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07/30/2015 20:20
Broderbund 
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07/30/2015 20:20
Broderbund
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Newly Diagnosed And Need Advice
Hello
I was diagnosed today ( in rather quick fashion) by a hand surgeon and my head is spinning a bit reading all the posts on this forum
I'm a 49 year old male .... About 3 months ago my pinky finger began to ache after playing multiple rounds of golf. I thought it was arthtitis but the pain persisted and eventually a nodule began to form just below the pip joint on my left hand. My pinky has now begun to contract towards the palm.
The hand surgeon recommended surgery as the spot of her nodule is on the pinky and injections are not an option due to potential tendon damage. He told me reoccurrence rates are high.
I'm pretty freaked out reading this forum and would be grateful for input on the following:
1) Does the fact that this came on suddenly and my finger has contracted rapidly suggest I have an aggressive form of DD and am in for a lifetime of issues?
2) Didn't even know radiation was an option .... Any thoughts on surgery vs radiation give how I'm presenting at this point?
3) Should I get a second opinion and if so by what type of Doctor? Another hand surgeon?
4) Is it medical fact that surgery will accelerate this disease in other areas?
5) I know this is not cancer or something life threatening but is there any positive news anyone can offer --- I'm on a bit of shock and still trying to figure out how serious this is.....
6) what are the chances this is a one time event ....I have the surgery and won't have any other issues in the future?
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07/31/2015 04:52
Cherise 
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07/31/2015 04:52
Cherise
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Re: Newly Diagnosed And Need Advice
Broderbund:
Hello
I was diagnosed today ( in rather quick fashion) by a hand surgeon and my head is spinning a bit reading all the posts on this forum
I'm a 49 year old male .... About 3 months ago my pinky finger began to ache after playing multiple rounds of golf. I thought it was arthtitis but the pain persisted and eventually a nodule began to form just below the pip joint on my left hand. My pinky has now begun to contract towards the palm.
The hand surgeon recommended surgery as the spot of her nodule is on the pinky and injections are not an option due to potential tendon damage. He told me reoccurrence rates are high.
I'm pretty freaked out reading this forum and would be grateful for input on the following:
1) Does the fact that this came on suddenly and my finger has contracted rapidly suggest I have an aggressive form of DD and am in for a lifetime of issues?
2) Didn't even know radiation was an option .... Any thoughts on surgery vs radiation give how I'm presenting at this point?
3) Should I get a second opinion and if so by what type of Doctor? Another hand surgeon?
4) Is it medical fact that surgery will accelerate this disease in other areas?
5) I know this is not cancer or something life threatening but is there any positive news anyone can offer --- I'm on a bit of shock and still trying to figure out how serious this is.....
6) what are the chances this is a one time event ....I have the surgery and won't have any other issues in the future?
Hi ,
I can certainally understand your response to your diagnosis. I think you have expressed how most of us felt when we went thru our first diagnosis.
The best advice I can share from my experiences is to see a hand surgeon who specializes in D. NOt all hand surgeons are and it depends on what stage your D is in to which treatment is needed.
In my case I had a pinky slightly contracting. A hand surgeon stated surgery is necessary or the finger will continue to contract until it closed. The doc said its preventive at this early stage, which was the farthest from the truth. The surgery set off all my fingers into a flair and the pinky did close shut anyway. This is why it's so important to go to a doc who specializes in DD. Most hand surgeons don't know that recommending surgery is the last option. My doc never spoke of any reaction to surgery would make DD WORSE. All he said was after he saw all four fingers were contracting and the pinky closed after 3 months since the surgey was... well sometimes a flair happens and said he did all he could do. Then walked out of the exam room and left me sitting there in absolute disbelief. I wondered what do I do next with no referrals from this doctor.
Most people with DD recommend surgery as the last solution according to the advancement of the disease.
After surgery I chose Xiaflex injections to open up my pinky which it did. So miserable wih a closed finger. It also eliminated all the scar tissue from surgery which was causing more issues. Collagen is what the nodes and thickness on the tendons are made up from as the body process the material on the tendons to contract the fingers. Xiaflex is a enzyme injection which eliminates the built up collagen and scar tissue ( made up of collagen), are all gone from the surgery.
I wear a night splint and a spring splint ( which I love), and I am very grateful for a straight finger finally after 3 years of 180' contracture to the Palm, I found a specialist in DD. The other three fingers that had flaired from the surgery that were fine before the surgery have not gotten worse. There are exercises to do to help stretch the tendons.
I have another doc who has DD and he has done nothing as he knows it's better to leave It alone until necessary. Once anything is stated to repair a minor finger it usually causes a reaction and the DD becomes more active. I see him every three years for something else and his hands are doing fine.
There is a lot of information on this site all you need to do is check the treatment center for more info.
For now my best advice is to leave them alone. Try rest, splints and therapy. Being a golfer is naturally irritating the hands .
However your grip will never be what was. Adjustments to this disease is the key and the most difficult. However I still ride horses every day, garden, paint do fine arts and crafts and all the daily things everyone else does just a little differently. And making those adjustment that make all those daily tasks something I can still do..And not give up!
It's always something every day I am always thinking ok be mindful on how I can do this task. Usually it works out just takes a bit longer.
And remember there is always someone here that has been thru the xyzzzz's of this disease ready to help you any time.
There is a great group of informative advice from experienced and knowledgable members.
Kind Regards
Cherise
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07/31/2015 05:29
teeps 
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07/31/2015 05:29
teeps
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Re: Newly Diagnosed And Need Advice
I was diagnosed at age 32 and had many of the same questions that you have. Mine appeared rapidly and I happened to be in for one of my every 6-month post cancer checkups (had cancer at age 27!) with my oncologist and I showed him the nodules in my right hand. He had treated a handful of patients before and so we did a round of radiation and the nodules went away. 3 years later they popped up in my other hand and so we did another round and so far they have shrunk and don't give me any issues. I went to so many hand specialists, talked to doctors at the Mayo clinic (brother was there for a residency), and they all told me to have surgery or leave it alone until I had a 90 degree contracture. It just didn't sit right with me do just let the disease run its course so I have tried to be more proactive with radiation. I've been very happy with the radiation so far!
There are a lot of studies on radiation and it's covered by many insurances in the U.S. - one study I read showed a .01% increase in the risk for skin cancer with low dose electron beam radiation therapy.
Good luck and keep us all posted!
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07/31/2015 19:48
spanishbuddha  Administrator
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07/31/2015 19:48
spanishbuddha Administrator
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Re: Newly Diagnosed And Need Advice
Hi Broderbund
First some perspective although you may not like it, this is not life threatening, and for the majority of people is fairly harmless and doesn't even lead on to a contracture. For the rest with contracture, it varies from inconvenient to disabling or preventing them doing their job or hobby, and becomes a matter of managing the condition using the appropriate treatment. Some thoughts below your questions.
1) Does the fact that this came on suddenly and my finger has contracted rapidly suggest I have an aggressive form of DD and am in for a lifetime of issues?
> Can you identify anything that bought it on? A trauma, heavy drinking session, onset of diabetes, anything? 49 is the early side of the majority, that's all, but a rapid contracture is not such a good sign.
2) Didn't even know radiation was an option .... Any thoughts on surgery vs radiation give how I'm presenting at this point?
> Mostly for a first contracture we would recommend NA or Xiaflex. The contracture physically inhibits satisfactory radiation treatment since you can't get the hand flat. RT is the only early useful treatment, other than wait and see, but you seem to be past that. After getting your hand straight, if there continues to be progression, activity, symptoms then RT may be appropriate.
3) Should I get a second opinion and if so by what type of Doctor? Another hand surgeon?
> If your Dr has not suggested NA or Xiaflex, get another Dr.
4) Is it medical fact that surgery will accelerate this disease in other areas?
> Medical fact, no, and anyway with diseases such as this, no cure, no clear pathogenisis, what is a medical fact? But many people report any hand surgery, including NA and Xiaflex appears to accelerate the disease. Many people do not.
5) I know this is not cancer or something life threatening but is there any positive news anyone can offer --- I'm on a bit of shock and still trying to figure out how serious this is.....
> Positive, well you're in good company with many famous people, ha! Like I and you said, it could be much worse at your age, and for the majority it becomes a bit of a nuisance that we just have to find what works for us. I play piano and tennis, still do, life goes on.
6) what are the chances this is a one time event ....I have the surgery and won't have any other issues in the future?
> Who can say, 50/50. Don't have surgery yet. Get the finger straightened though, NA or Xiaflex, look into RT, treat if needed, maybe nothing further will happens for 10 years, maybe it will. Look into the risk factors and adjust lifestyle if necessary. Then try and forget about it, or treat it as part of you that needs managing or taking care off. Enjoy the rest of your life.
Best wishes SB
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07/31/2015 20:13
Cherise
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07/31/2015 20:13
Cherise
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Re: Newly Diagnosed And Need Advice
Hello will answer your private mess here. Sorry had no luck typing the response in the private message area. Even after deleting the # of characters approiated in the message.
To make a long story short. Yes I was a candidate for Xiaflex since surgery caused the pinky to contract to 180'.
I looked up the name of the drug Xiaflex and found in the site a referral to a doc experienced with dd and Xiaflex in my area according to zip code. He is now retired I was his last patient, he left me with another referral to a doc experienced with dd. I did see him last mon and his opinion was to let things rest. Wear splints exercises to strengthen fingers. I live on the west coast.
If I had just not had surgrey in the first place I would not have had the closure in the pinky or the other dd in all the fingers . On this site a lot of treatments are listed and from most experience surgery is the last treatment. There are many others. If your going to a dd specialist ask for patient referrals that hhas worked with DD patients. Scar tissue is a big problem with surgery as it is also made up of the same substance that causes nodes and thickening of tendons - collagen. Xiaflex is a enzyme that dissolves the horrible build up of scar tissue which is common in dd surgeries ( that is why skin grafts are done due to the collagen build up in scar tissue as the surgery site heals), Xiaflex dissolves the collagen build up on thickened tendons. It is not recommended for nodes. I have had nodes for 30 years. Never had a problem till surgery. Of course no one could tell me what it was .
I will add that the strength is better in my hand and I can now make a tight fist just not so much with the pinky, due to 3 years of the knuckles locked into closed position to the Palm.Otherwise I have a good grip with the other effected fingers from the surgery. They were just fine before surgery. It's certainally better to have a straighter finger than one frozen closed. It was always getting caught on things and bruised up.
I had a few nodes swell after Xiaflex and received cortisone injections which helped shrink them. After 5 months wearing nightly splints to keep my fingers from contracting is something I will always need to do and glad I did Xiaflex.splints and therapy are preventative care.
I went to therapy after Xiaflex injections and splints were made for my hand and soft cushion putty was added for comfort when the nodes were active from the surgery. All the materials are available online just google hand splint materials .
My favorite is the spring splints I bought online. Finger spring Acu-Spring PIP EXTENSION ASSIST by DeRoyal. (Amazon). Others here referred them. They are on Amazon? Isn't everything? There is much discussion on other splints on this site too. Search splints in the search box. I also left pics of my splints under the discussions. The spring splints are padded on a spring and strengthen the fingers while using hands. Easy on and off and help especially after initial injection during the day once the hand has healed. It ook two months untill all was back to normal and using my hand normally again. I wear it during the day . I also was told by my doc to take,N-Acetyl-L-Cysteine helps with free radicals build up of collagen in studies in DD.
The are many different exercises & equipment online to strengthen hands and fingers. Palm spring grip and soft balls to squeeze I use several. Riding my horses and lifting saddles is no problem with finger sport supports. There are finger splints at sports stores for basketball players with sprained fingers, I use them for support and comfort as well. They are cheap and great support when needed rather than stress the nodes it helps pad the fingers to prevent swelling. Even a padded gloves for palm nodes helps a lot while doing activities.
I Hope this answers all your questions, and helps you find ways to cope.Ask your doc for therapy and splints you will learn a lot from the hand therapist. We all have found our way thru this and share what we can on this site. I am so thankful for this site. Now we can educate doctors. I will add that for three years after surgery I still could not use my hand. Now thankfully I can .
Sorry I could not private message you. It's either the site or me! Just would not allow any characters added to the message to you even after I deleted enough characters to allow the message program to accept. It was stubborn and so was I....
Kind Regards
Cherise
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