Refused DBS


#1
I have been working toward DBS over the last 9/12 & stated I would describe my
experiences. To save embarrassment I will not name names of hospital or consultants.
so let us say it was a very large teaching hospital with Mr S as neurosurgeon & Dr N
as neurologist.
I had seen Dr N before Xmas & he & my PD nurse both stated that I was a suitable
candidate for DBS so my next appt was to see Mr S along with Dr N. The first thing
was that Dr N again said I was suitable. No question & we all chatted amiably for a
while but I felt some thing was not right as Mr S muttered a few asides to Dr N and
then I got the impression that Mr S was not all in favour He then started to try to find
some medical reasons for not attempting surgery. In the end , after a bit of waffle he
came up with some reasons. There was a possibility that I might be worse after DBS,
& at 69 there was a possibility of brain bleed. Also he considered that I was coping
well with my present drugs & that I was too well for surgery. I , & my son who
accompanied me ,both thought these were a bit tame and there was a struggle e to
find excuses. as I was by now certain Mr S did not want to do me. Yes there were
some reasonable reasons but they were a bit on the thin side, but they were enough to
change Dr N’s mind & he started to change sides.
We left & on the way out my son & I swopped thoughts & both came to the same
conclusion for the reasons- CUTBACKS. We both got the impression that these days
one had to be in the last chance saloon to have DBS. One had to be very PD poorly
and that surgery was the last chance.
Now I have no proof or not even a hint of this, it was just a feeling that we had at the
time & thinking more about it I think that money came into the equation.
Has any one else out there had the same experience? I know the DBS is very
expensive but both my home neurologist, also Dr N & my PD nurse reckoned I was a
perfect case for DBS. It was Mr S who poured cold water over the whole idea &, with
a bit of egg on his face Dr N went with it by the end of the appt. Is this the way for the
future? Time will tell so let’s have some thoughts

#2
hi Christoper,
it must have been very disappointing and your explanation may well be correct.
On the other hand, DBS has quite high risks of something going seriously wrong and if the surgeon, the person holding the knife, is not happy then perhaps the dangers do outweigh the benefits. The surgeon probably has a better idea than the others as to the risk of the actual operation.
best wishes t

#3
Hi

Sorry of hear of your experiences. I think the older you are the higher the risks are from what is a very major procedure.

I found this which may be of interest from medtronic.com (http://professional.medtronic.com/pt/neuro/dbs-md/edu/patient-selection/index.htm#.UbuJufksmSo)

Use in Specific Populations

The safety and effectiveness of deep brain stimulation therapy for Parkinson's disease has not been established for the following:

Patients with neurological disease origins other than idiopathic Parkinson's disease
Patients with a previous surgical ablation procedure
Patients who are pregnant
Patients under the age of 18 years
Patients over the age of 75 years
Patients with dementia
Patients with coagulopathies
Patients with moderate to severe depression