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Thread: MACE / Malone Procedure

  1. #1

    MACE / Malone Procedure

    I am a 44 yr old female C6-7 incomplete spinal cord injury. 26 years post injury. My mom has been my caregiver for all my bowel needs. I have a worker through an agency paid by Medicaid but they won't pay the worker to help me with my bowel program. In 2012, I had a bladder augmentation and the mitrofanoff surgery done. I am so pleased with that and it has given me tons of freedom and independence. My mom is 70 and I'm so scared what will happen when she can no longer help me. I have an 11 year old son and don't want to end up in a nursing home just because I can't manage my bowel program. I've been researching things and came across the MACE / Malone procedure. This seems kind of promising to me and I'm looking for advice from anyone who may have had this procedure done before. Is it a good idea and what information can you supply me with?
    Thanks

  2. #2
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    Below is just one study I found that may be of interest. There were several others. My internet search criteria was "MACE and Spinal Cord Injury."

    Just as an interesting aside, I recently had an appointment with physiatrist who actually had spinal cord injury experience (it is so refreshing to talk to a rehabilitation doctor who actually has experience with spinal cord injury and isn't a worker's comp doctor and has never seen a spinal cord injury). We were talking about bowel program alternatives. Her comments were interesting. She said she has had a number of patients get a colostomy. Initially these patients hated the idea of the colostomy, but she hasn't had one who would reverse it now. She mentioned and described the MACE procedure, but said in her experience it is used more in children than adults, but it is an alternative. She said it was a reversible procedure.

    The Malone Antegrade Continence Enema and the Enema Continence Catheter
    The Malone Antegrade Continence Enema (MACE) is an approach using a surgically-created entry into the large intestine to irrigate the intestine (see

    figure 3). The procedure involves connecting the appendix to the abdominal wall and fashioning a valve mechanism that allows catheterization of the appendix, but avoids leakage of stool through it, thus forming an appendicostomy. Consequently, a catheter can be introduced to the patient through the stoma and an enema administered. Due to the wash-out effect and perhaps the stimulated colonic peristaltic, the colon and rectum will empty, thus preventing fecal incontinence and constipation. Three retrospective studies (aggregate N=42) examined the effect of MACE on bowel function (Table 12). There is level 4 evidence (from 3 retrospective reviews) that MACE successfully treats the neurogenic bowel and patients reported improvements including improved fecal continence, less time for bowel evacuation, reduced autonomic dysreflexia and improved quality of life.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3118252/

    Below is a basic diagram of the procedure and a table that has the results of three studies where people with spinal cord injury used the MACE one Antegrade Continence Enema) procedur
    Attached Images Attached Images   
    Last edited by gjnl; 01-19-2018 at 06:45 PM.

  3. #3
    Thank you I will look at the link you posted. I live in a small town in southern Louisiana. I don't see a physiatrist because I'd have to travel to far. I see my family doctor who hasn't had much experience with spinal cord injury and it gets frustrating at times but he helps me with my general problems. But my bladder has been my main concern and I see an experienced urologist in New Orleans. When I first started researching the Mitrofanoff procedure, I was finding that it was done in children. This doctor had experience with it and performed the operation and it's been the best thing ever. I'm hoping the same may be true for the MACE. I'm trying to get to where I can do it myself or at least with as little help as possible. I feel having a bag I'd need more help with changing, emptying, and positioning the bag throughout the day. I'm just starting my search so any opinions are appreciated.

  4. #4
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    Quote Originally Posted by daniellegaubert View Post
    Thank you I will look at the link you posted. I live in a small town in southern Louisiana. I don't see a physiatrist because I'd have to travel to far. I see my family doctor who hasn't had much experience with spinal cord injury and it gets frustrating at times but he helps me with my general problems. But my bladder has been my main concern and I see an experienced urologist in New Orleans. When I first started researching the Mitrofanoff procedure, I was finding that it was done in children. This doctor had experience with it and performed the operation and it's been the best thing ever. I'm hoping the same may be true for the MACE. I'm trying to get to where I can do it myself or at least with as little help as possible. I feel having a bag I'd need more help with changing, emptying, and positioning the bag throughout the day. I'm just starting my search so any opinions are appreciated.
    You may want to try to find a gastroenterologist who has some experience with the MACE procedure to get a professional opinion. You can tell from the few threads you found on this site, that it is a procedure not much discussed on this forum, which leads me to believe it doesn't have much of a track record with people with spinal cord injuries.

  5. #5
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    Quote Originally Posted by daniellegaubert View Post
    I am a 44 yr old female C6-7 incomplete spinal cord injury. 26 years post injury. My mom has been my caregiver for all my bowel needs. I have a worker through an agency paid by Medicaid but they won't pay the worker to help me with my bowel program. In 2012, I had a bladder augmentation and the mitrofanoff surgery done. I am so pleased with that and it has given me tons of freedom and independence. My mom is 70 and I'm so scared what will happen when she can no longer help me. I have an 11 year old son and don't want to end up in a nursing home just because I can't manage my bowel program. I've been researching things and came across the MACE / Malone procedure. This seems kind of promising to me and I'm looking for advice from anyone who may have had this procedure done before. Is it a good idea and what information can you supply me with?
    Thanks
    I am c6c7 don/t know what that is but I do have colostomy the best thong I have done same level as u so easy and not must fuss or mess its freedom I wish I had know about that mitrofanoff when I first got sci I like it better than msy sp but now 67 not going too you will never regret it getting it

  6. #6
    Quote Originally Posted by vjls View Post
    I am c6c7 don/t know what that is but I do have colostomy the best thong I have done same level as u so easy and not must fuss or mess its freedom I wish I had know about that mitrofanoff when I first got sci I like it better than msy sp but now 67 not going too you will never regret it getting it
    MACE/Malone procedure:


    A stoma is made surgically (usually using the appendix as the conduit) from the cecum to the skin. To do the procedure, you pass a catheter through the stoma and administer an enema "from above" which flushes stool through the large intestine and exits through the anus as usual. These have been done much more in children with conditions such as spina bifida than in adults with SCI/D.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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