Kate, USA - firstname.lastname@example.org
For the last 3 years and 3 months I have been suffering with debilitating back pain. When it started I was 27, working on my bachelors in nursing at the time and putting in long hours of paper writing. Sitting on the edge of the couch, leaning back with my computer on my lap. Was the pain from this? Did I fall? No. I was also working out 6 out of 7 days religiously. I made time to go to the gym for 1.5-2 hrs a day. It was important for me to keep a healthy temple for the work I was meant to do. I was a nurse, and a really good one. Did I pull a muscle?
The pain quickly increased from Nov 2014 to mid January. I was now having to take tine off of work (the job that I held dear to my heart) to try to "recover." What was going on? The inflammation was such that my sister had to do the bending for me. She dressed me in the morning and would help when she could. She would come over to pick up things I dropped or scoop up my piles with the dust pan. I needed something to numb this pain. I made phone calls. I was told I could get an appointment in 3 months with neuromuscular rehab in Traverse City. No, I thought. This can't be right. I need to get in now. How can people in this much pain have to wait? I called some of my colleagues and was lucky enough to get an appointment in a week or two. That is when I met Dr. Riddle. Over the next few months I got injections of all sorts. A couple of them helped, but it was so temporary. I was offered all sorts of by mouth drugs to help ease the pain. I was told this was a temporary issue and maybe the steroids would help. I did not take the prescriptions. I needed to have a clear head and get back to work. I wanted to know what was actually causing this severe amount of pain. I couldn't cough without crying. I kept trying to go back to work intermittently. But the pain was too severe. I couldn't do my job fully. I began to try anything that was recommended, other than medications that would cover up the pain. I started PT religiously, I worked diligently at home at the prescribed exercises. I tried acupuncture, I got massages, I went to a chiropractor, I tried myofasial release technique.
Nothing was helping. Ice, ice was the only thing to alleviate the pain and give me a break for a few short hours. Again, more time off work. I had to quit obstetrics. Baby chasing was too physical. Moms were in the tub, on the ball, on the floor. I had to bend. Oh, the pain. It was a physical pain, but now traveling to my soul. I had to quit something that I loved. I began a new career in home care. What I found to be my new found passion. I would ride from house to house with my cooler full of ice packs. When one got warm, the cold one went in its place. My patients loved me, and I loved them even more. I learned a lot and so did they. I prevented a lot of re-hospitalizations and I became an important part of their health and wellness. I was where my heart was happy and doing what I was born to do.
The pain became worse and worse. The more I drove from house to house the worse the pain became. More time off work. Now I started broadening my search. Did I have arthritis or ankylosing spondylitis? I got a rheumatologist. Again, I waited my 3 months for the next available appointment. I drove from Traverse City, MI. to Petoskey, MI. in excruciating pain. I walked in the office door and was told by the "professional" in the room (the rheumatologist) that I had a bad aura. He didn't touch me. He didn't assess me. He told me I had a bad aura. I was told to take Motrin and go to counseling. I had never felt so defeated in my life…or so I thought.
This was just the beginning. The search continued and the pain got worse. Even though I was the best at my job, I was looked at as a "slacker" and someone who missed a lot of work. I started getting internal coccyx adjustments. I was again ensured that this was the trick. Priority was not a participating insurance at this time with Advanced Therapy Group of Traverse City. I called priority to express that I needed this treatment and that no one else in the area was experienced in this area. For 6 months I paid 70.00, 3x a week. I spent thousands of dollars on this only to find out that when I stopped this treatment, priority began to work with this provider. 6 months too late.
The pain was getting worse rather than better. More work missed, relationships lost, money spent. I tried everything I could think of or that was recommended by professionals. People I thought I could trust. I did everything but consider surgery. I wanted to make sure I tried everything first. More PT at a different office (3rd one at this point). The exercises they gave me made it hurt worse but I was told I needed to come more. This felt counterintuitive but I listened and I went more frequently. No, I couldn't. I had to stop. The area would get inflamed and more aggravated. Now I knew what 10/10 pain meant. Like you are bent over outside of the car, you're puking and shaking because the pain was more than I could physically handle.
Now what? I was told to try another rheumatologist. I was put on Humira. I was now injecting myself every other week to try to decrease this inflammation. I was going out on a whim and putting chemicals in my body that I didn't know if I needed or not.
I decided to go see Dr. Bartol. I got a ride to Detroit because at this point I could no longer drive. I met with Dr. Bartol. He told me I was a good candidate for the surgery but that it had a lot of risks and I could try injections for a little bit longer before I should get surgery. I got a few more injections from Dr. Riddle and Dr. Ball with intermittent relief. The ganglion impar block worked. This block specifically numbs the coccyx. I called Dr. Bartol. I told him the results. He wanted to do a conventional coccygectomy. So, I looked into it. I did a lot of research. Finally, I called his nurse. I told her the results of my research. I found that about 50% of people who got a coccygectomy with Dr. Bartols technique had some relief. Some relief was defined as 20% decrease in pain. The nurse told me she had been working for Dr. Bartol for a long time and he was a great orthopedic surgeon, however, in her next breath she told me that she did not recommend that I had the surgery. She said most of the clients that came back post op even out to 6 months or a year had the same or worse pain than they had originally. This was congruent with the research that I had gathered. I couldn't do it. I couldn't risk having surgery and then ending up with worsening pain.
Nothing was helping. The injections inflamed the area worse initially so getting them only meant taking more time off work to have the pain numbed for a short amount of time. Now we are 2 years in. I have taken more time off than I have worked and I have to sell my house to pay my bills. I sold my house to move into with a friend so I could afford to live. I bought and flipped my house to pay off my student loans. Nope. I had 35,000 to spend on more avenues that did not work. I went to a new chiropractor, I tried a wellness center, I did decompressive therapy, I bought a zero gravity table, I went to a massage therapist 2 times a week for 6 months which was more out of pocket expenses. I now had to quit another job that I loved and my all time passion.
I went back to work at Munson as a telemetry float pool nurse. During this time, I had a freak acute abdominal emergency of unknown cause. My bowels were twisted with adhesions and I was open in surgery for 5 hours. The general surgeon Dr. Featherstone did not consult gyn on call when I was open. I had to have abdominal surgery two times in 2017. My uterus was adhered posterior and needed to be detached by a GYN surgeon. After the second surgery with Dr. Zaiden I was pain free. Were the adhesions causing my back pain? Did one of the blocks affect my pain? The pain came back within 72 hours of surgery. I began getting internal vagina shots. I needed to rule out that the root cause of this pain was not my pudendal nerve. My sister and my mom took turns to drive me 5 hours downstate to get the most painful shots you can imagine. Nothing touched the pain.
I saw Dr. Mckay in Traverse City to see if he could replicate a block that may have affected my back during the gyn surgery. Again, nothing worked. I was back to square one, but now post op 2 major surgeries and one giant bill. Dr. Mckay is a very intelligent and well known GYN and surgeon. He helped me see that I needed to go elsewhere to figure out what was wrong with my back. He requested that I try to get to Mayo. He got the approval from priority health that I would be covered to go out of network. I waited and waited again. 3-4 weeks after the approval was given, I got a letter in the mail from Mayo that they could not help me. They do not perform coccygectomies. I went to U of M. I went to the pelvic pain clinic and met with Dr. Berger. Dr. Berger agreed it was not my pelvic nerves causing the pain. I went through a very uncomfortable exam that lead him to believe this was pain was from my coccyx. He ordered an MRI (now my 3rd one in three years) for a few weeks down the road. Again, I got a ride 5 hours from home to get an MRI at a better hospital. The MRI showed in fact that I have edema around the tip of my tailbone, tissue damage present and an osseus spicule on the tip of my tailbone.
I was recommended to go back to Neuromuscular Rehab and get more injections (just to cover up the pain). The same injections that only temporarily fixed my pain. I went to work and sobbed. I am a pool nurse at this point and everyone knows my story. Year 3, my friend recommended to see the new neuromuscular rehab physician who recently moved from Montana. I called his office and was told I could have an appointment in 3-4 months. At this point my life is taken over by pain. I no longer can do what I love. I can't drive, I can't adventure, I haven't worked out in 3 years, I can't ride my bike, I can't pick up my nieces, heck I can't even bend over to put underwear on, I have my friends and family tying my shoes, I can walk, but only slowly and with no pressure down to the ground, I haven't sat to eat for 3 years.
I called my friend who works on the rehab unit and asked if she could please talk to Dr. Cole, to see if he could fit me in to his schedule sooner. I met with Dr. Cole a week later. The Wednesday before Thanksgiving. He was one of the first providers to sit and listen to my story. He spent over an hour with me, assessing my movements and how each movement affected my pain. He looked at the physiology of where the pain was stemming from. He told me he had a good idea of what was going on, but he needed a few days to review my file including everything I have tried, my multiple x-rays, and my 3 MRIS including the most recent MRI from U of M. Monday morning he called and woke me up. He was excited to tell me that he was sitting with the radiologist at Munson and noted the area that I was having the most discomfort has looked similar from 2014 images to present images. He said that the reason why all of my efforts have failed was not because I haven't tried everything but because I had a bone spur growing off the tip of my coccyx, causing an internal pressure sore.
As a nurse, I understand that as long as there is pressure on soft tissue it will only get worse unless the pressure is removed. I have spent from November until now searching for the most experienced surgeon. I have found over the last three years that coccyx pain is not well researched and leads people down multiple year journeys of getting passed from doctor to doctor with minimal answers. I called Dr. Bartol (the original surgeon who said he could perform a coccygectomy) I was told he retired. There was a neurosurgeon at Johns Hopkins listed, he actually had some positive outcomes. I called. Retired. Dead end after dead end for 3.3 years. The depression is now worsening. I used to be filled with a light. I was known as the happiest person on the planet. I was ecstatic that I got to wake up that morning. I was thrilled to be alive and filled with an undescribable passion to help others. At this point, another dead end. I started considering ending my life. I couldn't help the dark thoughts that maybe this was my story and that this was the end. I didn't have a life anymore. I was hanging by a thread at work, my friends have fallen to the waste side beside a few that knew me before the pain started, my family can't handle my sadness and my anger. I felt hopeless. I read the stories on the website. None of them done minimally invasive. None with ending that said they went back to work in 4-6 weeks. NO. They are stories of real people who experienced the exact same pain as me. They had the open, conventional surgery done. They laid flat on there bellies for a month. Only getting up to void. Then they were allowed to walk a little bit as tolerated and maybe try to sit for a few minutes on a donut. Just like they did before the surgey. The patients stories are real. Most of them still not able to drive after 4 months, or 6 months. Around 8 months they could sit for longer periods with rest breaks. They could go back to work around this time. I don't have that time to wait. I am no longer mentally stable enough to wait that long to feel relief.
When I sent my MRI and medical file to Dr. Scott Katzman (see Doctors and specialists in the USA, Florida), he called me from home. He was confident and reassuring that I would get my life back. I have met a lot of "specialists" over the last 3 years. And I have felt comfortable with 3 of them. Dr. Cole, Dr. Mckay and Dr. Katzman. I have a feeling of knowing that this is what I need. This is the end of the story. The end is not me driving my car into a pole or into the lake. Thoughts that were real, yet felt so far away when talking to Dr. Katzman. He told me that he performs this surgery at least 4 times a week. He is the only surgeon in the nation that performs coccygectomies with the minimally invasive laser technique. He has a 100% success rate. His patients are back to work within 4-6 weeks. Even nurses, and athletes are back on their bikes. People get their lives back.
I have laid awake reading everything I could about the surgery and the various surgeons experience level with the surgery I need. I spoke with a surgeon last week at my local hospital who performs the conventional technique. He was actually one of the specialist who told me 3 years ago he couldn't help me and that one day I would wake up and not have the pain anymore. I ran into him in the ER and he asked how I was feeling. I broke down. In front of my superior I barely knew, in front of my patients and my coworkers. I told him what has happened over the last few years. I asked if he could get me in and do a coccygectomy. He looked in my eyes and told me that the outcomes are not good with the conventional approach and that he had only done the surgery a few times. He told me that the patients he performed the surgery on did not feel a big difference for a year or two after the surgery. He told me that it may have been time that healed them and that the surgery was to controversial to know for sure what helped them. The same information as from the hundreds of patients who wrote their story on coccyx.org.
Priority health declined Dr. Katzman 4 times, up to the court appeal level. I knew this was the surgery that I needed so I asked friends and family for donations to pay the downpayment. Once you call the office you will get a patient advocate who will help with the financing. The reviewing physician will take a look at your imaging for free. Once it was determined that this was the surgery I needed Dr. Katzman called me to discuss the images and plan. I only had to wait a few weeks to schedule the surgery. 1 trip total. I drove from Traverse City, Mi to Hollywood, Florida (32 hours) to have the surgery. My surgery was on January 29, 2018. I woke up from surgery with less pain than when I went under. Dr. Katzman specializes in minimally invasive coccygectomies. He performs 1-2 of this specific surgeries a week. The office staff is amazing, professional, compassionate and intelligent.
I am currently 1 week post op. I have 80% decrease in pre-op pain. My incision is less than 2 inches long. My only restriction is no sitting for 2 weeks to ensure the wound is healed. I have kept it clean and dry. It is healing well. I have only taken Tylenol since surgery. I will give an update at 3 weeks.
Note from Jon Miles:
I emailed more than a year after this story was posted, to ask for an update, as the long-term outcome of treatment is of great interest. In this case I did not get a reply.