My pain began on 12/31/2008 when I delivered my first and only child via a c-section. Something happened to me while I was in labor and I developed severe pain 10/10 to my lumbar/buttocks region. I am not talking labor pains folks as I was only 1cm dialated. I am talking the feeling that something just broke in my back and buttocks. I had complications after my c-section and developed postpartum Cardiomyopathy. I fully recovered from the Cardiomyopathy and have no heart issues at this time. Additionally, I had lumbar pain, and buttocks pain. I thought I was just out of shape from gaining over 50 lbs from the pregnancy (pre-preg wt 110 up to 160) and began to workout once my Cardiomyopathy was cleared. Anyhow as time went on my symptoms worsened and I saw my OBGYN regularly till she got so tired of me and finally agreed to do a Laporoscopy to see if I had Endometriosis as I felt that was the cause of my pain. I did have endometriosis and a few uterosacral ligament endometriomas that she removed. After the procedure she told me that my pain should be fixed, yet my pain persisted and gradually worsened. I went to multiple Specialists seeking an answer for my severe pain to my lumbar and buttocks region. I was told by multiple Providers that nothing was wrong with me and that I was depressed or had Fibromyalgia and various other mental ailments. I am a Registered Nurse and was living in TX, due to my severe pain and not finding answers I decided to move back home to Ohio so family could help me out more with my little one. Also Cleveland Clinic was near my home in Ohio so I was certain I would get some answers there. However, I saw a good 10 Specialists at the Cleveland clinic in Ohio and nope no-one could figure out what was wrong with me. I was put on Vicodin, which did tremendously help with the pain! After being in Ohio for about 6 months, I landed my dream job at the Department of Veteran Affairs in Florida, so again my family and I packed up and moved. This was the job of my dreams and though my pain was worsening I couldn't pass up the job opportunity.
Once I was in Florida in Jan 2011 and settled I began going to Specialist after specialist. My buttocks was literally swelling up to the point I had a hard time pulling my scrubs over my butt...something was not right. Specialist found nothing but a mild disc buldge to my lumbar and I was sent to a Pain Specialist whom I still see. My Pain Specialist was the first doctor who listened to me and tried to help me with various meds, Cortisone injections, nerve blocks and physical therapy. MY SYMPTOMS WORSENED!!!! I began having shooting pains down my right leg, numbness, severe constipation, and urinary incontinence. I was mortified at this time that all the Specialist I saw couldn't find my diagnosis???? Where did I live, on what planet? As a nurse I gave doctors so much credit thinking they knew more than they do I suppose and was shocked that NO-ONE could figure out what was wrong with me or help me!
I continued this regimen with the pain specialist from 1/2011-4/2012, when it dawned on me it has to be the endometriosis. I traveled to Atlanta GA to the Endometriosis Specialist and opted to have a Total Hysterectomy as they felt I had Adenomyosis. I had the surgery at 28 years old, even though I dreamed of having a big family all my life! However, when you are in severe pain everyday all day...you will do ANYTHING to get rid of the pain. After my surgery, I felt no difference in my pain and the Specialist stated that it may take a few weeks to allow for swelling to go down. My biopsy came in no Adenomyosis and no endometriosis was even found! My symptoms persisted and I quickly found out what PNE pain was and felt like....someone lighting a match on your private areas constantly! Its horrible, I went to specialized Pelvic floor therapists that performed internal pelvic floor therapy on me and promised relief. Also that fire that PNE causes I was given Valium Suppositories and they well as far as extinguishing the fire yet the pain continues! I was so hopeful that as time went on and the therapy continued I would improve, but I didnt and my condition worsened!
Finally in late 2012, my pain doctor now thought I was crazy and I pleaded with him to please listen to me "SOMETHING WAS STILL WRONG"! My pain doc was very frustrated with my condition as nothing helped, so he said I don't know what to do for you the ONLY thing you can have done at this point is to have an MR Neurography (MRN) but your insurance will not pay for it and its an expensive test. I scheduled that test the next day and cashed out some of my retirement funds to cover it. Luckily there was a site within a few hours drive that performed the MRN and I had it done early Jan 2013, and the results came back in February 2013.
SEVERE PIRIFORMIS SYNDROME, SPLIT SCIATIC NERVE, SEVERE SCIATIC NERVE ENTRAPMENT, OBTRATOR, PUDENDAL AND OTHER VARIOUS SURROUNDING NERVES. I cried for hours as no-one can understand what its like to be in severe pain everyday all day and everyone at this point think they are crazy then get that moment of truth and finally have a diagnosis unless they have been through it! I thought with this diagnosis my life was going to return to normal....This doctor that did read my MRN, his office called and said my condition was urgent and that I needed to get to CA ASAP to have surgery. This doctor was NOT in network with my insurance, but his office said it does not matter just get here for the surgery and we can bill your insurance after showing medical necessity. Finally someone was going to help me and I was going to be out of this excruciating pain. I cashed out the rest of my retirement fund, only having $8,100 left in my account and my hubby and I flew to CA in March 2013. I flew with my hubby, me and my 4 year old to CA during Spring break mind you costing a bit over $6,000, but what is money when you are in so much pain. When we arrived we had hotel and car rental costs. When I arrived and met the Provider he informed me that my surgery would be in 2 days, that tomorrow we would do a diagnostic nerve blocks to ensure all nerves covered in the surgery and the following day the operation. Prior to leaving the Providers office his billing department pulled me aside and asked me to call my insurance BC/BS to see if I could get a pre-approval possibly. So I did what they asked and when I showed up the next day to have my diagnostics they told me that my ins denied the claim. They told me that I needed to come up with over $12,000 in the next hour or no further diagnostics or surgery would be done! Are you kidding me, I just spent every penny I had to get there and they agreed to do my surgery and bill the insurance later. I called my family and pleaded with them to use there credit card and I would pay them back. My family is dirt poor mind you but I was desperate. My poor mom knew how bad I was suffering and said I could put it all on her credit card. However, that was not good enough for them either as my mom was at work they wanted her to Western Union the money and she had no way to do it. I couldn't believe that they were even doing this to me! I was so desperate for relief and knew I would never have the money to return, but they would not work with me and they sent me home with NO SURGERY!!!
I worked with BC/BS over the next 6 months while on disability and unable to work as my leg gave out on me all the time at this point too and I was falling all of the time. BC/BS would send my MRN out to multiple providers in hopes someone else could do the surgery and they finally got a catch in September 2013. I had partial revision of my bilateral condition corrected. I had to fork up more money and get to NJ, I had right sided piriformis release and a right sided pudendal nerve decompression via an open approach leaving a 12 inch (LITERALLY) incision from my right buttocks to my right upper thigh. I was on bed-rest for over 8 weeks because the surgery was so open and he removed a large portion of my muscles. I love this surgeon for trying to help me and do not hold anything against him, as he was truly trying to help me. After my bedrest was up, I soon realized my condition was now worse than before! I saw multiple doctors and then a Neurologist in Feb 2014 that told me my condition was permanent severe sciatic nerve damage and that no other options were available for me surgically or even invasive for that fact. I cried for days after that appointment and literally took it to heart. I then developed chronic fevers an elevated WBC, elevated neutrophils, elevated lymphocytes and other symptoms that go with a chronic fever. Anyhow, I really gave up on PNE surgically. I went to multiple specialists due to my fevers and WBC abnormalities, in 11/2014 I had a bone marrow biopsy that was normal. An MRI of my pelvis was done to rule out infection and it was noted that my pelvis is severely inflamed with a labral tear noted to my right hip. I was sent to a hip specialist that listened to my case briefly and stated that I needed to have surgery with a doctor he knew in Dallas. He told me this doctor could treat my entire conditions! I sent over all my medical records and assistant stated to me he may be able to help but patients with your condition are generally sent to the doctor in CA.
I dont know what to do at this point! I feel so lost my hips are now deconditioning and wearing down due to my underlying PNE, piriformis and sciatic damage leaving me the need to have surgical intervention on my hips now too! I am pretty much wheelchair bound and in severe pain all day every day! I have good insurance yet the doctor in CA is out of network for me and though he is literally the ONLY doctor in the USA that can treat all my conditions, my insurance wont cover it! How is that even possible? I have insurance and why is it my fault I have a rare condition that only one doctor can treat entirely???? My insurance is leaving me totally disabled instead, what is wrong with this picture? Can anyone please help??? Sry so long, I put it all out there as you see
Thanks ahead of time. God Bless -Sara Lewis