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Deepak

Infinity DBS system - issue

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Although I had this symptomatic relief the disease seems to be progressing and has worsen with the side affects of the medication. Freezing and Dyskinesia was one of the major side affect of the medication which was disabling my social interactions and professional life.

 The doctor’s advised for the STN DBS for getting back to the stable state means where we will have minimal fluctuations of the ON/OFF state. The doctors assured that I will make a remarkable change after the surgery.

Surprisingly we are not able to achieve the expected result from DBS surgery and even if we get the result we were not able to sustain the outcome for a day or two.

Currently at 4 doses of sinemet and 2 doses of CR  along with left side voltage 4 and right side 3.Even then we are not able sustain the results.

 

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It takes few years to get dbs settings optimized provided they implanted leads with millimeter precision. Don’t make any judgements until at least 6 moths. Go to an expert programmer like Sierra Farris in Denver if side effects worsen

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Sorry to hear this, Deepak.

Waruna1 may be right, However, my take is that if you are getting little to no response from DBS, the lead(s) may be misplaced. If your DBS team cannot give you some relief, I would suggest seeking an opinion from another team. There are many variables involved besides programming, and other avenues to follow, so there is good reason to hope for better results. 

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I had the "honeymoon" for a few weeks after surgery. Brain swelling does something very odd where I just didn't seem to need my medication!

Two weeks after the brain surgery, the simulator was turned on.  I was still in the honeymoon period. Next four months I had monthly assessment and readjustment. Then every six weeks. Finally after at year I'm back to every three months for appointments. Still tweaking settings a little. Left side very stable, right side depends on taking Sinemet every four hours (one tablet). Couldn't get away from it completely, but still at  1/3 what I was taking prior to DBS.   Much better bladder control! (yipee!)

It's a journey, not a quick fix.

 

EDIT: Two months since Deepek had surgery -- looking at his early post. Brain Swelling can take months, and everything is just off until that settles down. So give it time, but talk to your MDS. Mine would have me not take any medication for 12 hours (oh fun!) prior to my appointments. I'd have to remember my depends shields for those mornings (when I'm off, my bladder lets loose without warning. Sigh)

 

Edited by TexasTom

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