Ten years ago, I had appendicitis but thought it was just gas pains. I took a hot bath and the pain went away. One week later, Friday evening, I developed severe pain in my LEFT lower abdomen. I went to the ER and spent quite a few hours there as personnel tried to diagnose my condition. I was diagnosed with either gastroentereritis or constipation. I told the physician it was neither because I had a good and normal bowel movement that morning. I was sent home.
I spent the weekend from ***l on the bathroom floor as the left side of my intestines flipped to the right to cover up the infectious fluid so it wouldn't spread to other organs. I made it to my family physician's office Monday morning with "the death scent". He immediately admitted me to the hospital, ordered IV antibiotics, blood and urine tests, IV Glucose/saline, and vitals monitoring every 15 minutes. Then, he spent the next 5 days consulting with internists, surgeons, and arguing with my insurance company (HMO) about whether or not laparoscopic surgery could be done to see what was going on.
I finally had surgery the following Saturday. My appendix was removed, abdominal contents cleaned up, and the surgeon told me he "rebuilt my belly button", whatever that means... I know he cut through my linea alba and so that had to be reapproximated.
Five years ago, I had open incisional hernia repair with 3x6 polypropelene mesh placed. The surgery was performed by a different surgeon. When I went back to him for my 6-week checkup, I told him there was a very large knot (about as big as a gold ball) at the base of the incision. (He had used the same incision). He told me, "Don't worry about it. It's okay. It won't come undone".
Over the last two years, I have had increasing and puzzling symptoms. I developed a "knot" on the underneath side of the base of my left little toe. I developed knots in my left labia and my left labia became twisted. I experienced increasing lower back pain, but only on the left side, and pain in my left hip that radiated down the FRONT of my left leg. I also developed severe cramping of my left calf muscles.
In January of this year, I went for a myofascial release session (a type of massage). I never would do anything more to my abdomen than apply lotion and I never let anyone else massage my abdomen. But, during that session I decided to let the therapist work on my abdomen. The next day that knot at the base of the incision "unraveled"... that's the best word that comes to mind because of the sensation I had of a big ball of rubber string unwinding very quickly. Some of the "strands" got caught in each inguinal region. I immediately called the therapist. He suggested I have another session the next day. I did, and that session was very painful, as I had burning sensations in each inquinal region and all throughout my lower abdomen. That "knot", although smaller, moved from the lower mid abdomen to the lower left abdomen.
Over the course of the next few weeks, I developed even more puzzling symptoms. I felt like all the fascia on my left side was twisting. The sensation went from my left foot all the up my left leg, hip, pelvis, left abdomen, left sternum, left hyoid bone, left jaw, left side of my skull and left eye socket. By the end of April I had experienced numerous episodes of difficulty breathing because it felt like something was cutting off my trachea. Then, I woke up one morning and could feel a "strand" move around behind my left eye. I massaged my abdomen a little and that sensation went away and has not returned. Symptoms of abdominal hernia also steadily increased thoughtout this time.
I went to 10 different doctors between the middle of January and the first week of May, including 3 visits to my family physician, a gynecologist that did a pelvic sonogram (normal), an internist to check for colon/bowel problems (none), two trips to the emergency room in April and May, and five surgeons.
Yes, I went back to the surgeon who did the surgery five years ago. He refused to do any surgery on me because, even though I had two small hernias on CT scan, there was no bowel perforation or protrusion. He suggested I go see a neurologist to get checked for a brain tumor! That surgeon even refused to give me a copy of my medical records, said I would have to get a court order to get them. Hey, isn't that against the law???? Anyway, three of the other surgeons were no help. One suggested I go see someone who deals with mixed connective tissue disorders. I told him that my connective tissue is definitely mixed up and disorderly but not because of some immunologic disease. One told me that "the fascia doesn't do that... what you are experiencing is impossible." The other surgeon said he did not want to take my case because he didn't like to deal with other surgeon's work unless necessary, and he suggested I go back to the surgeon who did the last surgery.
The last surgeon I went to flat said he didn't understand a lot of my symptoms, but since I now had 3 hernias on CT scan that he would go in laparoscopically and look and either add another mesh laparoscopically or do open surgery, take out the existing mesh and replace it. I agreed, thinking surely he would be able to see that the existing mesh would have to come out. Was I wrong!
Surgery was done May 11, 2007. He inserted another bigger mesh on top of the old one laparoscopically, using nine different laparoscopic incisions. (My abdomen looked like someone used it for target practice.) When I awoke from anesthesia, I was in more pain than before the surgery! Yes, the little incisions were sore, but I had excrutiating pain in my left lower abdomen... again. Everyone within 20 feet of that room could here me screaming, crying and cussing. I asked to see the surgeon and was told he had gone back to his office. It was just before noon. I demanded to see him. When he did come in, I let him know exactly how disappointed I was with his work. He examined my abdomen and commented that he was worried about the lower area. Yea, I was too!
Since then, the little incisions have healed nicely, except for the area of the lower left-to-middle abdomen. That area is still extremely painful. I have worn the post-surgery hernia binder at all times since the surgery, just taking it off long enough to shower. On June 27, I took it off long enough to shower and to wash and dry it. That was a big mistake! Since then, the pain in my left lower abdomen has become worse. Every time I stand up, twist a little bit, or try to lie down, the pain is so much that it makes me cry out. I have gone back to see that surgeon twice. He is not willing to do anymore surgery on me and suggested I go to pain management. That's a short-term fix that may not be very effective. I need a long-term solution, open surgery with mesh replaced and abdominoplasty.
At this point, I need to find a general surgeon who will do open surgery to remove both meshes and replace with new mesh AND a plastic surgeon who will do an abdominoplasty, both at the same time. I have not worked since the end of February and our savings is gone because of all the running from doctor to doctor, tests, pain medication, surgery, etc. I can't afford to keep going to surgeons hoping to find one that will take my case AND who will bring in a plastic surgeon also.
IF ANYONE KNOWS HOW I CAN FIND SURGEONS IN MY AREA WHO WILL TAKE MY CASE, PLEASE LET ME KNOW! I tried contacting physician referral agencies, the National Institutes of Health, and my insurance company. None have been helpful. I know there is one plastic surgeon at the University of Maryland who had a case similar to mine (he wrote a paper about it), but I don't have the money to go to Maryland to have surgery if he would take my case. I NEED HELP so I can get a life again, go back to work, be able to exercise again, have a sex life again, etc. I have NO history of any immunologic, neurologic, digestive, muscular or psychiactric disorders other than the burst appendix and resulting peritonitis.