Tusk, the radiation was most certainly applied to the dupuytrens dorsal nodules of my PIP joints, which, incidentally, are not the same as Garrod's pads even though the terms are used interchangeably. On biopsy, Dupuytrens dorsal nodules are the same kind of tissue found in palmar nodules, so it is conceivable that the RT stopped progression. The most active ones were on the RH ring and pinkie and these have not grown even with this recent flare. They are nowhere near as large as the ones on my RH index finger PIP and LH middle finger PIP joint. The size if my middle finger is astonishing! The doctor was uncertain if RT would work and in retrospect, she probably should have just sent me home but hindsight is 20/20 as they say.
Why do you say that dorsal dupuytren nodules are not the same as garrod's pad ? What is the difference ?
cschieber:Tusk, the radiation was most certainly applied to the dupuytrens dorsal nodules of my PIP joints, which, incidentally, are not the same as Garrod's pads even though the terms are used interchangeably.
Garrod's pads refer to any cutaneous knuckle pads.
Garrod's pad From Wikipedia, the free encyclopedia Garrod's pads (also known as violinist's pads[1]) are a cutaneous condition characterized by calluses on the dorsal aspect of the interphalangeal joints,[2] i.e. the back side of the finger joints. They are often seen in violin, viola, and cello players, along with fiddler's neck and other dermatologic conditions peculiar to string musicians.[2] Garrod's pads are named after Archibald Garrod who first documented them in 1904 in association with Dupuytren's contracture.[3] H.A. Bird described them as an incidental finding in a professional violinist and proposed that they arise in such cases due to repeated extreme tension of the extensor tendons over the interphalangeal joints.[4] Bird noted that violin players use the left hand for a markedly different task than the right hand, with the extensor tendons in the left hand subjected to considerable tension, and that Garrod’s pads only arise on the left hand in such cases. This unilateral finding differentiates the occupational hazard of Garrod’s pads from more significant disorders. Among violinists and violists, Garrod’s pads apparently arise as a protective mechanism for the skin and subcutaneous tissues above the tendons; Bird notes that they do not protect against external trauma unlike most calluses.[4] Although Garrod’s pads are conventionally described as appearing on the proximal interphalangeal joint, Rimmer & Spielvogel document an instance on the distal interphalangeal joint of a cellist.[2] Patients with Dupuytren's contracture are four times more likely to have coexisting Garrod's pads.
But not all Garrod's Pads are Dupuytren's.
J Hand Surg Am. 2010 Oct;35(10):1571-9. doi: 10.1016/j.jhsa.2010.06.001. Dorsal pads versus nodules in normal population and Dupuytren's disease patients. Rayan GM, Ali M, Orozco J. Source University of Oklahoma Health Sciences Center/INTEGRIS Baptist Medical Center, Oklahoma City, OK 73112, USA. ouhsgmr@aol.com Abstract PURPOSE: There is ambiguity about using the term "knuckle pads" in Dupuytren's disease (DD). Clear definitions of dorsal knuckle pads and nodules are lacking and the prevalence of these 2 entities has not been determined. We sought to define these terms and investigate the distribution and frequency of dorsal knuckle pads and dorsal nodules in the normal volunteers and in DD patients. METHODS: We assessed 50 consecutive study patients with DD and a convenience sample group of 50 control patients without DD for dorsal cutaneous pads (DCP) (ie, thickening, sclerosis, and loss of skin elasticity) and dorsal Dupuytren's nodules (DDN) (ie, solid tumor-like masses over the digital joints). Demographic information was collected for both groups, including the extent of the disease in DD patients. We examined both groups for the presence of dorsal lesions and their characteristics, and the DD patients for other local and ectopic Dupuytren's lesions and for the level of diathesis. RESULTS: None of the control patients had DDN, whereas 9 DD patients had DDN (p = .002). Nine control patients had DCP, whereas 11 DD patients had DCP (p = .803) Among the 9 control patients with DCP, pads were predominantly over the proximal interphalangeal joints and tended to occur in men with physically demanding occupations, and in the dominant hand. The index and long fingers were most frequently affected. Six patients had only DCP, 4 had only DDN, and 5 had both DDN and DCP. In the control and study groups, the DCP characteristics and patients' demographic data were comparable. Patients with DDN were white men with physically undemanding occupations and had lesions over the proximal interphalangeal joints, most frequently in the index finger, with an average size of 6 mm. Neither DCP nor DDN were encountered in the thumb. CONCLUSIONS: Future studies should clearly distinguish between DCP and DDN. Although DDN are pathognomonic of DD, DCP demonstrates similar prevalence in normal and DD populations If these nodules cause a problem, surgery is a possibility, but as with all Dupuytren’s related condition the possibility of conditions worsening and scarring of the finger should be taken into consideration. There is little information on treatment, but treatments that work for palmar Dupuytren’s are the most likely ones to be considered for dorsal nodules
And I'm sorry but I simply can't find the paper that discussed the biopsy results the tissue.
As you can see in the pictures, these are not just callous like growths on my PIP joints. They are hard as bone and under the skin. They are also quite painful. At the time I was diagnosed I only had these dorsal nodules. I didn't have any of the large nodules you can see in the second pic on the palmar side of the knuckle. I now have more classic symptoms of the disease.
Brian, why don't you try skin grafting before you go for amputation? There is a wonderful presentation on YouTube from the 2010 Dupuytrens Symposium by Dr. Lynn Ketchum, that thoroughly describes the use of full thickness grafts with excellent results and infrequent recurrence.
Thank you for the info. Very scary looking surgery but I will run it by the surgeon. Great results and the theory the tendency for the disease is contained in the upper layers of skin makes sense.
I am so sick of being carved up but this would be preferable to amputation.
Will also look at the other videos from this symposium. Great info, thanks again.
Well, I had my multi cord Xiaflex treatment this past Monday, April 15, as part of the clinical trial that Stony Brook Orthopedics is undertaking. I was the last person they accepted, as they have their 600 participants, globally. Dr. Badalamente, the inventor of Xiaflex, felt that there were going to be some disappointed people who would now now be accepted. I'm glad they accepted me. Dr. Badalamente did not do the injections, as she is not a physician. Dr. Samantha Muhlrad, the orthopedist she's working with, did the deed. She seemed excellent.
Anyway, I went in Monday morning, did a short study questionaire, then got the injections. The first stick was just that... a stick. I was thinking, "Wow, this isn't so bad." Then came the next five. Wow!! They really hurt. As you know, each "injection" is really a series of three sticks. So, I got three on my ring MCP and three for the PIP, injected on the side of my finger closest to my pinky, as that was where there was the obvious cord. Hurt like hell, but it was fast. Got bandaged up and sent home with instructions to leave the bandage through the night and they would remove it the following morning. I insisted on a script for vicodin, though Dr. Muhlrad didn't think I'd need it. I asked her to please let me be the judge of that; if I didn't need them, I wouldn't take them; if I did, I'd already have them. She agreed. By the time I got home, after stopping at the pharmacy to fill the script, I was in a lot of pain and gladly took a dose. I took another dose at about 9:00 p.m., then just slept for the night.
On Tuesday morning, before I went in for my manipulation, I took another dose of vicodin. When the bandage came off, the doc noted that I didn't seem to have as much bruising as expected. Good. But, for someone who really doesn't have any kind of anxiety disorder, I went into a kind of anxiety attack over having the lidocaine injected into my very sore hand. I was so afraid that the injections would hurt worse than the Xiaflex the day before, and I just melted down. The two docs, the research assistant and my friend managed to talk me down, and get me to breathe. She sprayed my hand with the freezing stuff and injected in three places in my palm. I have to say that it really wasn't as bad as I anticipated. I do think the vicodin taken two hours earlier did maybe take some of the edge off. In fact, it wasn't nearly as bad as the Xiaflex itself. In hindsight, I'm a bit embarrassed about my anxiety attack. But, moving forward.....
Once the lidocaine took effect, the manipulation began. That was not a painless procedure. Most of the pain was in the palm of my hand where the doc held my hand to break the cords. It was so bruised, and the lidocaine did not extend that far down my hand. Although there were a few good pops, the cords just wouldn't fully break. Although my hand was not as severely bruised as they expected, the manipulation caused so much swelling that they just finally had to stop. I was disappointed, and asked her if she would inject some more lidocaine and just manipulate some more. She said no. So, I went home with a my hand in a splint to wear through to the next morning with instructions to start the next day (wednesday) with exercises to try and straighten and break some cords at home. Then the splint was only to be worn at night.
Yesterday, Wednesday, began the exercises. My hand is so bruised and swollen that exercising is painful. But I am determined. I took vicodin and onward ho!!!. I think I attained some more straightening, but it's hard to tell, given the swelling. As the swelling goes down and the exercises continue, we'll see how far I get. My next appointment is April 29, wherein I think we'll talk about success, or lack thereof, and maybe the possibility of going another round. I would go another round of the Xiaflex, particularly now that I know what to expect. My anxiety was really not founded on much of anything but fear, and that is now gone. I just would have to convince the doctors of that.
Right now, my hand is very sore, so I took some tylenol. I'm taking the rest of this week off of work, and although I told them that I would need two weeks (to be on the safe side), I may go back to work on Monday or Tuesday. We'll see. So, that's my story, to date. Xiaflex is not fun. I think the biggest advantage over NA will be the reduced recurrence rate, though I know that the jury is still out on that. Obviously, there are huge advantages over open surgery, but surgery was so successful for me, that I tend to wonder. My doc said that the succes that I have experienced with my surgery, and without recurrence on that hand is very rare, and not to expect the same level of success on this hand with the Xiaflex, or even with open surgery, given the more advanced stage of the disease this time around. Time will tell.
Hi Diane, Im glad you made it thru your multiple injection.The single injections are no where near as bad.Auxillium gives us an additional 3 injections to clean up the rest of the cords.I know some people have one and their done.Us with scar tissue usually need 4 even 5 injections to free the hand all the way.I had 4 on my right and its gonna be 4 or 5 on the left.Please note later on how soft your hand is where they injected,it softens your scar tissue alot.Keep pluggin along and you will have your hand back but its a 5-6 month treatment.After they discharge you from the clinical study,you get an injection every 28 days with no follow ups,so you move pretty fast after the study.Dave
Thanks for sharing your experiences. I have to say mine were pretty similar to what you were describing. The first time through, when you don't know what to expect is far more daunting than any subsequent experiences. I had to smile when you described your fear at the lidocaine injection---I felt the same way and compared to the xylaflex injection it was little more than a pinprick. As you are describing in your case, I also didn't get full breaking of the cords, yet was told to wear the night brace and do the exercises. I did as best as I was able. However, the night brace was SO painful because it was trying to straighten something that couldn't be done, that despite the nightly medication (also Vicodin) there was no sleeping. So, I pretty much wore the night brace 8 hours during the day to preserve my ability to sleep. I had a second series of xylaflex about two or three months afterwards. It did not go well. What happened to me was that a huge blood blister formed at the site of the injection, so when it was manipulated it exploded. Then I was dealing with a wound care issue....had to go back every other day for awhile to have that taken care of. Wearing a brace was absolutely impossible, so the finger (pinky) almost immediately started to fold back in. The doctor, after several months, determined that doing xylaflex on me was not something he'd try again, and the only option he offeredf was surgery. As I had been on this board for awhile, I came here for comments on my experience. Several folks suggested I look into NA (needle aperotomy). A list of approved hand specialists who do this procedure was provided to me. I researched everyone who was within my geographic location, and came up with someone. Since I really did not want to go the surgery route before exhausting all possibilities, this was my next step. Any doctor was a fair distance from me, so initially I sent photos and my medical history. Both of my hands are affected with Dupuytren's, the one with the pinky joint totally (and I mean totally) contracted, of course the far worse of the two.
Off I went to NYC in November. After a thorough examination, x-rays, etc. the decision was made to do the NA on the less affected hand first---the very next day. On this hand, mostly my palm was involved, which pulled in my ring finger slightly. A cord also ran between the "webbing" area between that finger and the middle finger. The worst of the procedure was the lidocaine injections----which, as you recall I likened to a pinprick. Following the procedure I was fitted with a night brace, sent home with an appointment to return in a month to do the second (more affected) hand.
Fast forward one month. I appeared at the clinic and the same procedure was followed. However, the PIP joint on the pinky would not release. It was determined that a PIP release was necessary. That occurred the next day. I had a block (the weirdest feeling in the world.....it "lasts" 24 hours!!) and the surgery was performed. Apparently there was a great deal of scar tissue from the xylafelx and subsequent attempts to break the cords, so one of the tendons was severely affected and I had to have that tendon removed. However, my finger is open. I have been going to Physical Therapy since December, and on Monday I travel back to the City. Let me say I have 100% use of both of my hands now. I can't totally keep the pinky straight---it wants to pull back down. I've worn a night brace every single night since December, and in the morning the pinky is pretty straight (85-90%). I still am doing exercises twice a day. By night it's not as straight as in the morning. However, there is nothing I can't do. My typing has returned completely (I had to devise a 9 fingered system that I've used for the past 5 years), I'm not poking myself in the eye when I wash, and I could wear gloves for the first time in several years this past winter. I can hold a rake, a toothbrush, a vacuum hose properly. The knuckle on the top of the hand always appears swollen, making the finger look less than perfect, but to me it's all about the functionality. I am down to one night a week for the night splint on my better hand, but quite frankly I don't see me without the night splint on the other hand for quite some time. I am going to ask the doctor if I can wear it once in awhile during the day for 8 hours so I can get a good night's sleep. We'll see. And although I didn't want surgery and ended up having it for a reason related to the Dupuytren's, I'm still very happy with my results. Of course there is no guarantee that it won't return, but it will never get to the stage it was, and the NA is so unobtrusive that if I have to go that route again, I would.
I hope you find success with your injection(s) and don't have to go any further in your quest for usage of your hand. Best of luck!! I am sure I will post again next week after my appointment.
Great information, thank you all for posting. I had the last in a continuing series of Xiaflex injections on Tuesday with the manipulation yesterday on the ring finger of my left hand. Unfortunately, the manipulation was not successful in "popping" the cord. The little finger was amputated several years ago in a procedure that fused the metacarpal of the little finger to the metacarpal of the ring finger forming a more aesthetic transition than the "stub". The scar tissue from the amputation and a previous palmar fasciectomy (PF) is quite noticeable and, it is theorized, that Xiaflex is less successful after surgeries than when done before. My case of DD is quite advanced in both hands.
Diane,
Congrats on getting into the clinical trials. I tried but unsuccessfully. Since you had surgeries prior to Xiaflex are they tracking success compared to a group that has not had surgery?
The injections are painful and Vycodin, from my perspective, is essential as is the freezing spray. I would recommend getting the prescription prior to the Xiaflex injections and taking one or two a few hours before. A physician who declines giving pain meds has never been on the other end of the needle in this treatment. My hand and finger especially are aching today. Based on my previous experiences you should be OK for work by Monday.
Dave,
I am surprised to learn the length of time over which Xiaflex treatment is being done. I had thought it either worked once or didn't and you moved to other solutions. My insurance company is less than pleased about the cost of Xiaflex. Not that I care. I did get some improvement of the two knuckle joints on the right hand but the PIP joints are fully contracted.
Marilyn,
I have also had NA and am led to believe it is also less successful after other surgeries. Of course, everyone is different and I have no data.
Everyone,
cschieber sent me the following link on this thread. If you haven't seen it you will find it very interesting. Dr. Lynn Ketchum has theorized that the causative agent of DD is found in the upper layers of the derma. When he does a PF he also removes the skin above the area and does a skin graft from the patients arm. The link is a 16 minute video presentation he did in 2010 at a conference. He had at that time performed the surgery on 125 patients and 200 hands with great results.
Congrats on getting into the clinical trials. I tried but unsuccessfully. Since you had surgeries prior to Xiaflex are they tracking success compared to a group that has not had surgery?
The injections are painful and Vycodin, from my perspective, is essential as is the freezing spray. I would recommend getting the prescription prior to the Xiaflex injections and taking one or two a few hours before. A physician who declines giving pain meds has never been on the other end of the needle in this treatment. My hand and finger especially are aching today. Based on my previous experiences you should be OK for work by Monday."
Brian,
I don't know if they are tracking successes/failures of Xiaflex compared with surgeries as part of this study. In fact, I kind of doubt it. I never had surgery on my right hand, and this is the hand that underwent the Xiaflex on Monday. My left hand was not as contracted, maybe just 20%, and without obvious cords, but I was also experiencing extreme pain in my fingers and hand. I'm talking SEVERE. When the surgery was done, the hand surgeon removed the diseased fascia, and also did a tendon release on my ring and middle finger. He told me that he wasn't even sure that the surgery would work, but my rheumatologist talked him into giving it a chance. It was a resounding success. I suspect it was because the pain of the tenosynovitis, and possibly RSD, drove me to an early intervention, wherein surgeons are not inclined to intervene until the disease gets markedly worse. How many times have we heard that here? I did develop new nodules after the surgery, one on my ring finger PIP and one at the base of my thumb, along with a pronounced cord on my thumb, but my hand never contracted, so I never needed further intervention. If it ain't broke, don't fix it. My right hand never developed that pain, so I just let the contractions go on for quite a bit longer, till they reached 35% and 30%, PIP and MCP respectively.
As for the vicodin, it really was a necessary part of the ordeal. My doc felt that tylenol would do the trick, and given the politics lately of narcotics and prescriptions, all docs are reticent about writing scripts for narcotics. I do get that. That's why we patients have to speak up, not be intimidated, and get what we need. I know I am so glad I did. I don't need the vicodin anymore, but I now take 1000mg of tylenol about one hour before I do my exercises. They do hurt like a sunnovobitch, but I also know that if I don't do them, this will all be for naught. That is unacceptable to me. If and when I undergo a second round of Xiaflex, you can be sure I'll be getting a second script. And, because I went into such an anxiety meltdown prior to the lidocaine injections, I'll bet dollars to donuts, they'll be giving me a script for valium.
Today, my hand is feeling better. But yesterday, I was borderline miserable. But, it's not the worst pain I've experienced. Nor will it be the last pain in my life. It is definitely do-able, and I'd do it again, and will do it again, if indicated.
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