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Can you recommend any treatment, doctor or COE any where in the world to treat Camptocormia?

 

I am a 68 year old male. I have been suffering from Scoliosis  Kyphosis and Degenerative Disc Disease for 25+ years. But I managed with exercise and pain pills for all these years. I was diagnosed with PD in 2009. The drooping from the waist started in 2013 and in mid 2014 I heard the word Camptocormia.

 

It has exponentially increased my original pain to the point where I cannot walk or stand for 2 minutes a time.

Amazingly my GP, Neurologist, Physiatrist, PT or Cardiologist had never heard of it.

 

Can DBS help to minimize the pain? 

 

Thank you.

 

Kurush Maneckshana

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Our center has not had success in treating camptocormia with DBS though Dr. Volkmann in Wurtzberg Germany has reported a few successes.  We have not been recommending it and we stick to exercise, stretching and physical therapy.  It is hard to treat.

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A belated thank you for your reply. They say "Better late than never".

 

Has any progress been made in treating patients with PD induced Camptocormia in the past year?

 

My neurologist, who in the past had ruled it out, is now suggesting that I may want to consider it. He was very specific that there was no guarantee, but the odds of success have improved to 50%. He cited recent discussions of DBS as an early intervention tool and overall better outcomes of DBS. Unfortunately for me, there are no specific studies of DBS for Camptocormia, that he can reference.

 

Are you aware of any? Has your thinking changed from the earlier reply you gave to my post?

 

Thank you.

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There have been very rare reported cases of DBS helping camptocormia, but most of us have not seen any dramatic changes in this symptom with DBS.  We do not recommend DBS for camptocormia, but if it is indicated for other reasons then you could see if it helps the posture.  Some experts suggest the few cases it has helped had a severe dystonic type of camptocormia; however no one understands how to predict who may help (there is no characteristic giving away the DBS response when it rarely happens).

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I have a dear friend with diagnosed PD and severe (bent double) camptocormia  which is so distressing for him

Are there any new ideas on the camptocormia (other than DBS which you do not seem to recommend) that I could explore for him?

Any help appreciated

kind regards

roger h

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DBS has not in general been effective for camptocormia in our experience although there are a few case reports published.  I usually focus on physical therapy but there is a huge need for a better treatment.

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I have not had much success with PT and captocormia though many experts would argue that it may help to prevent fast progression and also to prevent falls.  I do not know anyone in UK who specializes in this area.  Good luck.

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The leaning is bad.  My mom's posture has gotten worse the past year and now she can't sit on the toilet without falling over to the side.  I have grab bars on either side to prevent her from falling all the way over so it's used to hold her up since her dementia prevents her from holding them as intended. She leans in bed as well.  After 10 minutes on one side of the bed she is on her way to the other side  and her head is always off the pillow.  She leans on the sofa when seated and I have pillows and blankets to try and corner her off but her body seems to push until she knocks them all down then she can slant at a angle. Walking her is a nightmare too because her balance is so bad.  This is something that needs to be greatly researched because it can affect anyone with PD as they progress. 

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I agree that we need to perform better research into leaning and camptocormia in Parkinson's disease.  One theory is that the degeneration in some patients affects the parietal lobe in a part of the brain that modulates where your body is in space.....

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We do not think the leaning to one side is simply rigidity.  It may however be dystonia and also partially the result of PD being worse on one side of the body.  Camptocormia and leaning are mysterious!

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Are there any updates concerning  Camptocormia ? I have this problem and looking for people and answers. Having botox treatment tomorrow, has anyone found this successful ?

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I will post this for you as there are not a lot of treatment options.  Physical therapy, stretching, exercise and occassionally muscle biopsy is helpful.

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Thank you Dr. Okun, it is hard to find anyone else with Camptocormia much less a treatment program that will help also. I see where there are studies using people with this but they are all hidden when I do searches. I am in about five places with huge numbers of people but can not find anyone else with this to compare notes with. Finding other people would defiantly be a big help so if anyone knows of anyone with Camptocormia or bent back syndrome please get in contact with me.

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