Surgery options |
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03/10/2003 23:51
Mary Bethnot registered
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03/10/2003 23:51
Mary Bethnot registered
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Surgery options
My husband, who has suffered from DC for approximately 20 yrs, has had three surgeries to his left hand and one to his right. He has such strong recurrence in both hands as well as very excessive scar tissue build up. We were never told that there were different approved surgeries available for DC relief. The surgery performed on him all four times was Fasciectomy, which is probably the same one that anyone on this forum has had. Very aggressive and extensive with jagged cuts, many stitches and a difficult recovery period. This is the surgery where skin grafting is not done even though we now know that if it had been his recurrence would possibly not be as great. That is a different type of Fasciectomy, (radical palmar fascie- ctomy.) I have learned that a much less invasive/aggressive surgery used to be the norm for DC. This is a quote from the Talon Topical Verapamil website explaining Fasciotomy, the less aggressive surgery..."When the bands are cut through small cuts in the palm. This can be done under local anesthetic (awake with numbed hand), but is reserved for elderly who are unfit or unsuitable for more complicated surgery." Regardless of whom it is usually reserved for, it sounds as if the purpose is release of contracture with nominal cuts/recuperation etc. (Same goals as the french needle Aponevrotomy that we keep being told is not legal in this country) After all a small cut to access the cutting of a band may not actually be very much larger than a needle. The second interesting quote is from http://www.combel.org /History.html which is under their Conclusions on DC "...the surgical approach of Dupuytrens Disease has swayed from the very simple closed fasciotomy to the very aggres- sive radical palmar fasciectomy. The less traumatising techniques were often found insufficient to correct the contracture and to bring lasting improvement. The more aggressive operations were developed on the unfounded hope that recurrences could be avoided. This has never happened and these techniques were responsible for a great number of complications." Since my husband has terrible recurr- ence, very excessive scar tissue and nerve and vessel damage, even though he is not elderly, we are going to push for this surgery. Just wanted everyone else to have the opportunity to question your surgeon's about it too.
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03/10/2003 23:54
julinot registered
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03/10/2003 23:54
julinot registered
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ditto
Mary Beth,
Fasciectomy seems to be the procedure of choice for american hand surgeons. I have similar aggressive disease and will soon need another surgery soon. After two faciectomies, I would like to find a surgeon who would perform the "less envasive" fasciotomy. My own personal rationale is that I have been through the collagenase program at stoney brook and I am a firm believer that this will some day be the treatment of choice if the FDA would get off their butts and approve the phase three trials before BTC goes bankrupt. I live on the east coast usa. Do you(or other readers) know of any surgeons who would perform a fasciotomy?
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03/11/2003 23:35
Mary Bethnot registered
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03/11/2003 23:35
Mary Bethnot registered
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Fasciotomy
Julie, Sorry to hear of someone else with a severe case. Even though I don't suffer from the disease, I see the pain and inabilities that my husband deals with everyday and it is heartbreaking. Since I have been with him each time a doctor has acted as if nothing can be done but the aggres- sive Fsciectomy, which has not only worked but made his condition worse, I feel like I can understand the frust- rations you all feel. I only found out about the "other" procedure about 1 1/2 wks ago. I am also on the east coast, so as soon as I learn of someone I will post or email you immediately. However I think the first step for us all is to go to our Dr.'s with the information that we now know about this alternative and insist that they discuss it and consider it. Hopefully for us both this knowledge can be power. After all it is obviously approved, unlike the other treatments everyone has been asking for. I have emailed one Doctor who would not commit by email, but ac- knowledged it is an option and agreed to an appointment to discuss it. We hope to see him within a week or so and I promise to let you know our results. Ask your doctor and let me know to. Thank you, Mary Beth
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03/11/2003 23:25
Sean,not registered
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03/11/2003 23:25
Sean,not registered
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Fasciotomy
Mary Beth, This topic has been covered considerably on this forum. What you have discovered is that for many people with an aggressive form of DC, it is difficult to slow down DC. For most people, a limited fasciectomy has a better (or less) rate of recurrence than a fasciotomy or NA. This will vary however, depending on each person's situation. A fasciotomy is not unusual, as you suggest. My surgeon discussed the procedure with me, but said from his experience, the limited fasciectomy was a much better procedure for most people. My limited fasciectomy worked very well. Finger is normal with 0 degrees contraction and scar that can't be seen. It has only been about a year, so it is a guess what the future holds.
It is a debatable subject, whether or not all of the diseased tissue should be removed. For many it seems to be best, but for some it perhaps is not the best or difficult to determine because they have such an aggressive form of DC.
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03/11/2003 23:02
Mary Bethnot registered
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03/11/2003 23:02
Mary Bethnot registered
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fasciotomy
Sean, How wonderful to hear that you are fortunate enough to have found an open minded and honest surgeon. After three surgeons and two General Practitioners have told my husband that fasciectomy was the only treatment/surgery available for DC, and after noting that on the many Web- sites sponsored by Doctor's it is repeatedly declared that fasciectomy is the only treatment for DC, I really believed I had stumbled onto something special. I had to learn what a fasiotomy was from a prescription lab website, and a research paper. Please hurry and give us the name and email address of this Dr. so that Juli, myself and others like us can make contact immediately.
Mary Beth
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03/13/2003 23:32
Wendy
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03/13/2003 23:32
Wendy
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Surgery
Please let me know the name of the doctor you are discussing. I had the jagged incision surgery six months ago on my left pinkie finger and now there are lumps in the palms of both of my hands. The right hand seems to be quiet at the moment but the left hand continues to "blossom" day by day. I am also on the east coast. Heard about the hand center in Manhattan. My husband's friend had his surgery there and he has healed marvelously and has had no recurrences in more than two years. But even he told me that the hand will never be the same (my surgeon told me the same thing).
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03/14/2003 23:51
Julinot registered
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03/14/2003 23:51
Julinot registered
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Fasciotomy vs. Fasciectomy
I live in northern Delaware. My hand surgeon is Dr. Sowa at first state orthopedics. He did my surgery in 1999. In my opinion he did a very good job. Since my contraction was so extreme, I had no choice but to have a fasciectomy. I did lose alot of functionality of my hand, but this is just the nature of this surgery. I will need to have surgery again within the next year. I would prefer to have a fasciotomy, I'm willing to bet that Dr Sowa would not recommend it though.
My rationale is that I would like to have a limited invassive procedure that it would get me by for a few more years. Perhaps by then the collagenase procedure will be approved.
I was lucky to be able to partcipate in the collagenase program at SUNY Stoneybrook, and had good success, but since the enzyme does not completely destroy the entire cord/nodule it acts very much like the needle procedure. The remain collagen continues to produce cells and a cord (may) eventually return. Therefore in aggressive disease cases like mine, reoccurance is more likely, and alas it has returned. Unfortunately, I have had my allotment of injections and must find an alternative until collagease is approved.
Dr Hurst(stoneybrook)is the hand surgeon responsible for the collagenase program. He also does conventional surgery, so this may be an option for you if you are in NYC.
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03/15/2003 23:57
Mary Bethnot registered
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03/15/2003 23:57
Mary Bethnot registered
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fasiotomy
To anyone interested, but especially Juli and Wendy, I would have posted sooner, but our daughter was out of school Fri., so we took a long weekend away. Let me say that I am not saying that there is not a place for a full and aggressive Fasciectomy. For many patients this may provide what they need. I actually know of two people, our stockbroker and home owner's insurance agent, who had this once, a number of years back, no recurrence, good results, they have no complaints. All patients are not the same however, and sometimes I think that Doctors forget this. I do not suffer from DC but my husband does and he has a very aggressive case of DC. He has had 3 faciectomies in his left hand and one in his right hand. His right hand has been far behind his left in the symptoms of this disease but he now has a lot of contracture in his right hand. His left hand, after three surgeries is VERY contracted and his scar tissue is terrible. He also has nerve and blood vessel damage, lack of feeling and has had two surgeons say that as his pinky finger goes, amputation is probable. I think that there is a tendancy for many Doctors to treat nodules, cords and overall contracture as the disease, when in act- uality it is not the disease but rather a symptom of the disease. I can accept that at this time there is not a known cure for the disease, which could be anything from genetic cause, weakened immune system that allows the nodules and cord to develope (just as our bodies can pro- duce kidney stones, gallstones, keloids to name a few unhealthy substances. My husband is at a point that an aggressive, invasive surgery is not in his best interest. We know that but surgeons do not always agree. That is why I created this topic about fasciotomy. I think that people with very aggressive DC need a less invasive option. This is not rocket science and I don't work for NASA. This is just discussing an approved procedure for US patients that is what the Europeans have always known. Surgery in and of itself can, in some patients, be trauma, which can make the disease worse. We have recently visited a Dermotologist who is going to the ends of the earth, or as she put it, "I promise, I will leave no stone unturned in trying to help you." to try to gain all of the information she can. (I am about to create a new topic about this, but wanted to res- pond to this topic first). The best that I can tell you right now about fasciotomy is that I have communicated with Worth Williamson, The Hand Surgery Clinic in Greenville, SC about surgery for my husband. He has not committed, nor have he or any of the surgeons he works with examined my husband, but when I asked about a fasciotomy in my last email to him he said they were willing to examine my hus- band and discuss what surgery would be best for him, taking our wishes into consideration. This may seem minor, but let me tell you, after all of the Dr visits where we have asked about why the needle aponevrotomy is not done in the US, if it can be done, etc and are always brushed off with, this (Fasciectomy is what you need and all that is available) I am glad that a surgeon has admitted to us that fasciotomy is real and feasible. I have noticed that Sean, who is always there with a response but never with a solution has not responded with his surgeons name who discussed the procedure with him, yawn, typical Sean if you read the forum much. I suggest you ask your doctor about fasciotomy and see if you get anywhere, I have two that I'm going to ask and I will let you know. Thanks and good luck! Mary Beth
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03/16/2003 23:20
Sean
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03/16/2003 23:20
Sean
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Fasciotomies
Mary Beth, I apologize for not answering your question immediately. We have been gone for a few days. Why the derogatory remarks? Why the hostility? If you are looking for a solution about DC from me, I don't have one. It is common knowledge that DC is different for everyone and that everyone acts differently to the different procedures. It is also common knowledge that for some people (like your husband), there are no procedures that will be effective. Fasciotomies are a common procedure and if that is what you want, I'm sure you can get one somewhere close to your location. If you needed brain surgery (or heart surgery), would you tell the brain surgeon the type of surgery to perform? The diathesis of your husband is obviously the main problem for his situation with developing DC and his reaction to surgery. If you don't like what a surgeon tells you (or your husband), go to a different surgeon. Don't get bitter. Each surgeon is going to tell you what has worked best from his/her experience. Almost every website of the different hand clinics around the country mention fasciotomies as a common procedure. They usually say that they are generally reserved for older patients, however, because limited fasciectomies have a track record for providing longer lasting relief (less recurrence) for most people. My surgeon was/is in Colorado and I wouldn't consider mentioning his name on this forum. There is just too much hostility toward surgeons by many who have an unfortunate diathesis.
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03/16/2003 23:42
Mary Bethnot registered
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03/16/2003 23:42
Mary Bethnot registered
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Fasciotomy
Sean, I am not hostile toward you and apologize for remarks that are to the contrary. I am only on this forum and have only posted for two reasons. One is to obviously gain any information (not cures, I know you or no one else has that) and to share any information that I have found with others. This forum should be used for that reason only by all of us. I also need to say that I do not have hostility toward Doctors. We have friends who are Doctors and a history of some wonderful Doctors. My Ob-Gyn, our child's Pediatrician and many others are tops. The first surgeon who operated on my husband's hand, a Fasciectomy did a great job, I believe the best that he could have done and at the time of that surgery I believe that is exactly what he should have done. When the recurrence became such that surgery was needed again he quite honestly told us that he felt that he was not the person to do it and referred us to someone with more experience in the field of DC surgery. He dealt with us with nothing but a desire to get the best care possible for the patient. I would recommend him to anyone. It has been with the last two of the four surgeries that we have become very displeased and have decided to be more assert- ive with what is to be done and how. Both times skin grafts were promised, but not done. The last time, when the surgery lasted approx. 2 1/2 hrs, as opposed to the approx. 5 hrs of the previous times, and the contracture was not improved in any noticeable way, we of course lost all faith in that Dr., especially when 2-3 months later he said,"We just need to do it again and soon." Obviously we will not consider that surgeon again. With all this said, it just brings us to where we are which is, if we are not the advocate of his problem who will be. As you said, yes he has an unfortunate diathesis and that is no one's fault. However the scar tissue, damaged nerves and blood vessels while quite possibly not being anyone's fault either are an issue that must be weighed into any further surgeries or treatments. I have not been active in the forum to the degree that you and some others are, nor for as long. If there have been considerable postings on fasciotomy in the past please direct me to them. I am interested in what information may be there. I meant what I said in my first response to you on this topic. It is great that you had a physician that discussed different procedures. You and your Doctor obviously made a decision that worked for you and that is how it should be, regardless of the procedure, you were informed, educated, and had input. We actually asked before the last surgery, isn't there something that is less invasive that can be done just to give him some relieve, and were told that there wasn't anything except what had already been done (Fasciectomy) and that some people just had to have it repeatedly. When I found out about fasciotomy I was very upset that it was not even mentioned as an alternative. You are correct that I will be able to find a Dr. to do just that because I will keep seeing Dr's until I do. You asked if I would tell a brain or heart surgeon what surgery to perform. You and I both know that I wouldn't, however if I were where I am with the DC, with any other ailment, I would become educated to what could be done, ask a lot of questions and find a surgeon that I felt good about. Good luck to you and any inform- ation that you feel comfortable sharing will be greatly appreciated. Mary Beth
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