Coccydynia sufferer, Edmonton, Alberta, Canada

Anonymous

Posted 2010-12-12

I would like to share my history with you and where I am at in my journey towards recovery over coccydynia. Please bear with me as it is a bit long but I want to include as much information as possible in case someone else can identify with where I was or am, and in turn, this may help them in their own struggle toward diagnosis and/or treatment.

About a year before going off on disability, out of the blue my left ankle started to intermittently swell. As the swelling would always go away, I ignored it. Then my ankle started to hurt as well. I had a Doppler for a possible blood clot which came back negative. I thought as it wasn't a blood clot, don't worry about it, which I didn't, even when the swelling became permanent. Then I started feeling a burning sensation in both my legs intermittently as well. Over a period of about the next 6 months, the intensity of the burning sensation increased and the time in between bouts of burning would decrease. This pattern continued until I started to go to the emergency department on an increasingly regular basis in an attempt to deal with pain so severe it would make me cry, and I could no longer sit or stand or walk. When I could work I attempted to ease the pain by putting ice packs on my back, sitting on a pillow and stretching/taking walking breaks, but to no avail. Upon each trip to the Emergency department, doctors would prescribe pain medication and/or give me an anti-inflammatory shot and send me home "to rest". This worked for a short period. After a few days of rest I would find the pain would decrease just enough for me to go back to work but shortly thereafter the pain would increase and I would have to go back to the emergency department. This vicious cycle lasted a couple of months. A second Dr. ordered Doppler test also came back negative. Driving, sitting, walking and bending would all increase my pain and seem compounded in its effect.

To complicate things, about a month before I went off on disability, I fell down a set of metal stairs, striking my tail bone on each stair. I was black and blue and very sore but didn't think much about this. I truly thought I would get better and this would just be a distant "bad memory".

Eventually, the pain became so severe there wasn't relief.... In desperation I saw a chiropractor who gave me an "adjustment" which pulled the pain out of my legs and put it into my low back and in between my legs. Now I felt like I was sitting on broken glass or had broken glass between my legs when I walked. If I had thought the burning in my legs was excruciating this was a new type of hell. My last day at work I made it for about 2 hours and had to be wheeled in a wheel chair to our OH&S office where I laid for about another 2-3 hours then tried to go back to work......being back at my desk lasted under an hour. I ended up in a medi-centre getting Demerol and that was the beginning of being on disability, which will be 7 months ago.....come December 12th, 2010.

Being forced to stop working in May 2010 was absolutely devastating to me. I just wanted answers and relief so I could get my life back. Sound familiar?

My family doctor had unfortunate timing in closing his practice and moving out of the country when all of this happened. Without a doctor that knew me and my history I now had to try and find a doctor who would help me. Not an easy task, especially with the shortage of doctors right now. I had x-rays, a bone scan and even an MRI which identified some issues, but nothing conclusive. Eventually, I was fortunate enough to see a neurologist who diagnosed me with torn ligaments. I was told rest and pain management was crucial to recovery and eventually the ligaments would heal. This was in June of 2010. In September 2010, I was no better and worried something else was going on. I wasn't disputing the torn ligament diagnosis; I just wasn't convinced that something else wasn't also contributing to my pain.

Please note: In June 2010, I tried physiotherapy without success as every time they tried to treat me it would cycle me into extreme pain. My physiotherapist decided it would be in my best interest to stop physio treatment until such a time where I could resume appointments. I am happy to say that I was able to go back to physio with some regularity, approximately once a week, starting August 2010. There we do IFC (a type of tens), ultrasound, and trigger point therapy. Once we figured out how not to push my pain past it's limitation point, we have focussed on easing the pain originating out of my buttocks and burning down into my legs as well as the tight muscles felt around my low spine/sacrum/coccyx. To date, I have not been able to do any exercises without cycling into extreme pain but I hope to be able to do so in the future as in my opinion I believe a strong core is key to regaining and maintaining pelvic/low back stability.

My disability insurance provider suggested I check out Healthpointe, a clinic specializing in pain diagnosis/treatment here in Edmonton, Alberta. Desperate for anything that would make me feel better, I pursued getting into Healthpointe with great intent. This facility specializes only in pain. You need a referral from a doctor to get into Healthpointe (I was fortunate enough to get mine from a Neurologist) and the average wait time to get into Healthpointe is 6 months to 1 year. Don't be discouraged though. My referral came at the end of August and as Healthpointe has hired a new doctor to speed up patient intake I was able to get in to the clinic in 3 months!!!!

I first saw Dr. Dmitry Yuryevich Yunuchikov (see Doctors and specialists in Canada) October 21st where after a lengthy physical exam (one in which they had to wheel me out in a wheel chair), he diagnosed me with coccydynia and told me he wanted me to come back December 7th for a steroid/anaesthetic injection. As I was in such pain upon leaving the initial consultation appointment, I was unable to ask any questions but when I went for my injection yesterday, the staff was wonderful and everyone was kind, professional and extremely supportive. I suggest for anyone wanting to go to Healthpointe, or any pain clinic, make a list of questions and see if you can ask them first before the exam (I had the questions prepared but there was no way I could ask them or hear what the Dr. would have said if the person accompanying me had asked them on my behalf).

I'm not going to lie. I was terrified about the injection (I hate needles with a passion and anything sharp being place around my spine/nerves is not too pleasant to think about either!!!). I was able to take my fiancÚ and best friend with me to the appointment for support. Dr. Yakunchikov came in prior to the procedure and explained everything to me in great detail (he was wonderful!!!!). The procedure was done via fluoroscopy (x-ray imaging with dye so they know exactly where to put the needle). Dr. Y (as I call him; much easier), initially injected lidocaine to freeze the area while the x-ray tech talked to me the entire time. I only felt a couple of small pin pricks for the initial freezing (way easier than what my mind had built up the experience to be). In fact, the staff at Healthpointe refers to Dr. Y as the "gentle giant".

As for the actual cortisone injection Dr. Y did a test insertion of the needle for the steroid injection which I never even felt!!! He checked and re-checked the images to ensure the needle was in the exact spot and then injected a dye to double check the needle again was correctly placed before proceeding any further. I only felt mild pressure during the injection and kept focussed on breathing and being relaxed which I felt really helped. He let me be on my side for the procedure as laying face down is difficult for me and the actual procedure was about 15-20 minutes. In total, I was there for about an hour and a half and in the actual treatment room for about an hour (I accidentally touched my buttock when he was asking me if I felt pain and I contaminated the site so they had to re-sterilize the area: I felt awful about this so if you have this done, remember not to point to or touch your backside!!!). The injection was in my coccyx joint area......he stated the specific spot but sorry I cannot remember exactly what it was.

I asked Dr. Y about "dynamic x-rays" and he stated he knows about them!!!! THIS IS HUGE! EVERY OTHER DOCTOR I HAVE SEEN HAS NEVER HEARD ABOUT THEM!!! ONE DOCTOR THOUGHT THESE X-RAYS ARE A JOKE!!!! Dr. Y has agreed to do the x-rays if the injection doesn't work but really believes his exam pinpointed what he believes is the main area of concern (I have to say his exam was the most thorough I have ever gone through....and I have been through several exams. Dr. Y was very gentle so the pain was well worth the diagnosis). Dr. Y even offered to do the dynamic x-rays first and bring me back for the cortisone shot ....which I thought was very kind but I was/am desperate for relief so I said go ahead.

After the injection I had immediate relief and was able to walk around with minimal pain......it was awesome but I was told this is a side effect of the freezing which lasts a couple of hours. This was the case with me as the pain returned after the 2 hour period. The cortisone will take about a week or so to really take effect so I will provide an update at such time on my progress.

Other information you may find useful. On the www.coccyx.org site I found reference to Bowen therapy. I started getting Bowen treatments only a week and a half prior to the injection but I do believe I am seeing a small reduction in the "broken glass" sensation in between my legs as well as in the burning originating out of my buttocks going down into my legs. It is too early to tell how much relief I will see but I plan to continue with Bowen following the 1-2 weeks after the cortisone shot as I am open to whatever will make me well. It is comparable to physio in cost. It is non-invasive, painless to have done and can be given through light clothing or under a sheet if you prefer. My advice if you want to try this is to find a practitioner who has taken all the training, even if they have no experience with coccydynia. There is a coccyx specific treatment they can do and my practitioner is looking at trying this with me. His name is Jim Cretney (see Doctors and specialists in Canada). He is a registered massage therapist and Bowen practitioner. If you are outside of Edmonton, you can look up the Bowen Therapy Canada site which has a list of all active practitioners. Note that for those practitioners with 3 checkmarks beside his/her name they have taken all the levels of Bowen training available.

On the www.coccyx.org site I also found a reference to a site that sells coccyx cushions. The company Relaxobak has very reasonably priced items and if you mention the word "coccyx" as the discount coupon when you order, you receive 10% off your order. If you email them, they will call you back as their toll-free number doesn't work in Canada. I had the items shipped by U.S. Postal Service which then is shipped by Canada Post once it comes out of U.S. customs and saves you a ton of money (I believe my savings was over $50.00: $29 instead of $89). They emailed me a tracking number and I got the products in about two weeks). I cannot give you my opinion on the actual usefulness of the products as I just got them but they appear well constructed.

I am still at the point where I have to lay down on my side most of the day (the one thing that brings my pain down given enough time doing so: If the world were run in such a way that I could function from this position I would be in relatively low pain, but it isn't...so I can't). I drive and do short outings wearing a back brace for support but avoid wearing it full time as I have been advised it only weakens your back/abdominal muscles even more. I use a walking stick to help me walk. I still use ice but I try to use it less since having had frostbite that I so carefully tried to avoid getting in the first place. I still use pain medication and rely heavily on others for housework, yard work and assisting me with outings that are too much for me to do on my own; i.e. some medical appointments, grocery shopping, etc.).

I miss my life prior to the injury a lot. I miss going out to movies, dinners, shopping, camping, birthday parties, etc. But I also know that my attitude is the one thing I can control. Don't get me wrong... I have some bad days. I sometimes feel sorry for myself but I don't allow the pity party to go on too long because my quality of life and everything I have to re-gain is worth fighting for. Every new day is the day I might learn something that sets me on the path to recovery. Therefore, I refuse to give up. I won't give up. I want my life back and I believe I will find the right combination of treatments that work for me. I have too much to live for and wonderful people in my life who love and continue to support me through this extremely challenging time.

Please consult a medical professional(s) before pursuing any of the options listed above. I am sharing my story with you so that others may find some piece of information that is useful to them in his/her pursuit of a full recovery from this devastating, debilitating and joy-stealing condition. I wish for each of you to find the strength to keep going. Don't give up. You are worth the fight!

Please note: this information is not intended as medical advice. I am not a doctor nor profess to be one. I am happy for others to contact me for encouragement, support and any questions they may have that I am able to answer. People may email me with their phone number and I am happy to call them. I have a flat-rate phone plan and can call in Canada or the U.S. at no extra charge. As well, my number is private and not displayed when I call which protects my privacy.

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