Hi, Thanks and HELP, please | Dupuytren |

| Passwort vergessen?
Sie sind nicht angemeldet. |  Anmelden


Hi, Thanks and HELP, please
 1 2
 1 2
UHOH 

UHOH 
Hi, Thanks and HELP, please

Hello All,

I'm Annie, aka UHOH, new here and mildly panicked. I am 64. I saw the doctor in early August about a hard lump under the skin in the heel of my right hand near the wrist, in line with the thumb. He said it was nothing. In mid-September I felt something hard and small in the center of my palm. It is now quite visible and 3/8+ inch in diameter and lines up with my middle finger. The first lump seems the same. Thursday the doctor told me the new lump was DC, and pointed out some thickening in my tendons. He wasn't sure about the first lump. He told me nothing helps. Watch it. Surgery, if it got bad. I was so relieved it was not cancer, I asked no questions.

After reading about DD, I am worried. I have been having intermittent pain in my hands at least since July, particularly my ring finger, which I had thought was arthritis, but now wonder.

I have read DD can take months or years, and the finger curling may never happen, especially if one contracts it over 60. In my case the disease seems to be progressing rapidly, although I understand that it operates in stops and starts. I am wondering how early is early, in terms of RT. I think I am
past the several millimeters they mention for maximum effectiveness. I also wonder if I am overreacting and worrying about curling that may never come to pass. Although now that I am studying my hand, I do notice that the top joint on my pinky finger of the afflicted hand is bent a bit, but I think that has been that way for some time now.

For now, I am seeing what I think is rapid growth and have a variety of pains in my hand ranging from tingling in my pinky, to aching in my thumb, occasional tenderness in my palm and stiffness and pain in my ring finger.

For what it is worth, the year before last, I broke my right shoulder. I have fairly good movement in it now and it rarely hurts.

I am currently in Pittsburgh, PA. I have plans to go to San Francisco in January, but would make that trip sooner if necessary.

Also, has anyone had any luck with getting Medicare to pay for RT? The last posting I saw mentioned problems, but no resolution. Would Germany be a cheaper option if Medicare won't cover this?

Thank you in advance for any and all help or advice anyone can offer. I have been reading this wonderful site for hours now and feel that I am in good hands (ha ha) with all of you, if not yet with the medical community. Hopefully I will figure out how to post this correctly.

Best,
Annie aka, UHOH

spanishbuddha 

Administrator


spanishbuddha 

Administrator

Re: Hi, Thanks and HELP, please

Welcome to the forum Annie

"Watch it" sounds like good advice, but do it in an analytical way. Keep a weekly log or record with photo's whilst you continue researching your options. Record symptoms such as pain, tingles, aches, etc, also location and size of any nodules, the camera and a black marker will help with this. Check finger and hand span and flexion. The bent tip suggests other things as well as DD going on in your hand though. What did the doctor say?

It does sound like the condition is active and possibly a candidate for early RT treatment, which is why I suggest a weekly log rather than monthly. It would help if you can find a hand specialist who can advise you with this analysis and prognosis. The condition may slow down and settle, so no treatment needed at this time or it may develop into a cord, which might sway your decision to having RT. Read about risks and side effects of RT so you can make an informed decision.

In the meantime protect your hand(s) as much as possible when gripping, grasping, doing work with just about anything, the PC mouse, DIY, sports, driving, kitchen, etc. Also review the likely DD risk factors or predispositions, and if any affect you and can be controlled see if you can make changes accordingly.

I don't know about the US and Medicare, a few people on here have had RT done via insurance in the US and I hope you can read their stories. You could always email your record log with photo to Professor Seegenschmidt in Germany, but the best diagnosis and advice is done after a personal examination by palpating the hand.

Best wishes

UHOH 

UHOH 
Re: Hi, Thanks and HELP, please

Dear SpanishBuddha and Callie,

Thank you both for getting back to me so quickly and for your thoughtful responses. Slowing down a bit is probably good advice. My interpretation, after spending hour and hours, combing through the posts on this site, was Get to RT, ASAP. My doctor had pointed out some thickening of the tendons, which is what was prompting my haste.

I will start documenting immediately. Any suggestions as to the best way to measure flexion and hand span, other than tracing my hand and seeing if my hand keeps within the same silhouette? I did see somewhere on this site a series of lines meant to measure against, but was unclear how to use them.

I have a long standing chronic pain problem, primarily involving lower back pain. There are many abnormalities in my neck as well, which have in the very distant past, caused pain in my arms and hands. My back has been very cooperative for the past few years. Arm and hand pain have been absent for many, many years. So much so that I attributed my recent hand pain to run of the mill arthritis. Now I am wondering. In the past few days I have noticed much tingling in both of my pinky fingers and some pain radiating up my right arm to the arm pit. This is the hand diagnosed with DD. Is that sort of pain typically associated with DD?

Spanish Buddha, you mention that the bent tip might be indicative of other things, does the radiating pain give you any suggestions as to what sort of specialist or who in particular I might want to go to for further evaluation? I am currently in Pittsburgh, PA and had been planning to go to the San Francisco Bay Area after the first of the year, but taking care of this has become my first priority. Have Problem, Will Travel (for help).

I am a little unclear as to how to “protect” my hands. I will swear off jack hammering, push ups and weight lifting, which should be easy as I never do any of those things. I am (seriously) going to stop using my MacBook Air computer, as I find the keyboard a bit awkward. However, besides wearing gloves, how does one protect their hands?

Again, many thanks to both of you and to all who have contributed to these pages. They are incredibly helpful and comforting.

annie

callie 

callie 
Re: Hi, Thanks and HELP, please

You said, "In the past few days I have noticed much tingling in both of my pinky fingers and some pain radiating up my right arm to the arm pit." "Is that sort of pain typically associated with DD?" No.

You also mentioned "My doctor had pointed out some thickening of the tendons". If he were accurate, that is not Dupuytren's. "Thickening of the tendons" would be something else.

It sounds like you have other things going on besides Dupuytren's, which could easily be the least of your problems. Observation is important, as was mentioned. Dupuytren's isn't a panic situation.

spanishbuddha 

Administrator


spanishbuddha 

Administrator

Re: Hi, Thanks and HELP, please

I don't live in the US so am not sure what sort of doctors you have available. I would seek a hand doctor, who works almost exclusively on hands, maybe arms, shoulders too, but has extensive experience of Dupuytrens's. The catch is that often these doctors are surgeons, and for some of them surgery is the answer to all ills. I doubt any hand surgeon will recommend RT. But what you want is someone who can offer advice and help, as part of a 2-way discussion, since you will have all the knowledge gleaned from this site. Do you have 'hand clinics'?

Taking measurements of hand and finger spans is ok but these can vary from day to day, times of day, hot or cold, but it helps to become familiar with the dexterity and flexibility of your hands and fingers. Hands together as if praying, all flat, now open the arms. Feel the tension in the palms and fingers. How far can you go. Flex individual fingers backwards, are they all the same (mine are not, and though I don't have a contracture I know what's normal now). Feel the extent of the lumps and thickening, mark the outlines with pen and photograph. It may vary week to week or month to month, but an increase trend will become apparent ( as I think you have already observed). Grade lumps, soft, medium, hard with reference to each other or a joint. It's not scientific but helps build a picture with some documented evidence of changes. No need to be obsessive once you've gathered an initial good 'map' of your hands.

Yes wear gloves, even when you would not have before. So for example I wear gloves when gardening, never used, to, driving never used to, playing tennis, ignoring the ignorant sometimes quizzical looks I can get; use gripping devices designed for people with arthritis when opening things especially in the kitchen, and so on. Avoid any pressure, torsion or friction on the palm side whenever possible. No need to be obsessive again, but just try to protect them.

Hope this helps.

flojo 

flojo 
Re: Hi, Thanks and HELP, please

Hi UHOH,

Suggestions by SpanishBuddha were excellent and thorough. Can't add much to that.

Since you live in the Bay Area, I highly recommend Dr. Keith Denkler, Larkspur, Marin County. He is a certified hand specialist. He did many surgeries for Dupuytren's and is passionate about this disease. I went up from SoCal to have him do NA on mild contracture of my Dupuy hand. He also does Xiaflex when appropriate for Dupuys on a particular hand. He knows hands. Dr. Eaton who just retired, was considered the best in the east. Dr. Denkler is the best in the west. You can find him under treatment for NA. Lots of information on his website.

You can email pictures of your hand to Dr. Denkler and he will respond via email about what he sees. That was my first contact with him. He is aware of RT and while he doesn't treat via RT, he knows it can work and would be able to discuss that with you, He contacted a radiologist in San Francisco who agreed to start doing it. I believe it was Dr. Gottschalk and he does RT in San Francisco now. I went to Scripps San Diego/La Jolla because it is closer.

Don't panic but like was mentioned, document the progression of your disease as you watch it.
As for the finger bent in the first joint, Luba and others have had that as Dupuytren's. Dr. Denkler could certainly help on that determination.

LubaM. 

LubaM. 
Re: Hi, Thanks and HELP, please

Hi UHOH,

I don't have much to add to the previous comments, you have been given lots of good information and advice in answer to your questions.

With regard to the bent tip of the finger...as Flojo mentioned correctly... my right hand pinkie finger is bent at the PIP joint and then it bends in the opposite direction "upwards" at the DIP joint (last joint near fingernail). This sort of double bending is called a "boutonniere deformity", you can look it up... it looks very odd, but the one good thing is that the pulling upwards of the tip of the finger, stops the finger from continuing to bend towards the palm.

Continue to keep a careful watch on the progression of the disease, protect your hands, and eventually you will make the right decision regarding the treatment that is right for you. Just remember that no two people with Dupuytren's are alike.

Best wishes... and keep asking questions...
Luba

UHOH 

UHOH 
Re: Hi, Thanks and HELP, please

SpanishBuddha, Flojo, Callie and Luba,

Thank you all so much for your extremely valuable input.

I would like to tap your collective wisdom a bit further. Several of you have mentioned other things might be going on besides the DD. Given my history of other pain and neck problems, I am starting to think that you are correct. I was very pleased with the suggestion of Dr. Denkler, because his office is very close to where I was planning to be in January and he has received great patient reviews online.

I was a bit surprised when I looked at his web pages to see that he is also a plastic surgeon and does many things in addition to hands, such as face lifts, etc. My question is this. Do any of you have any knowledge of his ability as a diagnostician in terms of being able to sort out what is going on with me as it relates to the DD and the sensations in my hands?

If it weren't for this recent diagnosis of DD, I would not be giving these sensations a second thought. It is the growing lump that caught my attention. In the past for my chronic pain problems (which have on occasion involved my arms and hands) I have dealt with orthopedists and neurologists. I think a hand specialist makes sense here. I just wanted to double check your thoughts on if Dr. Denkler would be the appropriate person for me to see at this point.

I have BTW gotten several pairs of gloves and as I go through the day am able to find lots of things to do to spare my hands a bit.

Again, many, many thanks to all of you.

Annie

flojo 

flojo 
Re: Hi, Thanks and HELP, please

I doubt you will ever find consensus about who the best doctor is. Each has his/her opinion about their doctor being best. Dr. Denkler is preferred doctor regarding my hands in general and specifically for NA. We never know anything for sure about this disease and how to treat it. That's just it's nature. You, like all of us had to do, will need to determine which is best for you. You make your decision, go for it or not, and hope you made the best choice.

Yes, Dr. Denkler is experienced as a hand surgeon. That is his speciality. He is one of the most knowledgeable in the US about Dupuytren's. That he also has a plastic surgery practice does not change his qualifications and expertise in hands. His wife, also a surgeon, developed severe rheumatoid arthritis and can no longer do surgery. She is able to use her training and skills in other parts of their practice since she is limited because of her arthritis. They are both very knowledgeable about hands in a personal way as well considering her condition.

Here is a link to another page on this website. It references Dr. Denkler’s research. Here is the link and a summary including links to the abstract and the full paper also:

http://www.dupuytren-online.info/NA_training_literature.html

Keith Denkler reports successful treatment of 102 patients with Dupuytren's contracture stage 4 "Needle Aponeurotomy for Stage IV Dupuytren’s Contracture: A Wide Awake First Step Approach" 2009 Annual Meeting of the American Association of Plastic Surgeons abstract and Full_AAPS_209_PDF (provided by author).

Here is another link that refers to a Dupuytren’s patient who documented helpful information about treating Dupuytren’s. Walt's site offers his own experience, testimonials from patients, explanation of Dupuytrens, and a lot of related links. Walt's link below goes to a list of providers of NA and lists Keith Denkler, M.D as one of the French Trained (FT) Certified Hand Surgeons..
http://www.wstagner.com/dusa.htm

ahari43 

ahari43 
Re: Hi, Thanks and HELP, please

Hi,
based on my own personal experience with Dupuytren's in 5 fingers, one operation, one radiotherapy treatment and two needle aponeurotomies, the best advice is not to delay! Radiotherapy works well but is expensive, NA also works well but the disease has come back quite soon. In addition to all the listed treatments, I have been using ultrasound treatment, relatively cheap (just the cost of the equipment) and safe. I treat all my affected sites for 3-5 minutes at maximum power, every second day. For me, it has made my hard nodules softer and smaller and when started on a new, non-contracted finger, seems to have arrested any further deterioration. One original nodule started 12 years ago, the size of a lentil, quite round and hard. After becoming softer after just a few treatments, it very slowly decreased in size and is now about 1/3 its original size but hard. Three new sites about 6-12 months old have all become noticably softer and smaller after the treatment.
I feel it is certainly worth a try, if your nodule doesn't get softer after about ten treatments, I would then go on to consider radiotherapy.
I also agree with previous advice, to keep a careful and detailed record of the progression of your Dupuytren's, it is easy to forget what happened when.

 1 2
 1 2
predispositions   proliferation   dupuytren-online   Denkler   ultrasound   Extracorporeal   aponeurotomies   Dupuytrens   radiotherapy   self-treatment   information   biostimulation   non-professional   treatment   experience   condition   SpanishBuddha   Dupuytren   Dupuytren’s   specifications