>Mr. Meyer,
I saw your message on the PD Info Exchange Network this a.m. and
wanted to respond to your questions. It's great that you're doing an
article about this.
My mother, age 72, has had PD for over 30 years. She is a resident
of Phoenix, Az. Barrow Neurological Insitute in Phoenix is now preparing
to begin performing pallidotomies. I have made an appointment for my
mother to be evaluated for the procedure (actually her 1st appointment is
this afternoon).
I first learned about the operation by reading a Wall Street Journal
article in late February. This led me to join the PD Info Exchange
Network, where I've learned a lot more about pallidotomies.
I hope that, should my mother be an appropriate candidate for the
procedure, she would be relieved of some of the muscle rigidity, tremors,
and (slight) speech problems from which she suffers. Quite frankly, from
what I've learned from various communications through the PD Info Exch
Network, I'm skeptical that my mom will actually be a good candidate for
the procedure. It's my understanding that patients who have gained the
greatest benefits from the operation are younger, in their 30s, 40s and
50s, and have not suffered from the disease as long as she has. (I'm not
sure whether this is because the physicians performing the operation are
selecting the cases most likely to succeed in order to boost the initial
success rates for the operation or whether there are other reasons this.)
These facts notwithstanding, I want my mom to be get a chance at this
operation. Until fairly recently, she was able to live semi-independently.
In late Feb. of this year, she had to enter a nursing home. Were this
operation to result in just a modest improvement (even if it's only for a
year or two--as I am aware the operation probably does not give permanent
relief) in her mobility and tremors, she might very well be able to leave
the nursing home. That's really all we are looking for at this point--a
little more comfort, independence and dignity.
I don't know yet whether her health insurance will cover the
operation. She's on medicare and enrolled in the senior insurance of Cigna
Healthplan of AZ. I think it's probably a good sign on this score that her
Cigna neurologist gave her a referral outside the network to Barrow for the
purpose of having her evaluated for a pallidotomy.
To be honest with you, I don't much about the "hands on" experience
Dr. Kurth at Barrow with pallidotomies. It's my understanding that Barrow
physicians are cautious about the procedure and haven't performed that many
in comparison with Loma Linda, for instance. Since my mom will have her
first evaluation appointment today, I don't know what kind of surgical
approach Dr. Kurth and his colleagues are taking in performing the
operation. If my mom gets through the screening protocol, I'll write back
and let you know.
My mother and I are fairly comfortable with the risk-benefit ratio
of the operation. I discount the hysterical piece in the New York Times,
for example. Personally, I would feel more comfortable if my mom could be
operated on by the Swedish doctors who have a lot more experience (and less
hype) with the operation. Their studies and results above all else have
convinced me that this is a course of treatment worth pursuing. Also, the
fact that a respected institute like Barrow is offering the procedure is
reassuring. As for whether I'd feel better if there were lots of
controlled studies--sure, I would. But my mom doesn't have time for these
studies to be completed. Given the choices, she is willing to be part of
the studies and to take the risks of participating.
I think that I've answered all the questions you listed in your
message. I hope that you'll distribute your article through the Exchange.
Thanks.
--Elaine Madison
Hi. My name is Harris Meyer. I'm a reporter for the American Medical News, a
>weekly newspaper that goes out to doctors. I'm writing in the next few days
>about the controversy over the surgery for Parkinson's patients called
>pallidotomy. I would love to get responses from patients and/or family
>members on the following topics:
>
>-- Is this operation being offered in your area?
>
>-- Have you undergone this operation, or are you considering it?
>
>-- How did you hear about the operation?
>
>-- What kind of results did you get from the operation, or what kind of
>results have you heard other patients are getting?
>
>--Are you or other patients having any trouble getting health insurers to pay
>for this operation?
>
>-- If it's being offered in your area, how experienced are the local
>neurosurgeons with it? How are they doing it -- through electrophysiological
>mapping, or through stereotactic guidance (via MRI or CT scans and grids)? Is
>it being done as part of a study?
>
>-- Are you comfortable that the operation has been well enough established
>scientifically and that it's safe and effective? Does the issue of scientific
>acceptance matter to you?
>
>Thanks in advance for taking the time to respond to this request.
>
>Harris Meyer American Medical News ([log in to unmask])
Elaine Madison
Director, Community Service Center
(919) 684-4377
