
    • Posted

      Dear Willow,

      I want to wish you well.  I know you must be worried.  And elevated WBC typically means there's an infection brewing somewhere.  I hope your surgeon has some immediate answers for you!  So sorry you're suffering.

      Let us know how you're doing.

      Take good care,

      J-

    • Posted

      Thank you!  It has been a rough road and I think I have a long road ahead of me.   My family doctor didn’t want me back on antibiotics due to the risk of C-diff. But my local ENT wants to take no chances.  I’m really at a loss!  Just want it over. 
    • Posted

      Thank you!   I was hoping for the same outcome from my first surgery, but that didn’t happen. Just going to take one day at a time. 
    • Posted

      Dear Willow,

      It's very upsetting when 2 doctors give opposite advice!  Makes you want to tell one to call the other and come up with an agreed upon treatment plan!  I hope you feel much better soon.  

      Take good care,

      J-

    • Posted

      I’m sorry to hear that Willow. Will keep you in my prayers hoping your condition will improve soon. Happy Holidays.

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