[wwally0]

Decreasing meds post DBS?

I was just wondering if anyone could give me some insight re: potential decreases in medication once you’ve had DBS. I’m supposed to get my surgery date at the end of the coming week. Having spent $3600.00 on meds out of pocket last year I’m hoping for a little fiscal as well as symptomatic relief. Thanks. Guy

[MKane]

I had DBS in April 2007. The generator was activated on May 4. Been back three times for adjustments. So far I have not been able to reduce medication at all. Nevertheless, the DBS did help and would do it again. No more dyskenisa.

[chasmo]

the median result is a 50% reduction in meds. ABout 10% get rid of all meds. I was able to stop all meds for 5 years. I just recently started back on 4X 25/100'S DAILY.

SO your chances are pretty good that you'll be able to quit or reduce some meds.

Charlie

http://health.groups.yahoo.com/group/DBSsurgery/

[made it up]

Wally, Your medication needs can and usually do change quite dramatically after surgery.
MKane perhaps it's worth seeing your neurologist and requesting an MRI to more precisely locate the electrodes and for him and the radiologist to confirm whether or not they're in the optimal position?
Taking the same amount of meds as pre op doesn't seem right.
I had to end up taking the same amount of levodopa (1200mg/day) as pre op for 5 months post bilateral DBS as one side had the electrode 2mm away from the optimal position.
When it was repositioned I went to no medication whatsever.
I now take a fraction of medication than what I took before the repositioning and find my medication needs have changed enormously from then in my response to them as in I'm incredibly sensitive and more responsive to its actions in relieving the symptoms of P.D.
Hope this helps.
Lee

[wwally0]

That is incredibly helpful. My neuro said he’d do both sides as long as there were no complications. It’s also helpful to know about the several trips for adjustments b/c I’m on an Island it costs me $1000.00 each trip. So much of this business becomes financial. I’m going on disability until I’m back on my feet, but hope to go back to work. I used to spend my days writing but have steadily lost my ability to type on demand as it were. My neuro seems to think this operation will give me my typing back. I’m up to 24 pills a day at the moment so even a reduction would help. And if I could throw Requip away I might be my old, awake and more speedy, self. Thanks for the feed back. Here’s to better living through chemistry, plus a dash of electricity. Guy

[Jim091866]

I had DBS 3 weeks ago, activated on 10/15. So far I feel I am on a very aggressive medication schedule. I too was very surprised that this did not suddenly change my medication requirements. My neuro has led me to believe that this will improve as my body adjust to the leads, etc. and as I heal. There are so many variables in the equation, many components of the settings such as the lead setup, pulse rate, frequency,amplitude, voltage. I am at 1 volt on the left/ 1.5 on the right. The literature I have read in my manual says that the typical setting is around 3v. So I have a long way to go, lots of room for adjustment. He has told me that the objective is the least amount to get the job done. That said, I have not decreased my meds-I only take Sinemet but I take it 1 tab every 2hrs. So many other things have improved for me. Absolutely no dyskinesia, NONE. I can pretty much be "on" all day, no sudden off,etc. That tells me that there may be some room there for spacing this out some. But yes, I definitely think you will see a difference. I was taking Stalevo 400/mo, Amatadine 100/mo. Now that's down to about 120/mo for the Sinemet.

[wwally0]

Thanks Jim, that gives me a handful more of things to consider. I'm going to look at all the messages in Charlie's DBS group as well, to aid my planning. I'm really wondering about recuperation time and lifting restrictions. Living on my own out on God's back farm means a bit more planning. My local doc suggested meals on wheels, which is a meal delivery service subsidized by the government for seniors, but ok for my post-op situation as well. One of the RNs said to me no lifting more than 5lbs until completely healed. And is driving ok? soon after. Much to think about. Thanks for the info. Guy

[Jim091866]

WWally0,

I don't know about specific lifting instructions. Here's how mine went. My first surgery was 10/8/07, I was discharged the next day. My head was bandaged and although I could function almost 100% from just placing the leads I was pretty tired, DUH! Then the generator on 10/15/07-that one knocked me for a little more of a loop, the euphoria of the lead placement was gone. So now not only could I not wash my hair from after the first surgery, now I had to carefully shower due to the stitches in me chest area! I went back to the doctor the next week to be activated. Hair not washed in 15 days! It's been about a month now and I am driving and doing pretty much anything I want-within reason, no yardwork, strenuous stuff. I would think that heavy lifting, sudden movement (neck/shoulders,etc.), ELECTRICAL would be off limits even post operatively. As far as the Meals on Wheels,. they delivered to us, 10 meals and I kept the jucie boxes and ate the fig newtons, nuff said. There was something titled "grilled meat pattie formed" ? Post-op they gave me a bunch of little stocking like things to put on my head and they wanted the areas kept bandaged but it was annoying to try and sleep with the gauze and the tape and the stocking, etc. all pulling your hair. I found it much more comfortable to keep the areas covered with neosporin as advised and gauze then to wear a bandana over your head as opposed to the stocking. That may not seem like much but it was for me. Although when I went to the store I liked how everyone got out of the way when I was wearing the stocking and all the bandaging! Mothers pulled their kids close. I was all ready for halloween, rahh you little monster-get outta the way of that Xbox! Well, I hope I've helped. Ask anything ya want. Best of luck!
In fact I'm now in the process of starting my own business, as the old saying goes FULL SPEED AHEAD, DAMN THE TORPEDOS! Not only have I got the candle burning at both ends, I'm gonna light the middle! Oh yeah, I have washed my hair!