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I have the genetic condition of Ehlers-Danlos, which is the connective tissue disorder that affects the entire bodily system. Depending on the type, the sypmtoms vary. I am not sure how familiar you are wtih EDS, as it is known, but there now is a National Foundation in LA. I have a mixture of 3 types: hypermobility, Classical, and Vascular. Throughout my lifetime, in my 60 years, I have had many misdiagnoses and treatment errors.
At any rate, I am describing one of the most life-threating events that staarted the beginning of a continual nightmare. I have had 3 unsuccessful hernia repairs. The first repair, done without mesh, resulted in such massive infection I became septic & was not expected to survive. The surgeon who originally was going to do the surgery did not tell me that he was to have back surgery the next day, & I would be under his partner's care. Three days postop I realized I had an infection. I've been an RN for 30 years, & spent most of my nursing in the OR, so when I saw the abdominal distention I went back to the surgeon. He took me to the OR to replace the JP drain (a silicone tube in the wound that has a "grenade" shaped container to hold drainage). Because of the difficulty I've had with IV's in my veins, I had a PICC line (a deeply inserted IV that goes into the heart from the arm). I had to be returned to the OR at least 4 times to replace the JP, which either slipped out, clogged up, or got displaced.
With my nursing experience, when a patient had a postop abdominal infection, we usually would open the incision, drain out the fluid, & irrigate the cavity with antibiotic rinse, along with giving antibiotic IV's. I begged the surgeon to do this, as his treatment was obviously not working & I was getting sicker. He sent me home each time as an OP, & had me administer syringes of antibiotics. which gave me a horrible reaction. In addition, my PICC line was moved to my other arm, & also became infected. I was admitted through the ER, & by this time I felt as if my life was leaking out of my body. When the Infection Control Dr. came to the doorway of my room, he said he refused to treat me because I had so many medication allergies. I asked him if I should write my will.
Another Infection Control Dr. came in the next day, & stated he wasn't on my insurance plan but he would treat me. His first statement was that I needed to tell my surgeon that if he did not open me up & drain out the infection I would not make it out of the hospital. I told him that is what I had begged for at the very beginning of the infection. The surgeon finally opened me up & did the irrigation & drainage (I & D) as the final result, & by that time my abdominal tissues were so ravaged by infection I could not be closed after the surgeon had finished with what he should have done in the beginning. I was sent home with my belly split wide open & packed, with instructions for packing it & hanging my IV's.
Although I had Home Health, my dear husband did the main duties for me..an amazing man! About a month later I was sewn back together. Within about 6 months, I had the abdominal bulge back. Since I refused to go back to this surgeon, I sought out one I had worked with in the OR. He repaired me using mesh, & all seemed well until about the same 6 month span, when the abdominal bulge was evident. However, when I went for a postop visit, he stated that my muscles were just "stretched out" from my EDS, & felt there was no hernia but just loose muscles that he would not attempt to repair.
I sought out another local surgeon, who stated that he would repair the hernia by using laparoscopic technique, which made healing much easier. After surgery he stated I had a "huge hernia" & had replaced the mesh. This lasted about a year, & again I became extremely frustrated & upset when the surgeon refused to do anything more, also blaming the failure on my EDS. By this time the abdominal bulge was increasing in size.
By June of 2005, my 33" waist had been completely lost to a 42" bulge. I had problems eating anything other than soft foods, & by June 4th had problems with pressure on my diaphragm & difficulty breathing. To complicate matters, I have titanium rods in most of my lumbar spine from 3 previous surgeries when my spine came apart (this is another whole story), & my nerve pain in my back, legs, & feet had increased from the postural change with the abdominal weight. With these symptoms, along with nausea & increasingly difficult bowel problems despite daily softeners & laxatives, I went to the local ER, where I was admitted with a bowel obstruction.
When I got to my room the attending Dr., whom I had seen in a previous admission &"butted heads with", told me that I was going to surgery. She then asked me if I was sure I wanted this, since I was going to die on the table. She didn't even tell me what was going to be done, & when I asked her what she would do if she was in the position I was in, either possibly dying from the obstruction, a real possibility if the bowel twists, or taking a chance with surgery, she left the room.
My previous surgeon, who had done the last procedure, came in & told me that I would die on the table since I was so "high risk", though he would not tell me why he was saying this. I was told that my surgery was postponed until later in the day, but when an RN later came in with a nasogastric tube (NG), she told me that there would be no surgery but only the NG treatment. I've had 6 sinus surgeries (another story), & have a lot of scar tissue in my sinus cavities. As we know with EDS, the formation of excessive scar tissue is another complication of the disease. I explained this to the nurse, but she had a job to do, which I can understand.
However, when that tube was pushed into the sinus area to go through so it could rest in the lower abdominal area, the pain from the scar tissue breaking just about put me on the ceiling. Once it was done, I sat there for 5 days with the NG, & was not given any meds for the 1st 3 days. When I told the Dr. I had better be given my heart meds for the arrythmias I've had since 1979 (another EDS symptom) or he'd be treating more than the obstruction, I finally got my meds on the 4th day. At discharge, when I asked about the recurrence of another obstruction when the decompressed bowel went back to normal, I already knew the answer I was given: it can return at any time.
I told the Dr. I knew this is potentially fatal. I had seen it in my own experience in the OR, & knew this was what killed one of the BeeGee brothers. Once twisted, gangrene quickly sets in & poisons the entire abdominal cavity, killing the patient. I was told that the only treatment they would give me was treating me with the NG, as the surgeon made it clear to me that he refused to do any surgery. Since June my abdomen is now over 46". I cannot wear any of my clothes, & even my underwear & jeans sit below my abdomen almost on my pubic area when I try to wear them, despite the fact I bought 2 sizes larger than what I always wore.
I recently went to my usual checkup at my neurosurgeon to monitor my spinal condition, & usually would have X-rays taken. When my surgeon's PA saw me, an amazingly knowledgeable woman, whom I dealt with for over 5 years, she immediately told me she never saw me look this bad. She did not want to do anything for me until my hernia was fixed, since she felt this was an urgent matter and was affecting my spine, & gave me a surgical referral. I must say she is the most well versed medical person in EDS than any Dr. I've ever dealt with. She stated I cannot go on like this, & when I told her about seeking other surgeons since my last one, with every surgeon (now over 8) refusing to see me or treat me, she was shocked. She hoped this surgeon she knew might be my answer.
At my 1st appointment with this man, he stated the magic words, "I think I can help you". He evaluated the size & area of the bulge, & was very concerned about my bowel obstruction. He explained the mesh he uses, twice the strength as the usual type, & the method he would use, which matched the technique I read about in the EDS medical info. He also said he would go deeper so he could remove the intestinal adhesions he knew I had. I was ecstatic, & he scheduled a CT scan "just to help him find the borders" of the hernia he felt on palpation.
At my 2nd visit I thought I had the wrong Dr. His attitude was a "180" from my previous visit. He stated that the CT scan (I could not take the dye part since I have a severe iodine allergy) did not show anything wrong, & he would not touch me as far as surgery goes. He said he didn't want to cause any more adhesions. contradicting what he said on my 1st visit. He then felt my abdomen again & stated he could feel the hernia, as he did at the last visit, but repeated that he would not treat me.
I felt as though someone had sent him a note saying "don't touch this woman". I completely broke down & just walked out of the exam room without looking back. When I called my husband, I was so hysterical he said he was leaving work to pick me up. Since my 2nd spinal surgery I have been unable to drive due to the nerve damage in my legs & feet, along with all the pain meds which affect my driving reflexes. I am now still seeking surgical help. I've been reading about the Lichtenstein Hernia Institute in LA, & will continue my search to repair this before I go through another obstruction. I want to be able to eat normally, have normal bowel behavior, & be able to fit into the 19th century clothing I wear when my husband performs as the 19th century real African American cowboy, Nat Love, who wrote his autobiography in 1907.
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