Rapid decline after DBS?

[Formydad2014]

Good morning,

My dad had DBS just over two weeks ago now. He had the leads placed two weeks ago this past Friday, and then the battery placed this past Wednesday.

He has struggled mightily since the surgery. He seemed to have been in rapid decline since approximately April, and now we are at wits end as far as to where to go from here. In April/May he was getting up and letting the dog out, getting coffee started, breakfast for himself, etc.

Now, he cannot even sit up in bed by himself or get himself up to a sitting position to use the handheld urinal during the night. He has freezing and rigidity episodes which last hours a day, whereas before the surgery they tended to come on in the late afternoon/early evening. His attitude has changed completely as well. Prior to surgery, he was more...determined I would say. Now, it seems as if he's given up and has said quite a few times over the past couple of weeks "I can't do this, I can't live like this." We have removed the guns from the house so he doesn't have access to those.

We've begun turning up the voltage on the device, but that doesn't seem to do anything. We weren't given any specific instructions as to how to proceed (apart from the mechanics of using the system) other than "turn up the generator rather than give more pills." We weren't told how much to turn it up at one time, how much to go up in one day, etc.

I've tried to tell him to give the DBS time, explain that perhaps the surgery and all the anesthesia and pain meds had a negative effect on his symptoms and he needs to wait until he's recovered from surgery to really see what the DBS will be like. But I feel like I'm blowing smoke - I'm calling a home care agency to hire a caregiver, for at least the nights now. My mom can't hear him when he calls for her, and hurts herself trying to get him to a sitting position or up out of a chair.

We know that the DBS was not a cure, won't slow progression, etc., but we had at least hoped for a few more years where his QOL (and my mom's) would be improved. Is there a light at the end of this tunnel, or is this the beginning of "the end"?

[lmbanni]

Hello nothing about this sounds right to me. My husband had DBS surgery also and everything I've ever read says no one has their DBS turned on right after surgery. They make you wait after surgery about a month to have it turned on. The reason is swelling of the brain after surgery. You must not have understood the doctors. Do you talk to them or is this info given to you by your dad? If so you or your mother need to start going with your father to his appointments. He needs to be on his medication the way the doctor prescribed it. Call the doctor immediately and find out what that is! If your dad doesn't want this, do it anyway!

God Bless all of you!!

[ken_phd in reply to lmbanni]

Something else is going on. You can turn off the DBS in your doctor's office and return (almost immediately) to the pre-operative conditions. .There should be a significant increase in tremors and rigidity. I had the DBS procedure in April 2013 with positive results. One of the things the surgeons are supposed to do is check joint rigidity during the implant/electrical excitation process. This gives them feedback that the electrodes are positioned correctly. The operation is not concluded until the rigidity is significantly lessened.

I recommend a frank discussion with the surgeon who performed the procedure.

[LauraL]

I too had DBS and was not "turned on" until my battery was implanted 2 weeks later. My system is 4 years old now, but it is not one that I can regulate myself. If you have not been trained I think I would contact the doctor that implanted your device or the manufacturer. I have had to have my setting adjusted maybe once a year but other than that, it is nothing short of a miracle for me. You might want to check with the doctor to see if maybe the leads could be adjusted. Don't give up!

[soup]

Please go back to the team that did the implantation and get everything checked over.

[anneks]

My husband had balance and gait symptoms worsen after DBS. He has been insistant with doctors to get the programming right., but the problems started before they turned on the battery. He is still motivated to get as much exercise as he can. My advice is find a doctor who will work with his programming. However, every case is different, and DBS doesn't help everyone. My husband wishes he had not undergone the surgery, although I see many of his symptoms improved, including his cognitive function. Try to get him to take things one day at a time.

[Formydad2014]

Thanks everyone.

I was with them the day he had the electrodes implanted, and spoke to the surgeon (he had the "asleep" surgery done in the MRI suite), who was very pleased with the lead placement. My dad isn't going to these appointments alone, even before the DBS, either my mom or both my mom and I go with him.

I spoke to his program manager the day after he had the battery implanted and turned on, and she told us to up the voltage as opposed to giving him additional Sinemet. Please note that the "voltage" I'm referring to is different than "programming". We do NOT have the ability to program the device, only to change the voltage settings once his programmer has done her work with the programming. She did tell us that she did not set him up with different modes at this point, and that she programmed it to focus on his lower body for now, as that is where most of his rigidity issues occur.

I am curious because if you watch videos of people who have DBS, they turn it off and their symptoms immediately return, and then they switch it on and they go away. It doesn't seem to be instantaneous for my dad. We have turned it up and he mentioned feeling some slight tingling in his lower legs and feet, but it's not like I turn it up and all of a sudden he can walk across the room and his rigidity is gone. Does the DBS take longer to work for those without tremors?

[michaela13]

I'd also like to know does the DBS really help people who don't have resting tremor? How does it help them?

[mktbob55]

Where do you live? the surgeon has no part of the programming process so if you're talking to the surgeon. He's the wrong person. Who does the programming? It should be his neurologists or assistant. My team has 15 years of DBS experience and often does rescue reprogramming for DBS programming failures. Let me know if you want their contact info.

[Formydad2014]

We live in the SF Bay Area. He is going to the PADRECC at the SFVA, which works with UCSF. It is the program manager at the PADRECC that does the programming. We haven't seen the surgeon since he came out of surgery to say that everything went fine, and then again when he visited in the hospital before discharge. I got the impression that his part of the job was over, unless at some point they began to suspect a problem with the leads in terms of placement.

His programmer is very experienced, so I am comfortable working with her since it's so early. We weren't prepared for this huge backslide after surgery.

mktbob55 - did you have an immediate response to the DBS? Were your main symptoms tremor or more rigidity and bradykinesia?

I am highly suspect of part of the issue being too much Sinemet, as I mentioned, as his mood is noticeably different when he's "on" and over-medicated as opposed to just "on" and not overmedicated. He seems depressed and apathetic when he has taken just the right amount and is moving around great. It's only when he's flailing around with dyskinesia that he seems to be motivated to do much of anything. Ugh.

[lmbanni]

It sounds like you are doing everything right. I think you are right in thinking the excessive use of the Sinemet has made this happen to him. Didn't you ask if the DBS helped with rigidity and bradykinesia? My husband's doctor changes his settings to help him with the leg dragging when he walks and it does make him walk better. He gets bradykinesia if he takes too much Sinemet. The doctor told him the DBS will not help stop that. I think your dad needs an antidepressant or to see a doctor for depression. It also is strange to me that when he is flailing with the dyskinesia he is more motivated to do things. My husband hates the feeling of dyskinesia. That is what is sooo strange about this disease, everyone reacts differently to the symptoms and problems it causes!!

God bless you and your family.

[Formydad2014]

Well, we did have a reprogramming session, and Imbanni, the reprogramming they did on my dad also helped the walking. It was amazing actually - he went in off meds and had to be wheeled in in his wheelchair and then an hour and a half later, before any meds had kicked in, he walked out pushing his wheelchair instead of riding in it.

We had the talk with the programmer re: too much Sinemet, and she explained to him that stiffness and pain can come with too MUCH Sinemet as well as feelings from the Parkinsons, so he needs to stop over-medicating, because he's sabotaging himself. He wasn't thrilled, but seemed more receptive, especially when she told him that he was making OUR lives difficult as well, with the behavior that comes with the overmedication. They did recommend an anti-depressant, so his neuro is prescribing one to start on, and we'll see how that goes. Fortunately, the programmer told him that sometimes it takes a month or so to work, and he may not like the first one he tries, so we may need to try another one. He doesn't listen to my mom or I when we say that... (sigh)...

[Jash]

I agree with the others---the surgery/neuro team has to make this right

[AlabamaDoc]

My first question would be is the DBS unit functioning properly. Obviously, the symptoms are not improved but is the DBS delivering the expected voltages to the deep brain region. If not, then the problem may be a defective DBS unit, electrodes, or improper electrode placement. Only your neurologist or neurosurgeon can answer these questions.

Next, if the unit can be verified to be working properly, then the next step would be to tweak the unit to get the optimal outcome. During this tweaking process, I would recommend remaining on the same medications and dosages that you were taking prior to the DBS. If you are reducing your meds while changing the DBS settings, you are manipulating 2 variables at the same time. By staying on your previous medication dosage, the DBS can be adjusted to see what (if any) improvement you get. The process of tweaking and changing dosages may take several months to get it just right.

After I had my DBS turned on, I experienced several depression despite a good improvement in my symptoms. The depression was due to an sudden drop in the dosages of my sinemet. This condition is called dopamine withdrawal syndrome. I had to go back to my pre-DBS sinemet levels and gradually reduce the dosages.

I hope you can find the right balance between the DBS and medications to give you the best results. May God bless you during this difficult process.