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4-Year DBS Follow-up


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486 replies to this topic

#481 New normal

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Posted 29 March 2016 - 11:38 PM

Gosh, this is a great thread.. I had forgotten the exchange...like I was reading for the first time.

Good to hear from you, Kim...I have missed you...
Dx'd 6/13 @ 66 by MDS with sub linquil L dopa challenge. Meds: Carbidopa/l dopa 50/200 5x in 24 hr
4/15, reaction in 6 mos to Amantadine 100 mg 2x per day.
DaT scan '13, normal. MRI '13, normal. DaT scan '13 repeat, normal. DaT scan '14, normal. DaT scan '15, normal.
Symptoms: 90% - 100% controlled: bilateral body tremors, chin tremor, tongue tremor, rt leg drag, balance, slow movement, cognitive/speech, apathy, executive function, autonomic systems. Patient to Neuro, "Next appt, on or off meds?" Neuro to patient, "ON meds...you are too scary when off!" <smile>

DH: dx'd PD 4/15 @ 70 by MDS with l dopa challenge by prescription. DaT scan, '15, normal. Meds: 25/100 mg carbidopa/ L dopa, 3x per 24 hr.

#482 KimAgain

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Posted 03 April 2016 - 02:24 PM

Good to be back!  Except, I'm not--well, not quite gone, but not quite back, either--I'm on vacation! Woo Hoo!  Looking forward to wading into a good natter when I get back though...

 

NN, how have you and the gang been??


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side. Battery has sustained for 7 years and counting; but I anticipate needing a new one this year (2016).   Zero Sinemet CR daily (this took six and a half years to accomplish). 300mg Amantadine daily.  30mg Cymbalta daily.  SPS: Right. I invite communication with anyone who wishes to discuss DBS, PD, or any related topic; my email address is:  wyndsong@charter.net - email me if you'd like my phone number.

 

"Be kind, for everyone you meet is fighting a hard battle." --Plato


#483 Woody

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Posted 05 April 2016 - 06:52 AM

Hi All,

I am a caregiver.   My husband is 53 diagnosed 10 years ago with PD.    He had DBS end of 2012 implanted in the GPI area, not STN, and with normal Activa battery.

 

My question is.     Has anyone anything they can tell us regarding the Activa RC.

His battery is not lasting longer than 2 years, possibly a few reasons, a short circuit at one contact the first year, and higher levels of stimulation the 3rd year, but we are next month going for the 2nd replacement battery and are contemplating whether to have a rechargeable fitted instead.   Aside from the general anaesthesia, the flight times and general fatigue that comes from having these battery changes every 2 years, we felt maybe the RC would be a better and easier thing for him long term.

 

Does anyone have any comments - pros/cons on changing to this rechargeable type versus staying on status quo.  We're particularly interested in the day-to-day use and any difficulties people may have experienced.  More specifically we're wondering about frequency and length of recharging cycles (he runs at about 4.5-5 volts, 180hz and 60 pulse width for his therapy), any "accidents" (i.e., letting the unit discharge too far) and any defects people may have experienced where they had to go back to hospital to replace the battery before the supposed 9 years of service life were over.

 

 

 

Cheers

Woody

 

Thanks Dave appreciate your reply - very interesting .   I have read recently there are also other companies apart from Medtronics who do long life batteries.. up to 25 years rechargeable. its by Boston Scientific has been out there for years used mainly in Europe, South America and Israel.... not allowed in the States because still in trial amazingly...........   that would be interesting wouldn't it....  I suppose with the battery business being so profitable for Medtronics and hospitals, it will be hard for other suppliers to get in....anyway... again - thanks so much.

 

Thank you Kim as well.  Appreciate your time.  I was more after unbiased opinions from people actually using the RC or non RC activa.   Not so interested at the moment in answers from the actual equipment suppliers as they do have vested interest and have already been down that track.... but thank you for your time and all the best.



#484 Daven

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Posted 05 April 2016 - 10:37 AM

Woody,

 

One thing you should ask when looking at different manufactuers is what their replacement policy is.  I know several people who have  Boston Scientific and were charged an arm and a leg for a replacment remote.  I'll give major kudos to Medtronics in this department.  They've replaced my charging belt 3 times, the antenna on my charger (whats used to charge), and my remote 4 times.  I'm hard on my equipment.  Each time they Fedex the replacement part overnight no charge.

 

Dave


Edited by Daven, 05 April 2016 - 10:38 AM.


#485 Appala

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Posted 05 April 2016 - 11:25 AM

Dave, just curious about your post, since I'm in a 5-year study for the Boston Scientific DBS, which isn't available in the U.S. yet but is currently in the study phase here. So no one would have it here yet except people in the study, and the study provides all equipment free. So were these people who needed BS remote replacements from other countries, or their remotes were for other types of pacemakers, not DBS? Any idea how much they were charged? I'm pretty sure my Kaiser policy would cover most or all of replacement cost after study is over in 5 years, but wanted to check on this anyway. Thanks.



#486 Daven

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Posted 05 April 2016 - 12:42 PM

Appala,

 

Bear in mind this was a couple of years ago and it was for an SCS not DBS, but the two people that I met online had to pay for their remote replacement from BS.  It cost them around $800.00.  They were really ticked because their insurance did not cover the costs.  You can probably contact BS to find out what their policy is and I would also check with Kaiser to make sure they would cover.  This is a question I would have never of thought to ask.

 

Dave



#487 KimAgain

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Posted 11 April 2016 - 07:47 AM

One thing I would add is, as much as one trusts one's doctors (I hope!), a second or even third opinion (where possible) is something one should consider viewing as obligatory--and, at any stage in the proceedings.  If seeking other opinions offends your doctor?  That's your first sign that you need another opinion!

 

Kim


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side. Battery has sustained for 7 years and counting; but I anticipate needing a new one this year (2016).   Zero Sinemet CR daily (this took six and a half years to accomplish). 300mg Amantadine daily.  30mg Cymbalta daily.  SPS: Right. I invite communication with anyone who wishes to discuss DBS, PD, or any related topic; my email address is:  wyndsong@charter.net - email me if you'd like my phone number.

 

"Be kind, for everyone you meet is fighting a hard battle." --Plato





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