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adams234

What caused your Doc to suggest DBS?

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Hello all,

For all of you with DBS, what was it that caused your doctor to suggest DBS surgery?

I have researched the Pros and Cons  and my doc has not suggested it yet. I am only 3 years down the road on this path but wonder what it was that got your doctor to say DBS is a good option at that point in your life. By no means am I trying to get the surgery before I need it. Just a bit of research for piece of mind.  

Thanks

Adam

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My MDS first suggested it when my meds started losing their effectiveness and dyskinesia became a real problem for me. He brought it up at every follow-up appointment for three years, not really pushing but reminding me of a window of time when DBS would be most beneficial due to age and disease progression. The university medical center just started performing DBS procedures ( I was one of the first to get a DATscan there ), yet he had no problem referring me to a more experienced DBS team. And I'm glad he did, since he was suggesting a bilateral STN. Instead I had a unilateral, GPi that has been successful for just over a year.

 

Edited by Oakman
grammar

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No DBS here yet either.  As I understand it current FDA guidelines for DBS requires 4 years since diagnosis or at least documented significant symptoms.  There are some clinical trials looking at even earlier DBS for YOPD on the theory that DBS might actually slow progression or at least have benefits not available to older patients.  

 

For me, that means I don't expect the discussion to even begin for another 2 years.  I'm a little of 2 minds about what to do if my MDS brings it up right around the 2 year mark.  It'll depend a bit on how progression and medication side effects are impacting things.  I like the idea of getting off, or much reduced on meds sooner than later.  But, the risks and potential side effects of DBS are nothing to trifle with either.  Also, I'm wondering what the cognitive effects of PD are going to be for me, and once dementia sets in you're no longer eligable for DBS, so I wouldn't want to push it out to my late 60's even if I otherwise don't "need" DBS until then.

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I had good luck with my dbs

the thing to remember is its brain surgery

and will take time to recover

 

 

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Adam - got some intel today that should be of interest to you.  I had a meeting with my MDS.  I said my DW would want to know, but that I assumed I was still several years away from discussing DBS.  She said that, never mind the fact I'm not at a stage to seriously consider it anyway, even if I was she'd council to wait a few years if you could.  They are working on developing a battery that doesn't get implanted in the chest or abdomen, but under the scalp.  It would be recharged by wearing a special helmet.  Sounded like it would be a lifetime battery (or WAY longer than 5 year replacement windows anyway).  Biggest bonus to that is that you don't have go under general anesthesia every 5 years for battery replacement, plus dealing with recovery and scar tissue from perhaps as many as 10 replacement surgeries if you live for 50 years after initial DBS surgery.  

 

Something to think about.  

 

I liken the consideration for DBS to being kind of like Scott Adams (creator of Dilbert) explains the issues surrounding doing anything about global warming.  It boils down to economics in his essay, but a big point he makes is about the cost of doing anything.  If you act now it may cost a whole lot more than if you wait for better technology.  By waiting you can see what technology develops that might work better/faster/cheaper than what is currently available.  WRT DBS surgery I think we're in or very close to an inflection point in the development of the technology involved in DBS.  If you can stand to wait another 3-10 years it might be massively beneficial to do so due to rapidly advancing technology solutions to battery issues, control systems development, electrode design and placement, and so on.  After all, part of his essay was also that eventually you get to the point that continuing to wait causes costs to increase again, and if you wait long enough then it's impossible to accomplish anything as it's too far gone.  In the case of DBS, being too far gone means you've risked out of eligibility entirely, perhaps due to dementia, age, or other factors.

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4 hours ago, stump said:

Adam - got some intel today that should be of interest to you.  I had a meeting with my MDS.  I said my DW would want to know, but that I assumed I was still several years away from discussing DBS.  She said that, never mind the fact I'm not at a stage to seriously consider it anyway, even if I was she'd council to wait a few years if you could.  They are working on developing a battery that doesn't get implanted in the chest or abdomen, but under the scalp.  It would be recharged by wearing a special helmet.  Sounded like it would be a lifetime battery (or WAY longer than 5 year replacement windows anyway).  Biggest bonus to that is that you don't have go under general anesthesia every 5 years for battery replacement, plus dealing with recovery and scar tissue from perhaps as many as 10 replacement surgeries if you live for 50 years after initial DBS surgery.  

 

Something to think about.  

 

I liken the consideration for DBS to being kind of like Scott Adams (creator of Dilbert) explains the issues surrounding doing anything about global warming.  It boils down to economics in his essay, but a big point he makes is about the cost of doing anything.  If you act now it may cost a whole lot more than if you wait for better technology.  By waiting you can see what technology develops that might work better/faster/cheaper than what is currently available.  WRT DBS surgery I think we're in or very close to an inflection point in the development of the technology involved in DBS.  If you can stand to wait another 3-10 years it might be massively beneficial to do so due to rapidly advancing technology solutions to battery issues, control systems development, electrode design and placement, and so on.  After all, part of his essay was also that eventually you get to the point that continuing to wait causes costs to increase again, and if you wait long enough then it's impossible to accomplish anything as it's too far gone.  In the case of DBS, being too far gone means you've risked out of eligibility entirely, perhaps due to dementia, age, or other factors.

 

dear Stump,

Just want you to know in my experience, battery was replaced the first time after 6  years and eight months, second time 7 years and 6 months and the current system is scheduled to last a minimum of eight years, maybe nine. According  to a study " There are many factors that may influence battery drain. These factors include neurostimulator manufacturing tolerances, battery usage, battery chemistry, tissue impedance, interpolation error, usage patterns, and self-discharge. "  The 5 year window is an average that may not apply to you, especially if like me you undergo DBS while still young.  IPG replacement was done each time under local anesthesia, not general. I had DBS in 2000,  I was 47 and had been diagnosed 13 years prior.

Regards,

Mireille

Edited by MIMILASTER
word missing

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Stump,

Thanks for the Intell. I am hoping that if and when the day comes for me to do a surgery that new and more capable technology is around. I am guessing and hoping that it will be another 5 to 10 years before I will need it.

Lately I have been getting some terrible dystonia in the evening before bed time. Most likely will need to adjust my pill scheduling and dosage. I will be seeing my MDS in December. It just got me thinking, what was it that others were experiencing when they and their doctors decided on DBS.

 

Mireille,

Thank you for your words as well. I hope and believe that I will have many good years. Your stories I read on here give me more hope that I will be just fine. I hope to get back to France sometime soon. J'aime la France.

Bonne journée

 

 

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Oakman,

Thank you for your reply. I hope all is well and it sounds like it has been a real help.

Blessing

Adam

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6 hours ago, MIMILASTER said:

 

dear Stump,

Just want you to know in my experience, battery was replaced the first time after 6  years and eight months, second time 7 years and 6 months and the current system is scheduled to last a minimum of eight years, maybe nine. According  to a study " There are many factors that may influence battery drain. These factors include neurostimulator manufacturing tolerances, battery usage, battery chemistry, tissue impedance, interpolation error, usage patterns, and self-discharge. "  The 5 year window is an average that may not apply to you, especially if like me you undergo DBS while still young.  IPG replacement was done each time under local anesthesia, not general. I had DBS in 2000,  I was 47 and had been diagnosed 13 years prior.

Regards,

Mireille

That is great that you're getting 7 years or so as an average life for the battery pack.  And that it may extend longer.  Still, given the choice between having 5-8 battery replacements under general anesthesia vs 0-2 under local anesthesia I know which I would pick.  In your case, of course, it was a choice between DBS or no DBS.  We are lucky that folks like you went through that back then so the technology would exist and be at a stage of rapid advancement by the time we start to consider needing it.

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Stump,

7 hours ago, MIMILASTER said:

 IPG replacement was done each time under local anesthesia, not general.

 

1 hour ago, stump said:

Still, given the choice between having 5-8 battery replacements under general anesthesia vs 0-2 under local anesthesia I know which I would pick.  

You need to pay closer attention to what Mireille said. Her battery (IPG) was replaced under local anesthesia.

Dave

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You're right, I missed that.  However, she's in Europe where they'll do surgeries under local or regional that docs here won't do unless under general.  I know in Europe they do a lot of open incision hernia operations under local, whereas here I asked about having mine done under local and the surgeon looked horrified at the idea.  Said he'd only do it if I was under general.  My understanding is that in the USA the standard is to do a battery replacement under general.

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Not true. I recently had my spinal cord stimulator replaced, upgraded. The only reason my doctor did a general was because we switched manufactures and there was a chance that the leads would need to be replaced. Next it’ll be done under a local. Replacing the battery is a simple procedure. He usually does battery replacements with a local if they’re not replacing the leads.

Dave

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I cannot quite understand why it would be horrifying to operate on local anesthesia.  Almost all the surgeries I had were local, including C section and total knee replacement.  You recover more quickly having only anesthesia for the lower part of your body. Your breathing system is not involved and that's what makes a difference for recovery. For battery replacement,  a simple series of shots in the area where the IPG is located is sufficient. It's is a very quick procedure. The skin is cut always at the same place so there is only one scar. It is really a simple gesture for the surgeon as the IPG has already found its place and you only need to take the old one out and put the new one at the same place.

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Mireille,

In the USA where law suits are common, it has become common practice to use general anesthesia for almost all procedures. Also since we live in a capitalist country where health care is not based on what is best for the patient but what can we charge more for and not harm the patient. This is why you find Locals are the rarity and not the norm.

 

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Dave - that's great that you have a doc that will do the procedure under local most of the time.  That, IME, is not the norm.

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Just visited my neuro team and asked about battery replacement. They said the norm is local rather than general. If every thing is performing properly, the IPG is left in and the battery simply replaced. Quick and simple, with fast recovery.

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Adam -- it's been a little over a year since I had DBS surgery.
 
For me I was fine with my "every three hours" taking two 25-100 Sinement & one 200 Comtan. So around 1500mg daily of Levadopa. It was working, but at every three hours was clear I was getting peaks and valleys on medication. Functional during those peaks, but when it wore off I'd have a hard time.
 
Doc had suggested it, but I thought I would wait a few more years.
 
Returning to Austin, had a direct flight. Everything set up for best case travel. Late arrival, car to take me home (not driving at night, when tired). Etc. Well the weather had other idea's. Direct flight, so I only had a few doses of medication in my carry on bag. My extras all checked in my luggage since I was heading home. The airport got 10 inches of rain. Ended up getting diverted to Dallas. Landed at 11PM sat on the runway until 1AM waiting for weather to clear. They finally let us off the plane. At 3 AM they told us they wouldn't unload luggage in Dallas but keep it on the plane for the flight home. Lots of planes got diverted. My daughter was also diverted to Dallas and we took a bus back to Austin Airport in the morning.
 
My luggage was not there. No sleep, no medication I couldn't communicate. Jaw tremor wouldn't let any words come forth, soft voice, and shaking. The baggage clerk took her frustration out on me. "Get out of my line, if you have been drinking all night, I am not going to deal with you!"  My daughter had just returned from the bathroom, upon hearing that tirade, and let that clerk have it "My Father has Parkinson's, and needs his medication!".
 
That was when I realized it was time for DBS.

 

 

 

 

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Thank you Texas Tom,

Good information and gives me an idea of things to keep in mind.

So far I am doing good, just having some dystonia more often that is causing some issues. Most likely need an adjustment to pills. But it got me thinking what is it that gets people and doctors to start thinking about DBS.

Hope you have had some good results so far.

Blessings

Adam

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5 hours ago, TexasTom said:
Adam -- it's been a little over a year since I had DBS surgery.
 
For me I was fine with my "every three hours" taking two 25-100 Sinement & one 200 Comtan. So around 1500mg daily of Levadopa. It was working, but at every three hours was clear I was getting peaks and valleys on medication. Functional during those peaks, but when it wore off I'd have a hard time.
 
Doc had suggested it, but I thought I would wait a few more years.
 
Returning to Austin, had a direct flight. Everything set up for best case travel. Late arrival, car to take me home (not driving at night, when tired). Etc. Well the weather had other idea's. Direct flight, so I only had a few doses of medication in my carry on bag. My extras all checked in my luggage since I was heading home. The airport got 10 inches of rain. Ended up getting diverted to Dallas. Landed at 11PM sat on the runway until 1AM waiting for weather to clear. They finally let us off the plane. At 3 AM they told us they wouldn't unload luggage in Dallas but keep it on the plane for the flight home. Lots of planes got diverted. My daughter was also diverted to Dallas and we took a bus back to Austin Airport in the morning.
 
My luggage was not there. No sleep, no medication I couldn't communicate. Jaw tremor wouldn't let any words come forth, soft voice, and shaking. The baggage clerk took her frustration out on me. "Get out of my line, if you have been drinking all night, I am not going to deal with you!"  My daughter had just returned from the bathroom, upon hearing that tirade, and let that clerk have it "My Father has Parkinson's, and needs his medication!".
 
That was when I realized it was time for DBS.

 

 

 

 

This awful experience serves as a good reminder : when traveling, I always carry a large part of my meds in my hand luggage  and the rest in my suitcase (checked baggage). If my baggage is lost, I always have my meds in my hand luggage, and conversely.  I always travel with  more meds than necessary.  And I always take a doctor's prescribtion just in case.

Having dbs does not mean that you will be medsfree. Most people who had DBS still take medications but far less than prior surgery.

Take good care,

Mimi

 

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