 |
 |
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