Diagnosed with tremor dominant PD 2007, was doing pretty well except for tremor. But now I also have severe lumbar stenosis. with very bad searing pain and muscle cramping in right hip & leg with any weight-bearing, preventing walking, shifting weight in bed, etc. Tried 1 epidural, physical therapy, etc., but no lasting relief. Hoping to avoid surgery. Can anyone share your experiences with this? What helped? Anyone tried Neurontin? Related to PD or dystonia? It's wrecking my life. Any comments greatly appreciated.

Acupuncture saved my life, literally!

Thanks, bluedahlia, so glad you got relief. But I tried 6 expensive sessions of acupuncture with someone very highly recommended & had no results whatsoever.

I have similar symptoms but less severe, with mild stenosis. That is, stiffness and soreness in right hip, TFL, lumbar spine, with cramping and burning in anterior thigh. Went the usual route of conventional MD's and physical therapy. The only thing that is helping me is a good chiropractor. First, finding a good one. Then, going 3x a week for a few months. Also, C-1 adjustments in neck are helping PD symptoms, such as tremor. Better blood flow or nerve communication, I guess.

I have spinal stenosis but also 20 years of advanced PD. The dystonia and dyskinesia haven't been so good for my spine. I have had two cervical fusions C/3 thru C/7. There is another herniation just below the two fusions. They tell me that as the Parkinson's keeps pulling me over that my spine will continue to break down. But I'm going to avoid another.surgery as long as possible. The pain can be excruciating. I also show arthritic changes making things more bleak.

I tried two sessions of acupuncture but didn't feel like it did anything. Maybe I should have stuck with it. Reiki makes me feel better while in the sessions, but I can't have someone following me around cradling my head or touching my neck. Yoga helps keep me flexible and less rigid, but as you know can get expensive and insurance doesn't often cover as they consider those such treatments as alternative therapies. I have been on Neurotin,but didn't see much improvement, and it messed up my other meds.

So, for me, my relief comes from strong pain meds and periodic procedures thru a pain management clinic. I am careful to not use too much, and often have to sit or lie down until the disabling pain subsides enough to get up and go again..

It's sad, but the only way I get relief is to aggressively treat it. Three doctors have suggested deep brain stimulation, but I just don't want to take such a chance with all these other problems, and using it for pain management doesn't have much I find promising in research.

I really hate to hear of dystonia and dyskinesia happening to anyone. The one nice part is not everyone with PD will have dystonia and dyskinesia. Just lucky, I guess. Another well known fact is what works for some does not for others.

It's frustrating.
Peggy

Thanks for your replies. It now appears virtually certain that I will need spine surgery soon to correct the problem. I've tried meds, acupuncture, physical therapy, and chiropractor, but no improvement. Yesterday the neurology specialist P.T. told me the only solution would be surgery, because my stenosis is severe. I'm so bummed I can't begin to tell you! I dread surgery of any type. I think it's hard on anyone but esp. on Parkies. But I see no alternative, can't take it anymore. Pain is bad & I'm basically disabled, can't straighten up, stand for long, walk or do any of my normal activities. My poor husband has to do everything. Very hard on him. Painkiller meds didn't help & also caused constipation. I must say, I'm depressed and anxious about this revolting development! If you already have Parkinson's, you shouldn't have to get anything else. Oughta be a law!