DBS doesn't seem to work?

[koshca]

I had DBS surgery 2 month ago and had 2 programming sessions, but still far from feeling any better. I can say, My tremors and distonia on presurgery status, taking much more medication than before and still having bad days (mostly of them). Does it mean failure of DBS? I don't know what to do. I feel even worse than it was before surgery. Any advice? Any thoughts?

[MBAnderson]

Have you made your level of dissatisfaction perfectly clear to the neurosurgeon and if so, what does he/she say about it?

I would not pronounce it a failure yet.

[MBAnderson in reply to MBAnderson]

I have heard of some DBS cases taking many programming sessions over the course of a few months to get right.

I believe if it were me I would insist with the neurosurgeon that he/she pre-schedule a meeting with me every 3 or 4 days until the programming got right.

You've been through an ordeal having DBS. Don't give up on it yet.

[koshca in reply to MBAnderson]

Thank you! But what he can do if it doesn,t work? He sad to me right after surgery,at hospital, "you look good" that's it, no more visits.

[koshca in reply to MBAnderson]

I didn't see him after surgery. he never come to see my wound, nurse took care of it.

[MBAnderson in reply to koshca]

I don't think he gets to perform surgery, get paid for it and then abandon the patient, declining to ensure that the surgery is performing as it should.

Again, were it me, I would insist that he meet with me and I would discuss with him explicitly whether not he intends to do the follow through to ensure the procedure performs.

There may be something going on here that I'm not aware of, but I would be pretty concerned about his declining to meet you and your being 2 months out without results.

[rhyspeace12]

It sounds outrageous to me that you are having no follow ups. Members in our support group were going up once a month to Stanford to get the devise adjusted.

[koshca in reply to rhyspeace12]

I have only appointments with programming nurse, should it be with surgeon too? They didn't tell me. As for wound, nurse treated me. On my programming I felt nothing. Now I feel very bad. As I didn't have any surgery

[rhyspeace12 in reply to koshca]

My husband who had Parkinson's when he died, didn't have DBS. Several people in the group did and most were satisfied. But ,one friend had it and went month after month to have it adjusted, and generally, she felt worse and worse. Then it was thought by the specialists, that since where one has it, is according to if you are right or left handed, hers didn't work because she had a relative who was ambidextrous and must have inherited something from that. It should affect you in some way. It sounds like it isn't even turned on!

I don't know who sees you after the surgery for check ups, but i would assume it is the surgeon. He must have made a lot of money somewhere for treating you.

Why don't you look up Stanford University and their clinic. Maybe you could get some information. If you can't find a way to reach them, i can ask around for it. I know you aren't looking to go somewhere new, but you can probably get a lot of information on the internet.

[koshca in reply to rhyspeace12]

Thank you for your answer. I live in LA, there are many centers around, but I am really lost. Can I change my care team? Programming nurse? She trying to assure me that I am better now, after surgery. I am not!!

[NellieH in reply to koshca]

I live in Canada and am not sure if this would work where you are, but I would tell the surgeon I'll be getting in touch with the regulatory college of he doesn't do proper follow up. Or contact the HMO / ACO / insurance or other group he is part of to complain about his treatment.

[koshca in reply to NellieH]

But it will give me nothing. I need to feel better, it should be about me, I feel terrible.

[quilting46 in reply to koshca]

The surgeon is not responsible for how the DBS works. that is the responsibility of the neurologist you have been working with. It is the neurologist who made the adjustments during the surgery. I do not know if you were awake during the surgery, but when I had the surgery after the neurosurgeon had inserted the wires in my brain the neurologist came into the operating room and manipulated the my arms and legs. He could tell the placement of the wires by listening to the electrical sounds of my brain. After the battery had been inserted in my upper chest, I met with the neurologist's Physician Assistant who adjusted my battery and taught me how to adjust it myself.

It took several trips to get it right, however, I noticed some improvement right away. Ultimately, I had the the wires to mine brain removed. A year after the surgery I noticed that the wires were exposed because the wound had not healed correctly. I could have had the wires replaced, but it would have meant having my scalp stretched (they determined that my scalp was too tight to accommodate the wires of the DBS).

It is worth noting that DBS works better on PWP who primary symptom is tremor. My primary symptom was my gait. And, of course, there are some people for whom it does not work.

[koshca in reply to quilting46]

Thank you !

I'm tremor dominant, she told me that my tremors "very stabborn".

Surgery was done asleep,, I m 66 y.o.

[NevJ]

Try not to worry about it. The brain can take a while to adjust. Anxiety makes symptoms worse, especially after DBS. I had DBS 18 months ago. It took 6 months before I could feel any benefit, and about a year before I really felt good. Everyone reacts differently and when you hear about people that had instant success it can make your think that yours was not a success, but that doesn’t mean it won’t be. My settings haven’t been adjusted for a year, it just took time for my brain to adjust. Now I’m probably the best I’ve been for 4 or 5 years.

[koshca in reply to NevJ]

Thank you!

[Leslim in reply to NevJ]

Hi Nev, do you still take meds after DBS?

[NevJ in reply to Leslim]

Hi Les, yes, but I’ve cut down on my Sinemet from 7 and a half per day to 5 per day. It took me a year before I could cut down after having DBS, which might not seem that significant but I really wasn’t coping on 7 and a half at the time I went for the operation.

[Aleagles]

My DBS took at least 6 months to settle down. Vital that you get a good PD nurse who knows how to calibrate and sort meds. I found the patience somehow to hang in there and glad I have DBS done. 2 months imho is only just the starting position after a such a massive operation. Stay open.

Best al

[koshca in reply to Aleagles]

Thank you!!

[Jebbie12]

I had DBS 8 months ago, and at 2 months also felt like it hadn't worked for me. I'm still trying to hit the sweet spot on my stimulator, but am getting closer. Your neurologist, hopefully a movement disorder specialist, should be doing your adjustments.

[koshca]

Thank you for hope!

[rhyspeace12]

The answers you received above about it taking time for your body to adjust sound very good. You can ask your insurance to find another opinion on your recovery. A motion specialist is very important to see. You can go online and look up ratings on the doctor who did your surgery. See if anyone else has the same problem. My husband's first neurologist was a horrible, incompetent man. I actually think after reading the other opinions of those who have gone through it, that you will be fine. If not, keep pushing for what you need!

[koshca in reply to rhyspeace12]

Thank you !!

[koshca]

Thank you all wonderful people for bringing hope and peace in mind to me as we all need it so desperately!!! GOD bless all you!

[Jlloy5]

In my experience, after DBS things got worse before they got better. I went through the same stuff and now I'm feeling great 12 months later. Patience, grasshopper. You'll get there.

[koshca in reply to Jlloy5]

Thank you so much !!

[koshca]

Update: mri shows misplaced leads, surgery should be redone.

[rsacdoolittle in reply to koshca]

Koshca, I was hopping around on the site and saw this. Did you have the surgery again?

[koshca in reply to rsacdoolittle]

Yes, I had it redone 2 more times and still no relief. It's still not on optimal position, as my neurologist stated.