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Seeking doctor in Fort Worth, TX area
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07/28/2015 23:37
maikeC 
07/28/2015 23:37
maikeC 
Seeking doctor in Fort Worth, TX area

I have knots with chords developing on both hands. No contractions yet. Would like to find a good doctor in case I need some treatment in the future. Thank you.

07/30/2015 03:11
Cherise 
07/30/2015 03:11
Cherise 

Re: Seeking doctor in Fort Worth, TX area

maikeC:
I have knots with chords developing on both hands. No contractions yet. Would like to find a good doctor in case I need some treatment in the future. Thank you.


What I did was google Xiaflex. The site I was on was the drug company which makes the drug...asked for my zip code, then sent me the name of a Dr.that specializes in DD treatments of all types in my area.

I had already seen many hand specialists who had grossly misrepresented their treatment , after surgery all 4 fingers were contracting instead of just the one I originally had. The many doctors after that left me cold with well sometimes a flair is what happens that's all I can do, left all four fingers contracting and larger nodes.

I don't want that to happen to anyone. As I assumed those hand specialists were familiar with DD. and obviously they were not even though they knew it was DD. These were doctors from The best teaching hospitals in our area, yet were no help. I did more research as you will find here too on this site and that surgery is the very last treatment as it can send this disease into a huge reaction to create more collagen which is the material sent by the body to form nodes and thicken the tendons causing the DD to become worse.

I have another doctor I later found out has DD and he does nothing as he has also known since he has no contractions or has impaired hands it's best to do nothing. His hands are good & he is in his 60's. I see him every 3 years for other reasons. He was very impressed with the Xiaflex injections I did. It's not a fun proceedure has side effects yet I'm glad I did it because now I have a straight pinky that was curved a 180' with a huge amount of scar tissue. Scar tissue is also gone as Xiaflex is a enzyme that disintegrates collagen.xiaflex is also in another clinical study for excessive scar removal especially for burn victums.

I finally did Xiaflex there are many examples on you tube videos and information on this site as well. Now I wear a splint at night and spring splint during the day. I cannot go back and take back my ignorance to not have surgery with DD. I trusted the hand specialists and he was not trained or experienced with DD.

Kind Regards
Cherise

07/31/2015 21:24
maikeC 
07/31/2015 21:24
maikeC 
Re: Seeking doctor in Fort Worth, TX area

Cherise,
Thank you so much for your informative and detailed reply. I have kept up with this disease since I discovered a pea-size knot on my left hand (diagnosed as DD) about 14 years ago and a few years later developed some nodules on my right hand as well. I have read a lot about DD on this site and others, so I’m quite aware of the different treatment modalities as well as the unfortunate ‘horror stories’ of some individuals.

I did not mention how old I am in my post above. But I am 72 now and from my research I am aware that I may never get the contracture anyway due to age – just like the doctor you mentioned. Also, there is noone in my family that has it but I was born in Northern Europe.

I’d like to tell you about a treatment I have been using all these years: So when I was diagnosed with DD I was thinking about ways I could ‘soften’ this DP knot and decided Castor Oil packs would be the most promising. Remember Edgar Cayce used these successfully for different symptoms.

So for most of these years, almost every night, I’ve been applying my own little ‘castor oil’ pack on the palm of my left hand (because that is the only one that gives me occasional pain). I soak a round cotton pad (the kind used to remove makeup, etc.) with good quality organic castor oil, cover it with a piece of plastic, secure the whole thing with a bandage and leave it on overnight for maximum effect. The Castor Oil keeps the area with the DD knot soft and pliable.

I’ve done this almost every night for years and find that when I skip it that knot aches because it is dry and stiff the next morning. It only takes a minute to apply. I use the same cotton pad over and over but add a little fresh oil to it each night. My left pinky where the knot has been has NOT started to bend even though I developed a short (half inch) chord at the bottom of the nodule a few years ago.

Of course this is an experiment of one and may not affect others the same way. But we’re all looking for answers and this one can’t hurt anything. At least I don’t see how.

I’m thinking of making a separate post about this treatment in case others are interested in trying this especially if they are just at the beginning stage. It would be interesting to see if someone else has ever tried this.

Cherise, thanks again for taking the time to respond and I wish you all the best with your situation.

UPDATE: A couple of months ago, in the “As Seen On TV” section of a local store I noticed a product named “Heel Tastic” Intensive heel therapy for cracked heels. The list of different oils it contains is impressive and some were quite new to me. I thought if this will make cracked heels soft what might it do to a DD nodule? It comes in a handy roll-on applicator and I bought one. Been using this product now every night instead of the castor oil and think it may be even be more effective than the castor oil – but only time will tell.

08/01/2015 05:32
Cherise 
08/01/2015 05:32
Cherise 

Re: Seeking doctor in Fort Worth, TX area

Hello Maike,

Thank you for all your information. I appreciate it sooo much. It's nice to hear good news form someone who has DD.What you describe you do every nite to soften the nodes is called occlusion. I too have been doing the very same thing using different oils. I like magnesium oil, & many others. I use suran wrap to seal the oils in overnight or gloves. It does help to keep the nodes softer & smaller. I also use warm lavender oil wax treatments on my hands, then use aloe Vera coated gloves as overnite treatments too! Both treatments help the oils penetrate deep into the derm layers and prevent the nodes from becoming hard and painful. Occasionally cortizone injections have helped to shrink the nodes when aggravated. I to have a small cord on the palm pinky joint, this helps keep it soft

I also have been doing this for years. Also wear finger support socks while doing chores purchased at sports stores used by baseball and basketball players always have sprained fingers and to lightly pad fingers and also padded gloves when needed. I train horses and my hands take a beating,not to mention designing landscapes and gardening. I just do things differently and remain mindful of the tasks ahead. A little extra care & caution with DD goes a long way. I learned the hard way that surgery was the worst thing to do in my case.

I think you have the right idea. I am especially happy to hear that you have had no contraction.I will look for the roll on. You really should write about your technique and share with others who may find your method helpful too.

Stay well and positive. THANKX for sharing your techniques. I know it will help others. Hope to see your new post soon!

Kind Regards,
Cherise

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