Promises, Promises!

12864551_sI don’t buy printer ink without carefully investigating my options. You can only imagine how I approach a decision like bilateral brain surgery. Not a grain of sand is left unturned in my lab of microscopic dissection. Popping a new pill is one matter. A potential starring role in a two act surgical drama involving a drill, a brilliant neurosurgeon and two electrodes about to take a slip into my brain for an ongoing adventure of electrical proportion is quite another story!

In a process that even the medical community doesn’t fully understand, the electrodes – suspended in the brain – send out a “help is on the way” signal that somehow overrides or interrupts the mixed-up messages confusing the muscles. Equally mysterious, speech generally receives no benefit, a giant “X” on my list of pros and cons. Each electrode attaches, via surgically implanted wires, to a battery-powered stimulator lurking in the chest and controlling the pulses emitted. Completing this pretty picture is a handy remote that turns you on and off, changes the channel and controls the volume like you’re a TV set. Obtaining programming nirvana can take months, even a year.

The upside to all this nerve-racking hoopla – in a nutshell, Deep Brain Stimulation – is the “am I dreaming” possibility of gliding into my fifth decade after forty years of laborious gait…but no promises. Only requires a ticket to a live show (yes, I’m awake) where I receive a feature role. They even throw in a cutting edge haircut dispensing with the need for shampoo. Would certainly beat a surprise party for impact but this Dystonia damsel hasn’t reached her surgical breaking point. Perhaps if my walking pursues a downward slope from reducing my dalliance with Mr. Art, I’ll undergo a change of heart.

Post Script: DBS is a story with more flip sides than a stack of flapjacks. This procedure can change lives, uplifting individuals from wheelchairs to stilettos, merciless spasms to merciful serenity, plodding gait to measured marathons. Check out my friend, Pat Brogan’s blog, Battery Powered Person, for a glimpse into the transformative potential of DBS.

27 responses to “Promises, Promises!

  1. Beautifully written, and echoes both my dreams and concerns.

    • Hello, DBS is a major procedure that introduces foreign objects into our bodies. To me, holding concerns is entirely natural and also important as we evaluate treatment options. One thing I’ve learned over the years, there are no easy choices in Dystonia and we stand as our own best advocates. It would be wonderful if the results were guaranteed but that’s not DBS and that’s not life. I hope you are finding your way along your own journey. -Pamela-

  2. Hi Pam
    DBS seems like big step. I have some stainless steel implants in the muscles in my neck that help very well with pain and control. The brain could be a dangerous place mess with.

    • Hi Donald, Always nice to hear from you. DBS is a big step, you certainly have that right. As I wrote, I never take my decisions lightly, least of all brain surgery! For now I’m sitting this one out and we’ll see what the future brings. Sometimes, it’s all about accepting what life brings us and focusing on the positives. Wishing you the best. -Pam-

  3. Good luck, a good friend with Parkinson’s disease had a similar treatment and ten years later he still thanks his surgeon for giving him his life back. his life isn’t what is was pre Parkinson’s but it is a vast improvement. I truly hope you are as fortunate. Good luck again

    • Hi Murray, Thanks for visiting. Can’t say I’m looking for my “life back” since Dystonia’s pretty much all I’ve ever known. You know, as nice as it would be to walk a straight line, if this is the rest of my life, then so be it. I enjoy a more than fulfilling existence and perhaps most importantly, I’ve more than accepted myself. We all have to look at the bright side of the horizon. I’m not just preaching – teaching – I’m truly living this blog! As for DBS, right now I’m standing pat, who knows what advances they’ll make and what the future will bring. -Pamela-

  4. I have been to a couple of lectures about it with Prof

    peter Silbourn and have decided if I get worse I will do it. Today I had my first botox in my neck. fingers crossed.

    • Hi Margo, Nice to hear from you again. I’ll keep my fingers crossed your botox works. Listen, for some people, DBS is a “no brainer” type of decision, not for me. For now, I’ll keep trucking along…and blogging…the way I am! Please keep in touch, I’d love to know how the botox goes for you. -Pamela-

  5. Lisa Librarian

    You are a wonderfully talented writer. I love reading your blog. Xo!

    • Lisa Dearest, As I love reading yours! All we can do is write from our hearts and share our souls. You are a blessing in my life and I’m thankful to have found you along my journey. Our friendship is about so much more than Dystonia. We share a zest for living and a determination to overcome any obstacles that may stand in our way. Keep up the great work! -Pam-

  6. Your musings are so true. Before they put a stick in my brain
    i’ll defiantly be at the end of my rope. Unfortunately
    the rope is getting shorter and shorter..

    • Hi Mike, Always a pleasure to hear from you. Yes, DBS is a major decision. I’ve actually considered it twice, saw a surgeon once. Certainly would be nice to eliminate the side effects from my meds. I hear they’ll be coming out with a modified electrode, you never know about new advances. This is such an individual decision and the whole procedure is a bit overwhelming including that stick in the brain! I can’t even begin to speak to your situation but please keep tugging that rope. And remember, you are more than your Dystonia. I think you’re a great guy. Have a wonderful weekend and take care. -Pam-

  7. A woman after my own heart…. I too always thoroughly research ANYTHING before I purchase it!! Interestingly, I had a chat with a friend who asked whether if there was some sort of surgery they could do to cure the debilitating symptoms would I?

    I wasn’t really able to give an answer – there is nothing that the medical community can do to treat the symptoms and I have resigned myself to that fact. But if there was something I know that I would have to give it a lot of thought before I committed to anything – a lot of research; learning about the complications and so on.

    There have been a couple of documentaries on over here about brain surgery even featuring deep-brain stimulation – it’s marvellous what they can do!! I hope someday p, whenever that will be it may be a possible option for you, making your condition a little easier to deal with on a day-to-day basis.

    Thanks for your post – it made me smile when I needed it; when things have been tough

    • Hello Dear Friend, When my neuro first raised DBS, it seemed my miracle, but then “I” kicked in and the lengthy deliberative process I bring to every decision. As you well know, there are few easy ones when it comes to treatment. I just couldn’t pull the trigger on DBS, I guess, thankfully, I’m just not in need of that miracle that lets me bite the bullet, so to speak. Brain surgery is a serious choice. Perhaps it’s in my future, who knows, but for now, I’m sticking with my humor, my writing and my meds! Thrilled my post offered a needed smile, always my aim. Love ya. -Pam-

  8. Good idea. I think there is good hope for the dystonia world . We just have to live our lives the best way we can. DBS is huge step. I will wait.

    • Donald, It seems we’ve reached the same conclusion regarding DBS. I also agree with you 100% about living our lives the best we can. Sometimes, it’s necessary to shift the focus from fixing what’s wrong to appreciating all that’s right and finding joy in the little things. Take care. -Pam-

  9. Hello, I Do enjoy reading your post, to the point I had to write. I have ET for 16 years now. I also had DBS 2 years ago,I have to say this, it changed my life, I have control again,Thank God! I’m a hairdresser, and ET had taken control over my life.. DBS is not by anyway easy to have done or is it an instant fix, To be blunt it was pure hell, but so was my life with ET, to the point I had no control over my hands, head,neck and both legs. I was to the point of almost being put in a wheelchair. I have 2 teenagers and a husband, and was not ready to just give up my life to ET…When I was first thinking about DBS,I told myself my body will tell me when I’m ready for DBS because ET will not control me , good luck and God bless you with any decision you have to make.. 🙂

    • Suzan, Firstly, thank you for taking the time to visit my site. Although this blog addresses Dystonia, it really could be any movement disorder (and extends to life with any point of difference) so I consider you part of the family. I’m thrilled to hear DBS helped your ET and gave you your life back. As you well know, this surgery is such an individual decision and you are absolutely right, the ultimate conclusion is driven by our bodies. Mine is just not speaking loudly enough for me to move forward. I wish you the best with everything. -Pamela-

  10. Lol truly poetic way of putting it! Loved this! Sharing it ASAP

    • Diana, Lovely to hear from you. Even though it may not be the right decision for me, DBS is a significant treatment for certain Dystonia patients and I wanted to put it out there in understandable terms. Thank you for offering to share my information, that means the world to me as I build awareness of my little known neurological condition. Kudos to you for your own website: It Was Lupus. I urge everyone reading this comment to use the link I’ve provided to take a visit to your world. Best to you. -Pamela-

  11. Call me chicken, but electrodes & wires in my brain is sort of Frankensteinish, j/k
    I’m ecstatic that some folks, have had the op.
    And are living better lives.

    • JG, I think of DBS as “Bionic.” Certainly, it’s a major procedure not to be undertaken lightly. While it may not be the choice for either of us, I know it’s changed many lives and for that I’m eternally grateful. Always a pleasure to see you here. -Pamela-

  12. I just wanted to say that DBSWas a life saver for me, even though I only have cervical dystonia and I only have been suffering with it for six years before my operation, I was ready to do the big 86. The day after I was activated, my movements were 90 percent better. I have now been battery operated for 1 1/2 years and my movements are for the most part, gone. The operation for me was not all that bad. Both were tolerated very well. To get off the meds, well lets say I can think normally again. My spelling and punctuation have always been poor. DBS… Think about it… It worked for me.

    • Hello Ryk, Great to hear from you and I couldn’t be happier that DBS worked out so well for you. Since I go back way before the days of DBS, I know what this procedure has meant for many people, a real life-changer. As for me, I’m not great with big decisions but I’m most definitely an information processor so I’ll keep churning away! Thanks for visiting. -Pamela-

  13. Let’s not shoot down DBS for dystonia- I had it in 2004 and still am going strong, although it has been a journey of sorts…
    But, it is doable for those who choose it. What matters most is the skill of expertise of who does the procedure. Immense patience is needed to find the right settings for your dystonia . At least, for me, it saved my nursing career. However it is not for everyone and is only a bandaid in minimizing symptoms just like neurotoxin therapy.
    Watch for “my take on DBS ” in the American Nurse Today Journal April 2013 issue. Awareness Hit !!

    • Beka, Lovely to see you commenting. Shooting down DBS for Dystonia couldn’t be further from my mind. Indeed, I included a link to Pat Brogan’s blog to offer an example of how DBS can change lives for the better. I’m thrilled it worked for you, as it has for many other individuals. As you know, everyone travels their own road when it comes to treatment and I’m just sharing mine. Who knows what the future will bring. -Pamela-

  14. Pingback: My Starring Role During Neurosurgery: The Woman In The Iron Mask! | Chronicles Of A Dystonia Muse

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