DBS - what event changes everything

A friend just had DBS, Until this past spring she had maintained an absolute unwillingness to consider the procedure. Then when the flowers bloomed she did a 180 and her decision was absolute and irrevocable. My friend is a few years ahead of me but not so many. This about-face of hers has me looking inward far more carefully than just a few months ago. I have to admit the whole process horrifies me. The very idea of someone poking wires in my brain, well it just doesn't sit very well.

My luck has been less than I would have liked with surgeries and most have had to be repeated. The consequences of those repetitions we managable, but DBS is a different thing entirely. Is there is a single event or an experience or perhaps just the culmination of all events and experiences, that leads to casting off the fear and plunging ahead? I know I'm not there and I don't know what it will take for me to get there, but I am beginning to expect that I will.

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  • Thank you for such a thoughtful blog about DBS, as you are so right, it is a very personal decision. Q

  • I met a PLWP in his farmhouse, in Wales. He had worked for BT (or the GPO as it was known when my father worked for the GPO). The first thing I asked him was "Have you got a step ladder with GPO branded on it?" He did. The second thing I asked him was "Have you got a 3 part, extendable aluminium ladder?"

    This is true for many GPO ex-employees they worked for an organisation that didn't measure its success in Larger Profits and Smaller Workforce and more intensive work.

    I digress. He asked me if I would like a cup of tea. I replied yes please, not knowing my life was about to be in danger. The kettle boiled, he couldn't walk he threw himself about the room with Boiling water splashing out.

    I got out of the way, sharpish.

    He told me, that he couldn't live like this anymore and was seeing his specialist to arrange DBS.

    Now I come to the sad part.

    The DBS went well but they operated on his back at the same time, this went badly.

    I went to see him in hospital I had to put a stethoscope to his lips to hear what he said.

    He died

  • Hi,

    I may be brave but the rewards you get will be worth the one day of surgery, Do thorough research on your docs, and use the best hospital available. Yes, you may have to travel: Mass General, Johns Hopkins, any of the Boston hospitals, Cleveland Clinic.

    Good luck to you!

  • For what it's worth: I am 5 years post DBS and last year had replacement batterys installed. The original surgery was two parts. First, the holes drilled and wires placed. I went back to work the second day after. Frankly, the implantation of the stimulators into my chest was by far more difficult to recover from (its like having a wallet under my skin). But when it was all done, even considering the difficulties, it is well worth it. I'm 12 years post diagnosis, young onset (dx at age 40) and I still get around and do pretty much what I want. I only need to turn off the unit to get a clear picture of what my condition would be if not for the DBS.

    My advice, ask your doc to put you in touch with a couple of folks in their practice that are similar to you in demographics, etc. who have had DBS and have coffee with them. Its kind of freaky, for sure. But for now it may be the best option for us folks who live with PD.

  • I have had parkinson's disease symptoms for 8 years - diagnosed for 6. I am 41. I too put off the surgery even though every Dr I saw recommended it. I was terrified about having wires in my head. Being a Christian, I even went through the thoughts that this was a way to control me. There was no way i was ever going to have DBS. But after 2 years of saying no, I got tired of the disease. It started getting worse. I could barely walk while "off" but when I was "on" I was normal. When I was "off" I would actually crawl because I couldn't stand to just lay around. I had terrible fluctuations. I didn't know one moment from the next if my medication would work or not. I got to where I was scared to get out of the house for fear of turning "off" and not being able to move. I would lie in the floor and cry for hours because of the cramping in my legs. I had alot of anxiey attacks because I could not move at times.

    So finally I had enough and I had the surgery Dec 14,2011. I will say that it was not an easy surgery. But right after the surgery I had no PD symptoms for 4 days- it was wonderful and I didn't even have the DBS turned on yet. I got it turned on and programmed 2 weeks later. I am due for the next programming in a week.

    I am extremely glad I got the surgery. So far I would say I am 50% better and the Dr's say it takes 6 months to get the programming just right. I have not had to crawl at all since the surgery. I still have to take medication but I can walk even when "off" with the help of a walker. My leg cramps have gotten better but I do have them at times but still not as bad as before.

    You will know when the time is right for you to get the surgery.

  • I read all the commentand got some encouragement. I'm38 & scheduled for DBS this coming April 6th.

  • I've had PD for 9 years, on March 1st I had the first of 4 surgeries to implant a DBS on both sides. Read everything get 2nd opinions it is your decision but there is no time like the present to do it. A friend of mine has essential tremors she had it done last year, I asked if I should wait until I'm older. Her reply was why wait why not do it when you are young (I am 49). Having generator implanted on Monday 3/26 & can't wait. While in the operating room after they got the wires in place they hooked it up to see what my settings were going to be, & I can't wait till monday it is amazing. Yes I was awake, you have to be for brain surgery the DR's, RN's and staff were fantastic at meeting my needs answering any and all questions. they put me in kind of a beach chair told me not to move my arms & introduced me to Lisa who was there to scratch whatever itched or needed attention on my face & neck.I might as well say it here the halo they put on my head was one screw turn from being to small LOL . God is with you my friend!

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