DBS eligibility


#1

Hi everyone,

I am 65 yrs & live on the Wirral (close to Liverpool).  I was formally diagnosed with PD in August 2009 although I 'self diagnosed' approx. 1 year before this date.  My initial symptoms were tremor to my right hand for which I chose not to take any medication offered. Since my initial diagnosis my PD has progressed considerably and my current status is as follows;

Tremor to both hands but very severe to my right hand. This results in painful wrist & elbow joints and great difficulty getting to & staying asleep, primarily due to the tremor on my right hand. I've also had dystonia (painful !) to my right foot over the past 5yrs.  Both of my legs have tremor although this is currently manageable. I am steady on my feet although beginning to shuffle & lean forward. Have general fatigue & my speech becomes impaired when tired or stressed. I have 'tired / limp' facial features and have become a little socially withdrawn mainly due to very bad tremor.

My PD has progressed considerably since my initial diagnosis & have been taking medication over the past 6 or 7 years. This has included trying Selegine, Rozagiline, Riponrole, Pramipexole & Co-Beneldopa.  I am currently taking Rozagiline 1mg & a low dose (100/25mg) Co-Beneldopa. I have had no positive benefits from this medication & believe that the Co-Beneldopa has brought on Postoral hypertension and day time sleep disorder.

Over the past couple of years I've looked into DBS believing this to be the only realistic treatment to reduce my tremor.  I have found on the internet what I believe to be the criteria for DBS eligibility which is quite detailed which broadly distills down to having tried various medications & quantitive measures of PD symptoms. I have serious reservations about increasing my dosage of Levadopa in order to satisfy this DBS eligibility, especially because the Co-Beneldopa I currently take is responsible for the onset of day time sleep disorder & postoral hypertension. Also the increased risk of developing Dyskenesia when taken over an increasing period of time.

MY QUESTION - has anyone had any experience or advice about asking for DBS eligibility, treatment locations etc

Thanks for reading my post, regards John (alias Marcantony)

 

 

 

 


#2

Hi Marcantony,

I'm sorry to read your medications don't seem to give you any positive benefits.

Please feel free to give us a ring on 0808 800 0303 (Monday-Friday: 9am-7pm, Saturday: 10am-2pm) if you'd like to talk to our trained advisers (including specialist Parkinson's nurses) about DBS.

We'd advise you to speak to your consultant about DBS, as they will be able to give you lots more information.

Best wishes,

Ilona (Moderation Team).

 


#3

Hi Marcantony

My consultant at the Walton centre suggested that DBS might be the right way for me to go. I resisted for about 2 years but as the Parkinson's was progressing rapidly with high levels of medication having less and less effect I finally agreed to be assessed for DBS.

At this point I was referred to a neurosurgeon at the Walton centre to see if I was a suitable candidate for the surgery. The rest of my experiences so far are detailed in my blog debversusparkinsons.wordpress.com. Please take a look.

My issue at the moment is that although I am 7 weeks post surgery and my stimulater has been turned on it is on at such a low level that it has no effect. My next appointment was not until February and I feel as though I've been through all this trauma for nothing . I have now managed to get an appointment for later this month so hopefully things may progress after that.

Regards

mrtoad


#4

Hi Liona,

Thank you for your reply and offer of advice from your trained advisers on DBS.  My next routine appointment about my PD is on the 21st December. It is then my intention to discuss DBS and weather my consultant feels I would benefit from it along with my eligibility.  Should I need further advice about DBS I may well contact your advisers and thank you again for providing the contact details.

regards, John (alias, marcantony)


#5

Hi mrtoad,

Thank you so much for taking the time to reply.

Sorry to hear that you're having to wait a little longer than expected for the 'customised tuning' of your stimulator. As your husband appears to have discovered, this 'pause' is normal and not a cause for concern. Although I can only imagine how frustrated you must feel having to wait to feel the benefits after all the trauma of DBS surgery.  I really hope your rearranged appointment goes well and your rewarded with improvements in your PD condition .... I'm sure it's the best Christmas present you could wish for !!

Thank you for pointing me to your blog, which I have read. It has been very informative & helpful. I'm inspired by your positive attitude, bravery and that you haven't lost your sense of humour !   DBS surgery really is a challenging proceedure. 

I will follow your blog with great interest and hope that all goes well for you. 

my very best wishes, regards John (alias marcantony)