| Personal experience |
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10/07/2012 14:57
Putzo 
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10/07/2012 14:57
Putzo
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Re: Personal experience
callie:
Putzo,
That is great that it is working for you. I used Aveeno lotion (no fragrance).
Question, how much pain have you had? I had almost no pain during the whole process (29 stitches). My surgeon surprisingly said that was normal.
Honestly like I said the build up to the surgery was the worst part...other then normal discomfort there really was no after pain. I am happy I chose this route
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10/17/2012 17:47
mobaygirl 
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10/17/2012 17:47
mobaygirl
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Re: Personal experience
I am at my wits end. Everything I have read and my Drs all say I should not be in pain but I know when I hurt and with my developing Dupuytrens my hand is in constant pain. Driving, shopping, typing, gripping anything with my right hand feels like a hornet stinging me. I was given 1 cortisone shot that gave me about 4 days relief so my Dr decided that was not the route to go. He now wants me to do physical therapy but I can't see how that is going to help with this sharp constant sickening pain.(also the physical therapy group he referred me to is questionable as they made my first appointment with a therapist that doesn't even work on the hands) I have a high tolerance for pain so for me this is extreme. I asked my Dr. about radiation therapy and he poo pooed me so fast it made my head spin.
I am in the Seattle area and if there is anyone who can recommend a Dr in this area who has experience with Dupuytrens I would so much appreciate receiving the information.
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10/17/2012 18:10
moondanc 
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10/17/2012 18:10
moondanc
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Re: Personal experience
mobaygirl:
I am at my wits end. Everything I have read and my Drs all say I should not be in pain but I know when I hurt and with my developing Dupuytrens my hand is in constant pain. Driving, shopping, typing, gripping anything with my right hand feels like a hornet stinging me. I was given 1 cortisone shot that gave me about 4 days relief so my Dr decided that was not the route to go. He now wants me to do physical therapy but I can't see how that is going to help with this sharp constant sickening pain.(also the physical therapy group he referred me to is questionable as they made my first appointment with a therapist that doesn't even work on the hands) I have a high tolerance for pain so for me this is extreme. I asked my Dr. about radiation therapy and he poo pooed me so fast it made my head spin.
I am in the Seattle area and if there is anyone who can recommend a Dr in this area who has experience with Dupuytrens I would so much appreciate receiving the information.
Mobaygirl I am sorry to hear about your pain and difficulties. What kind of doctor are you seeing? Obviously you're not getting the kind of help and care you need and deserve. Physical therapy will NOT do a thing for DD disease! It may be slightly helpful for some after NA but I didn't find it so except for the "hand putty" they gave me for exercises to do at home.
This forum provides a list of doctors-- US, UK, etc. who do NA and there is one in Seattle. Here's the link to the list of doctors:
http://www.dupuytren-online.info/NA_list_North_America.html
Below is the information for the Seattle doctor that does NA
Dr. Jerry Huang, Assistant Professor
Dept of Orthopaedics and Sports Medicine
University of Washington Medical Center
Seattle, WA (Washington)
www.uwhand.com
Hopefully you can get an evaluation there to see if RT will benefit you and whether you're at the stage where you need NA and perhaps a referral for radiation therapy. I live in California and would walk to FL to get treatment from Dr. Charles Eaton, the pioneer of NA in the United States. He is simply the best there is. Please check out his web site for information and types of exercise to do and NOT to do.
http://www.dupuytren-online.info/NA_list_North_America.html
One of the things that I have found helpful and that you will find on Dr. Eaton's website is the use of dowels cut to small 8-10" lengths. You put the dowel on a flat surface and then roll your hand gently over it, giving it a massage. I also find the passive stretching exercises very help. You do NOT want to hyperextend or stretch your fingers back as there are studies that have shown this aggravates and stimulates DD. You might see if you can buy some finger putty at a local PT office and try that. You could also try hot and cold contrast baths to see if that helps with the pain. I have also found that a warm rice filled bag heated in the microwave for 2-3 minutes is helpful for pain. All of these things are only for pain-- they will NOT help the underlying cause of DD.
I have had RT and I did find it helpful for relieving a bit of pain, for making my palm more supple and for slowing down the disease in my palms. Unfortunately, my disease was too advanced for RT to do much good in arresting DD in my fingers. I'm a very, very outspoken opponent of Xiaflex injections, know at least a dozen people who feel it has made their disease more aggressive-- including me (search on Moondanc to find all my rants ) so tread very carefully before you decide to go that route.
Feel free to send me a private message if you have any more questions.
Best,
Moondanc
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10/17/2012 18:35
mobaygirl
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10/17/2012 18:35
mobaygirl
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Re: Personal experience
Thank you Moondac, my Dr. is really pushing physical therapy. I contacted him about Xiaflex and even though he does use it he does not want to because I am in the "early" stages with very mild contracture. I guess I'll just keep hammering him on it.
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10/17/2012 19:18
Tusk 
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10/17/2012 19:18
Tusk
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Re: Personal experience
mobaygirl,
Is it just your nodules that are stinging or your hands/palms in general? One hand or both?
Generally it would be just the nodules that are tender or stinging.
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10/17/2012 19:22
mobaygirl
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10/17/2012 19:22
mobaygirl
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Re: Personal experience
Hi Tusk, it is only my right hand. The pain is in the tendon/cord and radiates up to my elbow. I have never felt anything like this except when I was stung by a wasp. I have no idea why my Dr. does not believe I am in pain.
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10/17/2012 20:53
marigail 
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10/17/2012 20:53
marigail
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Re: Personal experience
Hi Mobaygirl!!!
I am sorry to hear about the pain you are experiencing. I, too, have pain---it radiates from the cord, through the wrist into the arm, but mine did not start until rather recently. I've had two xyloflex injections, and as moondac indicated, my Dupuytren's came back much more aggressively. I will be going to another specialist in a few weeks in NYC( I live on the other side of the country from you), with hopes that NA can work for me. It sounds like you are quite early in the disease, so I encourage you to find a doctor who might perform the NA or the radiation and try that. I have Dupuytren's
in both hands, but the hand that is most affected was not the primary hand it appeared in!!!
Good luck, and I hope you can find someone to help you.
marigail
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10/17/2012 20:54
Tusk
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10/17/2012 20:54
Tusk
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Re: Personal experience
I see. Some others have reported similar pain. Lori was one I recall. Maybe she will see your post. Yes, very frustrating when some doctors think all patients must have the same exact symptoms and issues with this disease. That is old school medicine.
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10/17/2012 21:18
moondanc
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10/17/2012 21:18
moondanc
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Re: Personal experience
mobaygirl:
Thank you Moondac, my Dr. is really pushing physical therapy. I contacted him about Xiaflex and even though he does use it he does not want to because I am in the "early" stages with very mild contracture. I guess I'll just keep hammering him on it.
NO, NO, NO-- you misunderstood me. I DO NOT believe in Xiaflex. I believe it makes the disease worse, accelerates it. I had DD for more than 20 years in just ONE finger of my RH with very little progression. Finally, it started progressing and I got into the trials for Xiaflex. Less than a year later the disease became more aggressive and now I have it in all four fingers of EACH hand-- eight fingers are affected. I have talked to at least a dozen folks (some of them from the trials) who have had this experience. Avoid Xiaflex at all cost. NA (needle aponeurotomy) is the way to go if your disease has progressed to the point where your finger(s) are bent enough for it. I repeat-- what kind of doctor are you seeing? Read all the information you can on this website--there is very little documentation, if any, to show that physical therapy has ANY benefit at all. You asked for the name of a doctor in Seattle--I gave you one-- what about that?
If the pain goes all the way up to your elbows I can recommend some neural stretching exercises that might help you. Do you have any spinal or neck issues? That can cause difficulties down into the hands. Try this gentle exercise and do it very slowly. Put the arm with the affected finger straight out in front of you about eye or shoulder height. Slowly and gently raise the palm of your *hand only* back so it is at a 90 degree angle to your arm. You should feel a stretch in the nerves/muscles between your wrist and elbow-- it may even hurt and if so, back off and do it more gently. If you don't feel any pain, keeping your arm at the same height with the palm raised, move it sideways to the right if it's your right hand, and to the left if it's your left hand. You can move it anywhere from 10 to 40 degrees. This should help the pain your are experiencing in this area although it probably will not do much for the pain in your hands. Consider doing some of the other exercises recommended by Dr.Eaton, specifically with the dowels or use hand putty. Even self-massage of your hand with your thumbs and lotion can help with the pain. You need to do all you can to help yourself, there are no MAGIC answers with this disease.
Moondanc
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10/17/2012 21:45
mobaygirl
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10/17/2012 21:45
mobaygirl
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Re: Personal experience
Moondrac, I did read wrong, oops. Ok scratch xiaflex, I am seeing an orthopedic hand surgeon. I have read that PT does nothing for it and have asked about why he thinks it will help but no answer. I am in a HMO and believe I will have to go outside it and pay for my own treatment. I have been reading about r. Haung and it looks promising. Any thoughts on RT therapy? My current Dr. states that he feels it has unintended consequences that out weight it's benefits.
Marigail, I am so sorry to hear of your experience. Then pain you are describing sounds very similar to mine. I hope this new specialist will be able to offer you some help.
Thanks Tusk it is old school for sure.
Thank you all for your support and advice. I see I certainly came to the right place.
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