Bruce
11-18-2001, 10:40 AM
It has been while sense I have researched this surgery and am still learning more about it. I had the surgery on April 24 and have yet to get any benefits from it.
I am begining to suspect the electrodes are not in the correct location and have noticed one glarng difference between my procedure and the procedure performed at least four medical centers. The four centers procedures that I have read, all use the microelectrode recording system to locate the precise target area. My surgeon did not use the system.
This information was taken from the Beth Israel Medical Center's web site. "Due to the size and location of the ST nucleus we use microelectrode recording snd stimulation to better define the boundries,"
Microelectrodes are the size of a human hair so that they are the least traumat means of confirming correct target area." "By keeping very accurate track of the recording location we can then create special physiologic maps that are specific to each patient and which CANNOT BE LOCATED WITH MRI"
The obvious question you should ask the neurosurgeon, does he use the microelectrode system?
The expected result is about 70 % improvement in symptoms and about 50% reduction in the pd drugs. I just had to increase the Sinemet.
Bruce
I am begining to suspect the electrodes are not in the correct location and have noticed one glarng difference between my procedure and the procedure performed at least four medical centers. The four centers procedures that I have read, all use the microelectrode recording system to locate the precise target area. My surgeon did not use the system.
This information was taken from the Beth Israel Medical Center's web site. "Due to the size and location of the ST nucleus we use microelectrode recording snd stimulation to better define the boundries,"
Microelectrodes are the size of a human hair so that they are the least traumat means of confirming correct target area." "By keeping very accurate track of the recording location we can then create special physiologic maps that are specific to each patient and which CANNOT BE LOCATED WITH MRI"
The obvious question you should ask the neurosurgeon, does he use the microelectrode system?
The expected result is about 70 % improvement in symptoms and about 50% reduction in the pd drugs. I just had to increase the Sinemet.
Bruce
Sponsor
Googy
11-18-2001, 05:24 PM
Bruce I had no idea the microelectrodes were that size.I hope more people are aware of your research.If you had know what you did now you would be in better shape.Maybe this post will reach some.There are many that read this BB but dont post.I hope that IU is of some help to you.Is it the 27th you are going there?
Blessings,
Googy
Blessings,
Googy
Bruce
11-18-2001, 09:20 PM
My friends, the nurses, asked me to change the appointment to Dec 4. It is strange that suddenly I need more Sinemet. That just about proves the surgeon implanted the electrodes on the wromg site.
You are right that I should be feeling better. Today was a bad day.
Bruce
You are right that I should be feeling better. Today was a bad day.
Bruce
Poochie
02-14-2003, 07:20 PM
Bruce, I read your comments on DBS. I had the surgery done Sept. 12/02 and the tracking machine which tells the neurosurgeon where to place the electrodes malfunctioned. Consequently my electrodes are about 3 millimeters off target.
This has caused some irreversible brain damage for me: my balance is terrible, the muscles in my jaws do not move properly and my speech is barely understandable and I have trouble chewing. And I have developed a tremour in my left hand.
I have had PD 24 years and the surgery is going to be redone next month.
I can understand your plight perfectly and have talked to so many people who think the operation is a breeze and that it will fix everything. It will only help the symptoms that are helped by l'dopa.
Anyone considering this surgery should be aware that there are risks that the medical personnel do not tell you about. I also had a 6 week battle with infection.
Not to mention that this whole episode has been like a nightmare in that I need more help now. It sure wrecked my plans.
Poochie
This has caused some irreversible brain damage for me: my balance is terrible, the muscles in my jaws do not move properly and my speech is barely understandable and I have trouble chewing. And I have developed a tremour in my left hand.
I have had PD 24 years and the surgery is going to be redone next month.
I can understand your plight perfectly and have talked to so many people who think the operation is a breeze and that it will fix everything. It will only help the symptoms that are helped by l'dopa.
Anyone considering this surgery should be aware that there are risks that the medical personnel do not tell you about. I also had a 6 week battle with infection.
Not to mention that this whole episode has been like a nightmare in that I need more help now. It sure wrecked my plans.
Poochie
Googy
02-15-2003, 05:22 PM
Poochie,
I hope the next DBS will be great.Bruce had it redone,is doing good.I have forwarded you reply to him on another message Board.
Good Luck,
Googy
I hope the next DBS will be great.Bruce had it redone,is doing good.I have forwarded you reply to him on another message Board.
Good Luck,
Googy
BrcMicro
02-16-2003, 07:29 AM
Pootchie, It looks like we have a few things in common. You are exacrly right about the benefits of the surgery. It does not help weakness, but is likely to help any involuntary movement.
I have learned a lot more about the surgery, and a good source is www.npf.org. (http://www.npf.org.) the NPF site,and sign up for "ask the surgeon."
Are you going to have the same surgeon do the second surgery? Experience is very important in choosing a surgeon and prorgramer. They waited over four weeks, so the brain could heal before turning on the DBS,
Being off the target is a lot, and make sure they are being honest with you about the reason they missed the target.
I have had only one adjustment and it took a half a day. My balance is improved and i have no tremors or dyskinesia. Everyone that had the surgery told me they had more energy, and that isn't true.
I could see the microelecrode on the computer screen as it moved towards the target,and their was no doubt in my mind they hit the target. The probe moves one thousandth of a millimeter and is conrolled by a device. I am suspicious about the reason for missing the target. Three millimeters is like three miles in the surgery.
Do you remember hearing the static coming from the cells? When the static speeds up, they are getting close to the target.If they hit the target, you should see an improvement in your balance and tremers. One old surgical technique was to kill off some brain tissue. So you might still improve after the second surgery.
A word about infections. Never get the incision wet and keep the site covered with neosporin ointment (contains three antbiotics).
If you have any questions i will check the board.
Good luck.
Bruce
I have learned a lot more about the surgery, and a good source is www.npf.org. (http://www.npf.org.) the NPF site,and sign up for "ask the surgeon."
Are you going to have the same surgeon do the second surgery? Experience is very important in choosing a surgeon and prorgramer. They waited over four weeks, so the brain could heal before turning on the DBS,
Being off the target is a lot, and make sure they are being honest with you about the reason they missed the target.
I have had only one adjustment and it took a half a day. My balance is improved and i have no tremors or dyskinesia. Everyone that had the surgery told me they had more energy, and that isn't true.
I could see the microelecrode on the computer screen as it moved towards the target,and their was no doubt in my mind they hit the target. The probe moves one thousandth of a millimeter and is conrolled by a device. I am suspicious about the reason for missing the target. Three millimeters is like three miles in the surgery.
Do you remember hearing the static coming from the cells? When the static speeds up, they are getting close to the target.If they hit the target, you should see an improvement in your balance and tremers. One old surgical technique was to kill off some brain tissue. So you might still improve after the second surgery.
A word about infections. Never get the incision wet and keep the site covered with neosporin ointment (contains three antbiotics).
If you have any questions i will check the board.
Good luck.
Bruce
Rubylock
06-02-2004, 07:23 AM
Poochie<-- I am so sorry the surgeons goofed you over. I am due to have a DBS by the Houston Vetedran's Administration Medical Center. Having PD is bad enough, it seems, without having your head dogged down with a metal cage while knitting needles are stuck in your brain and a Sony walkman is buried in your chest. To add incompetence to the mix is just outrageous. I'm having second thoughts. The only thing worse than your situation is having a Pakistani surgeon working for the government doing the operation. "Oops. Forgive me, Sahib... I dropped your skull plug."
Rubylock
Rubylock