Roberta - I have a friend who has just had her checkup after having DBS STN seven weeks ago. She has been told to halve her Sinemet and start on Mirapex. She was, I think, taking the Sinemet in 125mg tabs, now to take it in 62.5mg tabs. Will she have any withdrawal symptoms; are there any equivalents for substituting Mirapex for Sinemet - how much Mirapex would be the equivalent of the Sinemet? Time scale - I know one other lady who, after this op, had night sweats (she had gone from 1400 (fourteen hundred) mg levodopa (in Sinemet format) to about 2mg Requip, and found that there was very little known about this.
Second question - this time for me! I have had the same operation,and found a mention somewhere about speech problems often being due to less than optimal placement of the leads - do you have any medical references you could list for this?
Many thanks for all this!
Subject
Re: ask the nurse
Date
19 December 2003
Posted by
LEE BUCKINDALE
MERRY CHRISTMAS AND HAPPY NEW YEAR TO ROBERTA AND ALL THE OTHER PEOPLE THAT WORK WITH YOU! MR. LEE BUCKINDALE
Subject
Re: ask the nurse
Date
15 November 2003
Posted by
Lee Buckindale
Ed, I have run into and talked with several people who were treated with DBS for cervical dystoniaI believe the stimulation site is the pallidum either unilateral or bilateral. Same risks hemmorage and infection I believe the percentage is 2% very low but the posibility is still there. Good Luck! Lee Buckindale
Subject
Re: ask the nurse
Date
12 November 2003
Posted by
Ed Conaway
My wife is considering DBS for her cervical dystonia. I'm trying to find information on success/failure rates; types, severity and frequency of complications; and mortality, if any. Do you have any of this information? Thank you.
Subject
Re: ask the nurse
Date
11 November 2003
Posted by
Roberta the DBS nurse
Dear Peggy, We can all appreciate your frustration. A lot of expectations surround this procedure and, unfortunately, not all of them are always met. An important step in dealing with the frustration is taking ownership of how the therapy is administered. I've outlined how to do this in a previous post. I would recommend you find a programming provider closer to your home for more frequent adjustments. Cleveland Clinic has wonderful programming, but taking a long trip and being away from home adds stressors that might muck it up. When you say you have trouble achieving the balance between meds and stim, I infer you mean you have dyskinesias from the combination. In these cases I sometimes have patients on a program of weekly "baby steps" increments of 1/10 of a volt, and back off at the threshhold of dyskinesia. I believe you can get the results you were hoping for out of this, with more time, patience, and help from your friends at rewired. Roberta
Subject
ask the nurse
Date
07 November 2003
Posted by
Peggy Robinson
I had my DBS done at The Cleveland Clinic on 11-25-02. It has been a struggle balancing the meds with the stimulators. I find it all so frustrating. I live in Colorado Springs and have been flying back to Cleveland for appointments. I am now on Stalevo 100, and I haven't notice too much smoothness in my movements. Why is it so hard to get it just right. I am 54 and to be quite honest I am looking for some sort of "normal" but it is very elusive. I am beginning to think that it is one big crap shoot. Is this more the norm than those few truly successful cases? Thank you Peggy Robinson
Subject
Re: ask the nurse
Date
31 October 2003
Posted by
Lee
Roberta, Thank you for your encouragement. Since I have myoclonus dystonia, the myoclonus being stimulis triggered it is very long journey finding the right perameter. The dystonia has been redused but we then have to alliviate the myoclonus which can be a lot of fine tuning because its also triggered by movement(action myoclonus). Your words have once again brought some hope
for me.I am dealing with Dr. Moro who was trained in Grenoble, France for programming DBS.I have a lady friend and its very hard to entre a restaurant or even a coffee shop. There are 5 members of family all on my dads side with this disorder. I am right handed and have not writted with it for a 8 years. Maybe some day ah. Lee (the man)
Subject
Re: ask the nurse
Date
29 October 2003
Posted by
Roberta the DBS nurse
Hi Lee, You're right....it takes as long as it takes, but if the placement is correct, you will find it. The more the patient can partner in on the programming, the better the outcome. With your dystonia, an EMG can provide feedback, but for PD, the only indicator is the patient, so the more feedback you can provide, the greater the chance of success. This means really learning about how the device works and what you are searching for. So ask questions, take notes, keep a diary of responses, always ask for a copy of your programming notes and study them. When you go for programming, know what it is you want and ask for it. "It's not working good" gives us little to go on. When a patient comes in and tells me "My left leg is dragging and I have some breakthrough tremor" they will leave with what they came in for. And always remember to tell your programmer when you're feeling great! This makes us dance down the halls!!! Roberta
Subject
Re: ask the nurse
Date
23 October 2003
Posted by
lee Buckindale
Roberta, Some the people on this web site were asking about how long of procedure it takes to get the right adjustments On October 22nd I spent 6hrs on the 13th floor of the Toronto Western Hospital hooked up to an EMG while they did another 4 perameters while recording the muscel activity to determine if theere was a decrease in spike waves. The results where good having good response in the pallidum and STN It can be a take a long dragged out procedure Finally we are getting some. To anybody out there getting discourage hang in there. PATIENTS & TOLERENCE Mr. Lee Buckindale
Subject
Re: ask the nurse
Date
20 October 2003
Posted by
Roberta the DBS nurse
Marti, A shocking sensation in the head may indicate an open circuit. He should have impedance tests on all the wires at the programmer's office. Often, they feel it more strongly when they poke the place where it's shocking. You can try the AM radio test, if you know how to do this, if you don't I'll tell you, and see if the noise stops at the level of the shock. Please let us know what you find out. Roberta
Subject
ASK THE NURSE
Date
14 October 2003
Posted by
Marti Collopy
My husband had DBS surgery in June. He is experiencing a shocking sensation in his head. He describes it as the sensation you get from static when you drag your feet on carpet. Have you heard of this before?
Subject
Re: ask the nurse
Date
06 October 2003
Posted by
Roberta the DBS nurse
aah, you got the Kinetra in Canada. We can't have it yet. Very interesting that the STN is your better spot. I hope you do great! Roberta
Subject
Re: ask the nurse
Date
06 October 2003
Posted by
LEE
I did have the stimulator controller but it was taken at the bus station in Toronto. I put in the seat next to me and before you good say Mother of Mary it was gone. Any way the dystonia has been reduced ot rigidity, I,m back in two weeks for some fine tuning. Thank GOD for re-wired of life chat room and all your help Roberta. Lee
Subject
Re: ask the nurse
Date
30 September 2003
Posted by
Lee
Roberta, I have the new bilateral Kinetra stimulator which has more opions than the single one , like been able to increase your own amplitude , pulse width an even frequency to a certain degree when programmmed by the nuerogist. I have only the STN running ,that as the best target according to the blind sudy. Lee
Subject
Re: ask the nurse
Date
25 September 2003
Posted by
Roberta the DBS nurse
Hi Lee! Sorry I took so long to get back to you, I was on the Parkinson's cruise to Alaska. I'll write another post tomorrow to tell everyone about our wonderful time. A double blind study means that neither the patient or examiner knows what therapy has been administered. In this case, it probably means that they'll test you with stimulation in 4 different conditions. STN off GPi on, GPi off STN on, both off, both on. The examiner won't know which is which, and neither will you, so the responses will be unbiased. I'd like to know how you are able to increase your amplitude yourself? I wish everyone could do this. Roberta
Subject
Re: ask the nurse
Date
07 September 2003
Posted by
LEE
Roberta, What is a double blind study and how is actually performed ? They say this study will take most of the day.They have me at a pulse width of 60 and and a rate of 130 at 2.0 microvolts which I myself can increase. I would like to say that I,m trying to stop drinking coffee which triggers the movements and makes it a lot worse. Lee
Subject
Re: ask the nurse
Date
28 August 2003
Posted by
Roberta the DBS nurse
Hi Lee, It will be very interesting to see what happens with this. You've never had them both activated before? As far as I understand it, the motor pathways from GPi pass through STN anyway, and vice versa, so I don't really get how this will work, although they can be programmed quite differently, and I guess alter the inhibitory systems. This is fascinating, and I hope they will publish soon. Be good! Roberta
Subject
Re: ask the nurse
Date
27 August 2003
Posted by
Lee
Roberta, On the 19th of Sept. I,m going in for a double blind study. I will have the electrode in the STN acivated as well as the pallidum. I wonder what the results will be and what kind of physiologial effects will take place. I believe the STN has more of a metabolical change! LEE
Subject
Re: ask the nurse
Date
16 May 2003
Posted by
Raymond
Yes, I saw it. Here is another site displaying a fake diploma or a fake degree http://www.superiorfakedegree.com
There are so many to choose from. Ray
Subject
ask the nurse
Date
03 November 2002
Posted by
Roberta the DBS nurse
Hi Everyone! I've recently been invited by Margaret and Carol to poke my nosy face into the forum and help address your questions and concerns, practical and philosophical, about all things DBS. I've just returned from a whirlwind of DBS seminars, at sea on a Parkinson's cruise to Mexico (fun!), in Las Vegas and Oxnard, California. All told, in the last two weeks, I've talked to about 600 people about DBS. Is the PD community interested in DBS? I would have to say a resounding yes! I have a group called "The Live Wires" that meet quarterly for potluck dinner, socialization and support. Patients learn more from each other than from any medical practitioners or literature. I've also observed that people with DBS are a lot like people with motorcycles or sports cars, they love to talk to others who have it (how many amps do you have?). I encourage you to use this wonderful forum to help, support and applaud each other, and I will be here to share what I know about surgery, programming and individual problems. Of course, if you're doing great, let us know that too! That's what it's all about. Let's hear from you! Roberta the DBS nurse
