DBS - why wait?
 

Hi all ...

I was diagnosed with PD 12 years ago, at the age of 44. I'm currently 56. For the first eleven years, I was treated with Mirapex and Artane, both considered agonist drugs and they worked like a charm.

Last year my symptoms reared their ugly head. Although my tremor is under control, and my stiffness is manageable, my feet stick so bad that (at times) I resort to crawling. The funny/sad part is that I can walk backwards and sideways, as well as go up and down stairs .... I just can't go forward!

My question is why they don't do DBS sooner, rather than later? Why don't they do this regularly with people with PD instead of putting us on Sinemet? I'm assuming they have a reason, but do any of you know why?

Thanks for your help!
there a r

i was scheduled for a DBS in NOV but rescheduled it. i got a letter from the healthcare provider stating that for installing DBS on both sides, i would be charged around $125,000 if my insurance wouldn't pay for it. it's the cost and the risk of complications that prevents insurance companies from paying for it sooner. then you have to add the cost of the programming sessions and replacing the battery(s) which i think is $25,000/side, could be wrong about that. and the huge cost if anything goes wrong and they have to open you up again. it's elective surgery. i could have had it done 2 years ago, wish i had with all the uncertainty surrounding obamacare. i delayed because i didn't want to be in a position where i had it done, trumpo gets elected and i lose my insurance and then would be possibly uninsurable and something serious happened like a broken lead and i'm bankrupt. i've got 3 years until medicare. it appears that obamacare will be extended 2 years.

Are you asking why they don't do this when you are first diagnosed? I'm 59 and diagnosed at 36. I have been putting it off for at least ten years until it just became unbearable to be me. My doctors wanted me to do it but I wouldn't do it basically because it used to have a higher rate of failure. Now that I got it I am not sorry I waited. I had to be sure in my mind. If I could take a few pills and be fine for eleven years I would be happy with that also. I was at the point where I had no life but strangely like you if I couldn't walk an inch but you put me next to a staircase I could run up and down it all day long. I also walked backwards a lot with my walker. I have been on sinemet in one form or another since the beginning. Do they want to do DBS on you now?

many thanks
 

Thanks for the input. I'm anxious to hear what others have to say! I have pretty good health insurance ... Medicare with Blue Cross/Blue Shield as my supplement. My premiums are that of a 70 or 80 year old, but I have very little outside pocket expenses. I'm too young to be saddled with this freezing s***! It depresses me something horrible. I'm an extremely happy and lucky go person, but this is beginning to get to me, especially since I had eleven good years.

The more people that weigh in, the better. Let me hear your thoughts! I'd like as much information that I can get. Then I'll approach my neurologist with questions.

Again, many thanks

i read these 2 books
1. life with a battery operated brain published in 2009. describes 1 person's experience starting in 2007, i'm assuming the risks have decreased since then. this person had complications around a year later which just brings up the need for people to support you during the whole process.
2. a patient guide to deep brain stimulation

i didn't do my normal research since it was my understanding that surgeons won't operate on you if they're not 100% certain you would be significantly better off and very low risk and i was told i was an excellent candidate since i responded well to l-dopa. i had to be recommended by my mds, pass the 2 psychological tests for depression and dementia, measure my urpds(?) movement score with and without medication I think there is high enough demand at the better institutions that they aren''t going to operate on you just because they want the money.

you can wait for something else, there is duodopa and another l-dopa pump that's doesn't require surgery like duodopa, there's a pig cell implant in phase2 in new zealand that might be approved only in N.Z. in 2018 and you'd have to live there for awhile if you could even get it. i kept waiting hoping there would be more of a cure but i don't see on coming in the next 5 years. if your neuro is willing to recommend you for testing and your insurance will pay for it then at least do the testing.. you can change your mind up until the day of the surgery. at least ror me, my surgery was scheduled 3 months after i was approved, so i wouldn't wait to at least take the tests, i was told the psych results were good for 1year. i think st joes and boston scientific have come out with more sophisticated DBS equipment, leads with more active points that might be worth looking into and what MEDTRONICS has coming out.

One of the "unpublished" guidelines for my insurance was "Medication no longer controlling symptoms after taking it for four years". If less than four years and Sinemet & Comtan (aka Stalevo) is not working.

If you do NOT respond to Levodopa (sinemet) you are not a candidate for DBS. If you have poor balance, not a candidate.

Obese. If you are overweight, higher risk so often insurance may deny DBS. I had dropped from 300# to 235# prior to surgery, so not an issue. Irony is after DBS, I'd gained weight and back up to 245# in part from not exercising post DBS.

I did go through a six hour Neuropsychological assessment. That was good, so I was considered an excellent candidate!

In years past it was considered a "last chance effort", now my MDS recommends it when medication wears off too soon. Amazingly, knock on wood, I have not fallen size surgery. My tremors are coming back after the "honeymoon period" post surgery, but on just a little medication.

There is always a risk during the surgery, not everyone has improvements. If you are healthy and active, and it keeps you moving then it worth while.

For me the decision to have surgery done is when I had lost luggage at the airport and couldn't use my voice nor write a note about what I needed. Clerk assumed I had been drinking all night, but it was just my meds were off after being diverted to another airport and a 24 hour delay getting home. Thankfully my daughter was their to assist me, but damn that was a horrible feeling.

Other than cost I can't see the reason for delaying DBS. I had DBS done 3 months ago and feel great. We traveled to LA area this past weekend and spent 5 days navigating the freeways there and I felt great with no tremor - simply awesome. I never could have done this before DBS!

DBS - more tailored approach might improve overall outcomes
 

Subthalamic Nucleus Versus Globus Pallidus Internus Deep Brain Stimulation

Subthalamic Nucleus Versus Globus Pallidus Internus Deep Brain Stimulation: Translating the Rematch Into Clinical Practice - Williams - 214 - Movement Disorders Clinical Practice - Wiley Online Library

Thanks for the great article! My surgeon and I talked about the GPI and STN destinations and decided on the smaller STN as the part of the brain to go to. I did have some affect on my verbal fluency (my neurologist calls it "thick tongue") but am able to work on that and feel great now! Most importantly the tremors are virtually gone and I've truly got my life back!

Great article, lot of info...thanks...

Eric