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
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.
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
Quote:
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.
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.
Data submitted to FDA for approval of DBS surgery 
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