perry5
05-12-2003, 02:29 PM
Hello Everyone,
I was diagnosed with Parkinson in my early 30's and have been dealing with this disease and it's many debilatating symptoms for over ten years. Over the years as my condition worsened(mostly from rigidity and dyskinesia) the ON/OFF effect and other symptoms made it difficult to work and as a result I took a medical leave from my job. The doctors recommended surgery and told me I was a good candidate for this particular type.
I had surgery last July for inplanting of Subthalamic stimulator(STS) device on both sides of the brain.
After surgery, the device requires some adjustments to work properly (varies by patient usually 4 to 6 months). This operation was approved by FDA last January. Since the surgery I've have noticed that my ON/OFF periods have lessened and I am taking lower doses of meds and as a result,having less side effects.
I would like to know if there are anyone who have undergone this operation and would like to share your post operative experiences as a result of this and simular surgeries.
[This message has been edited by moderator2 (edited 05-12-2003).]
I was diagnosed with Parkinson in my early 30's and have been dealing with this disease and it's many debilatating symptoms for over ten years. Over the years as my condition worsened(mostly from rigidity and dyskinesia) the ON/OFF effect and other symptoms made it difficult to work and as a result I took a medical leave from my job. The doctors recommended surgery and told me I was a good candidate for this particular type.
I had surgery last July for inplanting of Subthalamic stimulator(STS) device on both sides of the brain.
After surgery, the device requires some adjustments to work properly (varies by patient usually 4 to 6 months). This operation was approved by FDA last January. Since the surgery I've have noticed that my ON/OFF periods have lessened and I am taking lower doses of meds and as a result,having less side effects.
I would like to know if there are anyone who have undergone this operation and would like to share your post operative experiences as a result of this and simular surgeries.
[This message has been edited by moderator2 (edited 05-12-2003).]
Sponsor
Pelicangirl
05-13-2003, 01:58 AM
Hi,
Yes, i have had the surgery too, and I find the results remarkable. It's true what you say, the programmer is so important and i think a good one is a must.
I take only 21 mg of Requip daily with an occasional 25/100 of Sinemet thrown in when I feel the need; not every day. It's so wonderful to feel almost 'normal' again.
Yes, I still have PD. this operation is not a cure, but I feel that it's given me a good 10 years back to my life, if not more. I would do it again in a heartbeat.
------------------
Pelicangirl (aka Ruth)
Yes, i have had the surgery too, and I find the results remarkable. It's true what you say, the programmer is so important and i think a good one is a must.
I take only 21 mg of Requip daily with an occasional 25/100 of Sinemet thrown in when I feel the need; not every day. It's so wonderful to feel almost 'normal' again.
Yes, I still have PD. this operation is not a cure, but I feel that it's given me a good 10 years back to my life, if not more. I would do it again in a heartbeat.
------------------
Pelicangirl (aka Ruth)
perry5
05-14-2003, 09:53 PM
Hi Ruth:
Thanks for your reply!
Glad to hear that you are doing well and your procedure was successful. Just like to know how long it took them to program\adjust before they got the correct settings for you. I'm still in the adjustment period.
[This message has been edited by moderator2 (edited 05-15-2003).]
Thanks for your reply!
Glad to hear that you are doing well and your procedure was successful. Just like to know how long it took them to program\adjust before they got the correct settings for you. I'm still in the adjustment period.
[This message has been edited by moderator2 (edited 05-15-2003).]
Pelicangirl
05-19-2003, 09:06 PM
Hi Perry,
Sorry to take so long to respond, but I've been away for a few days.
I feel that the adjustments are an ongoing thing, We'll always have to have them done. But it took about 6 months to get them all settled down and working right. Then I didn't have any for another 6 months or so. My doctor recently has a nurse doing his adjustments and I went to her twice, then back to my old programmer. I feel that the experience he has is invaluable. He said there are over 4000 settings that can be used and he just raises the voltage or expands the band width each time. It is about an hour drive (with good traffic) to get there, but I feel it's well worth the trip. I have had approximately 6 adjustments with my old programmer and 2 with the newer gal, both of which I think were worthless. I had my surgery in 2001, February and May.
------------------
Pelicangirl (aka Ruth)
[This message has been edited by Pelicangirl (edited 05-19-2003).]
Sorry to take so long to respond, but I've been away for a few days.
I feel that the adjustments are an ongoing thing, We'll always have to have them done. But it took about 6 months to get them all settled down and working right. Then I didn't have any for another 6 months or so. My doctor recently has a nurse doing his adjustments and I went to her twice, then back to my old programmer. I feel that the experience he has is invaluable. He said there are over 4000 settings that can be used and he just raises the voltage or expands the band width each time. It is about an hour drive (with good traffic) to get there, but I feel it's well worth the trip. I have had approximately 6 adjustments with my old programmer and 2 with the newer gal, both of which I think were worthless. I had my surgery in 2001, February and May.
------------------
Pelicangirl (aka Ruth)
[This message has been edited by Pelicangirl (edited 05-19-2003).]
Bruce
05-22-2003, 10:51 AM
Hi Perry,I have had two bilateral DBS surgeries. The first one they missed the target, and the second one was a success,
The most important things i have learned after having the surgeries was not to have false expectations and that no one can predict the results until you go through the process.
The surgery works best for involuntary movements. I have no tremors or dyskinesia.
The surgery does not correct muscle weakness or stamina. I still don't have normal muscle strength and have poor stimina.
Their was a slight improvement in my balance, but not enough to enable me to walk without a walker.
On the average, you can expect about a 50% reduction in the pd meds. My MDS got the doses right the first time. I now take mostly 1/2 tablets. I also saw no improvement in dexterity. Usually, the younger the patient, the better the result.
I had my surgery at a university med center, and they wouldn't turn on the system and adjust it until all inflammation (about a month) was reduced. I have only one very intense adjustment, which is unusual, but i think their experience and only adjusting the system when i was completely off all pd meds made the difference in not having more adjustments.
Many people have had great results, but you are getting a biased opinion, because patients who didn't do as well, are not as likely to post there experiene,
Bruce
The most important things i have learned after having the surgeries was not to have false expectations and that no one can predict the results until you go through the process.
The surgery works best for involuntary movements. I have no tremors or dyskinesia.
The surgery does not correct muscle weakness or stamina. I still don't have normal muscle strength and have poor stimina.
Their was a slight improvement in my balance, but not enough to enable me to walk without a walker.
On the average, you can expect about a 50% reduction in the pd meds. My MDS got the doses right the first time. I now take mostly 1/2 tablets. I also saw no improvement in dexterity. Usually, the younger the patient, the better the result.
I had my surgery at a university med center, and they wouldn't turn on the system and adjust it until all inflammation (about a month) was reduced. I have only one very intense adjustment, which is unusual, but i think their experience and only adjusting the system when i was completely off all pd meds made the difference in not having more adjustments.
Many people have had great results, but you are getting a biased opinion, because patients who didn't do as well, are not as likely to post there experiene,
Bruce
Googy
05-22-2003, 11:51 PM
Bruce,
Does this mean you will need no ajustments in the future? When do you have to go back?
As you said we do not hear from those who the DBS wasnt working.I wonder about our friend from way back,Eileen. She had the DBS late April.
Googy
Does this mean you will need no ajustments in the future? When do you have to go back?
As you said we do not hear from those who the DBS wasnt working.I wonder about our friend from way back,Eileen. She had the DBS late April.
Googy
Bruce
05-23-2003, 09:54 AM
Googy, I am sure i will need an adjustment someday as the pd progresses, but i feel about the same as when i had the adjustment, and i guess i have no reason to contact them.
It is very dificult to get an appointment for an adjustmrnt, because they see a lot of patients at the MDS clinic at the med center.
Bruce
It is very dificult to get an appointment for an adjustmrnt, because they see a lot of patients at the MDS clinic at the med center.
Bruce
Pelicangirl
05-26-2003, 07:22 PM
Hi Bruce,
Just because it's difficult to get an appointment for an adjustment, don't delay going in until you REALLY need it. You can usually talk them into getting you in if you need an adjustment (and I know you are a good talker LOL).
------------------
Pelicangirl (aka Ruth)
Just because it's difficult to get an appointment for an adjustment, don't delay going in until you REALLY need it. You can usually talk them into getting you in if you need an adjustment (and I know you are a good talker LOL).
------------------
Pelicangirl (aka Ruth)
kbohn
08-13-2003, 07:48 PM
My mother is currently considering deep brain stimulation, DBS. I have heard of its success with dyskenesia. I have not heard much discussion of its effects on 'freezing', or being unable to move.
She only has dyskenesia when her medicine routine is disrupted. Some pain medicines have brought it on, too.
Anyway, I am hoping one of you might know, personally or second-hand, of DBS's success with freezing.
Thanks, Karl
She only has dyskenesia when her medicine routine is disrupted. Some pain medicines have brought it on, too.
Anyway, I am hoping one of you might know, personally or second-hand, of DBS's success with freezing.
Thanks, Karl
Bruce
08-14-2003, 02:30 PM
My MDS and Dr. Lieberman, the director of the NPF both described the effects of the DBS surgery using the same words. Don't expect any more than the effect you get from taking Sinemet. It works best for involuntary movements.
The surgeon read to me from a release form stating: Their is no assurance that the surgery will work as many people claim it will.
Bruce
The surgeon read to me from a release form stating: Their is no assurance that the surgery will work as many people claim it will.
Bruce
Pelicangirl
08-16-2003, 06:00 AM
Hello again,
I noticed that my lst post to you was in May and Ithought I'd update things a bit. I am now taking 3 mg of Requip and Sinemet 25/100 with a comtan three times a day.
I have been having some balance problems, but if I'm careful, I can manage very well.
My programmer has moved to Virginia from California, so I am forced to find a new one. My MDS has a new one and while I don't feel she is quite as good, I guess I'm stuck with her, at least for the time being.
Anyway, the point I'm trying to make is, the operation isn't a cure and your disease will continue to progress. But it is the next best thing to a cure and, as I said, I would do it again in a heartbeat.
------------------
Pelicangirl (aka Ruth)
I noticed that my lst post to you was in May and Ithought I'd update things a bit. I am now taking 3 mg of Requip and Sinemet 25/100 with a comtan three times a day.
I have been having some balance problems, but if I'm careful, I can manage very well.
My programmer has moved to Virginia from California, so I am forced to find a new one. My MDS has a new one and while I don't feel she is quite as good, I guess I'm stuck with her, at least for the time being.
Anyway, the point I'm trying to make is, the operation isn't a cure and your disease will continue to progress. But it is the next best thing to a cure and, as I said, I would do it again in a heartbeat.
------------------
Pelicangirl (aka Ruth)
Bruce
08-16-2003, 03:48 PM
No one should have false expectations about the DBS surgery. It is not for everyone.
Bruce
Bruce
Rubylock
06-02-2004, 07:10 AM
Bruce<-- where did you have your DBS surgery? Houston? I'm scheduled to go under the knife for DBS in August with the Houston VA Medical Center. I am not impressed with VA quality medicine.
Rubylock
Rubylock