My friends and family have described me as an energetic, active, creative, self-confident, independent individual all my life. I am an avid motorcyclist, artist, business owner, mother, grandmother and in a serious relationship with a wonderful man who I met only a few months before my surgery. All of these very important parts of my life have been greatly damaged by the severe constant pain and life altering effects of a failed TOTVT surgery.
The first week in April I went to a wedding out of state and experienced leg pain when I walked which caused me to stay behind from site seeing trips with the others in my group. I assumed my leg pain was from the shoes I was wearing, walking on concrete, terrain factors, my age, etc. In fact, it was the first sign of things going wrong with the mesh tape.
During the next few weeks I started to feel tightness in my left leg. Then I squatted down and felt a sharp pain, cramping and pulling in my inside left thigh and groin. At that time I thought I had pulled a muscle. As the days passed my left leg and knee began to swell and the pain continued and then became worse to the point of not being able to straighten up fully or walk without extreme pain. I started to get large patches of varicose veins on my left leg. On a few occasions my left leg turned purple and once developed large red blotches and discoloration. The pain in my groin became more intense and I began to realize that there was something seriously wrong with the mesh tape. I contacted my surgeon and she determined that the left side of the tape was causing the pain and needed to be removed. I underwent a second surgery.
Within a few days after surgery I had to return to the doctor. It was determined I had two types of infection. The next day I had to be taken to the emergency room because the pain in my leg and groin had become so extreme and severe. They did an ultra sound to look for blood clots but my veins and arteries were clear. The ER doctor stated that he thought a nerve was encapsulated or entrapped by the tape. I was placed on large doses of narcotics to try to control the pain and went to see my surgeon the next day. An MRI, physical therapy and a referral to Mayo Clinic was ordered.
I was seen by a pelvic reconstructive surgeon at Mayo Clinic. He said that he suspected that the tape had torn and was either cutting me or had encapsulated a nerve and muscle. Using a third surgery as a last resort, he injected me with steroids and pain killers both internally and externally in an attempt to calm down the nerves and muscles in my left leg and groin. The pain from the exam, as well as the injections, was indescribable it was so extreme and intense. The next morning I coughed hard and felt the right side of the tape tear and immediately had a searing pain in my right groin as if I were being cut internally. The steroids did not work. The pain increased and became excruciating. I continued to develop varicose veins on my left leg and then developed them on my right leg also.
The day after returning to home, I saw my surgeon because my pain was so intense. She took one look at me and said I needed to have all of the tape removed. She placed me on a large dose narcotic pain patch, more narcotic pain pills and medication to calm the nerves. She called Mayo Clinic and I left the next day for to undergo a third surgery to remove all of the tape. Approximately 80% of the tape was removed. My doctor stated he could not get the rest of it without filleting my muscles open because the tape was so embedded in the muscles. He said that the tape had cut the membrane that protects my groin and leg muscles and nerves. I now have about a 7 inch abdominal incision, a 2 ½ inch incision in my left leg by the groin, a 3+ inch incision in my right leg by the groin and about a 3 inch internal incision.
The day after returning home from my 3rd surgery, I once again had to go to the emergency room because the incision in my right leg had opened up. I developed MRSA, a life threatening staph infection, in both leg incisions. The left leg incision had to be opened also. As required by my doctor, my incisions were scrubbed till they bled and packed twice a day in order to expose good tissue so that they could be surgically stitched again and a drain tube put in. The several weeks of cleaning, scrubbing and packing of my incisions was excruciating. Finally, I had a 4th surgery to close up the right leg incision. Within a week the drain tube failed and had to be removed requiring more cleaning, scrubbing and packing of yet another open incision. Again, I had to endure another extensive length of time in severe pain.
I support myself as a remodeling contractor and own my own business. I have worked very hard and tirelessly for 10 years to nurture it into a successful stable business. Since this nightmare began, between the severe pain and constant use of narcotic pain killers I have been unable to manage and run my business. I have difficulty walking, getting in and out of my vehicle and driving which prevents me from being able to make client calls, do estimate measures, or check on work in progress for quality assurance. I cannot sit at my desk for any length of time to write estimates, enter client materials or send out billings because of the severe pain that I experience. My business and ability to support myself is failing and close to non-existent. I cannot find a different source of income because the debilitating pain I experience forces me to have so many physical restrictions. I have applied for disability and assistance and have been declined.
For months, I have not been able to do even the most simplest of tasks. I have great difficulty concentrating and thinking because of the narcotics I am on and the constant pain. This whole ordeal has been extremely life changing. It has altered every aspect of my life. I have four grand children who I used to go see regularly. Now I cannot. I miss them greatly and long to see them but can't do anything about it. I am being deprived of my family whom I love so dearly. I have accrued massive debt because of my inability to work. I am completely disabled because of the pain and drugs. I am not able to socialize which is so very important to me. I cannot go on dates with my boyfriend. I have difficulty doing basic household chores and frequently need assistance. It takes me most of the morning to just get dressed because I experience so much pain. I am artistic and creative but can't paint or draw because I can't sit at my drafting table or concentrate on what I'm doing. The only chair I have been able to tolerate for months is my recliner in a reclined position.
My incisions are now healed but the constant severe pain remains. It is debilitating and prevents me from being able to lead a normal productive life. I still take volumes of medication to try to control the pain. I have no quality of life. I am so tired of the pain. I am so tired of taking pain killers. I am so tired of being dependent on everyone for everything. I don't want to spend the rest of my life disabled, reclined in my recliner or in my bed day after day, drugged and in pain. I want to be active again. I want to have as much of my life back as possible.
I have been evaluated by a pain management specialist for a NeuroStimulator spinal implant which will replace the pain signals sent to the brain with a massaging sensation. That will be such a welcomed relief. I will be able to walk normal again, be productive again, lead a normal life again and support myself financially again. I'll be able to play with my grandchildren, go on dates with my boyfriend and ride my motorcycle again. The surgery is expensive, $100,000 expensive. I have insurance but they say they cannot make a pre-determination approval to cover the cost of the surgery. Somehow I need to raise the money for the surgery and to help with living expenses during my recovery period. I need help to pay off the $35,000 of debt I now have because I have not been able to work for close to a year.
Please, please, help me pay for the NeuroSimulator surgery, post surgery living expenses and debt. It's my only chance at regaining my life and what I have lost. Please help me to reach out to people by sharing my story with your family and friends and by posting it on Facebook, Twitter or any other social media. Thank you for your donations, generosity and prayers. Any amount will help. God Bless all of you.
And finally, please tell anyone you know who is considering having TOTVT surgery to NOT go ahead with it. Life is too precious and the risk is too great!
- Colleen Manley
- John/Sharon Michlitsch
- Evan Mandigo
- david hanson
- Tony Michlitsch Jr.
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