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Large Incisional Hernia & Ehlers Danlos Syndrome
Almost two years ago, I underwent an emergency appendectomy, which ruptured between seeing the surgeon and the operating table. He had started it laparoscopic and converted to a full cut along my midline. That was a Tuesday night. By Sunday, my belly was swollen with an infection, so they scheduled another surgery (on Labor Day) to do a wash out and install a wound-vac. I spent 12 days in that hospital before I was transfered to a long term acute care hospital (diabetes, 3 IV antibiotics, wound care and general weakness). I was there antoehr 3 weeks before I was discharged home to a home health care nurse and weekly wound care clinic visits. this went on for until after Thanksgiving for the wound to close. the original hole was 18cm x 8cm, so I consider that quite lucky. a few months later my belly was still not pulling in as quick as I’d like. I was diagnosed with a Diastalsis Recti . I started the exercises under the blessings of my surgeon and got a hernia ace bandage. About two months later I noticed the right side was bulging from the incision. I didn’t think it was a hernia at first, until a visit to my oncologist radiologist (I had breast cancer and thyroid cancer in 2013). I kept trying to get my surgeon to do something about the hernia. after a 2nd visit to him and the urging of that radiologist he admitted that my hernia was more complicated than he was comfortable with, but there was a new surgeon joining the group in 6 weeks that specialized in laporascopic robot assisted hernia repairs. I was gungho to get with this surgeon. my hernia is uncomfortable and I can’t reach the floor properly.
well i met with this surgeon (Dr. Cook) the 2nd week of July. He scheduled a CT scan. in our discussion, he mentioned the possibility of a component surgery to repair it depending on how big it was. I met back with him this morning. My hernia is one of hte largest he has seen. It goes all along that initial scar of 18cm and past it to the pubis area. He does not want to it laparascopically.
So now, I’m to work on loosing some weight and getting my A1C lower. (current weight 272, 5’3″, and A1C last reading was 8.2) he wants me down to at least a 7.2 A1C. the last time I was at a 7.3 was a year ago in Sept.
My surgeon has expressed concerns about my Ehlers Danlos Syndrome and doing a component surgery on it., the type of mesh to use etc. Any suggestions?
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16 Replies
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Large Incisional Hernia & Ehlers Danlos Syndrome
Wow. This is fantastic news. Thanks for posting. Keep it up. Send us an update in 5 lbs!
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Large Incisional Hernia & Ehlers Danlos Syndrome
as of this week I’ve lost 31 lbs and 1.75 in from around my waist.
I’ve switched from the ace type abdominal binder during the week to a garter/girdle. (i normally wear a garter belt to begin with). Cortland Foundation is the maker. I wear the binder one on the days I don’t wear the stockings. I feel like my abdomen has pulled in a lot more since I started wearing the garter/girdle. (It also helps my buttocks too!!)the weight loss has been slow the past month or so. i’m losing about 1 lb every 3 weeks. That makes it lot harder to get closer to my goal of being in the 200-220 range. I’m at 246 currently.
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Large Incisional Hernia & Ehlers Danlos Syndrome
All excellent. Keep up the great work. You will reap the benefits.
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Large Incisional Hernia & Ehlers Danlos Syndrome
my blood work is better. my a1c is down to 7.7 from 8.2.
my iron levels are up to a 52!!! though my saturation is at 18% (it was at 32 in June)
my anemia is better too.
my cholesterol is 198 — first time its been below 200 (I can’t take statins)
my triglycerides dropped 50 pts too
my ldl direct is down to a 77
my hdl cholesterol is 33
my eGFR is stable at a 64
my fasting glucose that day was 98
my tsh is up a little to 3.04
my free t4 is 1.57i see both my endocrinologist and the surgeon tomorrow morning.
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Large Incisional Hernia & Ehlers Danlos Syndrome
thank you for your help.
i will pass this information on to my surgeon when I see him again next month.
we are dealing with the aftermath of the horrible floods here, not directly affected but where I work is. -
Large Incisional Hernia & Ehlers Danlos Syndrome
Hernia is big but not that bad.
Congrats On the weight loss. Every pound helps.
The rectus muscles are retracted. In my practice I would inject Botox to lengthen those prior to surgery. -
Large Incisional Hernia & Ehlers Danlos Syndrome
i have also managed to lose 13 lbs since 7/20/16 !!!! 😉
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Large Incisional Hernia & Ehlers Danlos Syndrome
pic 8
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Large Incisional Hernia & Ehlers Danlos Syndrome
pics 5, 6 & 7
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Large Incisional Hernia & Ehlers Danlos Syndrome
pics 3 & 4
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Large Incisional Hernia & Ehlers Danlos Syndrome
2 pics from ct scan
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Large Incisional Hernia & Ehlers Danlos Syndrome
i captured 2 of the screens from my ct scan below
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Large Incisional Hernia & Ehlers Danlos Syndrome
do you have any colleagues that do this method in the Louisiana area?
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Large Incisional Hernia & Ehlers Danlos Syndrome
Botox injection is performed by some Pain Management specialists and some surgeons. The neurotoxin is injected into the muscle, relaxing it, then allowing surgery on a more relaxed and lengthened muscle, so that the repair is not under tension.
Sandwich repair is using mesh on top of and under the repair. I use it in situations where the repair may be tenuous.
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Large Incisional Hernia & Ehlers Danlos Syndrome
Yes I have EDS. Type 3/Hypermobile. I can do all 5 of the tests easily (or at least before this hernia for putting my hands on the floor behind my feet).
what do you mean by the botox injection? can you give more details on a sandwich repair?
my surgeon is open to any suggestions while I lose weight etc.
I’ve had other stomach surgeries (laparatomies for exploring/fixing female problems, etc), so i know i can tolerate that type of procedure with a good recovery. i had a single mastectomy (r side) and thyroid removal the same day and was back at work in 3 days. the appendix has been the main one that i’ve had a huge problem recovering from. (other than vomiting from anesthesia which is better when they give my chemo anti-nausea drug, and the bowel restarting after being juggled around).
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Large Incisional Hernia & Ehlers Danlos Syndrome
Do you really have Ehlers-Danlos syndrome? If so, what type?
In my experience, the best repair is a primary closure with very wide synthetic mesh implantation, even a sandwich repair, as most patients with EDS dehisce from a minimalist approach. Also, I would try not to do a component separation, if possible. One consideration is Botox injection. This is because the released tissue will then bulge out from the component separation and that is a much more difficult problem to treat and also a very ugly outcome.
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