DBS on 12/17/24

[LagLag37]

I had DBS surgery on Tuesday 12/17/24 and so far it has been the right decision. I contemplated the decision for several years and after I suddenly started going downhill after 20 yrs diagnosis and my neurologist said I was still a good candidate, I decided to go for it. When I trying to make the decision someone said, what choice do you have? They were right, it wasn’t going to get any better. So that’s when I made the big decision. I took the tests that needed to be done and talked to the surgeon and decided to go for it . The hospital had just lost a surgeon and we’re down to only one. They had hired two new surgeons and they said I could change my surgery date from late June to December if I went with one of the new surgeons. I asked to meet with him before I made a decision. I met with him and felt comfortable. He was an MIT and Stanford grad so I thought he must know something about DBS so I made the decision to go for it. My surgery was this last Tuesday 12/17/24 and as of today i couldn’t be happier. Besides a bad headache from the halo and a little pain from the incision from the battery, I believe I had a successful surgery.

The day of surgery I was a nervous wreck. I heard all kinds of stories but everyone is different so what would my journey be like? (to be continued I need to rest a few minutes). 😀🥊

[Juliegrace]

Congratulations. Like you I felt I had no other options, but overall I am happy with my decision. It’s been a little rocky with the programming but I am making progress. Best of luck to you with the next phase!

[LagLag37 in reply to Juliegrace]

You too ! We are making good choices!!!

[Leslim in reply to LagLag37]

I m the same with you. But I have an infection after the 1st surgery, they have to cleanup my right dbs. So they managed to cleanup the right dbs and repatched my dbs insertion. Now, I am cleared of the infection and i have to adapt to the new dbs settings now. Hope to get through this dbs settings in order to start work again.

[pdpatient in reply to Leslim]

Leslim . Thank you for sharing your experience

Can you please tell me more about your infection? May i ask if you are diabetic?

[Leslim in reply to pdpatient]

Hi pdpatient, I m not diabetic. I have the infection cos the 1st dbs surgery, I have surgery around end of June. My wound did not heal well after the surgery, I was readmitted due to the wound and I developed a fever right after that.There are 2 types of bacteria which I have after the blood test. 1st bacteria is a normal acne bacteria, 2nd bacteria needed Iv type of antibiotics...

Part 2... coming soon

[eschneid]

LL & J,

Congrats on taking the plunge and it being successful. I am in the same boat LL, where I am declining and have thought about dbs, fus and the Vyalet pump with subcutaneous levadopa delivery. I was wondering if you considered the other two I mentioned and your thought process on that.

Hoping your quality of life improves for a long, enjoyable future. Keep us in the loop if you are up for it.

Eric

[LagLag37 in reply to eschneid]

I will keep you informed. I can’t keep any promises but I thought I would try & do a daily and/ or weekly thing just to keep all of you informed on what the journey is like.

Tuesday was a good day as far as tremors. I had basically zero. Wednesday they came back but not as bad as they were before the surgery. I started taking my meds again. Thursday I had to take them every 3 hours which is normal. Overall I’m feeling good. I would never guess I just had brain surgery 4 days ago. I had a headache the first couple of days, I think from the halo and the pain pills took care of that and the battery pack is a little area is a little sore but as of right now I feel really good . The doctor told me what helped is that I was healthy and strong before the surgery. I think that’s what brings Rock Steady into the story. It helped me to fight this monster with all the power I could. So I think if you have the feeling of fight in you , you’ll be ok with going through this next step. Keep fighting! What other choices do you have.

Someone asked if I had considered FUS and/or I think it was croxent (sp?). I did think about them but I haven’t heard too many favorable things about them and they are expensive. (To be continued)

[LagLag37 in reply to LagLag37]

My DBS surgery was 12/17/24. I had my first programming 3 days ago. It went very good. I am blessed ! They did my left side first and it took about 5 minutes and it was perfect. The right side took 3 hours. It was tiring but they just couldn't get the perfect "sweet spot ". They got very close though. I walked out of the hospital feeling like a new person. I could swing my arms without thinking about it, I wasn't walking on my toes anymore. I felt like me again. I truly feel like it was a miracle. The last two days I've cut back on my meds some. Prior to surgery I took it every 3 hrs and now I take it every 4-5 hrs. The programmers are sure they can get my meds even lower with another programming session. My husband also noticed I don't have that blank stare anymore.

So if you have doubts about having DBS surgery and your doctor says you are a good candidate, I say Go for it! I put it off for a year or more and I could have been reaping the benefits a long time ago. 🥊🥰

[Juliegrace in reply to eschneid]

I did FUS GPI as part of a research study in 2016. It only lasted around four months. I have been waiting for the pump for four years and I just ran out of time. I looked into the Duopa pump but felt it was too invasive. I swore years ago that I would never have DBS.Just goes to show, never say never. I am happy to have gotten the DBS. I will keep the pump as an option for the future. Hopefully they will make the pump a bit smaller in the future and figure out a way around the cannula having to be changed every other day. I don’t understand how there can be diabetes pumps the size of a flip phone yet our pump is huge and unwieldy . I see my MDS next week for the First time since the surgery; I plan on ask her about Crexont although I tried rytary early on and it did not work for me.

[TeamPG in reply to Juliegrace]

Hi Julie, thanks for sharing your story, glad you are doing well! Curious why they recommended GPI versus thalamus for your FUS? Where did you have it done?

[Juliegrace in reply to TeamPG]

It was for research on the GPI.

[TeamPG in reply to Juliegrace]

Understood. What symptoms were you trying to address with FUS? GPi isn’t normally recommended for tremors so I was wondering what they were hoping to achieve.

[Juliegrace in reply to TeamPG]

Mostly dyskinesia, but everything but tremors.

[LagLag37 in reply to Juliegrace]

I had pretty bad dyskinesia also. It’s better which seems strange because it’s caused by meds. Maybe all this is placebo but I hope not.

[LagLag37 in reply to eschneid]

I found this on another post.

Gallowglass profile imageGallowglass

1 day ago

yes. And have tried Rytary and Crexont with bad or no results. Both are outrageously Expensive

[Psalmody]

Great to hear a good report. Been in early discussion of DBS for myself so very keen to hear how others have got on. Good you are having a rest and taking it easy after brain surgery. Wishing you well with great continued success and I'll watch out for updates.

[00Mark]

I hope you have a great result. Thanks for the commentary!

[jeeves19]

Good for you Debbie. Hope that it continues to be a benefit in your life.

[Missy0202]

Good for you! Keep the great updates coming!!!

[Lulover]

Very helpful information, thank you. Did you get the electrode implants done and the battery/transmitter pack in the same day? How’s your progress with the programming?

Juliegrace is the first one I read about that got the battery/transmitter done only 5 days after the electrodes were implanted. Since travel is an issue for me, it would be very helpful to have them done at the same time.

I expect to learn this coming Monday or Tuesday about my surgery date.

[Juliegrace in reply to Lulover]

I was originally scheduled to have the two surgeries 7 days apart, but there was a maintenance issue with the equipment so they changed it.

[LagLag37 in reply to Lulover]

Tell them my story and see if they could do both. I’m not sure what their reasoning is for doing them separately? 🥊

[MBAnderson in reply to LagLag37]

Perhaps recovery is easier from1 procdure. Less risk of infection. If the 1st procedure becomes infected, there is a risk of bacteria migrating along the wires to the controller. Less time anesthetized. And, probably other reasons.

[Gumm in reply to Lulover]

Best wishes and good luck!

[Agate_17]

thank you for posting this. Your position is much like mine. I have started the process but understand that it may take up to a year or more. I have come to the conclusion that I have no other options ….Parkinson’s is insidious. I’m 69. My brother, with PD, is 90, and we lost our sister 3 ya ago at age 86 from PD.

[pdpatient in reply to Agate_17]

Agate_17 I am actually curious about your story. How was your sister's life before she passed away and how many years did she have Parkinson's? Peace be on her soul.

How is your brother doing now, and how many years has he had Parkinson's? How is his quality of life?

I am not sure if you intended to highlight the positive aspects of life experiences so as to give hope to those of us who are YOPD. The common perception is that a long life after Parkinson's is a torture, so any insights would be extremely valuable.

Thanks in advance for your inputs.

[Juliegrace in reply to pdpatient]

My mom has PD, As did one of her brothers. He died a few years ago, but not from PD related causes although it certainly didn’t help his situation . My mom has had it for about 26 years along with a plethora of other issues at 89. My PD which I’ve had for 16 years, since in my late 40s is much worse than hers.

[pdpatient in reply to Juliegrace]

It's incredible that Parkinson's tends to run in families more often than one would think.

On the other hand, I come from a huge extended family where I am the only one with the disease.

[Agate_17 in reply to pdpatient]

Thank you for your questions.

Brother, now 90 yr, was diagnosed in 2007 or 2008. He had a mild stroke in 2022. His cognition is excellent, he still is the usual winner playing cards . Limited use of right hand and does not nor stand without support. His speech quality is very low and he has trouble swallowing.

Sister diagnosed in 2002 age 64. She had limited health care because she lived in a remote area. Her husband and care giver passed and she entered a nursing home. I think it was in 2020. She was very unhappy there. She had been experiencing falls for several years . She also had had hallucinations for 8-9 yrs. The week before she passed, she became unresponsive and did not eat nor drink that entire week

Myself, diagnosed 2010 age 55. One major delta between me and my siblings is that I exercised at the gym starting age 35. They were of a generation that did not have access then later it seemed too foreign I think.

Hope this answers your questions!

[Agate_17 in reply to pdpatient]

Quality of life post diagnosis varies greatly. My best advice is to exercise. I’ve had months when I was not exercising as much as I knew I should have BUT apathy is another common symptom and I blame it on that

[pdpatient in reply to Agate_17]

Thank you very much for your inputs.

[Rebtar]

Congratulations. A brave decision. I see my MDS in January, to discuss current and future options. 11 years since D.

[LagLag37 in reply to Rebtar]

My diagnosis was almost 20 yrs to the day.

[LagLag37 in reply to Rebtar]

Ask if you are a good candidate which is having been on meds for at least 4 yrs & C/L is still working for you just not as long.

[LagLag37 in reply to Rebtar]

Another thing, I don’t remember if you are going to a movement disorder specialist?

[Rebtar in reply to LagLag37]

Yes, UCSF.

[LagLag37 in reply to Rebtar]

MDS - duh!

[Agate_17 in reply to LagLag37]

The closest Movement Specialist to my home is 900 miles away. Whether I drive east, west, or south

[JerryinSATX]

Congrats on making the decision and following through. I had DBS surgery in early November 2024 (2 surgeries about 5 days apart). The leads were placed first the implant placed next. I just went for my first programming December 20th @ 2pm. I had to be off my meds for 12 hours before and that was tough. When my MDS switched on the stimulator, it was like I was a new person who had control of their body. I had to contact the Medtronic tech as my controller needed to be reset. Once that was done I have a window in which I can turn the stimulation up or down up to .3 units. I had been taking 3 Rytary 145mg every 5 hours and now take 2 tablets every 5 hours. I slept through my 1am dose last night with no issues. I am hoping to reduce my dose to 1 tablet every 5 hours.

Good luck,

Gerald

[LagLag37 in reply to JerryinSATX]

They did my stimulater at the same time because my surgeon would be on vacations and it would have been on Christmas Eve. I was so happy. I got it all done in one sweep.

[Leslim in reply to LagLag37]

May I know what was the left setting n right settings.. I still have to take 1/2 madopar 125 mg every 3 hrly from 7am till 10 pm at night. For the 1am n 4am dose, i m taking 1/4 in order to sleep.

[LagLag37 in reply to Leslim]

They haven’t started programming yet.

[Juliegrace in reply to Leslim]

I think everyone will have different settings and comparing them is futile and meaningless, just like meds.

[Agate_17 in reply to JerryinSATX]

Very encouraging story !!!

I pray that I have equally successful outcome.

[Sherry1960]

So happy for you! I had my DBS surgery in June 2023 after several years of painful dystonia in my feet. It was a huge blessing to have that alleviated!

[Coling]

glad to hear that it worked for you, what specifically has improved and what did you experience when you said you were going downhill? Many thanks

[LagLag37 in reply to Coling]

I just felt more tired and stiff. My tremors were getting worse, my “on” time was a lot less. So I just felt like I needed to do something or I wasn’t going to be able to get around without assistance because I was starting to become slower and slower. 🥊

[Agate_17 in reply to LagLag37]

Same situation for me

[Coling]

thanks for that I understand glad it had a positive effect

[LagLag37]

Me too! I hope it lasts for a long time. I’m 67 so I still have some years left! 🥊

[LagLag37]

Today is the 26th of December and things are still going well. This must be my “honeymoon “ period. So far, I take meds and they start working about 20 minutes later and I take them every 3 - 4 hrs. right before my meds are due. Seems so easy. 🥊😊

[Farooqji]

What type of battery is being used in the device? What's it's charging frequency

[LagLag37 in reply to Farooqji]

The only thing I know at this point is that it’s a Boston Scientific rechargeable. I don’t go for programming until January 16.

[LagLag37]

So far so good !! 🥊🙏😊