under the drill

[Context: I have a condition called muscular dystonia. This post is mostly for people who know me, and would care. For the rest, I will post my specifics soon. In the meantime, this is a general description.]

Burning Man, Buddhism, and now brain surgery. It’s been a pretty eventful few months. And it’s not over.

October 5th 16th 30th I go under the drill. [10/6 clarification: it’s been postponed twice.] Two holes, two wires, deep into my brain. Thus the name: deep brain stimulation, or DBS. Then a second surgery the 24th 7th of November, to implant and connect pacemaker devices–stimulators that will send a microcurrent into said brain, specifically, my globus pallidii.

It’s a big step, and like the other two, a long time coming:

  • I’ve tried all the drugs, and none of them add more than the side effects subtract;
  • I’m getting older, I’ve been walking funny a long time now, and my right knee and hip are starting to suffer. It’s not bad. Yet. I can see the direction it’s going;
  • I’ve considered brain surgery before–when I was a kid, they would lesion your thalamus with liquid nitrogen. Maybe it helped, maybe not. Maybe you lost the ability to speak. Primitive operations with advanced technology. They still don’t quite know what they’re doing, but they know a whole lot more than they used to. The comparative sense is reassuring, whether that makes sense or not;
  • The risks are low. I’m in good health: when I saw Dr. Bakay, my blood pressure was 100/58. It’s even reversible, and you can turn it off if it messes you up;
  • Dr Verhagen, the movement disorder specialist, and Dr Bakay, the neurosurgeon, seem highly confident they can do me some good. Dr Shannon, my regular MDS, says I’m a good candidate–people with my profile do well with DBS;
  • I have the necessary employment factors: full insurance, and supportive management;
  • I’m a person who has been skydiving, bungee jumping… just got back from Burning Man, excited to go next year… not that none of that scared me, or that I’m unfamiliar with the paralysis of fear, but some of it is my personality;
  • I’ve found a couple helpful online communities–DBSforDystonia@yahoogroups.com is a great bunch, lots of folks who’ve been through the exact same thing I’m doing.
  • I’ve tried for a long time to rationalize my fears–not so much to eliminate them, but to move my sense of fear beyond the instinctive response. It’s an educational process, including object lessons (skydiving) and also meditative practice. I suppose it’s been a somewhat coincidental process, but it’s helped me prepare for this moment.

Overall, the technology has improved (slowly) and my dystonia has worsened (slowly) and I’ve aged (slowly) and the lines are converging at a point where it makes sense to do this.

These are my two biggest concerns:

  • There’s a good chance it will help, and a not so small chance it won’t. I do have some of the best doctors in the world. But no one’s batting a thousand.
  • There is maintenance for this system. It requires new batteries every couple years. Yes, minor surgery, they open you up, pop out old batteries, and pop in new, all outpatient. Given my general pessimism about the state of the world, I can imagine a lot of scenarios where that replacement could be hard to obtain. That whole hell in a handbasket thing could make this more difficult. But this could help too. It’s certainly lower maintenance than botox.

I have other concerns, but they’re all pretty minor. The surgery is, well, riskier than skydiving, but safer than getting hit by a car, and I’ve done both more than once. The total statistical risk of death is one percent, and most of that is for patients older and sicker than I. And there are increased risks around infection. And electromagnetic fields–no MRI around my stimulators. I wonder what EMP would do.

It doesn’t sound like fun, but at least it’s interesting: you stay awake while they implant the wires, so they can ask questions while they poke around.

It’s actually an interesting procedure:

  • You arrive at about 5 am. They mount a frame on your skull, under local anesthetic, which they will screw to the table during surgery. This keeps you from moving, and gives the doctors a frame of reference while they’re poking around in there;
  • They MRI you, with the frame on. That way the frame’s position is in the data with the rest of your brain data;
  • They evaluate where they should put the wires;
  • They dump the MRI data to a program that plots a range of safe paths through your brain. They mostly want to avoid sticking an artery. Which is good, because I wasn’t planning on a stroke at this point;
  • They bolt you to the operating table, give you more local anesthetic, drill a hole in your head (bzzzzzzz! Yes, while you’re awake) and start poking around on one side. They’ll start with the right side of my brain, since the left side of my body is most afflicted–that whole opposite side brain control thing;
  • First they go in with a test electrode, zapping around (in a very specific area) to see if they get a good response in relevant parts of the body;
  • When they figure out a responsive spot, they put in the permanent electrodes, mount them to your skull (don’t want those buggers to move), and close you up;
  • If all went well, they repeat on the other side;
  • You spend the night in the ICU, and in the morning you go home.

Then, the following Wednesday, they implant the stimulators. They put them under your collarbone, and they run wires under your skin up your neck behind your ears, to the top of your head, where they connect with the wires in your brain. It’s supposed to be the more physically traumatic procedure.

That, of course, is just the beginning. After you’re a little better, they start programming the stimulators. Which takes six months to two years of experimentation. And lots of ups and downs–a setting helps, then some of the improvement goes away, then they make a new adjustment. It sounds like a long ‘three steps forward, two steps back’ process.

But it also sounds really promising. I’m kind of excited.

Updates will be posted here as events progress.

28 comments

  1. I don’t know you from Adam, but I just read your compelling post (having found it by way of CCM and its listserv). I wish you good luck and Godspeed. That’s an amazing thing you’re doing, and your courage and forthrightness are an inspiration.

    Terry

  2. Dear John—You have been making all of the important decisions about your Dystonia since the day your mother and I discovered that you had it. You have been right every time and I believe you are right this time. The amazing bravery with which you have met all of the challenges of your affliction will not leave you at this late date. I wish I could say that you got it from ME!

  3. The last time I saw you John, my brothers and I took you out for some hops and some agave. That night was a lot of fun for us all and I know we all paid for it the next day. Now that I know and have your blog site as a favorite I can now be kept up to date on your progress. I must confess I never knew exactly what condition you had and without your knowledge and information sharing of Dystonia I probably still wouldn’t. I never knew you as John Stoner with Dystonia. I know you as John Stoner son of Lloyd and Betty, brother to Molly. You have an amazing spirit about you. This newest challenge maybe daunting but knowing John Stoner, you’ve bungee jumped are you crazy, you will know doubt give it all you’ve got. Keep us updated on your recovery and may your spirit be as strong and as enduring as you.
    Peace,
    James

  4. Wow. I sounds like you have considered all the angles here and are making an careful, informed decision.

    It also sounds like the right choice. Reading about the procedure –even in your humorous, matter of fact prose– frightens me a bit. But your excitement is contagious.

    I wish you the best and await updates.

    Your friend,

    T.C.

  5. John, Your California cousins, Adam, June and Jennie as well as Jan and I, have admired your inner peace and your extreme courage throughout your life and we’re praying for your complete success in this phase of your recovery. (Catholic and LDS prayers…sorry, they’re all we know πŸ˜‰ Lots of love to you and we look forward to a visit when you’re up & about. A trip to Disneyland will be on me, for the Hollywood nightlife scene we’ll leave you to Adam and June!

  6. John, I’m behind you all the way on this. It seems as if you are the type of person who takes chances in life when there is clear and evident possibility for positive outcomes — even in the face of risk. I say, follow your heart, and know that we’re right behind you.

    -KM

  7. Good luck with the procedure john, brother Tom and i were kicking around the idea of coming up to Chicago soon, would love to check you out when your up to it. I’d love to hear about Burning man as well, and skydiving, you just flat out rock old friend. I echo my brother jim’s sentiments as well, lots of great energy heading from our house to yours…We’ll keep up..

    paul

  8. John,

    I had actually read your blog entry on Monday and have spent a lot of the time since trying to absorb then news. I admire you for how cool and brave you’re being in the face of what has to characterized as major surgery. Needless to say, I’ll be doing that thing I do to shape the outcome of events that matter (some people call it prayer) in your behalf.

    -KH

  9. John — Attitudes of good surgeons & fighter pilots rate A-10’s in confidence, focus, preparation. Along comes the same personality-type in the patient —– winning team. God be with you. AirBob
    P.S. Did you climb the serpentine tractor sculpture at Burning Man? Wow! What a happening.

  10. John – I just received a link to your blog from your Dad. You are (and always have been) absolutely amazing! I know that you will succeed in beating yet another challenging event in your life. Stay strong and always keep the faith! I will eagerly be awaiting word that all is well.
    Cousin Lisa

  11. John – Aside from all the reason for you being a good candidate, there is also your ridiculous aptitude for all things techie. If you’re convinced/hopeful, we’re convinced/hopeful/thrilled for you. I hope you’ll have a posting in the “what we as your friends can do to support you” category before the end of the month.

  12. John-I work with you mom here at Columboa College, so I do not personally know you but I feel as though I do. I admire you for your courage and strength. I will pray for you for a fast recovery. I am excited for you because this might help to weaken the dystonia. I wish you a fast recovery. God speed! Erica P

  13. John, I am your cousin on your dad’s side of the family and we haven’t seen each other in over 35 years. It seems like you have made an educated decision to do something to improve your life and I hope and pray for continued courage and strength for the future. I am wishing for only the best. I will be keeping you and the rest of your family in my prayers.Continue to take care of yourself.

  14. Stoney – Big, scary, and exciting news. Very strange since I just watched a news story about this procedure, and thought of you the moment I saw it. I’ll be sending the good vibes your way, but hope to see you before you go in.

    -Sean

  15. Dear John Cloud Gate Stoner,

    Here’s a warm greeting from New Port Richey, Florida, from another Stoner Cousin: Joe’s daughter, Barbara, & hubby Mike.

    As usual, someone younger, (in this case our mutual spark plug, our Cousin Lisa) taught me something valuable. Strange as it is to admit, up until she encouraged me to read your site, I’d never read a blog. Even stranger to admit is that I had zero inclination to investigate the concept. Am I old ?? HA! Just sounded like talk radio to me … but I’m glad to be here now!!

    You’re a real pioneer, John Cloud Gate, on the same level as the first person who came to the edge of the Grand Canyon and peered down to the bottom, and whispered, “Holy Shit!” You climbed aboard the covered wagon & went right down the scary trail. Goin’ for the Gold!! I see that the journey’s been pretty wild. And it keeps right on, doesn’t it? We’re proud of you, John.

    Life is so full – if you’re really trying to live it and not just watch on the sidelines as it passes by. You’ve filled yours with incredible stuff. We’ve never considered skydiving or Burning Man, but we sure did enjoy riding our big Honda Gold Wing, and then our Harley UltraGlide, for 20 years. I dearly miss being a motorcycle mama. These days, Mike & I are focusing hard on Playing Together in new ways, trying to roll with it Baby. Literally – last June we bought a pair of segways. They’re the X2 model, the ATV version. We call them our “ponies.” It was after we decided to give up the motorcycle (we couldn’t afford to turn it into a trike conversion), and we figured a segway would make a dandy outdoor wheelchair, & we could both enjoy them – for the time being, he’s way more comfortable standing than sitting. He’s dealing with spinal stenosis (his spinal cord is pinched in five places, causing loads of pain and roaming numbness and arms and legs that don’t cooperate), plus degenerative disk disease that persists in spite of several major surgeries (his X-rays show all his hardware – he looks like Herman Munster with all the titanium), arthritis on the spine, and scoliosis (his spine is twisting and listing to one side like a sinking ship) … so at age 54, he’s on Disability and “X-rated” drugs. We look at every day that he’s still mobile as an Adventure Day (after doing the dishes & the laundry, HA!), and my big goal is to keep our chins “up.” So he strapped his cane to the joy stick of the segway, plastered his handicapped emblem on the front, and we roll two miles down the road to Starkey Wilderness Area. It’s a huge, gorgeous place, trails and picnic pavilions, a river in the woods, armadillos and sand hill cranes and ibis to admire. We take our traveling Scrabble game and picnic treats and go play: Together, and Today – the two biggies.

    So, Mike’s stuff to deal with is mechanical – yours is electro-mechanical. If the experts get the electro- stuff right, your mechanical has an excellent chance of carrying you on down the road for the 2nd half of your life, and more. You’re smart to do it, and I have a strong feeling that it’s a new door opening up for you. You’d better watch for a big dose of Stoner Spirit flying to you via special karma, from Mike and me. (He is a Vasiljevich, but he’s gained a lot of good Stoner-isms by osmosis !!) Congratulations on your important decision, Best of Luck to you.

    Stay Strong,
    Barb & Mike Vasiljeivch

  16. A warm greeting from New Port Richey, Florida, from Joe’s daughter Barb & hubby Mike! We’re proud of you John Cloud Gate! Tough decisions are usually life-changing, and you’re about to open a new door. You’re right about today’s science – miracles happen every day, and it does seem that the time must be right. You’ve done your homework, and it definitely sounds exciting.

    Be looking for a major dose of Stoner Spirit, coming to you via special karma from Florida …

    We’ll keep you in our prayers.

    Best of Luck,
    Barb & Mike

  17. Wow, John! I am amazed at how you have managed your life. I am in awe of your courage (maybe foolhardiness in some cases – bungee jumping!) and so pleased that you are so successful in your life. It’s been a long time since we saw you but we have thought of you often and wondered how you were faring. Seems we had nothing to worry about. Your blog is fascinating – it’s taken me to places I never even knew existed. It is now marked in my “favorites” and we’ll be checking in often to follow your progress. I know your folks are so proud of the person you have become and they deserve much of the credit. Thanks to your mom for letting me know about your blog. Good luck with your surgery. Add us to the list of people who care!

    Jeanne

  18. You go for it John!—— As we go through life the biggest and hardest problems we face is to make a decision to quit a job, to retire from a job, or get the much needed medical care we need to sustain a better life! I know you have labored to make this decison—— I say, RIGHT OR WRONG, you have taken that rignt GOD has give us all! THE RIGHT TO MAKE A DECISION!
    My personal thought is you have made a decision that will allow you to travel your road of life for years to come. May GOD be with you as in the past,and just think, GOD is with you as you walk down this narrow path!

  19. John thank you for the brave example you have set for all of us. Your humor, boyancy and courage in the face of this challange have truly been an inspiration. Even as a little boy you showed us the way. Cousins Matt, Kristi and Kelly send thier love and best wishes.
    After you’re wired and fired let’s head to Costa Rica for a few days and bond with the howler monkeys!

  20. Hi John,

    You have awesome energy. I miss you and I think of you often. I will be thinking of you and praying for you! I look forward to reading your updates… You are an inspiration.

  21. You don’t know me but I’m related to you. Your father is my uncle. That makes us cousins.

    I want to wish you luck. You strike me as a brave man. I respect that. I hope it goes well for you.

    I was in the Marines for a long time and then went in to banking. That was a long time ago – 1974. I rarely get back there, but I did see your dad a few years ago. Maybe we’ll hook up some time.

    Take care of yourself.

    David

  22. Dear John,
    I am your friend Shirlee’s mom. We have met a couple of times when I was visiting in Chicago. I am sure that Shirlee told you that I, too, went through brain surgery 9 years ago to remove a benign tumor, the size of a small lemon, that was pressing on an area and had caused me to have a seizure. Yes…you are correct about the left side right side thing…my tumor was on left and affected my right side. They did a 6 hour surgery…took out a piece of my skull to get to the tumor and then reattached the skull with some plastic tabs and surprisingly I went home within a few days. Btw…amazingly…I was in very little pain after this surgery. Certainly, our procedures are very different, our conditions are not the same…and yet I can’t help but feel a kinship to you at this time. I know Shirlee will be there for you…and you can e-mail me any questions of how I felt etc. if you want. You always have had a remarkable spirit and it will help to get you through this ordeal. My prayers will be with you…Janet Berman

  23. Hi John, You may not remember me, but I did meet you through my daughter Shirlee Berman. I was impressed with your many abilities. I hope your upcoming procedure results in what you desire. Based upon the risks you describe, I think you are wise try DBS.
    I will be thinking about you and hoping for the best.

    Good Luck, Abe Berman

  24. John,
    Welcome back from the brink! I am excited to see the pics of you and your Dad. You will conquer I have no doubt. Keep the faith.

    Lisa

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