The following are copies of my exchange with Pat who has had a bilateral STN stimulator implant. I
reprint this with her permission.
Charlie
Pat.
Nice to " meet" you. I am considering STN stimulation. Where was your procedure done? Was it 1
surgery or 2 different times. Some surgeons do both sides at the same time and some do them on
different days. How long after the surgery did the turn the stimulator on? How long did it take to
"fine tune" the electronics of the stimulator.? What changes have you noticed ? Do you sleep with
it on or off? Any negatives? I think a lot of people on the list would like to hear your answers and
if you are not a list member may I post your response?
Thanks . I hope I didn't overwhelm you with all the questions bu this is an exciting development
and there are many of us who wish to know more about it. If I have it for a number of reasons I
will likely have it at NYU.
Charlie
patricia jorn wrote:
> Dear Barbara;
>
> I am probably the worst there is at writing of letters.
> It has been on my mind to write to you concerning the surgery that I
> had the 17th of Nov. 1998, the Bilateral Subthalamic Nucleus
> Stimulation.
> The surgery is a wonderful thing and I feel that it should be approved
> by the FDA in the US., and the cost should be covered by insurance.
> The last four years have been miserable to say the least and as of now
> I am able to maneuver about independently not having 24 hour care. I
> go next week for adjustments to the units and feel confident that I
> will be even more independent.
> Anyone wanting to know more about the surgery can contact me at my
> e-mail address.
> I want to Thank You for all the help over the past few years. It was
> several years ago when Stidman and Allen signed me on the list.
> I have learned a lot from reading the different post.
> Thank You, Patricia Jorn, 60/17
References:
1 , 2 , 3
Hi!
Copy of letter sent to Valley Parkinson Support Group, thought you
might want to read. Will answer your questions in seperate letter.
You asked me to write about having my surgery and I have written to
several people who have inquired, but no exact form as they all ask
something different.
After much research and phone calls. I contacted the manufacture of
the device "Activa" implants from Medtronic's. They suggested I call
Dr. Richards in Berkeley, CA. and they referred me to Dr. Tamas at
Orinda, CA.. Upon calling his office I was told that the implant had
only been cleared by the FDA for one side and it was DBS for tremors.
After reviewing the information I called back and setup an
appointment for consultation with Dr. Tamas. This was on 7/10/98 in
Orinda, CA.. Needless to say I was excited that maybe there was hope
to get rid of the tremors that plagued my life. This was not to be as
when we met Dr. Tamas, he felt the surgery would not be for me.
Instead he felt I was a candidate for STNDBS on both sides. This
surgery was not approved by the FDA and as of this date is still not
approved. The insurance companies will not pay for the surgery
($55,000.+). Needless to say I was still interested, but had to find
some way for this to happen. The surgery is approved in Europe,
Canada, & Australia. Dr. Tamas was willing to do the surgery if we
could get the permission and funds to pay for the surgery.
I returned home disappointed and determined to fined away in which to
have the surgery. At the end of July we started the work to get
approval of the FDA and Medicare. With the help of Dr. Kutchzer at
the Pacific Neuroscience Institute in Orinda we proceed to request
permission for the Bilateral STNDBS surgery. A lot of phone calls and
conversations, permission was granted the first part of October so
that I could change my insurance back to medicare. (this is costly as
I no longer have full coverage or drug ) they proceeded to get the
necessary paperwork done by the 1st of Nov.. Then I was given date
for surgery & est. of my charges (approx. $12,000+). This being
another hurdle to get past. With this accomplished I set things in
motion for he surgery at Summit Medical Center in Oakland, CA. the
morning of 11/17/1998 at 7 a.m.. 11 1/2 hrs later the surgery was
complete and was doing fine. The next day was rest and the following
morning I was released and returned to Sanger, CA.. On Dec. 16, I
returned to Orinda and they turned the devices on very little, but the
improvement in my condition was remarkable. I am improving daily and
will return on 1/20/99 for adjustment to the devices.
Hope I didn't bore you with the details, will keep you informed.....
Until later,
Patricia Jorn
The best of luck to you in your up coming surgery..... You won't be
sorry... you'll wonder why all the fuss to get the approval.
your questions----
1. where --- Summit Medical Center, Oakland, Ca..
2. one or two surgeries ---- one - 11 1/2 hours long
3. turned on --- they were turned on after surgery for test and turned
back off for 30 days, then turned on very little for another 30-45
days.
4. How long to fine turn --- it depends on the Dr. and the
individual- probably 90 days???
5. I sleep with them on now; don't know about next time. In fact
they are on all the time.
6. You can use any information I have as I feel this is exciting and
will be glad when the local Drs. can take care of the many people who
deserve to have some hope in their future.
Thank you for inquiring and the very Best to you,
Patricia Jorn
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Charles T. Meyer, M.D.
Middleton (Madison), Wisconsin
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