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Dr. Okun

DBS Gait Problems

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Dear Doctors,

I wrote to you a few days ago aboutmy walking problems after bilateral DBS

operation in May 2005 but I decided I wasnt specific enough in giving

you info, so here I am again!Pre-op.-was active,walked 10-14 km daily,lead

an independent life although bothered by increasing stiffness atttacks

plus on/off side effects of medicines-but at my best on medication was

very good.No gait problems.Post op.-am now housebound, can only walk

max.2km,very slow with difficulty and increasing back pains.Gait problems

started as soon as they started programming, but stimulator was turned on

a couple of days before and I became stiffer.No "honeymoon " period.At

one point 6 months after op.the neurologist turned impulse frequency to

130,amplitudeto 1.5 both sides,contact points were 1 and 5.Ihad to be

admitted to hospital a day later-completely immobile,stiff but they

couldnt detect it by normal tests.Happened again after a year but not as

dramatic as amplitude was 3,0 both sides.MRI in July showed both

electrodes in subst.nigra as stated before.Otherwise have a new set of

symptoms which all disappear when stimulator is turned off.Neurologists

here say these symptoms are progression of illness.Loss of all "small

movements"automatic in gait and rising up from sitting pos., voice amongst

others,but everything comes back when stimulator is off.I am looking at a

wheel chair existence much earlier than expected.Numerous standard

tests.ANy ideas?MANY THANKS Anna Maria Ps.Have got dystonier in both feet

since op.

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I would recommend getting a second opinion.


If you can turn your DBS off and manage with medications and this results in significant improvement then the location or programming of the stimulator may be non-optimal.


A second opinion with imaging, measurements of the lead and checking thresholds for benefits and side effects may be useful to sort this out. Checking the UPDRS PD scale in multiple states may also be helpful as may be a fresh look at the programming.

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