My experience with DBS (Deep Brain Stimulation) Surgery

[JeffroC]

First, a little about me.

I am 47 years old and was diagnosed early onset PD at 35 or so. I grew up on a farm in a small town in central FL. I played sports my whole life. Baseball, Wrestling, Softball, and even a little football. I married my high school sweetheart, have a great job, and two sons that are fantastic….Life was great!

Then one day at work, a coworker noticed my laptop was shaking. I thought nothing of it. Then over the next year or so, I noticed that my cellphone would vibrate in my pocket like I was getting a call. My cellphone was not even in my pocket…Odd right? Then while playing golf I noticed my hand starting to tremor a little. At that point I decided to go see a DR

The first neurologist I went to brushed it off as essential tremor. In fact, he said if I "had a few drinks, it will go away. That is how I would know it is just ET” Of course my response was "If I have a few drinks and my tremor goes away....I am an alcoholic!" He did not appreciate my humor.... And for sure, I went out and got drunk. Guess what, I was just a shaky drunk. I even tried CBD oil and smoking a joint. again...no luck. Fun, but no luck.

My main symptom at this point was a mild tremor. It was annoying but manageable. It really wasn't affecting my day to day life all that much. In-fact I tried different meds from my DR with little or no change. I tried Azilect, Neupro, Sinemet but the symptoms were so minor and came and went so often that I couldn't tell if the meds worked or not. Then for about 5 years or so I left my condition untreated because I didn’t like the side effects and from what I understood, Sinemet would be less effective long term.

Fast forward to recent years. My tremor has gotten much worse. Sinemet is my main medication and for a while it was working ok. Then my “on” times got shorter and shorter. It was now difficult to carry a plate of food, or a drink. Going from the kitchen to the dining room table, I would have to make a few trips holding everything tightly with both hands. Sometimes squeezing it against my body so I don’t spill or drop whatever I am carrying. I have a noticeable “limp” and at the end of the day I am literally exhausted from the tremors and “dragging” my leg behind me all day. My only relief was while I was sleeping, and even then, if I woke up in the middle of the night, good luck getting back to sleep because I was off meds and shaking like crazy.

My Neurologist mention DBS (Deep Brain Stimulation) Surgery as an option, so I looked into it. DBS seemed extreme to me and actually it seemed barbaric as well. Screwing that think into my head and drilling a hole into my skull?? No thanks! I will just shake my drinks up a while longer.

In 2019 it got so bad that it was getting very difficult to do my job. I am in IT, I travel a lot and configure Servers, Storage, Networks and virtualization. Luckily, my cognitive abilities are still sharp. Not only is it very difficult to walk through the airport, but it is embarrassing. I went from feeling like King ding-a-ling to just some guy with some problem holding up airport security while he fumbles around with his belt. I know, I Know, I shouldn’t wear a belt going through the airport but I suffer from no-ass-at-all disease and must wear a belt.

Now I am ready to give up or take the fight to the next level! I decide to fight! I check with the University of Florida’s Movement Disorder Center to see if I am candidate for DBS.

Apparently, I was a perfect fit! After several tests they thought that they could provide some relief to my tremor and hopefully my gait as well. I sure was hoping so. The way they do the surgery was kind of unique from what I read and saw on YouTube. They do it in three separate surgeries, Which sounded good to me…lets go!

After 6 months of anxiously waiting it was finally my day! I arrived at the hospital the first surgery went smoothly. Everyone was great. I watched the surgery live on TV as they drilled on my skull and exposed my brain. Pretty neat stuff really. The recovery time was short. I played golf the day after I have my stapled removed. 11 days 😊

Then the Covid-19 Pandemic hit!! My next two surgeries had to be postponed. Now I have one inactive wire in my brain just wanting to be hooked up but no way to have this “elective” surgery. If you ask me it was not elective, at this point I was my only hope at a more normal life and the only way I could see keeping my job.

A few months go by and then they reopened hospitals for “elective procedures”……. Wahoo, we are back, lets finish this! The next surgery wasn’t as smooth but it was ok, just a little painful. Typically the most painful part of the surgery is the shot going into the scalp in order to provide pain relief for when they screw in the “halo” The halo is the bracket they attach to your head and then thy lock it down in the operating room so that your head will stay still. Well, this time the halo slipped a little after the pain killing injections but before the screwed it into my head….they proceeded to tighten down the screws into a place that was not numb. All the way into my skull with no pain killers YIKES!!! Worst pain I have ever felt in my life. And I have had stiches, a broken ankle, and two broken arms! My wife was watching this part and I thought she was going to pass out haha…The rest of the surgery went fine, same as the first.

Time to get my battery installed!! Now I have my 3rd procedure, installing the battery, and running the wires. This surgery they put me under for, It was a breeze. I was sore longer afterwards though. After all, I did have stitches in my chest and 20 staples in head.

The results!!!

I left the hospital that day with the doctors best guess as to my DBS settings. It was great, right out of the gate. My right arm and leg which were by far the worst saw about an 85%-90 improvement. My left side probably a 40% improvement. I have since, had an appointment to program the device and we may have a little tweaking to do yet, but as of now, I am virtually tremor free! I mean 90-95% improvement in tremor on both sides now. My gait is much smoother, my dyskinesia is gone! My voice is still a little weak and my balance seems to be the same. I am no longer exhausted ant the end of the day. Once my scars heal up, I doubt anyone would even notice that I have PD! My symptoms have regressed I am guessing 10 or so years or more. I am truly amazed by this and if you asked me if it was worth it?...Hell yes! I would do it again in a minute.

[lenamm]

Thank you for sharing! I had a FUS lesioning surgery last year on one side of my brain with similar results - trying to get side two but have to wait for borders to open (I go to Switzerland). Glad COVID didn't stop you for too long. I understand the waiting!

[JeffroC in reply to lenamm]

Thanks for taking the time to read my story, Good luck in Switzerland

[Kia17]

Thank you for sharing your story.

[JeffroC in reply to Kia17]

You're welcome, hope it helps some people decide on doing it or not.

[Gioc]

nice story thanks, just a few questions: did you have a dat scan confirming the PD diagnosis? I tell you this because the basis of how you described your PD, mainly tremor without other symptoms, in my opinion I would really think of an essential tremor.Have you ever taken a test, if so how many points did you score? Do you still take the simenet after the operation? Thank you

[JeffroC in reply to Gioc]

hi, no i was never offered a dat scan. I was diagnosed by 3 diff neurologist though. I have primarily a resting tremor and gait issues. When i do something with my left hand my right hand will go bananas. i take 1 sinemet 3 times daily, when i remember its easy to forget now .

[Gioc in reply to JeffroC]

honestly it leaves me very perplexed that they did a DBS without first doing a dat scan and test given the symptoms you report. Here they don't work like that.

Simenet has various dosages, do you know that?

don't go wrong taking medicines, it could harm you. 😀

[JeffroC in reply to Gioc]

I was taking 25/100 2.5 pills 3 times daily. now 1 pill 3 times daily

[Gioc in reply to JeffroC]

Be careful not to make a mistake, all Pwps know that the simenet cannot be suspended suddenly!

[JeffroC in reply to Gioc]

Yes, thanks for your concern. I have DR approval for the lower dosage and it is working great

[Gioc in reply to JeffroC]

Of course, but if you forget... LOL

[JeffroC in reply to Gioc]

I am pretty forgetful...haha ..I will set an alexa reminder

[Gioc in reply to JeffroC]

If you don't take the pills, do you get some tremor and dyskinesia or zero symptoms?

[JeffroC in reply to Gioc]

Zero symptoms which is why it is so easy to forget.

[Gioc in reply to JeffroC]

ok let's see if I understand: on the basis of the tremor you have been diagnosed with a PD without DATSCAN from three different neuro, despite Ldopa having had little effect from the beginning.

You don't have a test but after ten years you go to the university of Florida and they accept you for a DBS, without Dat Scan.

You heal all symptoms completely, but your doctor still prescribes a good dose of LDopa that you take when you remember and don't have dyskinesia.

An incredible story considering that DBS does not reduce brain cell injury from PD.

[JeffroC in reply to Gioc]

Well to be clear, they didn't heal anything. The DBS has helped tremendously with the symptoms. Not 100% but very close. I still have vocal issues and my balance is not great..dbs didn't affect those. But my tremor is pretty severe and my gait as well... These things were helped with DBS 90-95% but not healed. If I turn the device off,I am quickly reminded of that.i will start to tremor immediately. I am thinking that over here in the US. We don't do dat scans very often. I was never offered one. They have reduced my medication quite a bit. But told me that must people will still need some meds.

[Park4me in reply to Gioc]

Just to let you know, day scans aren’t always accurate.

[MBAnderson]

Thank you for sharing all the details. So glad for you.

(I can relate about the Novocain shot in the halo. No fun. But the results are clearly worth it.)

[Todd-pw]

thanks for this i feel better knowing the positives of DBS

[JeffroC in reply to Todd-pw]

Good luck,I hope you feel better soon and they figure your situation out.

[jeeves19]

Good post. Thanks 🙏

[HowieR]

Thx for sharing....my story was very similar to yours and am close in age (49) to you. I was diagnosed at 44 but was probably exhibiting slight symptoms about 5 years before that and was also misdiagnosed with essential tremor, I also had a neurologist prescribe a couple glasses of wine at night to calm my tremor...lol

My symptoms got pretty awful and I too made the decision to have DBS surgery, i also at first received care from a movement disorder specialist at UF in gainesville. However I decided to have my surgery done at the Mayo Clinic in Jacksonville, Fl where I also happen to reside.

My surgery was on March 4th of this year(2020) and the procedure was done all in one day and I had to stay overnight for one evening. Thank goodness that the Covid mess still had not affected surgeries at that time, although I did have a programming appointment delayed for 6 weeks after that. My results were also very dramatic, my tremor was 95% resolved and my gait was night and day difference. I can not agree more that this surgery has been life changing and only wished that i had gotten it done sooner. I would tell anyone that has been properly diagnosed and is struggling with medications to not delay in having this done. Once you get past the whole harrowing thought of undergoing brain surgery it is actually a very safe and well practiced procedure...I was blessed that my neurosurgeon had done at least a thousand of these procedures.

My question for you Jeff is this one: do you recall the name of the manufacture of the DBS device they implanted in your procedure? Also did you have both sides implanted??

[JeffroC in reply to HowieR]

That's wm awesome news Howie! Let's hope our results last I'm not sure who made the leads but the have 4 contact points and are omni directional. Boston scientific made the stimulator, generator, battery, whatever you want to call it. And the remote. I assume the leeds are made by them as well, but not 100% sure. Woops,I almost forgot... Yes both sides were done.

[HowieR in reply to JeffroC]

Thx for reply...my device is also Boston Scientific and multi directional. Had some trouble with programming at first but now have the Boston Scientific Rep involved and made a huge difference!

[tjsmith52 in reply to HowieR]

Hey Howie...Did you have an STN implant as well?

[HowieR in reply to tjsmith52]

Left side GPI

[Marcomando]

Thanks for sharing - and well written too! Glad it’s gone so well and best of luck for the future

[JeffroC in reply to Marcomando]

Thanks for reading

[pdwife41yrs]

Wow!

Thank you so much for sharing, God bless you!

Your experience will definitely help my husband on deciding whether to do DBS or not.

I’m really happy for you, good luck and enjoy playing golf again!

[WinnieThePoo]

Great post. Thanks for sharing. Albeit I'm hoping if I ever have to go the brain surgery route to be luckier with the pain management. Still hoping for other alternatives, but good to be aware of all the options. I have read more than a few who have benefitted long term from their DBS. Hope yours continues to deliver for you.

[JeffroC in reply to WinnieThePoo]

Thanks for reading Winnie

[BUSHPILOTS]

Fantastic post. Love the detail. This is very informative. I am so happy you are doing so well 😊

[JeffroC in reply to BUSHPILOTS]

Thanks bushpilots!

[BUSHPILOTS in reply to JeffroC]

Was it stn or gpi

[JeffroC in reply to BUSHPILOTS]

STN

[Hidden]

Hi JeffroC ,

Me diagnosed at 38, DBS at 45, electrodes/leads (both sides) put in in September last year, 1month later second surgery to fit and connect the device. Minor infection.

1 month later feeling great back to the hospital, neurologist changed settings, changed meds, next day by mid afternoon I was struggling.

Bunch of things happening, infection back, going crazy, manic / apathetic / suicidal, Jan back to hospital admitted, device and connecting cable taken out due to infection, 2/3 weeks in hospital, 5weeks IV antibiotics, COVID-19, May, device back in and system setup over several days, 7weeks later back working full-time, prior to September I was working full-time.

To be honest I hate the DBS, yes it is helping me physically but after what it did to me mentally I regret having the procedure in someways, they do not know what caused the problems but it nearly had me killing myself, it may yet.

[Xenos in reply to Hidden]

Thank you so much for your detailed story. It takes courage to tell and it's as informative as the positive experiences.

Wishing you the best.

[Hidden in reply to Xenos]

Thanks.

The DBS is helping, I've had a rough start with it, hopefully things will improve.

The good thing is we now know what to watch for, my good lady is amazing.

[JeffroC in reply to Hidden]

That sucks! I understand the problem with infection and that is one of my fears too. My remote has 4 different programs to choose from as well as the ability to change amplitude in said programs. So we find a few settings that work best. Does yours have that option? I really hope the infection stays away and and they will it the programming for you. Hang in there!

[Hidden in reply to JeffroC]

I seem to be very sensitive to voltage, due for reassessment soon, the system has the ability to have voltage, freq/amplitude altered at the different points. But due to the problems we are taking it carefully. One point cannot be used as it has negative effects.

[JeffroC in reply to Hidden]

Hang in there and good luck!

[JeanieBeanie]

Lovely story. My husband had it done here in UK almost 15 years ago. It affected his walking unfortunately but his tremor went. Then about 9 years ago his PD moved into the other side of his body. Luckily both sides of his brain had an implant but it has never helped the tremor as much on his left side. We have excellent nurses at the hospital and are hoping to see them as soon as things get back to normal. Most people find a great deal of improvement with DBS. Giocas is right. Very important to get correct dose of meds.

[JeffroC in reply to JeanieBeanie]

Thanks for sharing. I think that was brilliant to get both sides done early!

[Hidden]

Thanks for sharing your story in such a lovely way. My neurologist has suggested DBS but I am reluctant because my problems are predominantly non tremor based.

[Parkie- in reply to Hidden]

4 months ago

This seems to suggest that DBS actually works better for akinetic rigid pd...:

ncbi.nlm.nih.gov/pmc/articl...

Parkinson’s Disease Motor Subtypes Show Different Responses to Long-Term Subthalamic Nucleus Stimulation

"Results: After 4.9 years, STN DBS produced significant improvement in the UPDRS III total scores and subscores of tremor, rigidity, and bradykinesia in the “Off” medication state in the ART (akinetic rigid type) group, less improvement in the MT (mixed type) group, and the least improvement in the TDT (tremor dominant type) group."

[Hidden in reply to Parkie-]

Thanks for this. Makes me more opened to reconsidering DBS

[JeffroC in reply to Hidden]

What are your symptoms? From what I heard, if the sinemet helps, but the window of relief is small, then DBS may help a lot.

[Hidden in reply to JeffroC]

Main symptoms include freezing, difficulty initiating walking, dyskinesia with head shaking, some speech and swallowing problems. Lately I have also had falls when turning my head to talk to someone while moving one direction. I take Stalevo which lasts 3 to 31/2 hrs

[JeffroC in reply to Hidden]

It's worth discussing with the doctors.. It may help a lot it really helped my rigidity and dyskinesia

[Hidden in reply to JeffroC]

Thanks

[Jebbie in reply to Hidden]

I had no tremor, but severe gait issues. Had DBS in January. At first there was no improvement. But after my adjustment I was able to walk to the bathroom unassisted in the middle of the night. That was huge for me. It is not just for tremors! PS I can also swim again! My PD did not go away, but it is better. Any improvement in quality of life gives me more happy memories with my grandchildren!

[Hidden in reply to Jebbie]

Thanks for sharing with me and I am happy you had good results. I haven't seen my grandchild for ages because of Covid but being able to play with him would be my main reason to have DBS

[blazingsaddles]

Thank you so much! Im starting 'the procedure' August 7 at one of the top hospitals in the West in Denver. Ive heard many good things about DBS and I appreciate the encouragement. Happy for you! Paul

[JeffroC in reply to blazingsaddles]

How is it going after the dbs Paul?

[JeffroC]

Good luck Paul! Did you have a dat scan to confirm PD? Gioc has asked me several times about it and i am thinking in the US it typically isn't done.

[BlueHawaii]

All of you that have had such good results are very lucky. I have met people that the DBS surgery did not help. I would like to have it someday, but fearful of going through the whole thing only to be one of the people it doesn't help.

I have also been wondering about cost. Would you mind sharing that information? Is there help available for it?

[pdpatient]

Very well written, Jeff. I think that you should write a book.

One question though. What happens if you lose or forget your remote and you are traveling or doing something like trekking?

[JeffroC in reply to pdpatient]

Thanks If i forget my remote no big deal, my DBS will still function at the program it was set to. I don't take it with me when I play golf.

[Jocee]

Thank you for sharing your story. I am very happy for you.

[JeffroC in reply to Jocee]

Thanks Jocee

[ion_ion]

Today I learned the answer to something was puzzling me for few years: the vibrating phone in the pocket when it actually was on the desk.

[JeffroC in reply to ion_ion]

Crazy huh?? I wonder why it does that..

[ConnieD]

So happy for you Jeff! I was wondering if you had much dyskinesia prior to surgery, do they give you any expectations as to how long it lasts, and last are you even slightly sedated during surgery? Thank you 😊

[JeffroC in reply to ConnieD]

the week or 2 before my final surgery, my dyskinesia was getting very bad in my right leg. They said it was from being over medicated. Since the surgery I have lowered my doasages and it is gone. I had local injections for pain in my head. but i am sure they could give you something to calm the nerves if needed.

[ConnieD in reply to JeffroC]

Thank you for your response, I’m not as young as you I’m 54 but even at my age I would hope any positive result would last for some time. Any indication from your doctors as to how long it may last?

[JeffroC in reply to ConnieD]

It's hard to get good info on that.. But from what I gather, the symptoms will be helped for several years.

[ConnieD in reply to JeffroC]

Good to know, thank you!!!

[Gioc in reply to JeffroC]

Hi Jeff,

how your dyskinesia has been over the last ten years and how it's improved since the dbs, if I may ask,

[JeffroC in reply to Gioc]

It was my newest symptom and was getting very bad with my right leg. We think it was due to meds... It immediately stopped completely.

[Gioc in reply to JeffroC]

How many times a day and night have you had it?

[JeffroC in reply to Gioc]

My right leg had started moving all over the place unless I was very relaxed.. Almost all day every day.. Unless I was sleeping.. It was driving me crazy.

[Gioc in reply to JeffroC]

It lasted all day every day..., wow! a really bad dyskinesia.

[JeffroC]

Yeah, the last week before surgery was the worst

[JeffroC]

I'm thinking it could have been the inactive leeds..

[Gioc in reply to JeffroC]

If you were able to play golf and the battery wasn't even attached it means that it works well. 😂

But at the University of Florida they know, you should inform them of the successes you wrote here.

[JeffroC in reply to Gioc]

I played golf and the "remote" wasn't with me. Is that what you mean? the battery connected has a help on my golf game but before it was connected I still played golf but it was very difficult. At the end of the round i was exhausted.

[Gioc in reply to JeffroC]

how do you play golf with the dyskinesia you described. I wouldn't be able to make a hole.

[JeffroC in reply to Gioc]

It was just annoying while I walked... It was worse while a say still or later down. But I'm my leg was super tired after playing.

[Gioc in reply to JeffroC]

Jeff, who's your neurosurgeon, the one who did the first surgery?

[Janx]

Thanks for sharing that. It was most interesting to read. I suffer with the tremor and the drugs dont seem to work as I would like to be tremor free. i have tried numerous other drugs but the make me feel spaced out. Thanks J

[JeffroC in reply to Janx]

I know what you mean ....C/L made me feel spaced out for a while too....kind of like i was moving and thinking in slow motion.

[Bgktoby]

I had DBS Surgery in February 2020. (Barrows, Phoenix, Medtronics, gpi) Before I was freezing, shuffling, unsteady, and frequently in need of a wheelchair. Nonmotor symptoms included sleep disruption, severe foot cramps, and incontinence.

Immediately after the surgery, I felt normal again. I experienced a honeymoon period that lasted about one month. Then I began to regress. Working on programming.

But I have no regrets. I am much better off than before surgery. No freezing, no wheelchair, less cramping and fewer bladder control issues. Still taking c/l.

[JeffroC in reply to Bgktoby]

That is awesome! i hope they get the programs right on point asap