Nigel
I was sorry to learn of your problems  of DBS.  Mine was very  
successful.  I had a total of 3 operations.  Two on the brain itself  
and the third to put the device in  my stomach and connect the  
wires.  It took 3 trips to get the programing done and take me off  
the stalevo (6 times a day) and Requip (3 times a day)  I now take  
only 25/100 of carbidopa/ levodopa 3 times a day.  I have moved into  
my own apartment and am driving again.  It was a miracle.
Pam


On Mar 23, 2011, at 6:13 AM, Nigel Harland wrote:

> Hi,
> I had an experimental bi-lateral DBS targetting the PPN area of the  
> brain in Feb 2009, followed by a standard bi-lateral DBS in Jan 2010.
> To cut a very long and complicated story short, here I am over 2  
> years later and I have only just managed to get to a level which I  
> would describe as better than I was pre-ops.
> On the plus side my tremor has disappeared, so has my dyskenesia,  
> both of which were causing me great discomfort,
> on the negative side, I have not managed to reduce my Madopar  
> ( sinemet equivalent) dosage, I presently take 250mg 3 times day,  
> which is more than it was pre-op, and this has a very negative  
> effect on my speech.
> And I still fall over which is something that the experimental ppn  
> dbs was supposed to help.
> Conclusion: I suppose that I am overall better than I was pre-op,  
> but it has been a long, hard journey.
>
> Regards,
> Nigel Harland
>
>
> ----- Original Message ----- From: "Rose Jardim" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Wednesday, March 23, 2011 7:35 AM
> Subject: Re: DBS
>
>
>> Hi Janet,
>>
>> My Dad had DBS done at the end of November 2010.  You need to have  
>> an assessment done in order to assess whether you qualify as a  
>> good candidate for the surgery.  This involves a number of  
>> different opinions and tests.
>>
>> There is alot of information on the surgery itself on the Internet  
>> freely available and on line support groups.
>>
>> My Dad has finally settled down - this is after 3 months of  
>> healing.  His reaction to the surgery was very bad.  He became  
>> very aggressive, very confused and very ill.  The Dr's did tell us  
>> to hang in and wait as it would all settle down.  At the time we  
>> did not trust this opinion but alas 3 months later and he is doing  
>> very well.
>>
>> They are still adjusting the stimulator every week but his  
>> Parkinson symptoms have reduced significantly.  He battles to walk  
>> still due to muscle damage but he is working on it.
>>
>> I wish you well with your research.
>>
>> Kind regards
>>
>>
>>
>>
>> Rose Jardim
>> Jardim Chartered Accountants
>> (d) 011 894 2093 (m) 082 829 3014 (f) 086 568 3879
>> [log in to unmask]
>>
>>
>>
>> -----Original Message-----
>> From: gervase81 <[log in to unmask]>
>> To: PARKINSN <[log in to unmask]>
>> Sent: Wed, Mar 23, 2011 8:00 am
>> Subject: DBS
>>
>>
>> I am writing for some advise and support. I am 58 and have been
>> iagnosed for 10 years. I was taking sinemet 4x day 25/250 and comtan
>> 00 mg 4x. My doctor recently changed me to stalevo 200mg. 5x per day.
>> y dyskiniseas on all the medications are getting bad and my on  
>> time is
>> etting less and less.  If lucky I might get 2 hours of on time  
>> between
>> ach dose.  When tired or under stress sometimes the medicine doesn't
>> ven work.  My doctor is recommending DBS but I don't know what to do.
>> live on Long island outside of Manhattan.  My question is, has anyone
>> ad the surgery and did it help?  What is everyone's experience with
>> he surgery?   I     plan on getting a second opinion can anyone
>> ecommend someone in this area?  My movement disorder doctor and the
>> urgeon are associated with North Shore University Hospital.  By the
>> ay, I am still working as a teacher but think I will have to give it
>> p shortly.
>> Janet
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>>
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