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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Pain
Mom has complained about pain in her hip for a couple of months. But when I ask her doctor to check it, Mom looks at me as if I were the one hallucinating and tells the doc that she has no pain. Tylenol is about all we have to work with because she can't take Advil, as she's on blood thinners. If the pain isn't from the LBd, LBD is still involved since Mom won't or can't tell her doctor about the pain.

Back surgeries were mentioned. I had one other thought. After my fusion, I did a bit of reading and read somewhere that once you have fusion on one disc, the ones around it are weakened, making additional pain and surgery likely.


Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Tue Oct 19, 2010 4:37 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Pain
A few years ago, my husband was also complaining [to me] about pain in his left thigh. But when we would see the doctor he would say things like, 'Well, it's not really pain. It's weakness', or something like that. He was totally unable to describe the pain. They did X-rays and an MRI and found nothing. His neuro attributed it to stiffness from the PD component of Lewy. For whatever reason, after several months it disappeared. I think they are sometimes unable to describe what it is they are feeling. Frustrating to us who are trying to help them.

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Tue Oct 19, 2010 8:15 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Pain
katelu wrote:
Back surgeries Kate

Kate , A note on back surgeries, often when fusions are done it does effect the other disc's and future surgery could be a possibility. My Doctor told me if you are having surgery for pain , the pain will most likey be there after surgery too, he told me to only consider surgery if it interfers with other organs.
Last year I had such progressive pain in my hips and legs and everyone was sure it was my back and I do have 2 disc's that arent great with stenosis, turned out most of my of pain was coming from a artery issue, I had the by-pass surgery in late June, long recovery but I can tell you my back pain is minimal now, if I do something I shouldn't I might get a little stiff but goes away in a day or so.
My vascular surgeon told me he had a patient that had many back sugeries and it turned out to be the very same thing I had.

Irene Selak

Tue Oct 19, 2010 10:30 am
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Joined: Thu Jan 28, 2010 4:42 pm
Posts: 59
Location: Florida
Post Re: Pain
My mom has had several kyphoplastys (basically, putting "cement" into fractured disks) on her back. After the last one which was a year ago, she didn't do well and came home from the hospital. At first, I thought it was from the surgery or perhaps from other weakened disks. She was sitting in her recliner most of the day and was experiencing the "lewy lean" to her left side. After a few attempts to diagnose her problem, her dr finally diagnosed it as "positional" pain as it was only on the left side. He prescribed Gabapentin and started with a lose dose, gradually increasing it and her pain was eliminated completely. So, I don't know if your mom has the "lewy lean", but that's what mine has and the dr was right on target with both the diagnosis and remedy. Of course, now she's in the bed most of the time so that's not an issue anymore.

Wed Oct 20, 2010 9:42 pm
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