Surgeries Anyone?

Here’s an attractive offer:  Let’s shave off your hair, immobilize your head in a vise, drill a hole in your skull, insert an electrode into the right side of your brain, and wake you up for some fun in the sun before closing that hole. Then, invite you back to do it all again, left side this time – before implanting two battery-powered neurostimulators into your chest and snaking wires under your skin that enable us to activate those electrodes with electrical currents.

No, it’s not some twisted version of electric shock therapy but Deep Brain Stimulation (DBS) – perhaps not shocking your socks off but, hopefully, improving your neurological movement disorder, which is why you place that bet. Why not embark on a wild ride to slay the never-ending, hair-raising roller coaster commandeering life with dystonia?

Of course, your vanity interjects itself. After all, they’re shaving your head twice, replacing your lush – or not so lush – locks with a barren plain. As for the “awake” part, fancy chatting with your surgeon while he’s navigating an intruder into your brain. Then again, you find yourself trudging your way through your 30th college reunion, holding on to your walker for dear life as a once-familiar campus morphs into a forbidding obstacle course. Watch the impossible become plausible when mastering each step presents a triumph of will. Those looming procedures take on a whole new light, vanity and apprehension fading into luxuries you can ill afford.

All roads lead to Rome. Chin up, three surgeries, here I come!


22 responses to “Surgeries Anyone?

  1. I am so excited to hear that you’re giving surgery a try!!! I had my surgery in September 2015 and am already doing so well! May God bless you on your journey through what may seem extremely nerve racking, but you will soon learn that it is not as bad as it seems. As far as the head shaving thing, I wear hats when I feel like it, but it has also been fun seeing all the changes your look makes as your hair grows back. My hair is already about 5 inches long… just a couple more inches and I can put it in a ponytail again! I have been dreaming about my ponytails for almost 9 months now! Just a little bit of advice – 1) Patience is KEY! Don’t give yourself any kind of expectations. Every case is different and everyone responds differently. 2) Get some physical therapy! I don’t think my approvements would be this great without it. 3) Don’t give up!
    I can’t wait to follow you through your journey! How much longer before your surgeries begin?

    • Jessica,

      Lovely to hear from you. I’m so glad DBS had such a positive impact on your life, that is certainly encouraging. As for the head shaving, you have exactly the right attitude, more power to you! Thank you for your advice and suggestions. I await a surgery date – hopefully at the end of August. Sending you my best. -Pamela-

  2. Edward Gewirtz

    Wishing you all the success in the world!

  3. Victoria Marcoux

    Good luck! I’m not sure what type of Dystonia you have, but I have my old Myocolonus dystonia since I was seven years old and I find it getting worse as I get older. Did you find that as you grew older your dystonia got worse?

    • Victoria, So nice to hear from you. I’ve had generalized DYT1 Dystonia since I was 8. My Dystonia has gotten worse over the past few years coinciding with a decrease in the dose of my meds and hasn’t returned to the prior level even though I’m back on my old dosage, go figure. Certainly, I find myself struggling more with my movements as I age. Sending you my best. -Pamela-

  4. Had DBS IN 2013 gor GD, and in spite of some initial hardware issues (I had the very very rare complication of being allergic to a component – now replaced), have never regretted it and have 90% improvement, and my life back! All best wishes to you too – miracles do still happen.

    • Anke, Thank you for taking the time to comment and sharing your experience with DBS. While I’m more than a bit intimated by the journey I’m about to take, I’m also excited and it’s so encouraging to hear from people who’ve already been through this surgery. I’m thrilled you’ve enjoyed such an improvement in your symptoms. Sending you my best. -Pamela-

  5. Patty Woods Gawlik

    I love hearing your positive optimism as you take on each new challenge. I am fighting ovarian cancer. Inoperable a few months ago but shrinking enough to have surgery in August. I may end up with a bowel resection and who knows what else. My dystonia has all but disappeared but a few tremors at night since the chemo started. Weird side effect. I am happier than ever before and cherishing each day knowing I am not the only one living for today, and hungering for a better tomorrow. Thank you for all your open honesty. You make me proud to be a part of your life and to inspire me into positive motion.

    • Patty, Always lovely to hear from you but I’m so sorry to hear about your cancer. Keep up the positive attitude as you make this journey and know that my thoughts and prayers are with you. All we can do is live for today and appreciate all we have in our lives. It has been such a pleasure to get to know you and I wish you the very best. Hugs, Pam

  6. Hi Pam, After a 2 year drug trial, I had DBS on the right in 2007 for GD. After no improvement in gait, had the left side done in 2008. Took a vacation from settings adjustments to have a baby in 2010. Had readjustment on both sides at the same time in 2012, but still haven’t found the settings to help my gait. As discouraging as that sounds, I would do it all again! Otherwise, I’d always wonder if it would’ve helped. I will never give up! Best wishes for you in your DBS adventure! If you need someone to talk to, I’m here for you. Becky

    • Becky, Thank you for taking the time to comment. It’s so helpful to connect with people who’ve gone through DBS and I agree you should never give up! Good luck with your settings. Sending you my best. -Pamela-

  7. More power to you, an already powerful woman! I’ve followed your blog for a couple of years, didn’t realize that you didn’t have or weren’t a candidate for DBS. My wife, Sandra, and I met you briefly at this year’s Advocacy Day — we are from northern New Jersey. Our son Jack, now 21, had his DBS in 2007 and it has/continues to be the profound change we hoped for. Best of luck with yours!

    • Bob, Lovely to hear from you. I’m so glad DBS benefitted your son and that he continues to do well, Deep Brain Stimulation is a life-changer for many. Thank you for your encouragement, which means the world to me. Sending my best to you and your family. -Pamela-

  8. Good for you for being brave enough to go ahead with this surgery, Pam. I can certainly see why it gives you pause — I didn’t know being awake for brain surgery was a thing! I hope the procedure is a spectacular success.

  9. YAY….you won’t regret it! Just talked to an Irish DD who had it – he LOVES it!
    Knock ’em dead, sweet lady!

    • Lisa, Aren’t you a fabulous cheering squad! Sometimes, you just have to take the plunge. Much love to you and your hubby. xxx -Pam-

      • Ya know…it’s a little bit like watching you’re hubby watch you as you birth your baby – a little bit detached, but mainly anticipating the wonders of what that person will experience! Yup – it’s not a cure, but it is such a fine tool, that for DD especially, it’ll be a marvel…I’m so rootin’ for you, my sweet and adorable friend!!

  10. Sending lots of love your way. Just saw your post on the SHS forum (I was a classmate of your brother Jonathan). You have an amazing spirit and sharing your journey is so brave.

    • Diane, So lovely to hear from you. We certainly go way back. Thank you for your kind words. I visited your wonderful website. Best of luck to you on all your endeavors. -Pam-

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