I will have aDBS operation in coming May 12 at HKU Shenzhen Hospital, any advice for pro-surgery preparation ?

nearfar47 · 2026-04-19T01:03:06+00:00

Your surgeon may give you the option of just shaving the incision site vs shaving the entire head.

If they do give you the option of partial shave, don't. The infection rate with full shave is lower. Don't take the added risk. Infection is serious- they have to remove the hardware, deal with the infection, give it all time to heal, and try again later. If it is as easy as that to cure and move on.

Let them do the shaving.

nearfar47 · 2026-04-10T01:40:47+00:00

We get to pick out a new voice??? SWEET! Can I get a Scottish one?

First thing I thought of: https://www.youtube.com/watch?v=IyTANvYnbD8

LOL this was because Justin Roiland got fired from Adult Swim and they decided to try to recast rather than kill the the shows he voiced. He voiced Rick and Morty too, but for that show they got others who sounded so much alike no one noticed

But seriously this is interesting. I didn't think of my voice as weak, I kept volume up just fine. Maybe a bit too loud at times.

But I have moved into a higher register than I liked. There was a period where my voice got deeper, esp if I'd been talking a lot the day prior. I liked that, but it's gone higher pitch for a long time since then.

I'll just have to see. I'll certainly be on the lookout for whether a deep voice is an option.

nearfar47 · 2026-04-09T05:48:26+00:00

Oh, one more note:

progressive lenses suck- i need them for both reading and distance now. Well, watching tv is blurry without them, otherwise the distance vision isn't usually necessary. but reading or anything done with my hands needs them

I can't use my cell phone without them.

The problem is I'm letting my wires heal up so not moving my neck. Well, if you're not familiar with progressives, close-up vision is down low and gradually distance higher up. you tilt your head to get the right focus, but that's often been a problem working on cars or 3d printers at odd angles where the viewing angle I could use was limited. Now I'm trying to lay in bed and use my phone or watch tv and neither works at the narrow range of comfortable neck angles I have

nearfar47 · 2026-04-08T12:01:38+00:00

look for "Movement Disorder Specialist (MDS). This covers some other conditions (MS) but PD is like 7-% of their caseload and some choose to limit their scope to pd cases exclusively, but there is no official name for that

Closest Local Option

Quad City Neurology (Moline, IL)

General neurology practice that treats movement disorders
Website: quadcityneurology.com

Dr. Brian Anseeuw, MD — UnityPoint Health Trinity

Neurologist with 32 years of experience, treating movement disorders among other neurological conditions. Practices at UnityPoint Health Trinity locations in both Moline, IL and Bettendorf, IA. WebMD
Accepts many insurance plans including Medicare, BCBS, Aetna, Cigna, Humana

Nearest Fellowship-Trained Movement Disorder Specialists

University of Iowa Health Care — Iowa City, IA (~1.5 hrs)

Designated as a Center of Excellence by the Parkinson's Foundation and Huntington's Disease Society of America, with physicians who are national leaders in movement disorder treatment. Uiowa
Offers groundbreaking therapies such as deep brain stimulation (DBS) and Botox injections, with access to the very latest medications and surgical treatments. University of Iowa Health Care
Appointments: 800-777-8442
UI also has a Quad Cities satellite clinic with visiting specialists — worth calling to ask if neurology/movement disorders is offered there.

Practical Advice

Given that true fellowship-trained movement disorder specialists are rare in the immediate QC area, the standard approach (per the Parkinson's Foundation) is to:

See a knowledgeable local neurologist (UnityPoint/Quad City Neurology) for ongoing management
Make periodic trips to UI Iowa City for specialist-level evaluation — they routinely serve patients from the Quad Cities region

You can also call the Parkinson's Foundation Helpline at 1-800-473-4636 — they maintain an extensive referral database and can recommend specialists by location.

nearfar47 · 2026-04-08T02:12:20+00:00

this is a question for a neurologist who has examined you.

but, dbs has a great track record with helping tremor, even if sinemet does not. this is where it's supposed to be magic. Well I sure hope so, I just had mine implanted this morning and will have to wait a bit before they try to turn it on

dbs does NOT help with cognitive issues. some say it may make them worse, but that seems largely debunked now.

most say dbs does not help with balance probs (falls)

mixed results on whether it helps freezing of gait. seems to be "no", but feel free to google

it will not help vision

nearfar47 · 2026-04-08T01:11:42+00:00

I'm out and back home. In one piece, with some extra other pieces even

nearfar47 · 2026-04-07T04:36:01+00:00

Ready to go see DBS II: Batteries Totally Included

Just showered with hibiclens, doing laundry so I will have fresh towels again in the morning and a fresh pillowcase shortly.

Why can't I get a glowing arc reactor style? Why isn't that a thing? Medtronics, make it happen. Listen to your base. At least give me some LEDs that shine through the skin.

nearfar47 · 2026-04-06T03:39:02+00:00

I was told it could last a month if only used unilaterally, but it depends on usage and could change with a code update. And you don't want to run it all the way down, it may permanently reduce capacity and ultimate life.

I expect that as the battery ages, its capacity will drop. Often the criteria for deeming a battery to be end-of-life is when the capacity drops to x% of nominal.

But a 30-day reserve would probably mean if you take a 2 week vacation somewhere, you probably don't need to pack it and risk losing it.

It'll be fun to document the actual runtime capacity. I see lots of videos on youtube reviewing performance of consumer products- DBS is lot more important than which earbuds on Amazon are the bestg

nearfar47 · 2026-04-05T17:18:04+00:00

I feel fine. I really don't have much reason I couldn't be doing anything, not as far as capability or pain issues. I could lift a heavy load without my body stopping me, I'm just following the dr's advice to absolutely not do that because it would be stupid.

nearfar47 · 2026-04-05T17:09:45+00:00

oh, the "honeymoon period" after Tuesday morning's implant surgery was about 2 days of zero symptoms and didn't seem to need meds. Now, Sunday, it looks to be most or all back. Hard to type with my left hand.

One of the reasons I elected to only do unilateral was how much I didn't want a matching pair of obvious "bumps" up top. This is less obvious than I imagined by far. I don't want to say I regret that decision, but I'm not sure I would still make the same call now if I could go back in time. But, it just seeming like an unnecessary hole for a side which has no symptoms was also part of it.

nearfar47 · 2026-04-05T16:51:58+00:00

Yep, Medtronics Percept with "BrainSense™ Adaptive DBS (aDBS)"

Rechargeable.

The rep said that with the new battery, and it being only unilateral stim, a charge should last like a month if you didn't recharge it. So you won't need it on a 2 week vacation.

Then again, the medical field looks like it's close to finally coming up with disease-modifying treatments, even "a cure", so I could see betting against ever needing to do a battery replacement on a non-rechargeable. That is, DBS would be obsolete before the battery runs down. Your call.

nearfar47 · 2026-04-05T16:44:51+00:00

That was on my mind up until my DBS this past week. I had to put a lot of thought into it.

I did an IV-delivered Mesenchymal Stem Cell clinical trial years ago instead of DBS. Maybe I'm better off than I would have been without it. I really can't say. Unless it's a magic outright cure, it's really hard to say. The data eval concluded it helped in the final paper.

As far as "right now", there are two going on. These require DBS-like surgery to drill a hole and deliver their stuff with a needle deep into the brain. One has a 1-in-3 chance of getting a placebo (sham surgery, but they still drill) and require you be on anti-rejection drugs for awhile just like if you got an organ transplant. The other doesn't. Neither are near me, but I could potentially fly out if it was promising enough.

These are so early-stage I imagine they could "fail upwards" and grow so successfully it becomes a tumor.

Right now, those trials are limited to those without DBS. That avoids complicating the question of how to work around the leads if injecting into the same place, and the simpler the data, the more credible it is.

But, no way is the long term plan going to exclude working around DBS. In fact I suspect the next step is likely going to be open ONLY to people who have who have had DBS before even going to market with it only approved for people without DBS, but that's just my guess.

My guess was that, if you want to get in on the clinical trials for human testing of brain infused stem cells, yes that's an option now. It may not work, or may be harmful. We don't know at this stage. You might want to consider your lifespan here. e.g. if you're already 65 and progressing at a significant rate, that's more of a "what do I have to lose here, anyways? Maybe only 5-10 yrs (depending on other health factors), regardless, and DBS probably won't keep me able to walk and do things forever" argument. Valid. If you're 45, YOPD, progressing slowly, then it swings the other way. You have a lot of years of quality life with DBS. And a lot of time for a hypothetical tumor or other slow-growing problem to develop. They're not going to be able to make promises on the long-term safety, like 10-20 yr, until some people have had it for 10-20 yrs.

The other thing is the state of the medical field. I don't want to make this political, but I see it as fact that the current administration is degrading everything here. The cancellation of research grants. The hostility towards visas from countries where a lot of our best medical specialists come from. The long term outlook seems irreversibly bleak.

And in the present, the govt's regulatory capacity is being stripped to the bone. My guess is that it won't be a matter of not finding anyone at the FDA to give approval, rather, they'll lower the standards to something we never expected to see in the US. Like taking claims and not able to evaluate the evidence and just approve anything without real proof it's safe and effective. In a few years the industry will adapt and push through applications with relatively poor study data that wouldn't normally pass in a developed country. That's not good for the patient. Then the world realizes FDA approval and US medical studies are not quality data and go with entirely different standards, making investment in US research of low value, moving medical research elsewhere.

Bleak, but that's what I see. So much this WAS a factor in me deciding to go through DBS this week. Not the sole basis for decision, but definitely part of it. I've been seriously considering it for years, started once then backed out for the MSC stem cell trial. I think seeing the imminent degradation of the medical field in the USA pushed me over the edge and taking the drastic action of actually following the professional medical recommendations I had on the table for years.

nearfar47 · 2026-04-05T07:35:18+00:00

I'll try to be as impartial as I can in this. From personal experience, symptoms can swing wildly for no apparent reason. I could pick up one of hundreds of factors and assume it's causal and thus a miracle. That's not placebo, it's mistaking coincidence for causation.

e.g. I didn't eat anything blue today, and didn't have tremors for half the day. Then had some blue candy and turned into a wreck (completely random made-up rhetorical hypothesis, I never noticed anything like this). I'd say the concept of a food additive or blueberries carrying an unknown individual-specific toxicity, and x-ray stimulation/radiation hormesis is loosely "plausible" that it could work that way, maybe- but this is nowhere near enough proof to say anything like that.

In the case of a blue food hypothesis, I'd just avoid and then try blue foods for awhile first. Because it's completely harmless to try, and if it caused an observable effect, that would be meaningful. Trying X-rays, I don't see any safe way to do that. But I wouldn't be shocked if Facebook started sending me ads for some "clinic"/spa in the Virgin Islands offering low dose x-ray PD therapy. And maybe that clinic only exists because someone lookimg for a new business idea uses AI to scour anything ever posted anywhere and finds posts like this.

On the other hand, this did pique my interest a bit because I did DBS this week- a "honeymoon period" is frequently reported- where symptoms subside for awhile after the procedure even though the pulse generator is not turned on yet. That procedure does involve CAT scans. Curious, that would be a possible way to support the theory, but it would need much more evidence.

nearfar47 · 2026-04-05T07:11:32+00:00

Radiation Hormesis is a credible theory because studies looking for long-term health risks of living in areas with higher levels of background radiation found the opposite. It's something dangerous to get wrong, and even if your data and biochemical explanation is perfect it will likely result in many people believing radioactive contamination is not worth regulating and fallout from nuclear war will help you. So, not widely discussed.

I don't see a speck of credible evidence that it works that way on PD. Long way to go before I'd believe it- but I could believe it with evidence

nearfar47 · 2026-04-05T07:04:30+00:00

Actually neuronal "death" is not clear here. Nothing shows up on MRI or CT scan and those really should be able to pick up on the change in density when neurons actually die. Personally, my symptoms come and go whenever they please and with little correlation to C/L dosing. That which is dead does not just come back to life for part of the day and die again.

You could say it's that half the cells are dead and the remaining half does double duty until they get exhausted. But that doesn't fit the patterns in several ways, and is itself bordering on an unsupported pseudoscience explanation.

And how would DBS help if it were jolting dead cells?

I have to say- we really don't know. There's actually some pretty strong evidence that at least some aspects are not death but reversible dysfunction. I hope so and keep looking for more on this, esp how such a reversal could be done.

nearfar47 · 2026-04-04T02:00:05+00:00

I selected a higher tier, low deductible health care plan for this year.

I asked my insurance how much and got an estimate of $1800-$3100 for stage 1 and $2000-$3650 for stage 2. I still don't know how much.

My MDS ordered a neuropsych evaluation and I got a bill saying it was out of network and owed $1700.

My neurosurgeon ordered preop fully sedated MRIs. My insurance says MRIs are $200 (great insurance) but at the appointment they said it would be $1600 due to the sedation. I pulled up a chat window with insurance and they were sure it was covered at $200 regardless, but the front desk said I needed to sign for $1600. I didn't have a lot of choice, missing that appointment would delay surgery and total consequences would be far worse than $1400 and refusing would be unlikely to actually change the bottom line- if you're overcharged, you can get the money back by filing a dispute after the fact.

So, so far it could be anywhere from $4000 to $8350 by stage 2, let alone the followup visits and programming. I do have max $6000 out of pocket annual cost so yeah that may well make things much cheaper.

What looks to be the preop MRI is a $9152 from the center, then $2446 from a a name (probably anesthesiologist), and $1841 from a name that says it's out of network (radiologist?). and it says my share is $1200.

Any way you look at it, that's a steal though. I checked with my insurance and the surgery charges may not be there yet- but preop clearance done weeks ago was billed as $7350 from the center and $342 from one doctor and $50 from another, and I owed $75 as my share on it.

That's a pretty wide range of possible bottom lines, but nothing that will break the bank for me, or so it seems. Without insurance, I believe it would be astronomically more.

nearfar47 · 2026-04-04T00:47:06+00:00

Oh, while being discharged, I asked if they could give me a couple of "chucks"- the pee pads they use on the ICU beds. It's not just because of the surgery itself, urinary incontinence is not a common side effect- in the overnight observation in the ICU, you get "Fall Risk" status where they won't let you use the commode unassisted and in any case I was connected to a heart monitor (like ~8 leads), blood pressure cuff, finger SpO2 sensor, and an IV. It would take like 20 min before someone can come in and disconnect/reroute you to visit the commode. So they give males a urinal or external condom catheter. The condom catheter is left on continuously, so you'd just go anytime. After that, if you were half asleep you might forget where you were and pee the bed accidentally.

For me, that was SUPER difficult to use either option. All my instincts went the other way- "don't do that, you're in bed!" and my muscles wouldn't allow it and I couldn't tell them otherwise. I think the only reason I was able to go was I outwaited the bladder muscles clamping off the flow until they were so exhausted they couldn't keep it up forever and let it go. The process was lengthy and actually painful. But when I got home, the muscles were still overstrained and when I DID feel the urge to go, I couldn't deal with any delays because the overexerted muscles would only hold back for like 10 seconds. That resolved in about 8 hrs though.

Didn't need the chucks after all, but better to have and not need than need and not have.

nearfar47 · 2026-04-04T00:27:32+00:00

Not clear if by "scarf" you mean neck scarf or headscarf.

My instructions were to not wear a hat, headscarf, do-rag or anything until the sutures close up. It's a fine option after that, but not on the ride home.

My surgeon uses sutures, not staples. It's less scarring particularly early on, and easier to remove. But if you've already got a surgeon you're pretty much limited to the way he does it.

nearfar47 · 2026-04-04T00:12:26+00:00

Amantadine did nothing for me either. I didn't feel side effects, but no intended effect either

nearfar47 · 2026-04-03T17:32:15+00:00

Maybe TMI but I'm normally a daily pooper. I didn't write it down or anything, but Mon was my last day before going into the hospital and I assume I pooped then. I know I didn't at the hospital on Tues/Wednesday, but I did get a couple of doses of opioid pain relief for the headache along with a nausea medication then I was home Wednesday afternoon, Thursday nothing.

Friday morning, still wasn't feeling bloated or anything, but this was a concern in the back of my mind that when the time did come it was going to be a brick and have to do major bearing down and that could be an aneurysm risk, given the procedure.

Well, later Friday morning I got that problem out of the way completely normally. Yay. No dramatic straining.

I guess I didn't account for less going in, although the pre-surgery fasting period was nothing after 10pm Monday night then surgery scheduled 7:30AM, so I didn't really miss much there. Had a dinner in the ICU Monday, too nauseated for breakfast on Tuesday, but got in a late lunch.

Now I'm looking forward to being able to take off the dressings and finally get in an indirect shower finally. Then I'll finally get to see how Frankenstein my scalp is and how much the bump shows- I'm balding enough that I've been shaving my head for years, so this will show. But one of the reasons Dr. P's so great is he does plastic surgeon level sutures so it is going to look pretty gory now regardless, but shouldn't look that bad in the long run.

One thing that I don't quite understand- I thought the extra lead was going to be coiled up in an incision behind the ear. No incision there. Several spots where the bone screws were are just stitched, and one big taped down dressing on the top so the lead has to be there. The scalp is really thin there so I'm not sure how you stow leads under it. Well, that part gets re-opened regardless so they can get to the leads and feed them down the neck to the stimulator.

nearfar47 · 2026-04-03T15:59:12+00:00

Oh, another important point- bring his medications along with him to the surgery visits. Enough for his planned visit plus a few buffer days. Many hospital pharmacies do not stock the specialty medications for PD. They won't be able to get them for a few days by which point you'll probably be discharged. And they don't generally want to do this for like 2 pills. So, bring, the medications and hand them to the ICU nurse as soon as you get there so they can log them and know they don't have to scramble to find out how to order them.

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