Bruce
08-22-2003, 10:48 PM
This is data submitted to the FDA by the Medtronic company seeking FDA approval of the DBS surgery.
Tremor 87.5% improvement
Rigidity 50%
Bradykinesia 41.2%
Postural instability 33.3%
Reduction of levodopa equivalents 27-36% of patients had at least a 50% or greater reduction.
Off time decreased from 8 hours at pre implant to 3 hours at followup.
Tremor 87.5% improvement
Rigidity 50%
Bradykinesia 41.2%
Postural instability 33.3%
Reduction of levodopa equivalents 27-36% of patients had at least a 50% or greater reduction.
Off time decreased from 8 hours at pre implant to 3 hours at followup.
Sponsor
conchata
08-23-2003, 12:31 AM
Hello Bruce,
We went to a specialist last year to talk to them about my husband having the DBS surgery after seeing a gentleman on 20/20 that had the surgery. The Dr. said that my husband had not maxed out on the meds yet to even think about the surgery. Now a year later he is starting to experience the stiffness, and the freezing. He takes meripex 0.5 3 times a day.
I am not sure what level you have to be to have the surgery, do you? I know that you have had it, how long had you had PD before they considered you for the surgery?
Take care,
conchata
We went to a specialist last year to talk to them about my husband having the DBS surgery after seeing a gentleman on 20/20 that had the surgery. The Dr. said that my husband had not maxed out on the meds yet to even think about the surgery. Now a year later he is starting to experience the stiffness, and the freezing. He takes meripex 0.5 3 times a day.
I am not sure what level you have to be to have the surgery, do you? I know that you have had it, how long had you had PD before they considered you for the surgery?
Take care,
conchata
Bruce
08-23-2003, 11:29 AM
Conchata, It was about ten years before my first DBS surgery and the surgeon missed the target. That's when my DBS education really began. These percentages are very important, because it gives you an accurate picture on what to expect after the surgery.
One important point is how well your husband responds to Sinemet. Since he is only taking mirepex, it is best to wait until he is on Sinemet and is forced to take higher doses of Sinemet. Sinemet is the most effective pd drug, and the current thinking is to save the Sinemet until it is needed. When i was about maxed out on Sinemet, I started getting dyskinesia. Now i only take about 50% of the pd drugs as compared to before the second surgery and no dyskinesia.
You can even extend the effectiveness of Sinemet by taking Comtan, which enabled me to delete one dose.
So it looks like your husband still has some good, effective drugs to rely on before he needs the DBS surgery.
I have been researching the DBS surgery lately, and each surgeon and hospital have differing protocols. Some say it is better to have the surgery when the patient is younger, and some say wait until the meds no longer control the symptoms.
I was forced to wait about two years, and was hoping to walk better after the surgery, but it is too late for me, becausei have arthritis in both knees.
If, at some point, your husband plans on having the surgerey, it is important to choose a surgeon and hospital that has a lot of experience performing the DBS surgery. Three of the best are Cleveland Clinic, UCLA, university of Miami, plus Grady hospital in Atlanta, Kansas university med center, and the Mayo clinic.
How is trhat for a short answer?
Bruce
One important point is how well your husband responds to Sinemet. Since he is only taking mirepex, it is best to wait until he is on Sinemet and is forced to take higher doses of Sinemet. Sinemet is the most effective pd drug, and the current thinking is to save the Sinemet until it is needed. When i was about maxed out on Sinemet, I started getting dyskinesia. Now i only take about 50% of the pd drugs as compared to before the second surgery and no dyskinesia.
You can even extend the effectiveness of Sinemet by taking Comtan, which enabled me to delete one dose.
So it looks like your husband still has some good, effective drugs to rely on before he needs the DBS surgery.
I have been researching the DBS surgery lately, and each surgeon and hospital have differing protocols. Some say it is better to have the surgery when the patient is younger, and some say wait until the meds no longer control the symptoms.
I was forced to wait about two years, and was hoping to walk better after the surgery, but it is too late for me, becausei have arthritis in both knees.
If, at some point, your husband plans on having the surgerey, it is important to choose a surgeon and hospital that has a lot of experience performing the DBS surgery. Three of the best are Cleveland Clinic, UCLA, university of Miami, plus Grady hospital in Atlanta, Kansas university med center, and the Mayo clinic.
How is trhat for a short answer?
Bruce
conchata
08-26-2003, 12:45 AM
Bruce,
The Dr. did say that he would not be considered until everything else has been exusted with medication.
We were thinking that it would be best to do the surgery before he got worse, from what I understand there is no going back once you have progressed to a point. There are things that slow the progression down, medications, surgery but, you can not repair what you have lost. Is that true?
What exactly is Dyskinesia?
We have an HMO, so I do not think that we will be able to pick the hospital or Dr that we would like to see. We think that there is a lot more out there for my husband but we are limited with our HMO.
By the way how is your garden going? It is the end of the season is your garden done for the year or do you do winter vegies??
Take care,
Conchata
Originally posted by Bruce:
Conchata, It was about ten years before my first DBS surgery and the surgeon missed the target. That's when my DBS education really began. These percentages are very important, because it gives you an accurate picture on what to expect after the surgery.
One important point is how well your husband responds to Sinemet. Since he is only taking mirepex, it is best to wait until he is on Sinemet and is forced to take higher doses of Sinemet. Sinemet is the most effective pd drug, and the current thinking is to save the Sinemet until it is needed. When i was about maxed out on Sinemet, I started getting dyskinesia. Now i only take about 50% of the pd drugs as compared to before the second surgery and no dyskinesia.
You can even extend the effectiveness of Sinemet by taking Comtan, which enabled me to delete one dose.
So it looks like your husband still has some good, effective drugs to rely on before he needs the DBS surgery.
I have been researching the DBS surgery lately, and each surgeon and hospital have differing protocols. Some say it is better to have the surgery when the patient is younger, and some say wait until the meds no longer control the symptoms.
I was forced to wait about two years, and was hoping to walk better after the surgery, but it is too late for me, becausei have arthritis in both knees.
If, at some point, your husband plans on having the surgerey, it is important to choose a surgeon and hospital that has a lot of experience performing the DBS surgery. Three of the best are Cleveland Clinic, UCLA, university of Miami, plus Grady hospital in Atlanta, Kansas university med center, and the Mayo clinic.
How is trhat for a short answer?
Bruce
The Dr. did say that he would not be considered until everything else has been exusted with medication.
We were thinking that it would be best to do the surgery before he got worse, from what I understand there is no going back once you have progressed to a point. There are things that slow the progression down, medications, surgery but, you can not repair what you have lost. Is that true?
What exactly is Dyskinesia?
We have an HMO, so I do not think that we will be able to pick the hospital or Dr that we would like to see. We think that there is a lot more out there for my husband but we are limited with our HMO.
By the way how is your garden going? It is the end of the season is your garden done for the year or do you do winter vegies??
Take care,
Conchata
Originally posted by Bruce:
Conchata, It was about ten years before my first DBS surgery and the surgeon missed the target. That's when my DBS education really began. These percentages are very important, because it gives you an accurate picture on what to expect after the surgery.
One important point is how well your husband responds to Sinemet. Since he is only taking mirepex, it is best to wait until he is on Sinemet and is forced to take higher doses of Sinemet. Sinemet is the most effective pd drug, and the current thinking is to save the Sinemet until it is needed. When i was about maxed out on Sinemet, I started getting dyskinesia. Now i only take about 50% of the pd drugs as compared to before the second surgery and no dyskinesia.
You can even extend the effectiveness of Sinemet by taking Comtan, which enabled me to delete one dose.
So it looks like your husband still has some good, effective drugs to rely on before he needs the DBS surgery.
I have been researching the DBS surgery lately, and each surgeon and hospital have differing protocols. Some say it is better to have the surgery when the patient is younger, and some say wait until the meds no longer control the symptoms.
I was forced to wait about two years, and was hoping to walk better after the surgery, but it is too late for me, becausei have arthritis in both knees.
If, at some point, your husband plans on having the surgerey, it is important to choose a surgeon and hospital that has a lot of experience performing the DBS surgery. Three of the best are Cleveland Clinic, UCLA, university of Miami, plus Grady hospital in Atlanta, Kansas university med center, and the Mayo clinic.
How is trhat for a short answer?
Bruce
Bruce
08-26-2003, 09:53 AM
I have been searching the net for information about the DBS surgery, and one thing i read was if the surgery was done before the meds stop working it was unethical. I understand how you feel, but if your husband's symptomss are getting worse, it would seem like the doctor should adjust the medication.
Their is a "ask the surgeon" topic on the NPF web site. The surgeon gets most of the questions about the DBS surgery. He is from the Cleveland Clininc, and he believes on doing the surgery as soon as possible.
Another factor in deciding when to have the surgery is a significant loss in the quality of life. Younger people on the average do much better than older people.
Bruce
Their is a "ask the surgeon" topic on the NPF web site. The surgeon gets most of the questions about the DBS surgery. He is from the Cleveland Clininc, and he believes on doing the surgery as soon as possible.
Another factor in deciding when to have the surgery is a significant loss in the quality of life. Younger people on the average do much better than older people.
Bruce
Googy
08-26-2003, 11:54 PM
Conchata,
I agree with Bruce and I know what the HMO will say.Bill also is on an HMO.When Sinemet is no longer affective,that is the time to consider other options.Bill's Sinemet still works after 29 years,but it doesn't stop the advance of PD.Dyskinesia is a jerking of the body not a tremor.Bill's was severe ,we had to cut back on his meds.But less more disablement We never considered DBS.He is to old.Stubborn ! Would never agree anyway. There are many agonists out there,new ones all the time such as Comtan.Bill took all the old drugs over the years.Just on Sinemet CR now.
Googy
I agree with Bruce and I know what the HMO will say.Bill also is on an HMO.When Sinemet is no longer affective,that is the time to consider other options.Bill's Sinemet still works after 29 years,but it doesn't stop the advance of PD.Dyskinesia is a jerking of the body not a tremor.Bill's was severe ,we had to cut back on his meds.But less more disablement We never considered DBS.He is to old.Stubborn ! Would never agree anyway. There are many agonists out there,new ones all the time such as Comtan.Bill took all the old drugs over the years.Just on Sinemet CR now.
Googy
Bruce
08-27-2003, 01:31 PM
Conchata, I finally found a good explanation on who is a good candidate for the DBS surgery. It comes from Parkinsons disease control.
The ideal DBS patient is a person who gets benefit from the medications, but for whom thr medications are notr working well-either because they are wearing off suddenly, or they cause involuntary twisting and writhing movements (dyskinesia). If a patient with these problems is in good health and has a cleasr mind with normal cognition and no dementia, then he or she would be an ideal candidate for deep brain stimulation.
Bruce
The ideal DBS patient is a person who gets benefit from the medications, but for whom thr medications are notr working well-either because they are wearing off suddenly, or they cause involuntary twisting and writhing movements (dyskinesia). If a patient with these problems is in good health and has a cleasr mind with normal cognition and no dementia, then he or she would be an ideal candidate for deep brain stimulation.
Bruce
conchata
08-29-2003, 01:33 AM
Thank you Googy for the feedback.
With your experience if you want to go outside the HMO are you able to do that? I know that our HMO has specialist, they are the ones that diagnosed my husband. Also they sent us to them to talk to them about the DBS surgery. My husband was also ask to perticipate in some experiment program, he was not interested, it scared him. Did your husband do anything like that? Thanks for the explanation of Dyskinesia. My husband has tremors not jerks, so he must not have Dyskinesia. Would you say that that comes much later.
Take care,
conchata
Originally posted by Googy:
Conchata,
I agree with Bruce and I know what the HMO will say.Bill also is on an HMO.When Sinemet is no longer affective,that is the time to consider other options.Bill's Sinemet still works after 29 years,but it doesn't stop the advance of PD.Dyskinesia is a jerking of the body not a tremor.Bill's was severe ,we had to cut back on his meds.But less more disablement We never considered DBS.He is to old.Stubborn ! Would never agree anyway. There are many agonists out there,new ones all the time such as Comtan.Bill took all the old drugs over the years.Just on Sinemet CR now.
Googy
With your experience if you want to go outside the HMO are you able to do that? I know that our HMO has specialist, they are the ones that diagnosed my husband. Also they sent us to them to talk to them about the DBS surgery. My husband was also ask to perticipate in some experiment program, he was not interested, it scared him. Did your husband do anything like that? Thanks for the explanation of Dyskinesia. My husband has tremors not jerks, so he must not have Dyskinesia. Would you say that that comes much later.
Take care,
conchata
Originally posted by Googy:
Conchata,
I agree with Bruce and I know what the HMO will say.Bill also is on an HMO.When Sinemet is no longer affective,that is the time to consider other options.Bill's Sinemet still works after 29 years,but it doesn't stop the advance of PD.Dyskinesia is a jerking of the body not a tremor.Bill's was severe ,we had to cut back on his meds.But less more disablement We never considered DBS.He is to old.Stubborn ! Would never agree anyway. There are many agonists out there,new ones all the time such as Comtan.Bill took all the old drugs over the years.Just on Sinemet CR now.
Googy
conchata
08-29-2003, 01:48 AM
Thank you Bruce
This helps us out a lot.
That is not the impression that we had. We thought that it was for everyone, ASAP. After talking to the specialist they did explain that my husband had a long way to go with the meds. Your explanation is much clearer.
Are there DBS surgeries that have caused more problems coming out then going in. Have you ever heard of a non-successful surgery?
So, is Dyskinesia caused by medication?
Thank you again my friend, take care
Originally posted by Bruce:
Conchata, I finally found a good explanation on who is a good candidate for the DBS surgery. It comes from Parkinsons disease control.
The ideal DBS patient is a person who gets benefit from the medications, but for whom thr medications are notr working well-either because they are wearing off suddenly, or they cause involuntary twisting and writhing movements (dyskinesia). If a patient with these problems is in good health and has a cleasr mind with normal cognition and no dementia, then he or she would be an ideal candidate for deep brain stimulation.
Bruce
This helps us out a lot.
That is not the impression that we had. We thought that it was for everyone, ASAP. After talking to the specialist they did explain that my husband had a long way to go with the meds. Your explanation is much clearer.
Are there DBS surgeries that have caused more problems coming out then going in. Have you ever heard of a non-successful surgery?
So, is Dyskinesia caused by medication?
Thank you again my friend, take care
Originally posted by Bruce:
Conchata, I finally found a good explanation on who is a good candidate for the DBS surgery. It comes from Parkinsons disease control.
The ideal DBS patient is a person who gets benefit from the medications, but for whom thr medications are notr working well-either because they are wearing off suddenly, or they cause involuntary twisting and writhing movements (dyskinesia). If a patient with these problems is in good health and has a cleasr mind with normal cognition and no dementia, then he or she would be an ideal candidate for deep brain stimulation.
Bruce
Bruce
08-29-2003, 01:30 PM
Conchata, yes i have had two bilateral DBS surgeries. the firstone the surgeon missed the target, because he was lacking an important computer setup that pinppoints the target. I got no response to a large number of adjustments.
I am a lot more assertive in talking to doctors now. I changed neurologists three times and finally located a MDS at Indiana U. med center. I had the surgery again at the med. center.
Eventually, your husband will end up on Sinemet and as the dose is incrased, he will start to get dyskiesia as a side effect of the drug. When he can't take any more doses of Sinemt, like me, he will be ready for the surgry, I now take 50% less pd drugs compared to before the surgery.
The size of the line attached to the electrodes in my brain is about the same as a human hair. So the surgery is not very invasive and very little trauma to the rest of the brain.
Bruce
I am a lot more assertive in talking to doctors now. I changed neurologists three times and finally located a MDS at Indiana U. med center. I had the surgery again at the med. center.
Eventually, your husband will end up on Sinemet and as the dose is incrased, he will start to get dyskiesia as a side effect of the drug. When he can't take any more doses of Sinemt, like me, he will be ready for the surgry, I now take 50% less pd drugs compared to before the surgery.
The size of the line attached to the electrodes in my brain is about the same as a human hair. So the surgery is not very invasive and very little trauma to the rest of the brain.
Bruce