u/nearfar47

While I'm quite impressed at how well DBS has worked on my symptoms, the skull disfigurement bothers me. In a limited and appropriate way.

I used to shave my head due to male pattern baldness giving me a bad look. I've let it grow out since the first procedure 6 weeks ago and worn a bandana do-rag for the time being. Underneath, the sides and back look ok but the top of my head- and the probe cover's "bump" feature- have about 3/4" of hair that's just little bits like weeds, not a lawn. It's not vanity, I'm not defined by my hair, sure. But, objectively, it looks pretty bad and I don't like it.

The incision was extremely well sutured and healed up well- great job, but I'm gonna call the resulting bump "disfigurement" of the skull.

And I'm not sure how easily and evenly this would shave around the probe cover- and also I did unilateral, and they left the unused wire under the skin on the other side- while smaller, it has steeper edges and sounds even harder to shave into evenly.

I imagine even electric clippers have a risk of nicking skin, and I have black hair and white skin. Any area I can't shave as closely will appear darker, I might even end up making a darker ring around the probe cover that makes it MORE obvious.

I thought a bit about hair transplants. I'd thought about that even before DBS. They're kind of expensive, and not covered by insurance. BUT, I kept thinking and realized this may actually be a boon- could I call it reconstructive surgery, and thus covered?

Bounced that off Claude AI with my specific insurance carrier and policy type, and this might actually qualify me for coverage that I would not have before. Maybe. If we call it "reconstructive surgery" to fix DBS scars (that's pretty accurate, actually) that might work. But the policy language could be read that the alopecia (balding) itself must be caused by the trauma, and DBS surgery didn't cause baldness.

I messaged my neurosurgeon's office if there was any "letter of medical necessity" or something like that we could try. They'd probably know more.

Anybody pursue such a thing before?

Had the third appointment a couple of days ago on my Medtronics Percept RC.

The first week, I had a range of 2.0 to 2.7 and initially anything above 2.0 was pretty uncomfortable. But either I got used to it or my brain had a bit more healing to finish up- by the second appt, I'd moved to 2.3 and pretty much all my PD symptoms went away. I'd tried the Adaptive option they gave me first and it hadn't been great, but the fixed was helping with no downsides so that.

They gave me a new program option on week 2, but it was the same thing just a bit more range.

Week 3, I told them everything's going fine, I dropped all C/L and the Xadago but kept the Neupro patch for now (they'd suggested that at the last session). I had only a few traces of breakthrough tremor that aren't really a significant thing. Got a little stiffness in that hand while typing but I can keep typing indefinitely and things don't ever go all sideways like before.

So, basically, didn't have complaints, apparently looked good on exam and walking down the hallway, so they didn't see a reason to go poking around with new settings, I already had more range to try if I needed more. They left me with the program unchanged and asked if I wanted to cancel the series of weekly visits we had scheduled and just check back in in a month. Sounded fine to me.

So, quite a flex- you're doing awesome, doesn't look like you need us, have a nice life and come back whenever. (paraphrased)

I would caution others not to build up too high of an expectation of how DBS might help them. My PD's always been "different" in some specific ways that on one hand concerned me that it was so weird that maybe it wouldn't respond to DBS like the experts would expect.

On the other hand, I have this BTP theory on the table (read my history on that) and there was indication that BTP cases respond really well to DBS even though levodopa doesn't do much. But only 3 people identified as BTP cases had gotten DBS so not a very meaningful sample size.

Hard to picture now that that's what I had to go on and felt there was a nonzero chance that I would do DBS and get nothing off it. That sounds crazy but I basically got nothing off the levodopa.

And I'm more able to say now that levodopa really DIDN'T do anything. This response I have right now off the DBS is being normal again, all the time. I look back and don't think maybe I was being too pessimistic that levodopa wasn't doing enough. It didn't do anything like this.

Funny thing is, if I start wondering "how bad was it before, really?" I don't have to wonder. Just turn the system off and wait a few minutes and find out. It's not debilitating as things go, it's only my left side, don't need left hand or foot to drive in USA, I don't fall, speech still strong, and tremor/stiffness comes and goes. Sometimes couldn't type or do some other things. I'd keep my hand in my pocket and most people I worked with hadn't noticed.

A lot of people with PD have much worse problems. Dunno if I wanna say I'm fortunate, it's be fortunate to not have any PD in the first place.

What I do know is this is way better, totally worth it for me, and levodopa was as useless as I thought

I had my second Medtronics programming session a few days ago.

From what I was told, the prior 2.0-2.7 scale on my patient controller controlled current, the frequency, duty, and contacts were fixed. On day 1, I couldn't set it above 2.0 without being alarmed by the jolt, but by the second appt I was using 2.3 comfortably with better results.

Really, we didn't make any significant changes. The new program can do a third digit in 0.05 increments, and I think I can set it higher but I can't see how far it will go without stepping that far in live stim and I can't tolerate that.

All I did was leave it at 2.35. So, basically, no setting changes.

OK, right before leaving work for the programming, I'd turned it off for kicks, went down the hall to the bathroom, and I could tell my arm was stuck to my side, hand cupped and tremoring. Turned back on, went away. Pretty clear.

I never felt C/L (Rytary) was really doing much. I'd been inconsistent with meds after the surgery, and was supposed to be off meds on the first programming appointment but never really resumed them, just using the DBS.

My head was kind of crazy for awhile after the first programming. There's some external life factors that may have set that off, or the DBS. I was sort of panicking that this would be my new normal, but it cleared up a bit before the second appointment. Brought that up and the tech pointed out that they didn't ask me to quit Rytary, Xadago, and Neupro cold turkey like that and it could affect you like that and make it harder to adjust the program.

Well, I only restarted the Neupro patch. Neupro and DBS. I gotta say, the net result is quite excellent, I've never gotten this good a result from meds.

Before, my symptoms came and go for no apparent reason, and thus hard to gauge what meds were doing at any given time.

But this- it's near complete relief, consistently. All the time. Arm's never stuck, no tremor, no leg/foot shaking. Typing for awhile, my hand can get a bit stiff, but not enough that I can't type, and it doesn't stay that way. The wacky dystonia where my hand just forces itself open and stuck that way has not happened again.

I'm staying calm on this because I need to stay objective. The first week after programming was good, but limited. We didn't change anything, so it either needed another week to recover from surgery or probably the brain just needed a week to get used to working with stim.

Now, it's excellent. Beyond my expectations.

A few days ago I laid down and went quiet (ok, some THC may have been involved) and just listened to my body's feeling at rest. I could tell there was something pretty loud still going on all up and down my symptomatic side. I turned DBS on and off during that time and I could tell it was still there, but it seemed like it shifted the center bias of the activation to a more reliable part of the response curve that won't oscillate.

A few days later, I'm not feeling that even. Doing things or at rest, the afflicted side almost feels the same as the other.

I gotta say, given my lack of good response to C/L, part of me had been long worried that DBS wouldn't help me, not as much as they said it would. And, those stories of a "miracle moment" when they turn on stim and tremor just stops dead did NOT happen with me. Not at first. And it's not all instantaneous when I turn it off and back on, it really takes a couple of minutes to fully resolve.

It is working, quite excellently.

Downside- I have too much of a bald spot and have just shaved my head for years. I've been wearing a do rag and cap because I haven't figured out how to shave around this, and even with clippers I don't want to risk nicking the incision area but it's pretty close to healed now. The bump where the probe is is pretty flush actually, but I did ask for unilateral.

What I didn't expect is they still put the unused lead under the scalp on the empty side, and it's kind of like an inline headphone jack. They said it was put there to make it easier to install a second probe if I need it later. Small, but steeper edges and more tender than the actual active probe cap. Would be harder to shave around, too.

I might complain about this, I didn't know this was going to be done. Now, I don't know if it can be removed and if so how much surgery that would entail. I mean it need to have the incision on the IPG re-opened to unplug it there and then pull the wires out through the channel down the neck which could take a significant recovery. My MDS always recommends both sides be implanted even if symptoms are unilateral right now. But I've had little progression over 9 yrs and I'm betting it either will never spread to the other side, or something cure-like will hit the market by then. I didn't want the extra "bump" of another probe, but this loose jack they left there is arguably worse than the probe cover bump.

I'm not going to jump on this issue right now. There's still some potential healing time before I can tell how uncomfortable this will ultimately be. Nothing needs to be rushed so I'm just focusing on getting use to the DBS stim itself and not this.

The Medtronics Percept RC was way smaller than the non-rechargeable, and the demo unit seemed pretty small on the table, but on my thin frame it's still pretty huge. If I cross my arm over the other in a particular way, it feels like I'm gonna rip the IPG right out of the skin pocket so I'm careful not to move like that. I expect that will strengthen up more over time, we'll see.

I've moved away from Adaptive Mode. Fixed seems fine, just a matter of amplitude selection. The Communicator puck, Patient controller unphone, and charger seemed like kinda awful design at first. Now, I can say it's REALLY awful. The charger is poor at indicating if it's in position, the patient controller app fails to connect and send commands like 80% of the time and I can't always tell if the problem is the Bluetooth between the unphone and Communicator, or the link between Communicator and IPG. Gonna talk to Medtronics about this. This isn't as bad as it sounds though because I don't need to be using the controller often. I've just been using it a lot at first to compare on and off and adjust what I can. Now, I would be fine to set it aside and not use it for weeks so it's not critical that it's as crappy as it is.

According to the initial testing, the skin biopsy test was positive in 92.7% of people confirmed to have PD, and 3.3% of healthy volunteers with no indication of PD tested as "false" positive. There are alternate possible explanations, the lifetime risk of developing PD is roughly 2% for men and 1.3% for women so maybe some or all of these were actually developing PD and the test was actually seeing a problem developing before anyone knew.

There's some potentially important questions about these cases. The data is only 3-5 yrs old and I don't see any follow-up data. There's probably pretty few tests that have ever been done outside the clinical trial on people who weren't expecting a PD diagnosis, because it's too invasive to be a general screening test for people without symptoms.

The first programming session finally happened 5 days ago. I have weekly sessions set up for the next 5 weeks or so.

I kept my expectations open. I was told not to expect too much the first session. I have Medtronics Percept. My symptoms have always been rather "episodic" (just come and go in episodes that don't seem to have anything to do with medication). I have been much less active to heal up from surgery. My symptoms do seem to be less throughout most of this time.

During the programming session, I didn't feel much. No speech problems, not much pulling or jolting sensation. They sent me home with some initial settings. I know there is a wide space of variables they adjust for- frequency, voltage, pwm duty cycle, and there are 4 contacts they can choose to direct current through. Also, on Adaptive, how fast it adjusts the stim level in response to "hearing" a tremor signal. Most of this is decided and locked down by the clinician controller.

Well, this is "complicated". I have a lot of thoughts here. I've spent a lot of time turning it on and off and changing modes while doing different things throughout the day.

The patient controller gives me these options: Fixed stimulation: allows me to adjust from "2.0" to "2.7". I don't know what these numbers mean other than it's a scale of intensity. I can definitely feel 2.0 but what it does doesn't seem to correct any symptoms. Anything higher becomes uncomfortable. Trying out 2.7 is like a Johnny Knoxville Jackass dare. Yeah, it's like "playing" with a stun gun. It's WAAAY too high. Nothing about the Fixed mode is helpful or comfortable (yet).

"Adaptive" is much less. I can definitely feel it "kick in" with a passing wave of jolting power, but it's not too strong and only last a moment. I can hit "Pause Adaptive Therapy" and when I do, and a number "2.9" shows up while paused but no number appears while Adaptive is active. From what I read, this isn't actually the same as turning the stim off, I believe it just stops sensing and keeps sending out whatever the level was when you hit the button, but it's definitely not 2.9 at that point, not if Fixed Mode 2.7 was like playing with a stun gun. 2.9 would be "I'd Rather Be Waterboarding" territory, but I don't feel anything. It always reads back 2.9 when Adaptive is paused.

Maybe 2.9 is the max the Adaptive will ever use to respond to a sensed tremor. If so, it's weird that it only offers up that figure when paused.

I can't get any feedback on when it's sensing a tremor pattern or what intensity it's actually sending out. I did ask about the adaptive period and they told me it could be set very long- like a minute or two to fully ramp up or down- but mine was set at an immediate 250ms response to turn on or off when it sensed a tremor. Unfortunately, the patient controller simply isn't programmed to give the patient any info on what it's seeing or doing other than that baffling fixed "2.9" report while paused.

Or, of course, I can straight up just turn therapy off entirely. Which I've done a lot. Which should be able to clearly show what it is and isn't doing, but it may not be that simple- it may be a bit more interactive, that your brain learns how to respond to stim in a helpful way.

Bottom line- so far, no miracles. If it's helping, it's not super clear what it's doing. But I'm not jumping to conclusions- this was only the first programming, we have a lot more to go through.

The critique of the hardware, though- ok, that part I'm gonna roast Medtronics for. It's mostly functional, I guess, but just poorly designed and outdated by decades. The connectivity from unphone to Communicator to IPG is really unreliable and confusing as to what state it's in and unclear how to fix the connection. Charger has problems too. The way its finder works is just poorly coded, inadequate audible and visual indicators and poor physical design. OK, to be fair, it's "adequate" in that I can find the charging spot. But I've written lots of microcontroller projects and made hardware and this is designed like a 1980's Tandy handheld game. I'll write a more detailed critique at some point of what they got wrong and how to fix it, but that will come later.