fireflyarts
05-23-2003, 07:54 PM
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
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
Sponsor
Googy
05-23-2003, 11:51 PM
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.
hang in there.My very best Blessings to you.
Googy
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.
hang in there.My very best Blessings to you.
Googy
Bruce
05-24-2003, 09:26 AM
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.
Keep us posted and never give up.
Bruce
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.
Keep us posted and never give up.
Bruce
Pelicangirl
05-26-2003, 07:16 PM
Hi,
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.
------------------
Pelicangirl (aka Ruth)
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.
------------------
Pelicangirl (aka Ruth)
fireflyarts
05-27-2003, 04:06 PM
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
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
Bruce
05-27-2003, 08:42 PM
Laura, i have experienced many of the frustrations you are feeling, and some of this doesn't sound right to me.
After my first surgery, I changed neurologists four times before ending up at the MDS clinic at the university med center. The neurologists i dropped would still be giving me adjustments if i had not switched doctors. They are not likely to admit that they might have missed the target.
Ask them if they used the microelectrode recording system, which is necessary to locate the target. My first surgeon did not use the system and he missed it. He told me later that the system was "contraversial". Every other hospital in this area that performs the surgery uses this system.
During my second surgery, I could see and hear the static as the probe reached the damaged cells in my brain. I could see the probe on the computer screen as it approached the site. I knew from what i saw that they had hit the target.
I learned that even though they missed the target, there was still a small amount of stimulation,
I am not a doctor, but i suspect you are getting the run around and need to see an experienced MDS at a university med center. I realize this could be difficult for you, but you have a lot at stake in this problem.
It took me two years to get a second DBS surgery, and it still wasn't as successful as i expected.
Take care, Bruce
After my first surgery, I changed neurologists four times before ending up at the MDS clinic at the university med center. The neurologists i dropped would still be giving me adjustments if i had not switched doctors. They are not likely to admit that they might have missed the target.
Ask them if they used the microelectrode recording system, which is necessary to locate the target. My first surgeon did not use the system and he missed it. He told me later that the system was "contraversial". Every other hospital in this area that performs the surgery uses this system.
During my second surgery, I could see and hear the static as the probe reached the damaged cells in my brain. I could see the probe on the computer screen as it approached the site. I knew from what i saw that they had hit the target.
I learned that even though they missed the target, there was still a small amount of stimulation,
I am not a doctor, but i suspect you are getting the run around and need to see an experienced MDS at a university med center. I realize this could be difficult for you, but you have a lot at stake in this problem.
It took me two years to get a second DBS surgery, and it still wasn't as successful as i expected.
Take care, Bruce
fireflyarts
05-28-2003, 02:12 AM
Thanks Bruce! Tomorrow I intend to call all the Nuerologists in the Billings area to find out if there are any others that can program the stimulator (I don't have much hope that there will be any but if I don't try I'll never know!).
I did find some interesting info on another site tonight (a forum for people who have had the DBS). There was one man that said after programming his speech was terribly slurred. He noticed that when they programmed the right side of his brain his speech suffered. I know that my Mom had a "touch up" last week for a teeny bit of tremor in her left hand........well, that would be the right side of her brain. And that's right about when her speech took a big nosedive (although it's been a bit slurred since the initial programming......but at least she could speak and be understood before!).
I would hope that the Neurologist would know this and make adjustments accordingly. Perhaps putting up with a bit of tremor to regain some speech might be in order. In fact, she said the mild tremor she had in her left hand wasn't bothering her anyway!
Are you in a large metro area? Just curious that there would be so many Neurologists that would be knowledgeable with the DBS.
Also, just to compare, when you get "adjustments" do they make you *do* anything after adjusting? My mother said all they ask her to do is hold her hands out........never ask her to stand, walk, etc.. Seems like they're focusing on just the tremor and nothing else. So she'll be able to sit in a chair and sip her tea with no tremor.........too bad she won't be able to walk or speak!
Thanks again.......this board has been a wealth of info and support to me!
All The Best -
Laura
I did find some interesting info on another site tonight (a forum for people who have had the DBS). There was one man that said after programming his speech was terribly slurred. He noticed that when they programmed the right side of his brain his speech suffered. I know that my Mom had a "touch up" last week for a teeny bit of tremor in her left hand........well, that would be the right side of her brain. And that's right about when her speech took a big nosedive (although it's been a bit slurred since the initial programming......but at least she could speak and be understood before!).
I would hope that the Neurologist would know this and make adjustments accordingly. Perhaps putting up with a bit of tremor to regain some speech might be in order. In fact, she said the mild tremor she had in her left hand wasn't bothering her anyway!
Are you in a large metro area? Just curious that there would be so many Neurologists that would be knowledgeable with the DBS.
Also, just to compare, when you get "adjustments" do they make you *do* anything after adjusting? My mother said all they ask her to do is hold her hands out........never ask her to stand, walk, etc.. Seems like they're focusing on just the tremor and nothing else. So she'll be able to sit in a chair and sip her tea with no tremor.........too bad she won't be able to walk or speak!
Thanks again.......this board has been a wealth of info and support to me!
All The Best -
Laura
Bruce
05-28-2003, 10:27 AM
Actually, i live in Anderson, Indiana and in thr last two years, i came to realize that their aren't that many neurologists that are knowledgeable in programming the DBS. The difference between the neurologists and the MDS were significant.
The MDS always made me come in off all the pd meds, the others id not. His testing was much more extensive. He crossed his hands across his chest and would say, "you know the drill." He expected me to get out of ther chair without using my hands and to walk. It was a little scary at first, but I did walk a few steps knowing they were there to catch me. Even though his tests were frightening at times I knew it was necessary. None of the other neurologists ever asked me to stop the meds or asked me to walk.
The nurse programmer under supervision of the MDS tested a wide range of settings. She would induce dyskinesia, and then make it go away. My speech would change from weak and slurred to greater volume and no slurrred speech. All of these chages after the second surgery and at one adjustment was proof that the surgeon had hit the target.
Their was something else i forgot to mention. The MDS told me it is better to let the stimulators give me the maximum benefit rather than the drugs. This is way the doctor deleted your mother"s Amantidine and then made an adjustment.
Having the adustement off the meds, made it much easier to reduce the doses of the pd meds. It was like starting over. It
It's easier to add back drugs, rather than delete them.
Living in Indiana, their is only one place that have the experience and knowledge to perform the surgery and do the programming and that is IU med. center. Their standards are higher and they don't insist on appointments unless it is necessary.
It is about a 50 mile drive and i was very lucky to have two local nurses that i used to work with to drive me to the med center.
The reason the DBS adjustments can be difficult is everyones symptoms are different and you have to balance out which symptoms that are the most important to delete.
Hope this makes sense.
Bruce
The MDS always made me come in off all the pd meds, the others id not. His testing was much more extensive. He crossed his hands across his chest and would say, "you know the drill." He expected me to get out of ther chair without using my hands and to walk. It was a little scary at first, but I did walk a few steps knowing they were there to catch me. Even though his tests were frightening at times I knew it was necessary. None of the other neurologists ever asked me to stop the meds or asked me to walk.
The nurse programmer under supervision of the MDS tested a wide range of settings. She would induce dyskinesia, and then make it go away. My speech would change from weak and slurred to greater volume and no slurrred speech. All of these chages after the second surgery and at one adjustment was proof that the surgeon had hit the target.
Their was something else i forgot to mention. The MDS told me it is better to let the stimulators give me the maximum benefit rather than the drugs. This is way the doctor deleted your mother"s Amantidine and then made an adjustment.
Having the adustement off the meds, made it much easier to reduce the doses of the pd meds. It was like starting over. It
It's easier to add back drugs, rather than delete them.
Living in Indiana, their is only one place that have the experience and knowledge to perform the surgery and do the programming and that is IU med. center. Their standards are higher and they don't insist on appointments unless it is necessary.
It is about a 50 mile drive and i was very lucky to have two local nurses that i used to work with to drive me to the med center.
The reason the DBS adjustments can be difficult is everyones symptoms are different and you have to balance out which symptoms that are the most important to delete.
Hope this makes sense.
Bruce
lrwalz
06-22-2003, 01:15 PM
Bruce...I was wondering where you found out about MDS specialist..My father has had 2 DBS and I am not happy about how he has went down and up and down again..I am not totally sure our Dr. knows what is going on...Thanks...Linda
Bruce
06-22-2003, 08:35 PM
Linda, i am not allowed to give specific web sites, but the company that makes the hardware, medtronic, lists surgeons and MDS physicians all over the country. I found the head of neurosurgery for IU med center and he referred me to an excellant MDS at their movment disorder clinic. They did a great job, but they exhaust all options (pd drugs) before recommending surgery number two.
The reps at medtronic are very kmowledgeable and helpful if you call them.
The NPF website also lists parkinson specialists all over the country.
At the clinic i go too, the doctors see only movement disorder patients all day.
Good luck,
Bruce
The reps at medtronic are very kmowledgeable and helpful if you call them.
The NPF website also lists parkinson specialists all over the country.
At the clinic i go too, the doctors see only movement disorder patients all day.
Good luck,
Bruce
lrwalz
06-24-2003, 01:09 PM
Bruce...Thank you and all of the others that have put information on this site...I have found a MDS specialist who is very near to the dr. that programs my father...I have some hope now that maybe we can change a few things I am still not sure...but I am hopeful....I would like to be able to tell my father that he can go home...but at this point with out some other kind of changes for the better I am afraid he will be remaining with me...So ....Thanks again.Linda
[This message has been edited by lrwalz (edited 06-24-2003).]
[This message has been edited by lrwalz (edited 06-24-2003).]
Googy
06-24-2003, 11:48 PM
Good luck Linda.Just keep on trying.There will be better days.
Love,
Googy
Love,
Googy