PPN DBS surgery
 

It's been awhile since I last posted, but I have been keeping up with the posts throughout this time. My wife, who is now 64 was diagnosed 8 years ago has Postural Instability and Gait Disorder (PIG-D) subtype PD. She has never had a tremor, but after her 4th year with PD her condition began to deteriorate rapidly. The most prominent symptoms were balance and falling problems. Sometimes she would fall 10 times a day or more. We had numerous visits to the emergency room with broken elbows and so on. Prior to the PD she ran scientific research organization with me which she helped co-found.

She has been on sinemet and mirapex for five years and these improved her stiffness, but did nothing for gait, balance and falling. (At higher doses, the sinemet and mirapex actually made her falling worse.) In trying to find something helpful I looked into STN DBS and read that this would probably not be helpful and might even make things worse.

After much research I starting reading the work that has been done is several places around the world, but especially at Toronto Western Hospital, by Lozano, Moro and their group their on PPN DBS.

Long story short, Susan had PPN DBS in Toronto this past January. It has taken her neurologist here in Boston about 8 months to get the programming settings perfected, but the results have been nothing short of spectacular!

She is not falling, she is able to walk quite well, she was basically unable to sit up on a chair for any period of time without sliding down and is totally fine in this regard now. Even her stiffness has been substantially reduced and her sinemet and mirapex have been reduced by 30%. The other interesting thing that has happened is that her very severe pain problems are gone. (Drs believe that this is because she is not tilted to the right and posturally off balance anymore.)

She has been able to get into intensive physical therapy and also works out with a trainer once a week (she used to do so 3x a week), but we'll take once! We both pray that these results are sustained for some extended period of time.

PPN target DBS has been done in relatively few places and requires a good deal more skill than STN DBS. The PPN target is more diffuse and harder to locate accurately.

I think that if and when you are considering DBS if your PD is PIG-D subtype the likelihood of improvement with STN isn't great as some people on this list have described. However, PPN target DBS when done by someone who knows what they are doing offers hope for those with PIG-D where there are few other options.

Although compared to STN target DBS much less research has been done on PPN target DBS. However, Lozano and his team have done some excellent case study series and have found substantial benefit.

I hope that more groups in North America learn about this approach and that insurance companies begin to understand that there are people for whom this is the best option.

Best wishes to all,

Howard

i remember your interest
 

icon was hit acccidentally.

What do they do differently in Canada? They certainly have the most advanced treatment but I think NIH might be going to have a clinical trial - don't quote me because the NIH's right foot doesn't always know what the left foot is doing.There are many agencies in the NIH. maybe we are just the most on top of it because it's what we do.

I don't know what postural and gait pd is- its a subtype instead of a symptom? my balance and gait problems are because of my right side becoming so rigid it throws me off. But i didn't have trouble sitting up in a chair. so it was affecting her spinal column and pelvis ...yikes.

tell us more when you can. i've seen you around here looking for information and i'm glad you found that dbs is happening, do you know if it is FDA approved or did u just make sure you went to the best?

thanks for sharing

adding does she take meds? if so what and how much of a reduction if you don't mind sharing that information.
also: i see you said reduced meds by 30 %. could you translate that to number of pills and what mg ,etc.

this is the kind of specific we need to hear from patients. not researchers or pharma. maybe the percentage is irrelevant if she is not falling- that would be 100"% worth it right there.

Ppn dbs
 

Paula here is some information on PIG-D from the MJFF site: http://www.pdonlineresearch.org/pdgu...t-disturbances

My company works extensively with NIH and the FDA. The FDA can be helpful or very unhelpful to consumers. It is very difficult to get permission to do PPN surgery in the US because of the FDA...we tried and failed here first. I am glad we ended up going to Canada, although it was very costly to do so. In Canada the team at Toronto Western got permission to do Susan's surgery in three weeks from Health Canada. We waited for one year through a center in Florida and never got permission. If you go to Clinicaltrials.gov you will see that the only current trial of ppn dbs is taking place in France.

For Medtronics, the maker of most of the DBS stimulators there is no particular interest in supporting or pushing trials of PPN DBS. They can make enough money from STN DBS. It is a situation where there is insufficient motivation on anyone's part to push forward with the studies and research which would get this surgery more widely available. Also, since the PPN surgery is harder to do successfully doctors and hospitals aren't interested in increased risk that such a surgery would entail. Frustrating situation which at the end of the day is not good for patients.

well there it is plain as day
 

i guess i thought gait and posture instability were the natural progression of rigidity. i can see when mine goes bilateral its all over. i learn something new every day tho. thanks Howard.

Thanks, Howard, for this very informative thread, and best wishes to your wife. I hope the DBS continues to bring improvement in the quality of her life and yours. It is always good to read of people for whom there has been this kind of turn around.l

It was very interesting to read. I had never heard of PPN-DBS procedure. Your links were interesting too, I had heard of PIG-D as a subtype, but did not have any idea that there was a surgery that targeted it.

I lean and fall, and have no tremor, so your post was of special interest. I have noticed quite a few people who have posted on various forums who seem similar, and echo your wish that this information should be more available. As someone whom STN-DBS seemed to offer very little I had quite a closed mind to surgery. At the very least information like this opens up a discussion, and at best it has the potential to help transform things.

Thanks again,
Lindy