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D B S

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mckchart
D B S

Hi its been sometime since i was last on the forum but any advice would be of great help.At present i am on course for Deep Brain Stimulation due to my meds not doing what they are supposed to,nightime (sleep)is a joke and if i do manage to get any i have great difficulty in walking when i awake,so if anyone out there has the same problems please get in touch regards  Mick Charters

mckchart

hi folks underwent DBS  on 27 june 2017 and was released from hospital following day story so far  the right upper arm and groin right side dont like the stimulation ,Una my parkinson dbs nurse is  working on my gait and walkng  =very poor at present ,can anyone enlighten me if they are having similar problems,the right arm upper muscle tore two weeks ago after increase in stimulator setting

Tractorman

Hi Mick,

I had DBS installed about 3 weeks after you, was yours bi lateral? Was yours aimed at the STN or one of the other sites?

Tractorman.

mckchart

Hi Tractorman the main problem  is my right side but any  increase in stimulation results in  severe pain both in groin and right arm.I also had left knee replacement which does  not help my ability  in balance and walking .I have been informed it can take up to a year to programme DBS correctly but on visiting other sites ie american patients they seem to think thats not the case and it can be achieved quicker.have you any comments on that one??

Tractorman

Hi,

Did you get switched on straight away post op? I waited 6 weeks which was the plan from the start. I  was driving and back at work (Desk job!) post op week 7.

Have you been able to reduce meds compared to pre op levels?

I've got the "kit" made by Boston Scientific, is yours the same?

Tractorman.

mckchart

Hi  yes was switched on post op  as for meds still on same pre op due to stimulator switched off when muscle  tore in upper right arm gradually increasing now R=2.2 L=2.0 and the make is same as yours

mckchart

Hi Tractorman i had driving license revoked some time ago and last year took il health retirement from Formica ltd having worked there for 30 year me being now 57 but feeling 97now and again

Tractorman

Hi, Originally set to R=2.6 L=3.3. Currently R=1.6 L=3.3

I had to wait the 6 weeks for switch on whilst maintaining pre op level of meds. Got switched on, the Tuesday cut out 4 x 50/200 Sinemet CR straight away, by the Friday we cut out 4 x 200 Entacapone as I was getting more med induced dyskinesia than ever.  Was taking 2250mg of pills daily now on 450mg daily.

Balance still poorish same as pre op as expected.

I've got a choice of  2 programs on  my remote, stayed with program 1, Prog 2 should be better for walking, as yet untried.

It is pretty much a suck it & see situation as there doesn't seem to be one program fits all. Your torn muscle must be pretty frustrating to say the least.

Tractorman.

Tractorman

Hi Mick,

I can send you my mobile number on a PM if you want a conversation another day.

Tractorman.

mckchart

Hi mate yes forward your mobile number i will give you a ring .let me know the best time to call       speak soon           regards  Mick