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01-15-2017, 11:49 PM | #41 | |||
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Junior Member
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Blog Update
Scottsuf.blogspot.com |
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"Thanks for this!" says: | eds195 (01-16-2017), soccertese (01-16-2017) |
01-17-2017, 05:48 AM | #42 | ||
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Junior Member
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Scott - I saw your blog for the 1st time yesterday. Apparently I
repeatedly hosed my URL entry attempts. I think I may have a suggestion or two when they get everything straightened out for 'round 2.' I can't remember exactly what they set the initial voltage to from the factory. For purposes of discussion, let's say it's 1.5. In my case, the value is currently at 3.2. Scott, if you can convince them to let you leave the hospital with an adequate 'ceiling' meaning that you can 'bump' up the settings yourself, instead of waiting for your next 'adjustment,' as I was forced to do, you can save yourself much grief. For example, based on their advice, and personal trial and error, if I had been able to do so, I would have increased the setting by 2.0 each day, until sensing significant relief. I think you are already aware that any such sensation is short-lived, or at least it was for me. It usually 'healed' in 2 weeks or so, leaving me quite miserable for the next 2 weeks, until my next appt. David |
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01-17-2017, 10:16 AM | #43 | ||
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Magnate
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15 Ways To Reduce Your Risk Of Hospital Infection
much easier said than done when if you ask questions or make demands to people who are highly trained but mistakes are made and surgeons/nurses have bad days sometimes. boy, if you have a friend who is a surgical nurse ask her for some advice. i was lucky that a person i was sitting next to in the neurology clinic happened to have worked as a surgical nurse for the neurosurgeon who was assigned my DBS operation and she raved about him. it's your life and pocketbook.. best of luck. |
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"Thanks for this!" says: | ScottSuff (01-17-2017) |
01-17-2017, 03:16 PM | #44 | |||
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Junior Member
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Quote:
I had been through the turn/initial programming before infection was found,and they were going to let me have some range in the settings to adjust. Appreciate it |
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01-17-2017, 03:19 PM | #45 | |||
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Junior Member
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Quote:
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"Thanks for this!" says: | soccertese (01-17-2017) |
01-18-2017, 10:14 AM | #46 | ||
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Junior Member
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Dear Scott - thanks for your experience with DBS. As the daughter of a PD patient who is cautiously considering the procedure, learning about your experiences has been very helpful. Very sorry to learn of your setback and sending you best wishes for a quick resolution.
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Looking for different options for my mom, born 1946 and dX with PD in 2010. |
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01-20-2017, 07:22 AM | #47 | ||
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Junior Member
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Guys & gals - I am concerned - I don't have any idea how long
or far this will go on..... Right now the electronic box in my chest is set at 3.3, I think There has been a 'cycle' of sorts that results in substantial relief, temporarily, each time the doc raises the voltage setting by .1 or .2. My concern is how long will this go on before I run out of 'room' (I understand that the overall limitation on the Medtronic unit is 10.5). I mean, at this rate, I'm going through a .4 - .5 increment each month, or 2-3 weeks, just to get relief of the minimal sort. Thanks - David |
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01-20-2017, 08:07 AM | #48 | ||
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Member
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Quote:
Attended a Medtronics meeting, and went over my settings, frequency, pulse width, impedance. Current settings I'm good for five years of battery life. DBS Battery Estimator >> Center for Movement Disorders and Neurorestoration >> College of Medicine >> University of Florida In 2010 is when the Activia Line came out. Titanium Case, so EMI is not an issue like earlier generations. So I can use arc welding and TIG welding. Ya! Group meeting, so had chance to talk with someone else, retired M.D. who has Parkinsons and was also dealing with Gastroparesis Thankfully when he was first hospitalized a Neurologist realized it was due to Parkinsons, and he responded to Sinemet, saving him from a J tube surgery. Scott -- sending you wishes for all the best.
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Born 1958. Diagnosed PD 2014. Meds Sept 2016: 5x daily: 2 - Sinemet 25/100 + 200mg Comtan; 50/200 ER Sinement (bedtime). Oct 2016 - DBS - bilateral GPi (PD & Dystonia). Still a work in progress. (Reduced meds to 4 - 25/100 & 50/200 ER Bedtime daily; but need six months to see how DBS/Meds play out) |
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"Thanks for this!" says: | soccertese (01-21-2017) |
01-20-2017, 03:25 PM | #49 | ||
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Junior Member
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Scott - Thanks for the info. All this stuff is so confusing I probably
didn't do a very good job of asking the right question. I think the current box has a ceiling of 10.5. I'm currently set to 3.3. Not really concerned about battery life. What I am concerned about, and if someone could tell me why I shouldn't be, that would help a lot! Is - With an adjustment appt. approx. once a month, and with the typical increase of .2 for each appt., it appears that I would be 'bumping up' against 10.5 very quickly. Surely they're assuming that most people wouldn't need an increase close to the above for every month of the year?? |
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01-20-2017, 05:00 PM | #50 | ||
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Member
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Quote:
Perhaps get neurologist to give you a range you can use and that isn't too great that you can get into too much trouble with? I think D.I.Y. is a much gentler and far more convenient way to go. I might go up but only by 0.1V at a time then give that setting a few days to notice any changes as thats how long it often takes. Then you might want to try 0.1V up or even find you were better off on the setting you had it on and go back to what it was. I doubt the settings will go up a great deal more as too high can mess with you mentally as well as cause you to physically feel worse. I agree with you about battery life the main thing is that you benefit from it. Good luck |
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"Thanks for this!" says: | soccertese (01-21-2017) |
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