Sunday, February 10, 2013

T+740: Two Years and Counting

It's hard to believe that two years have come and gone since my SLAD/R surgery with Dr. Berke in California.  I think back to when it was only two weeks since the surgery, and wished I could just press the fast forward button.  A friend told me that before I knew it, it would be two months, and then two years.  It turns out that she was right!

My voice is strong, spasm-free and mostly doesn't squeek.  I mostly don't struggle in loud environments anymore.  Occasionally, someone will have trouble hearing me in a loud room, but then I realize that I can't hear them either.  So it's not a case of a weak voice, but rather a normal voice in a place that's too loud.

I stopped taking the Prilosec a long time ago, and I haven't needed it.

There's not much more to say.  For all intents and purposes, my voice is normal, and Spasmodic Dysphonia is happily becoming a distant memory.

Here's how I sound today:



Thanks again to Dr. Berke and his outstanding team at UCLA for pioneering and carrying out this incredible operation.

13 comments:

  1. Glad you have had such overwhelming success Erik, it's very encouraging. Your voice sounds great!

    -Rob

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  2. Erik,

    On March 26, 2013 I had SLAD-R surgery performed by Dr. Gerald Berke at UCLA Ronald Reagan Medical Center. After 18 years of dealing with SD, I knew there had to be a better way than receiving Botox injections every six months or so.

    After a particularly difficult injection back in December, 2012 I spoke to my otolaryngologist about other options. He stated that he'd met Dr. Berke at a medical conference, and he highly recommended him. That, coupled with your experience you shared on your blog, gave me the courage to travel to Los Angeles earlier this Spring for the procedure.

    On March 25th, I arrived in Westwood for a consultation with Dr. Berke at his medical office. I'll never forget what he said - "Congratulations, today is the last day you will ever have to endure spasmodic dysphonia. Tomorrow, you get a new voice."

    It's been six weeks post-op for me, and other than a difficult recovery from the anesthetic, I'm on track to a complete recovery. I often have referred back to your blog to see what's in store for my recovery at the moment.

    There have got to be many of us out there who are looking for that last little push to move forward with this surgery. Although I've still got a way to go - my voice is a bit breathy as you can imagine - thank you very much for providing hope in the SLAD-R process, and faith in Dr. Berke. I found him to be a world-class surgeon who has a great deal of compassion for his patients,

    Sincerely,

    Travis Smith
    Fleming Island FL

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  3. Travis,

    Thanks for sharing your story, and best wishes for a speedy recovery. I never think about spasmodic dysphonia anymore, and soon I expect that you won't have to either.

    Best regards,

    Erik

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  4. Hi Erik and Travis,
    I had the surgery on February 25, 2013, with Dr. Chhetri, a colleague of Dr. Berke. I was fortunate in that Dr. Chhetri was able to graft 4 nerves to my vocal cord muscles and voice box rather than the usual 2. He said this gives me a much greater chance that the severed 'malfunctioning' nerves will not regenerate.
    So far, my voice is quite a bit lower than my former voice before I developed ADSD, about 5 years ago. But I am already very happy with the complete absence of spasms, since I woke from the anesthetic. I sound like a mafia thug, and I'm kind of having fun with that. I just celebrated my 70th birthday in June. I could really scare people with this voice!
    I do not notice the changes in my voice as easily as my sons do, because the improvement is in small increments. But I speak with my sons every one to two weeks. I know my volume is better, but it is still pretty soft, just like Brando's "Godfather!" It helps to use Skype-to-Skype, or Skype-to-phone. Better speaker quality on my laptop.
    I am extremely pleased that I went ahead with the surgery, and hope that my volume comes back, even if not completely, in the next 3-4 months. I've read that it sometimes takes about a year.
    Nice to have a community out there!
    - - Pam

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    Replies
    1. Hi Pam,

      Thanks for sharing your story. Hope your recovery is going well.

      All the best,

      Erik

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  5. I too have spasmodic dysphonia and read with interest about your experience. I have written a novel with a main character who has spasmodic dysphonia, because it seems very few people have ever heard of it. To read about her, and my own experiences, you can go to www.noellewall.com.

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    Replies
    1. Hi Noelle,

      It's about time someone wrote a good novel about this! I'll definitely check it out.

      Best regards,

      Erik

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    2. Hey Noelle,

      I went to your website and didn't see anything there about SD; did I miss it or ???

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  6. Erik
    Im talking to dr burkes office now about the surgery and hope to have it done by end of the year - any words of wisdom to help make the experience more tolerable ?
    Mark

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    Replies
    1. Hi Mark -

      The main piece of advice I would give is to have patience and a sense of humor. If your expectation is that your life will be disrupted for a good 6 months and maybe even 12, but that since it's just a journey back to becoming your old self, it's going to be worth it.

      Good luck with it -- happy to chat with you about it if you like....

      Best,

      Erik

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  7. Just wondering to Erik and the others who have had the surgery, how long is it that one expects to be off work? I am a teacher (college with flex schedule), I can use a voice amplifier and have surgery scheduled for May. I understand I will not have a full voice for a while, however, a whisper is pretty much better than what I have now!

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    Replies
    1. Hi Linda - Initially I didn't take any break from work, and I didn't use an amplifier either (although that would have been a great idea). But I don't recommend doing what I did. You should take off as much time as you can, and use the amplifier at other times. The first few months were the hardest, as I was getting a little light headed from all the air I was using to get out my whispers. Hope that helps, and good luck with it...

      Erik

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