i was diagnosed 22 years ago (an 63 now) and had back pain that was
cripplingn  - the pd doc tried everything - injections, therapy - but it
got worse.  As a last resort they sent me to allegedly the best surgeon in
LA who smiled, said surgery was the answer and that I would be up and
running 2 weeks after and healed in a month.  I did it. And only then
realized how bad pain could really be.

the surgeon made light ofthe PD and the surgery nearly did me in because it
didn;t deal with the cause.  % surgeries later - each to repair horrendous
damage done by the prior - I found someone who said that the state of the
art was triage and finding a level of pain that was marginally tolerable.
 THe round of surgeries cost was over a million dollars and two years of my
life - to briing me back essentially to where I began.

BE WARY ABOUT SURGERY - however you interpret that.... it is a risky
business to all except the surgeon.  Les

On Fri, Oct 5, 2012 at 6:26 AM, Mary Ann Ryan <[log in to unmask]>wrote:

> Linda, I don't know what planet your neurologist lives on, but pain is
> definitely part of the Parkinson's Disease profile.  My husband suffered
> from terrible body aches long before his disease became advanced.  My
> cousin also has PD and told me, "No one ever prepares you for the amount of
> pain you will have to suffer with PD."  Over and over again on this list
> and the CARE list, a list for PD caregivers, the challenges involved in
> pain management have been discussed.
>
> I hope that you are seeing a movement disorder specialist.  Not all
> neurologists can deal effectively with PD.
> ------------
> Mary Ann (CG Jamie 68/28 with PD, died 11/20/07)
>
>
>
>
>  I would appreciate some input from other people with Parkinson's in
>> regard to the issue of pain. I have been told that I have degenerative disk
>> disease with a narrowing of the spinal column in the lumbar area. I was
>> also told that my left knee was bone on bone in 2006 and would need a
>> replacement sometime in the future. I was diagnosed with fibromyalgia in
>> 1997's and diagnosed with Parkinson's disease in May of 2010.
>>
>> It seems like there are so many factors that I am very hesitant to do or
>> have done any invasive measures such as knee replacement or back surgery
>> because I feel like it will not resolve enough of the pain issues to be
>> worth the risk and the attempted rehabilitation. The neurologist I have
>> just been seeing recently made the statement that the pain would not be
>> from Parkinson's. I'm not sure if she thinks that pain is not a part of the
>> disease or that she feels that the pain I described wouldn't be from the
>> disease. My current back pain appeared to become acute after swimming a few
>> days in a row. It felt very good in the water to twist and turn my body but
>> after that, movement became more difficult than my pain level increased
>> radically.
>>
>> It was very helpful to be on this list and receive the information about
>> briefings through the Parkinson's organization. I was able to get the
>> briefing on Parkinson's and pain and found that most informative. I plan to
>> be reviewing many of those articles. The recent stem cell article was also
>> very interesting.
>>
>> I would appreciate any input from others as to their experiences and
>> thoughts on the little bit of information that I have given here.
>>
>> Thanks, Linda
>>
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