Deep Brain Stimulation Therapy

[Kingsdaughter1]

I am seriously considering having DBS but am wondering if there are others who have successfully had this surgery to alleviate pain in the neck, shoulders, upper back & lower back. Please share any experiences with this as well as anything else you may have found that works. I am desperate. Thank you.

[jeeves19]

it’s good, helpful. The programming team ought to be able to direct it where you need it the most.

[Kingsdaughter1 in reply to jeeves19]

Thanks Jeeves 19 . I have heard good things about how it helps tremor and some other symptoms. My chief symptom of complaint is the terrible pain that I get from rigidity. It used to be in my lower back but a doctor put me on a narcotic called Nucynta that has miraculously taken that pain away completely however, the pain is now in my lower back. Just needed to hear some success stories before I get my skull drilled.

[jeeves19 in reply to Kingsdaughter1]

It’s not a perfect solution and can be frustrating at times but if you turn it off you realise what a benefit it is. It removes about 50% of symptoms and then the drugs make up the short fall. And remember we’re in 2024, not 1724 😂: mistakes are rare with brain surgery these days.

[healthabc]

botox

[gomelgo in reply to healthabc]

What success have you had with it?

[MarionP]

Jeeves's experience is the one where I have countered some otherwise unconvinced fear about DBS. I think if I were to seriously consider it I would certainly want specific access to his actual team so that my team could talk with him about what they did.

[kaypeeoh]

Like MP I'd want assurances before going under. For now the botox every three months is enough. The neuro has never mentioned DBS. And she was on TV discussing the process. She mentioned DBS as treatment for essential tremor.

[Kingsdaughter1 in reply to kaypeeoh]

I have maxed out the number of med pills that I can take. When I have tried to take more, the side effects and dyskinesias are horrible . But without doing anything, the pain in my neck, head, shoulders & upper back is unbearable. I tried Botox a couple years ago and not only did it not help the pain but I was unable to lift my head up. I have seen 5 neurologists, two of whom were movement disorder specialists . The last one recommended seeing a neurosurgeon about DBS. I have had the MRI and CT scans and passed the neuropysch eval. The only problem was that I was very underweight and was told I needed to get to 100 lbs which i have accomplished with increased eating and TPN. However, I am looking for others who suffered pain as I do that the DBS improved.

[Juliegrace in reply to Kingsdaughter1]

I take it you meant 10 lbs not 100.

[Kingsdaughter1 in reply to Juliegrace]

My weight had dropped to 81 lbs and I was told that I had to reach 100 lbs in order to have the surgery.

[luckyrock in reply to Kingsdaughter1]

I had DBS a year ago. I am pleased with decreased dyskinesia, less off times with smoother transition between meds. This was important to me as I was developing increasing anxiety at off times. Added benefit is that I’ve gained 10 pounds and look and feel healthier but have had to stop eating anything I feel like. My sleep is somewhat better. I have not noticed a decrease in pain but have not tried cortisone or Botox, just PT and exercise. I will say that I’m glad I did it now, at 69, as the anesthesia for the lead placement wiped me out for a week. Make sure you are very comfortable with your team, both their bedside manner and their expertise!

[Kitefli]

I am 75yo and had DBS from Boston Scientific since Oct 2022. I have very positive experience with the device and surgery. My tremor from both hands is almost gone and I am able to swim at a speed that I used to before PD. I have to be thankful to my neurologist's skill to program it appropriately so not side effects. He had to tweak it for more than six months to get it right; so that my Brady Kin was minimal to swim efficiently. Yes, you do need a goo Movement Disorder Specialist who is experienced with programming.

Before DBS, none of the medications help me with my tremor.

[TeamPG]

Have you looked into focused ultrasound, a.k.a. FUS? Many people have had successful results with different variations of it. There’s a Facebook page dedicated to it. If it doesn’t work for whatever reason, which seems to be relatively rare, you can still do DBS later. Some people have done it in conjunction with DBS. You can’t do DBS first though.

[Kingsdaughter1 in reply to TeamPG]

I have tried to lol into it but know very little about it. I did just submit to join the FB page. Thank you 0

[sutensera]

I am in same boat..planning DBS in mid July. I guess you have to go through a Dopamine Screening Test before they consider you for DBS. I am convinced from what (multiple) doctors has said about DBS (to me):

1. Your ON/OFF periods would stop or become much lighter in intensity.

2. Your L/C medicine will reduce substantially. The dosage you are taking now, you'll probably take after 10-15 years.

3. They claim 50%-70% improvement in body movements (stiffness or tremors, sluggishness in movements bradykinesia, uncontrolled movements dyskinesia).

With terrible side effects of lavidopa/carbidopa, just the point 2 is enough for me to go thru DBS.

Hope this helps

[b-erec]

I wonder whether DBS effect is long lasting?

[Kingsdaughter1 in reply to b-erec]

I had read that successful DBS surgeries are giving patients 10-15 years of greatly improved life quality these days.