Coccyx pain - I'm an ANOMALY?!

Tammy tldoudiet@yahoo.ca

Posted 2010-10-24

Hi, I've been reading people's personal stories with much interest since I came across this site researching coccyx pain a few months ago. My story is long, but by no means is it different than what I've been reading, yet I've been led to believe for over 6 years that I am a medical anomaly! This is my story…

I am a 39 year old female from British Columbia Canada, and have been in extreme pain for over 6 years since having my first child. My pregnancy was great, delivery, was a whole other issue! After 60 + hours of back labour, the physicians finally determined that my daughter was stuck on my pelvis in the occipital position and did an emergency c-section! My recovery was slow, but seemingly normal. My chiropractor feels it was my delivery that probably fractured my coccyx, but I also went back to playing hockey 6 months after delivering and took a really bad check where I was briefly unconscious and suffered a major concussion. Shortly after that, I couldn't get out of bed. My physician had to come to our house to inject me with morphine – which meant the end of breast feeding and the beginning of a very long journey! From that point on, I was on about 20 pills a day that included anything from Flexeril to Lyrica to Morphine injections.

I spent over a year being angry about the amount of pills and pain and nothing changing! I then went to an anaesthetist who deals with pain and delivers pain blocks. I underwent pain blocks every week to two weeks until one day I couldn't get up off the floor because the anaesthetist nicked a nerve – I lay in a hospital bed for a day unable to move my legs. My children (we had a second daughter by this point – very painful pregnancy!) were in a daycare thankfully down the street from our home and our caregiver was willing to keep them until I was released as my husband was out of town and trying desperately to get home! While lying in the hospital bed, I knew that the drugs and pain blocks really were not doing anything for me. However, that being said, the pain was so excruciating that I could not tolerate it, so I was placed on anything from natural opiates (morphine) to synthetic (fetanyl) of which I took myself off of 2 months ago, hating what they were doing to my mind and body!

I have seen nerve specialists, neurosurgeons, osteopaths, you name the specialist, I've likely seen them. I've always been considered an "anomaly" because no one could pin point my pain – even though I showed them where it was! All the MRI's & CT's showed that I had a prolapsed L5/S1 joint, but that wasn't enough to cause the pain I was in, yet this is where the focus remained! My pain was in a small box according to radiologists and specialists who were not willing or able to look past my symptomology! I've landed in the hospital a few times, unable to walk, I've lost feeling in my legs, I've passed out from pain, and yet the focus remained/remains on my spine. Last year, a neurologist performed tests to determine nerve damage; he spent 40 minutes with me and diagnosed me with Fibromyalgia (imagine that!) and Carpal Tunnel in both arms and told my employer that I was fit to work. I also had an MRI to investigate MS as I fit 85% of MS criterion, but yet, surprise, I had none (I never thought for a minute I had MS!)

My pain specialist at the pain clinic I attended, after performing an unsuccessful Medial Branch Block (MBB – burns the nerves) told me this is my life, deal with it! At that point, I became so angry and told him I could not "accept and deal" and that I would continue to seek an answer if it meant having to pay for it myself! For almost 2 years now, I have not returned to the pain clinic, and I continue to seek answers (and pay for tests) on my own. My physician is supportive and will order anything I ask, however, he hasn't really investigated any further since my pain is inexplicable.

In September 2008, I was in a car accident, which I refer to as my "divine intervention" because through the lawyer I met with (I was intentionally t-boned on driver side by a driver experiencing road rage) referred me to a very talented chiropractor. My chiropractor did an assessment and was amazed that no one was able to determine my pain, almost from the beginning she determined that my pelvis and hip was disclocated, and my coccyx was out. She couldn't believe I was still walking short of the cocktail of drugs I was on! She spent the better part of the last year just working out scar tissue, inflammation and other issues that arose since, anyone who has experienced coccyx pain and has been on medications, knows that the meds affect your intestines which push against the coccyx (or mine anyway with the way it is fractured), and the coccyx has a direct impact on the rest of your body and organs! She eventually was able to try to move my coccyx, but it was so painful and stuck, that there was no possibility of moving it.

Little did my chiropractor (or myself for that matter) know until about a two months ago how "out" my coccyx was; after she ordered all the imagings I have had over the last 6 years and discovered it was completely fractured to a 90 degree separation and spurred on the tip. Since then, I have gone for 2 x-rays (1 I paid for myself) and the other my physician ordered along with a bone scan. The first x-ray, the technician had me standing…even I know that your tailbone shifts into a different position when standing from sitting – and, the pain is most unbearable when sitting!! The 2nd, the technician had me lying sideways with my leg up, a bit more useful, yet both radiologist reports indicated there were "no abnormalities" although my tailbone clearly looks dislocated! My chiropractor contacted the radiologist and asked why he felt it wasn't "abnormal" to which he indicated that many people walk around with their coccyx out and there is no evidence to suggest it causes pain; as well, he stated that there was nothing to say my coccyx hasn't always been that way! FRUSTRATING!

To make a long story a bit shorter, my chiropractor is in the process of having the imagings read by two radiologists, one in the US and one in Ontario, to see if we can get them to state that my coccyx is fractured and needs to be removed! My physician told me that no one in his lifetime has had a coccygectomy and he doesn't believe surgery would be helpful (he's in his late 60's early 70's!). So, she and I plug along in hopes of finding someone who will believe the pain that I am in and actually make a diagnoses so that I can move on with my life. My husband and I decided that if by Christmas we still do not have an answer, we will seek private medical assistance and pay for whatever needs to be done. In a Country that is supposed to have good medical support, it doesn't really make sense does it!!

Anyway, I know this is pretty long and descriptive, but I wanted share my story and let others pain sufferers know not give up hope, believe in your pain and how it has impacted your life and push to have something done. It is NOT in your head! Physicians are still only human and in my dealings, if you do not fit into their scope of pain/injury/trauma etcetera, you become a medical "anomaly" and just need to "learn to live with your pain"! I DISAGREE! I think sometimes fear and science holds some physicians/specialists back from making a diagnosis or trying something out of their realm of expertise and comfort zone! Could also be ego I suppose! Pain does not fit into a little box, it is individual and relative to the person experiencing it!

Hang in there, it will get better, I believe so!

Tammy

Update, 2011-02-06

Back in October I wrote about my coccyx suffering and the fact that I spent years seeing numerous specialists and being considered an anomaly! Well, I am pleased to say that thanks largely to Coccyx.org for its database on Doctors and Specialists, I asked my GP to refer me to a doctor. Five minutes in his office and upon looking at my MRI images, without reading any reports, he immediately stated that my coccyx was "obviously broken"! Incredible! After 6 years of searching for an answer, a neurosurgeon finally takes the time to look at the images instead of relying on radiology reports and was able to make a diagnosis of coccydynia! I have since learned from him, as well as from Dr. Robert Carbin's office (Orthopaedic surgeon in Toronto) that over the years, they have stopped reading radiologist reports largely because they report "no abnormalities" of the tailbone! Although, mine is clearly broken and fused at a 90° angle and the tail end is spurred and pushing on organs!! :-)

CT of my pelvis/abdomen

CT of my pelvis/abdomen so I was laying flat on my back at the time the image was taken!

Yes, it seems ridiculous that I am smiling and sound excited, but as all of you are aware, living in chronic pain every day with limited support from the medical field can be quite frustrating, and quite frankly, depressing, but finally, I feel like I'm on my journey toward healing! For now I am focusing my energy on a) finding a physician who will perform a coccygectomy, and b) ensuring my mind and body are ready for the surgery and subsequent recovery; and then, when I am feeling more confident and agile, I would like to take on the fight to "enlighten" the medical practitioners in Canada (namely British Columbia) who have all declared to me and my medical insurers that Coccydynia is "benign"!

My GP, who has been a decent support in that he does what I ask of him (i.e. MRI's, X-Rays, referrals...), stated I couldn't possibly be suffering from coccydynia when I asked him last summer, and stated that he knows of no one in his 30 years of practice who underwent a coccygectomy as there was little medical evidence to support any efficacy of the controversial procedure; he also indicated that the risks outweighed the benefits! However, he did as I asked and referred me to Dr. Robert Carbin (who has performed over 35 coccygectomies) and a local orthopaedic surgeon who, when I called his office to ascertain whether he's ever performed a coccygectomy, was told that he would be willing to do a consult with me. I wanted two options so I could see who I would get into quicker - Dr. Carbin's office stated they can likely get me in for a consult by the end of February and, if he feels I am a candidate for the surgery, a surgical date by mid April-May! Although I have to travel to Burlington, Ontario (south of Toronto) for the consult and coccygectomy, I would prefer to have someone whom I know is experienced with coccygectomies than someone with very little experience. At this point we were ready to travel abroad if it increased my chances of having my coccyx removed!

I am quite excited and optimistic about the consult and possibility of surgery; I only wish it could happen sooner. Last fall, I took myself off of all the prescriptions including Ratio-Fetanyl as I didn't like what they were doing to my mind and body. For pain relief, I attend a clinic in Vancouver every two weeks for the injections in my sacrum and coccyx which essentially provide me with some pain relief for a day, but it is a day where I am not in excruciating pain, so it's been worth the travel. My pain levels are at their absolute highest now and I've had to use my crutches to help me walk occasionally since my legs go numb and spasm with every step I take, but seeing the light at the end of the tunnel gives me strength and determination to keep moving forward. I also see a chiropractor two times a week, Dr. Marie-Claude Bozek, who I mentioned in my previous post (see Doctors and specialists in Canada) who attended medical school initially and underwent extensive training (including in Europe under some very talented physicians including osteopathic physicians and chiropractors) while studying to become a chiropractor, and has an amazing knowledge base of the body and the impact the coccyx has if it is misaligned, broken or injured in any other way. She has been my saving grace over the last year and my biggest proponent to date.

Dr. Bozek has taught me a lot about my pain, to which I am eternally grateful! She has indicated that my pain is caused by a number of things, all related to the pain that is caused by the coccyx pulling on muscles, ligaments or overstretching the filamen terminale (end of the dural tube). As well, my pelvis is separated, my hip is essentially "misaligned" to the point of being dislocated, my sacroiliac joint is constantly inflamed, and my sacrum is tilted abnormally. Dr. Bozek indicated that I have a lot of inflammation which exacerbates these symptoms and scar tissue (body's way of protecting itself) around the spurred tailbone! Dr. Bozek has spoken to me about the importance of follow up after surgery to ensure that the inflammation gets reduced (massage), scar tissue broken down (rolfing), the pelvic floor muscles are strengthened (Pelvic Floor physiotherapy), and the sacrum is manipulated (internally) back into place. She feels these, along with proper nutrition and supplements are the key to a strong and steady recovery. Unfortunately, this is the piece that the surgeons are missing after the surgery is complete, and people tend to suffer longer if there is no appropriate after-care.

So this started off as being a quick update, however, being passionate about this subject, I wrote a lot more than I thought I was going to! I am so grateful for this website and those who took the time to set up a safe and educational milieu for discussions and opportunities to learn more about the effects of coccyx pain. I am also grateful for everyone who shares their experiences, trials and tribulations. If anyone is willing to share their experiences with surgery (i.e. prep, day of, leaving hospital...) I would love to hear from you.

Thanks for reading!

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