My Starring Role During Neurosurgery: The Woman In The Iron Mask!

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Hollywood’s leading ladies have nothing on me and my starring role in a “surgical trilogy” featuring a brilliant neurosurgeon, his drill, cutting-edge guidance technology, and two electrodes taking a slip into my brain for an ongoing adventure of electrical proportion. Best supporting actor goes to the strong-armed “villain” in this medi-drama, the metal vise that fiercely immobilized me every step of the way. The hero, my Mount Sinai neurosurgeon, cool as a cucumber, assumed command over his troops in the OR. His team took no prisoners, bolting me to the operating table to set the stage for the drilling…but with my neurosurgeon controlling the scene, this dystonia damsel was hardly “in distress!” As for the “awake” part, our tete a tete during surgery was largely surreal as my “leading man” filled my field of vision during our big dramatic moment and I lacked a bird’s-eye view of the surgical scene. I’ve absolutely no recollection of the drilling.

Having considered – and rejected – DBS oh so long ago, I needed a pinch to jolt me into reality as we traipsed about the hospital – vise securely in place – on our way to a pre-op CT-scan. You’ll find my verdict – since overturned – on this site in the article “Promises, Promises.”

With DBS, the waiting is the hard part. Until that all-important first procedure set a bar on my expectations, my overactive imagination embarked on a joy ride over the prospect of two “awake” brain surgeries in the span of one month. For those Dystonia warriors considering DBS, rest assured that the “idea” of these procedures is far more daunting than their reality – especially that fearsome metal vise. After the numbing injections, it’s smooth sailing ahead. If you can handle life with dystonia, you’ve got DBS!

Once the surgeries are completed, this surgical thriller morphs into a tale of suspense. Stay tuned for my BIG MOVIE ENDING, dramatically revealed in 3 to 6 months…

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My amazing Mount Sinai neurosurgeon is second to none!


28 responses to “My Starring Role During Neurosurgery: The Woman In The Iron Mask!

  1. I admire your courage and pray for the best results possible.

  2. I look forward to hearing your big ending.

  3. Pamela, You’re my inspiration, my hero, my dystonia sister. I wish you peace & comfort with complete success in this next stage. I keep you close to my heart & in my prayers. You Got This!
    Lovingly, Denise

  4. Brilliantly written – not an average blog at all. More a professional peice of writing about a very serious part of your life. Inspiring.

    • Andrew, For most of my life, I had tremendous difficulty sharing my Dystonia with other people. Then one day, words came pouring out of me and I started this site. It has been a tremendous therapeutic relief to share my experiences. Thank you so much for your interest in this site. -Pamela-

  5. Beautiful! I’m so happy for you!!! I’m at about 95% improvement in about 9 months after turning the device on. I hope and pray you have the same results, as it is a miraculous amazingly life changing experience!! Much love going out to you during this difficult wait ahead. You are in my thoughts and prayers and I’m routing for you all the way!

  6. Thank you so much for sharing your journey….pray for the best for you🙏

    • Carin, Thank you for following my journey. I try to write representationally for everyone living with Dystonia. What a crazy world we inhabit! Sending you my best. -Pamela-

  7. Your wit is only surpassed by your courage!

  8. I wish you well and much success, Pamela. You are inspiring, informative, courageous, and awesome! Thank you for all you do in bringing the much needed attention to Dystonia and our plight.. Hug and Prayers.

  9. Love your way of expressing yourself. Go forward & conquer Warrior Princess. God speed.

  10. I thought you had DBS is this another one?

    • Valerie, Thank you for visiting this site and taking the time to comment. My DBS actually involves 3 surgeries. In the first surgery, they inserted an electrode into the left side of my brain, in the second surgery, they inserted an electrode into the right side of my brain. In the third surgery, which is today, they implant the neurostimulators in my chest and connect them to the electrodes in my brain. Sending you my best. -Pamela-

  11. Pam, my dystonia darling, it’s nice to know that some things never change. I have memories of the metal cage from when I was 11; over 50 years ago. And I was awake but the results were instantaneous because they were dripping corrosive chemicals into my brain. It was faster but much less accurate. Dr. Cooper made a mistake and shut off my speech center, Still, he did give me back my legs for 20 or so years.

  12. Brilliantly written peice – bravely worded. I wish you all the best.

    • Andrew, Thank you for taking the time to comment. DBS is certainly a surgery of last resort when the oral medications don’t work. This is quite the process to go through! I am glad your Dystonia seems to be under control. Mine was managed fairly well by meds until I started fiddling with my meds! Oh well. Sending you my best. -Pam-

    • Andrew, I do my best to convey life with Dystonia with humor. -Pam-

  13. I should say Pam I suffer from myoclonic dystonia and at diagnosis was offered DBS. Luckily with medication and botulinum toxin injections and physiotherapy I manage and symptoms are lessened. I think your blog is the most well written I have come across of all dystonia blogs! Good luck with your DBS!

  14. you are my hero so much so when I saw you at reunion I was intimidated, after all you are a celebrity here on line, way to go, next time I go to reunion I’ll say HI and introduce myself! I don’t have dystonia but I like to read your blog I find it inspirational. Liz

    • Liz, I wish you had come up to me at Reunoon. It would have been lovely to say hello in person. Thank you so much for reading my blog as I seek to spread awareness of Dystonia. Sending you my warmest wishes. xxx -Pam-

    • Liz, I wish you had come up to me at Reunion, it would have been so nice to see you. I love returning to campus and never cease to be amazed at how much Providence has changed since our student days. I’m thrilled that you enjoy my blog, which seeks to build awareness and understanding of Dystonia – person by person. Sending you my best. -Pam-

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