DBS scars after one week: Hi everyone. Here... - Cure Parkinson's

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DBS scars after one week

jeeves19 profile image
47 Replies

Hi everyone. Here’s how it looks after a week. I look a bit startled in this don’t I ? Probably astonished that the sun is shining in the U.K.

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jeeves19 profile image
jeeves19
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47 Replies
bassofspades profile image
bassofspades

Wow you look 20 years younger! Maybe a light, loose fitting, wide brimmed hat to keep that sun off your head!

jeeves19 profile image
jeeves19 in reply tobassofspades

It doesn’t come out that often Bass. But I’ll stay out of whatever sun there is. 😂🤕. Hope you’re okay mate?

pdpatient profile image
pdpatient

You look good, Jeeves. How is your symptom control. Have your meds started working again?

jeeves19 profile image
jeeves19 in reply topdpatient

Hi PD. Yes to a point thankfully but I’m still rather shocked at how OFF I can be now. I was never OFF as bad as this. I hope that some balance will reassert itself in time. Thanks for asking and it’s good to hear from you.

florence9 profile image
florence9 in reply tojeeves19

I found being off much worse too

Bunny622023 profile image
Bunny622023 in reply tojeeves19

You're not actually turned on yet though, so until you are, you are not going to feel any effect from the DBS! You're brain is still healing from the surgery and stress of it, so it will take some time to get that balance and then it will be 'switch on' time. How exciting.

Nitro53 profile image
Nitro53

Easy for me to say but if it works it’s worth it eh

jeeves19 profile image
jeeves19 in reply toNitro53

Sorry.. if what works?

Nitro53 profile image
Nitro53 in reply tojeeves19

Maybe I misunderstood. I thought you had surgery to help with your meds

chartist profile image
chartist

The wounds look like they are healing nicely!

Is there a device adjustment process that you now have to go through in order to fine tune the effects?

Art

jeeves19 profile image
jeeves19 in reply tochartist

Oh for sure Art. I’m not actually switched ON yet. September 29th . Should be an interesting day.

JeanieBeanie profile image
JeanieBeanie in reply tojeeves19

Don't be tempted to go too high with your settings. 18 years ago almost to the day my HWP had his DBS at Frenchay in Bristol and we have just had his settings reduced. Too many falls.

jeeves19 profile image
jeeves19 in reply toJeanieBeanie

Jeanie. I’m messaging you privately. 🤔😀

Bunny622023 profile image
Bunny622023 in reply toJeanieBeanie

Totally agree it's all to do with settings. My husband was up to 6.2 on volts each side, but that was only on one electrode level and one program. Different programs on different levels are added to help with Dystonia, Dyskinesia, walking, speech. Fantastic programming is a necessity.

Dpeachey profile image
Dpeachey in reply tojeeves19

I’ll remember the date- it’s my birthday 🥴

Manypony profile image
Manypony in reply toDpeachey

I’ll remember too, it’s my dad’s bday

MBAnderson profile image
MBAnderson

How or what do they fill the holes with?

jeeves19 profile image
jeeves19 in reply toMBAnderson

All left with Mother Nature Marc!

florence9 profile image
florence9

You look amazing, I had DBS just over 2 weeks ago and had terrible bruising on my face.

gingerj profile image
gingerj

Wow. You are healing up nicely. I guess that you have had both sides done, given the two scars?

jeeves19 profile image
jeeves19 in reply togingerj

Yes. Correct

JH23 profile image
JH23

Tidy job done, looks as tho your healing well, not long to the switch on, gorgeous day enjoy it

WinnieThePoo profile image
WinnieThePoo

Not long till Halloween mate

jeeves19 profile image
jeeves19 in reply toWinnieThePoo

😂😳

Jimmyalp profile image
Jimmyalp

wish you get well soon

jeeves19 profile image
jeeves19

one thing that I will say gang: my dystonia has pretty much gone and this is before being switched on. My dystonia was full body and neck. Very debilitating and distressing. Just to have that gone (2 attacks a day) made the surgery worth it.

MarionP profile image
MarionP in reply tojeeves19

Very grand!!

Sherry1960 profile image
Sherry1960 in reply tojeeves19

Dystonia was the reason I had DBS in June 2022. No more painful feet cramping!

buzbyc profile image
buzbyc

do you have to stay off meds until switch on, is that why you’re noticing your symptoms more acutely?

jeeves19 profile image
jeeves19

No. I can take my normal meds. I can’t explain the worsening of symptoms really and it’s a mixed bag: like I said the dystonia has vanished but my bradykinesia and general rigidity have worsened when unmedicated. I can only presume that the brain 🧠 has been disturbed by this trauma and that the disease has worsened somehow, but I hope temporarily? I’m not worried as switch on should get rid of any symptoms but I’m watching closely on a daily basis.

Psalmody profile image
Psalmody in reply tojeeves19

Sorry I sent comment asking how you were going but I just saw your reply above.. OOps

virgo1234 profile image
virgo1234 in reply tojeeves19

When my husband had it done his left side tremor almost went away even before it was turned on. The doctors called it the honeymoon phase. Just having the electrodes inserted made his symptoms lessen. However, there is a lot of swelling and other traumas to the brain after undergoing surgery so it takes a minute for it all to settle down so you may see other things pop up, but yes they are temporary.

It takes quite a few tries to get it "tuned in" correctly, so please be patient and don't get discouraged. My husband had it done 2.5 years ago and he just now has the perfect tune. Hardly any tremor at all! His movement is faster and easier. There are so many little tweaks the doctors can do with it to find the perfect combination for you.

Best of luck to you on your journey!

jeeves19 profile image
jeeves19 in reply tovirgo1234

Thanks Virgo. Which system did your husband go for in the end?

virgo1234 profile image
virgo1234 in reply tojeeves19

He got the Boston Scientific device. He had to go through three surgeries though. One for each side and then one for the battery pack. But no complaints, he had it done when he was 54 years old and really got his life back!

Psalmody profile image
Psalmody

Looks like its healed well. How was the surgery and how is it working for you at this point?

Zella23 profile image
Zella23

The sunshine is a welcome surprise after rubbish August weather! Scars look like they’re healing well.

Put your sun hat on and enjoy the warmth! Interesting it’s helping your dystonia, wishing you all the best with navigating the switch on, and lowering your meds!

LagLag37 profile image
LagLag37

This video should make you feel better about DBS. It talks about what to expect in the next few months in regards to programming and it also is good for someone who is trying to figure what vendor to go with and what questions to ask when deciding on a surgeon and what the surgery is like.

youtu.be/fDWbjPOxH8M?si=OqX...

Gratitude60 profile image
Gratitude60

You look incredible!!!

Happy21a profile image
Happy21a

Congratulations on the surgery.

PalmSprings profile image
PalmSprings

Scars? What scars? Or as my mom would say, scars give you character. Men are lucky because scars make you look rugged, tough, mysterious…

jeeves19 profile image
jeeves19 in reply toPalmSprings

That’s one way of moist it Palm! Tell me: have you had DBS yet?

jeeves19 profile image
jeeves19 in reply tojeeves19

Putting!

PalmSprings profile image
PalmSprings in reply tojeeves19

Not yet, but I’m thinking of it. I hope you find relief from it when they get it adjusted!

jeeves19 profile image
jeeves19 in reply toPalmSprings

Me too 😊

Phusson profile image
Phusson

That's very encouraging news. I just got my approval for DBS and should be done in the fall. Good luck with improving!

jeeves19 profile image
jeeves19

you’ll be fine

Smittybear7 profile image
Smittybear7

Hope you have good lasting results.

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