DBS a week later

Friday I underwent the second procedure of the stimulator being wired up to the portals into my cranium. This was a 45 minute same day event. It is actually a little more painful post event due to the tunneling of the wires from the subclavicular site of the stimulator up to the top of my head. All in all I don't think its too bad having only taken 1/2 doses of Tylenol 3 and a couple of 1/2 hydrocodones a day in the last week.

The best part is the lack of painful foot dystonia that was worse at night requiring me to crawl on my hands and knees to the bathroom every 2 hours with urinary urgency/retention... significant quality of life issue. This is a 90% improvement and that figure includes the daytime for the dystonia. I am still not as steady in standing and walking but far from falling or losing my balance. My voice is stronger but my tongue is thick and sloppy... kinda sound drunk sometimes.

All this is without the device being turned on yet; that will be initiated in 2 weeks. It is possible that the electrode placement alone has affected my subperforming substantia nigra... or it's all placebo effect. If so I"M DELIGHTED.

I do think that the placebo and nocebo effects are real everytime we are conscious. I doubt that there is any effect when we are unconscious, but you never know.

30 Replies

  • I am considering having DBS. Can you tell me where you had it done?

  • San Diego, CA

  • I had it at Oregon health science university in Portland.

  • I had DBS focused on the STN's the first week of December and had 2 probes, a 2-probe capable stimulator, and wires run down to my stimulator under the skin. Then had it turned on a week later. No pain meds required. I had a neurosurgeon that has done several hundred of these, and I'm glad that I had it all done at once, a 4.5 hour procedure. Any comments or questions?

  • What are your results?

  • WHERE?

  • What sort of anaesthetic did you have?

  • Mine where General. The first time was 115 minutes & the second was 45.

  • Did they offer you the option of a local? I've got a thing about general anaesthetics. Prefer to avoid them if possible.

  • Many docs do the first phase of electrode placement under local only. I don't know about the second phase.

  • Many thanks etterus

  • wow, what can I say? I had DBS 1st part Nov 10, 2nd part Dec 5 and the turn on date not until dec 23. Everything has gotten much worse. The pain in my chest is terrible where the incision is. I am having so much trouble walking now and I cry all the time. Am I the only person in the world who is suffering from this procedure? I don't understand why there is so much variation in the way the surgery is done by the different surgeons. I am at a major hospital and the surgeon very experienced, but so far it has not been a good experience. I am happy that others have such a good outcome from the surgery but I am so jealous.

  • I'm so sorry that this surgery didn't go well for you, that must have been very hard after making the hard decision to get it done, and then having the procedure. Have you gone back to the doctor? What did they say? Surely they should be able to try some adjustment? I hope you manage to get some benefit from it and get some help with the pain.

  • thank you for your kindness.

  • Etterus.........interested in the comment you made about placebo and nocebo in the last sentence of your post. Would like to discuss [cwmhib@gmail.com].

  • The classic placebo effect is a harmless substance cures a disease because you believe in it. You may also develop side effects even though the pill is harmless.

    The nocebo effect is similar in that you develop negative side effects from a harmless substance with no improvement.m

  • Congratulations. Sounds to me like the surgery went well. I too had DBS in Jan 2011 and it was worth every second of discomfort that I felt. I am looking at battery replacement soon and because my surgery went so well the first time, I am considering returning to Kansas to have it done. We now reside in NC.

    I grew up in the rice fields of Arkansas where we rode our bikes behind the trucks spraying mosquito insecticide. Who would have thought "the fog" was going to cause future problems. Also my grandfather was a farmer and the crop dusters would leave a cooling mist on your skin if you were lucky enough to be outside when they would fly over. Oh, wouldn't it be nice if we could have "do overs" in life.

  • I grew up in southern IL with the foggers also.... poison!

  • LauraL, could you please tell me who was your dr. in Kansas? i am from kansas.Thank you

  • No rice fields for me, but scout camp and city of Milwaukee spraying mosquito poison and ddt in WI...same story with cooling off and riding bikes in the fog...amazing, huh?

  • Laura's, I live in North Carolina too. There are two excellent Movement Disorders Clinics in this state: Duke medical center in Durham and another at Wake Forest Baptist Health in Winston-Salem. I had DBS surgery in October and November, 2014 at wake Forest. The team of Doctors there is excellent. Can't say enough good about them!

  • Nazih Moujarrij was my surgeon. Ty Schwartzfeger was my neurologist. I literally owe my life to both of them.

  • Very Happy for you!!! Please continue posting updates. Attitude is fantastic

  • I live in Idaho and right next to a field that was crop dusted regularly. The spray always came right over our house, yard etc, We both have pd. I for about 11 yrs. My husband for about 2 yrs. I was the only one home full time. We're in our mid 70's.

  • I had the surgery in 7/2014 at OHSU and for the first week I had very little tremor. They said it was a "honeymoon period", so I enjoyed it while it lasted. Just last week I had my 4th "tune-up", electricity adjusted. I have NO TREMORS, am still taking Comtan & Sinimet every 3 hours. My off times are now muscle tightening, no sign of tremors. Have had some balance issues, slow and uncoordinated, but all improving. I've heard it mentioned that it can take up to a year to get the programming right. What was frightening to me was when the Dr. turned off the DBS....the tremors have gotten way worse in the five months since surgery! I've developed a limp and pain in my left leg (PD side) that was not present before, cant's figure that out but I think the extra electricity is to blame. Doing the PD shuffle some, that also was not present prior to the surgery. It's hard to sort out the electricity, meds and progression of symptoms. It's a balancing act every day but so much better due to the surgery.

  • Hi Jebbers, why does the Dr turn off the DBS? Can you have it turned back on? Also what kind of haircut do they give you for DBS surgery?

    Thank you, llwwd

  • R, I had the same "placebo" effect question and very similar results on the between procedures/pre neural transmitter installation. Lets chat when you feel up to it...

    Continued best wishes to you!!!


  • I ad DBS surgery in mid October, 2014 with module implant three weeks later in December. Done at Wake Forest Baptist in Winston Salem , NC. Excellent surgery by Dr. Stephen Fatter and programming by Dr Haq. I am in the Vercise Intrepid Clinical trial, so had to wait 3 very long months until it was optimized for me. It was tough surgery -I was awake throughout. And waiting while they did Clinical trial was most difficult. However two weeks after my optimization, I am rediscovering what "normal" is and it is absolutely wonderful! My balance is still a bit wacky, and I tire easily but this thing is like a miracle!. A few more tweaks, and I should be good to go. PD meds are now only half of what I took previously, and sometimes I forget to take them.

  • So glad for you. I'm to see the do. For my 2nd tuning this week.

  • Etterus, where do you go?. Are you on the Intrepid trial too?

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