Hi Everybody -
Looks like a lot of good people and info on this board and I'm hoping someone can give me some info/feedback!
My Mom (age 74) recently had the Activa Deep Brain Stimulation implants with (what I think) are some unexpected and disappointing results.
A brief history. She's had PD for approx 15+ years. In March 2000 she fell and broke her hip (but was still functioning fine and even driving up until that day).
After the hip fracture her PD symptoms really seemed to escalate. Movement, tremor, regidity, freezing...all seemed to get much worse very quickly during the last 3 years.
She was told by her Nuerologist and the surgeon that she was an "excellent" candidate for the surgery so she decided to go through with it.
She was living independently prior to the surgery although she was having more and more trouble all the time in getting around and we were opting to look at some sort of assisted living arrangement for her in the near future....unless the surgery was a success.
Right after the electrode implants (April 16th) she spent the next 3 days unable to speak and had to have total assistance for everything (in the hospital).
She finally had the batteries placed and on May 12th had her first programming session. The effect that it had on the tremor was quite remarkable...it was virtually elmininated! She's had several more programming sessions since but things don't seem to be going too well (other than the tremor). Some of her rigidity seems to be relieved but she now is not able to stand without assistance and has MAJOR balance problems, particularly when trying to come to a standing position.
Her speech is also so slurred that it's very difficult to understand what she's saying (she never had speech problems before!).
She is basically worse now than before the surgery! She is still in Rehab but the goal was to release back to her own apartment. After seeing how she's moving (or NOT moving in this case) and discussing with the hospital staff they don't feel that she can possibly go back home but are recommending that she be admitted to a permanent nursing facility.
I realize that there are no guarantees with the surgery and it does come with risks....but to take a person from an independent living situation, have them go through a surgery that's supposed to "help" them......and then have to be sent to live in a nursing home seems to be the ultimate disappointment! The procedure is generally touted as "miraculous" and it has definitely had the opposite effect in this case since she's much worse now than before!
Has anyone else seen or heard of similar results? Does anyone think that she will continue to improve in time?
Any info or feedback from anyone would be greatly appreciated!
All The Best -
Laura
I am not the one to tell you what or when this DBS is successful I can see it wasn't .We take a chance it will. I really feel bad for your Mother and you.
I hope that Bruce,who had two DBS's can tell you his version,also Ruth who had the DBS with good results.
Hi Laura, this miraculous cure that so many people descrie, is very upsetting to me. I don't doubt their feelings, but i too was misled by all these feelings. Some desribe their feeling as DBS euphoria. They feel ao much better that they assume everyone else will get the same result.
As you saw, the surgery is very good for trermors and dyskineia. So far, all it has done for me is i no longer have dyskinesia and it rreduced my pd meds by about half. Their haa only been a slight improvemnt in my balance. No effect on ridgity.
Speech is programable and when they were making my adjustment, my speech went from low volume and slurred to stronger, normal speech.
Another facter is the pd is still progressing in all of us who had the surgery.
Somehow, i get the feeling the doctors have given up on your mother, because of her age and condition. Insist on her having more adjustments, and, if necessary, insist she have an mri to make sure the electrodes are in the correct location
Another possbility, is she may need an adjustment in her meds. It is a balancing act on whether to change the DBS settings or adjust the meds.
Your mother should be seeing a MDS (movement disorder specialist. This doctor is a specialized neurologist.
I too have had the DBS/STN surgery. I had it 2 years ago this month when I was 57 years old. I realize I was a lot younger than your mom and that may be the reason that I have had such good results and your mother didn't. But I believe it's more than that.
It sounds as if your mother may not have had the electrodes placed properly or she may not be getting the right programming. I think I would insist on an EXPERIENCED programmer to look at her. You'd be surprised, now that more DBS surgeries are done, at the quality of some of the programmers. Or the doctors are doing it themselves, and they do not want to spend the time it takes to get her programmed correctly.
It's an ongoing thing with the programming. You need multiple sessions. This is a progressive disease, so you need constant adjusments at different intervals of time in each person. Don't give up on your mother. Make sure she has a good programmer and an experienced one and maybe also another MRI to determine if the probes are in the right place.
I have found that the operation has relieved most of my symptoms (but its' different in different people) and that I could cut back on most of my medications if not completely eliminate them. But I stress, it's different from patient to patient. But I really think your mother needs something she's not getting at the moment.
Thanks Googy, Bruce and Ruth for the replies and great info and support!
When they implanted the electrodes they did use the *halo* with MRI coordinates and also sound location so I assume they are in the right place? The surgeon did also explain to me that they had to go approx 1mm deeper on the right side to get to the right spot.....so it would seem that they knew what they were doing in that respect? She also had excellent interoperative response when they turned on the stimulation in the operating room. I thought at first that her *bad* initial response was just due to some swelling that would abate over time.
The Neurologist has been adjusting the stimulator every few days. After her iniital progamming she seemed much better in a couple of ways (her tremor was virtually eliminated and her rigidity was much better....she was actually putting her feet flat on the floor when walking insted of walking on the balls of her feet...and she was almost taking real *steps* instead of shuffling so much).
Her 2 big problems at that point were her slurred speech and balance problems when attempting to come to a standing position. I felt that both of these things could be worked on with the programming and/or over time.
She's also been on Amantadine since the surgery (she's never been able to tolerate most PD meds due to side effects but the Amantadine seemed to be helping and she was not having any adverse reactions to it).
Last Wednesday she was doing really good walking (still balance problems and speech was slurred). On Thursday the Neurologist adjusted the stimulator again and took her off the Amantadine (don't have a clue why!). By Friday she was awful! I would say that she was worse in every way besides tremor than prior to the surgery!
Last night her speech was so bad that she was having trouble even getting the words out (this happened right after surgery also). She starts to speak and then starts stuttering and just has to stop as she can't get anything to come out (she knows what she wants to say...and told me that the speech issue has her very frustrated).
I don't know at this point if the Neurologist is not programming correctly...or taking her off the Amantadine combined with the programing session on Thursday...or what! All I know is she's worse now than before!
I've got a call in to the Neurologist to visit with him also (he's out today). Not sure what to do if he's not programming the stimulator correctly though. There's only one team of doctors in this area that do this (Billings, MT). Next closest is Denver or Spokane (both about 500-600 miles away).
I just wish there was something I could do to figure this out or help her! I've been driving the doctors nuts I think!
What's even worse is the people at the hospital telling me that the operation was a *great success* and her speech isn't slurred...like they think I'm nuts! (she sounds like she's drunk most of the time if she can even get the words out...don't know how they can say it's not slurred!). Then telling me that she should be sent to a nursing home (but it was a great success??).
I guess I'll keep plugging away and hope I can get somewhere with the Neurology staff! Sorry to make this post so long but I'm so frustrated and feel helpless to do anything!
Thanks again for the great info and support!
All The Best -
Laura
Mom had Activa Deep Brain Stimulation....Help! 
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