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Thank you so much for sharing your experience. I hope others who see this will know that I am most greatful to them for giving me input, also. I have anumber of things including a court case this week so will be unable to respond specifically, like I would like to. I'll be back on in communication mode by the end of the week and will be checking the list regularly till then. Linda ----- Original Message ----- From: "lma2762" <[log in to unmask]> To: <[log in to unmask]> Sent: Saturday, October 06, 2012 9:17 AM Subject: Re: back, neck and leg pain >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 >>> >>> ------------------------------**------------------------------** >>> ---------- >>> To sign-off Parkinsn send a message to: mailto:[log in to unmask]** >>> utoronto.ca <[log in to unmask]> >>> In the body of the message put: signoff parkinsn >>> >> >> ------------------------------**------------------------------**---------- >> To sign-off Parkinsn send a message to: mailto:[log in to unmask]** >> utoronto.ca <[log in to unmask]> >> In the body of the message put: signoff parkinsn >> > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn