Thank you Jon Miles for establishing and continuing to moderate this site for all those sufferers, whose success stories have yet to be posted. Also to Lori, for sharing your personal story of triumph and for providing Dr. Lithwick's name as a source of resolution (see list of doctors and specialists in Canada). Your site Jon, has changed my life. Since November 2004 I have been a daily visitor. I have read, with interest and enthusiasm, all of the personal stories from fellow coccyx sufferers, as well as all the information related to this condition known as coccydynia. Thanks to all who posted their personal stories, and for the suggestions shared. My family and friends insisted that I post my story in its entirety, in the hope that it may encourage others who are suffering, to pursue surgery as an option.
"HOPE IS NOT A DREAM, BUT A WAY OF MAKING DREAMS BECOME REALITY" ~ L.J. Suesens
I am a 38-year-old female whose journey began a little over six years ago, June 1999, after giving birth to my son. I had a natural, uneventful delivery with hard, fast back labor. Baby presented LOP. Within weeks of the birth I was experiencing tailbone pain and sought out chiropractic care. After many months of weekly appointments, I realized that there was no relief. I actually felt worse. I also did some massage therapy, with no relief.
After two ultrasounds and numerous radiographs, I was scheduled for a bone scan. By this time it was June 2001. I had already presented myself twice to emergency for severe muscle spasms. It was during this time that I was consuming more than 20 pain pills a day.
One day, while my husband was at work, I gave myself a good scare. With a toddler at home, I realized that I needed to be coherent and functioning. With the exception of the occasional T3 or Bextra to assist me in managing the pain on my worst days, I made a conscious decision to leave the meds behind - in particular, Flexeril.
The results of the bone scan indicated minor arthropathy in the sacroiliac joint. Although I didn't feel that the diagnosis was in keeping with my symptoms, I accepted it, and spent the next year continuing to work my way through the pain.
Summer 2003, I returned to my GP of 27 years. I proceeded to advise him that although I was no medical doctor, there was nothing minor about this pain. He handed me a requisition and advised me to go immediately to the hospital for a CT Scan. I did not follow his instructions. There was always another day. Within weeks of that visit, my GP became very ill. I decided that I would wait until he returned to his practice before proceeding with the CT Scan. Time ticked on. When he did finally return, he practiced for a period of one week, and then closed his office doors.
By now, it was July 2004 and the intensity of the pain was excruciating. It was constant, and there was no relief. My legs were shaking uncontrollably from severe spasms and I was tripping over my feet. Sitting was impossible and I knew that something was radically wrong - I was desperate for answers, and living in fear. My life, as I once knew it, was about to change.
I had come home from my part time job, and with the exception of short trips outside of the home to medical appointments I was living in pyjamas, virtually housebound. The pain was consuming me. I wasn't living a life. I was merely existing…
I found another GP locally who was accepting new patients. On my first visit, my new doctor suggested an MRI. With a 9-12 month wait list, I made the decision to pay $1500. to jump the health care queue, and have 2 MRI's of my spine performed, in a private clinic. Within 24 hours I was in, and within 48 hours I had the results - 2 bulging discs at L3-4 and L4-5. How was it possible that I had not been scanned low enough? I was thoroughly disappointed.
My strong intuition was telling me that the cause of my pain was not disc related. I could pinpoint the pain with one finger. The pain was in the buttocks. It was at this appointment that I asked my GP if he thought that my problem was disc related. The answer was 'probably not'. He then went on to suggest that 1/3 of the population probably have bulging discs, which, depending on the way they are bulging, may or may not become symptomatic. The idea of a problem with the coccyx seemed more like a realistic possibility.
Although I was advised that very few back problems require surgical correction, I was going to be referred to a neurosurgeon in Vancouver, with the idea that I might benefit from some freezing to control the pain. I was in complete agreement.
November 2004, I managed to get in to see a different doctor. Initially, there was discussion of two possible issues - one involving the coccyx and another involving the muscles. I was given a prescription to be filled, and two days later, on a Friday afternoon, I returned to his office, Lydocaine in hand, for the injections into the coccyx. Magic…instant relief but short lived. I had been living with chronic pain for so long that I had forgotten what a pain free day felt like.
Later that evening the telephone rang. It was the doctor calling to see if the injections were still holding, as well as instructions to follow in the event of any signs of infection to the site. The diagnosis, he was certain, was coccydynia. I finally had a name for my condition and a brilliant and compassionate doctor as my specialist. Things were looking up!!
December 2004 an EMG and Nerve Conduction Study reported that I did not have any disease of the muscles. It was explained to me that the spasms were a result of the muscles, ligaments, tendons, etc. all playing a 'different musical instrument in a symphony'. Everything was jumping and twitching.
At the next appointment, my doctor shared with me a deep breathing exercise that I began experimenting with. I used it daily to help me breathe my way through some of the pain. It assisted in getting oxygen to the tissues and the energy moving in the body. It became my lifeline, pre-surgery. The results were incredible. I continue to use this breathing method today and it has become part of my daily routine.
I continued on with my weekly Lydocaine injections to the trigger points, and began working with Mr. Marc Jones, a British trained Osteopath. He was a colleague of my doctor's and worked out of the same clinic. I did get some relief from the Osteopathic treatments and external manipulations. My ongoing foot pain, a direct result of spending far too much time standing, seemed to ease somewhat. Range of motion at first visit was 20%. By last visit, my range of motion was 50%. There was a marked improvement. By March 2005, Mr. Marc Jones returned to the UK.
By June 2005, I was getting impatient. I was still in excruciating pain, and wasn't sure what I was waiting for. The injections into the coccyx had already totalled two, and I had come to rely on the weekly trigger point injections. The doctor and I were both aware that at some point the injections would need to cease. I could not live on them forever. I had no quality of life. I was getting weary of eating my meals, alternating between standing up and lying down. I knew that if it was going to be, it was up to me. I had a dream…and I was going to make it my reality.
We started discussing surgery as the only remaining option. We spoke of Jon's site that I had become a regular visitor to, and in particular, of experienced surgeons that could provide the excellent result that I was looking for.
My choice was Dr. Norton Lithwick. By plane, Toronto was only 5 hours away. It was definitely doable. There was nobody in Vancouver that could perform the surgery.
My specialist suggested that we write to Dr. Lithwick. An email was sent off and I received a reply back on June 15, encouraging me to contact his office. As discussed with Dr. Lithwick, I would fly in for a consultation on a Thursday, stay in town, and have the surgery performed on the following Tuesday. The only thing left was to investigate the costs involved in doing so. Could the surgery be billed reciprocally between the provinces of Ontario and British Columbia? The answer was yes.
July 2005 my doctor sent the referral off to Toronto. I followed up by phone to Dr. Lithwick's office, and was given a surgery date of September 06, 2005. I was so excited that I couldn't contain myself. In preparation for Toronto, I had a CT Scan performed. The actual scan, was burned to a disk, and would accompany me. The results indicated a dislocation.
August 31, 2005 I left Vancouver for Toronto. My consultation with Dr. Lithwick was the next day. After a comprehensive discussion and examination, I was sent for radiographs. It was the moment of truth and the radiographs told all. Dr. Lithwick was certain that he could rid me of my pain. The surgery would proceed as scheduled. I was delighted.
September 6, 2005 I arrived at the hospital. I did not have any anxiety, fear, or doubt about the surgery. I was excited and I was ready. 1:50 pm I climbed up on the operating table. I looked around as I was being prepped, and saw Dr. Lithwick studying the radiographs intently. The moment I opened my eyes in recovery, I knew instantly that the surgery had been a complete success. It was exactly as I believed it would be. There was no excruciating pain or heavy painful pressure. I glanced around, looking for a clock. It was 3:55 pm.
I left recovery and was wheeled up to the room (Hi Taunya). I felt great and began walking around when my parents arrived. I even managed to make it outside for some fresh air. I believe that walking immediately after surgery is beneficial. The longer you lay, the stiffer you get.
There was some discomfort from the surgical site. I would rate the level of pain about 2/10, in comparison to the level of pain pre-op (that was insane). I was in the hospital for two days. I spent the next few days of my stay in a hotel, and on September 11, 2005 I left Toronto and returned home to Vancouver. My dream had been realised.
If you are suffering and are at the end of your rope, I would gently encourage you to find a brilliant surgeon, whose patients have had excellent results from this surgery. The decision for me was an easy one. By choosing Dr. Lithwick, it allowed me to focus all of my energy on the only possible outcome - that of a successful surgery. With over 60 coccygectomies performed, I was in excellent hands. I decided that there was nothing to fear. There was only freedom from pain.
In my opinion, and after speaking with others who work within the hospital that Dr. Lithwick practices out of, he is a genius and an extremely gifted man.
There were no problems post-op and no infection. The incision was closed with steri-strips and the incision site is a complete work of art. The incision is smaller than I expected and initially, there was some bruising. Upon changing the gauze, the site was completely dry. The most painful part of the recovery for me was the inability to have a movement for 7 1/2 days. That was brutal. No amount of laxatives is too little, I can assure you. I would give top marks to the elevated toilet seat, as well as the bath chair, which allows one to shower without having to stand up. The heating pad also came in handy.
I would rate the success of the actual surgery as 100%. I no longer have discomfort at the incision site, and after 6 long years, I am finally free of that excruciating pain. I can sit on a chair, without my cushion, for hours at a time and walk for 7 hours straight. Overall, I feel about 80%. I was in Disneyland a few weeks ago and had no problems with the rides or sitting on the plane. I continue to have some tenderness in the buttock area. My doctor says that after years of sitting and standing crooked, I have stretched the ligaments and the tendons are loose. It will just take some time for them to fall back into position. For now, I am continuing on with the trigger point injections and am starting physiotherapy to strengthen the pelvic floor muscles. I intend to be back to perfect health within the year.
In closing, I would like to say that it has been an honour and a privilege to have worked with Dr. Norton Lithwick, and Mr. Marc Jones (see list of doctors and specialists in Canada). Without their knowledge, skill, experience, and expertise, I am certain that today would not be what it is. Each is brilliant in their chosen field, and go quietly about their business. Each is committed to making a difference - touching people and changing lives, one patient at a time. I will be forever grateful for the excellent result. I am thrilled to be living a life once again.
For those who continue to suffer, hang in there, and don't lose sight of your dream, you are never alone.
Feel free to email if you have any questions. I would be happy to help if I can, and will respond to all who write. Please indicate 'coccyx pain' in the subject heading, as this is our business email. Many thanks.
Heather in Canada