Krazy in the Kootenays, Canada
First of all, I would like to thank Mr. Jon Miles for providing this forum for all of us who are dealing with Coccyx pain. I have been a regular visitor onto your site for a couple of months now & can't thank all of you enough for your time & effort to get your story out there. Your words have been a comfort in so many different ways. Especially the suggestion for the Coccyx cushion, talk about a little piece of heaven, if only for a short period of time! (not sure I'm ready to start cutting out pieces of my car seat yet though Jon, but I am only 6 months into my severe coccyx pain!)
Here's my story...
I am an active, 47 year old, living out in rural British Columbia in Canada. Often referred to as "God's Country". I lead a very active lifestyle (at least I did until 6 months ago), including hiking, yoga, dog walking & grooming, singing and beautiful times with my husband & animals on the lake.
We are a 2 hour drive from any major city and driving for tests has been incredibly trying.
Back in 2008, I tripped over a piece of rebar hidden in the grass, while carrying a heavy load. I twisted and landed on the left side of my tailbone. A direct hit if there ever was one!
Over the years I have suffered greatly in my lower back area, when I have stupidly picked up something too heavy or have spent too much time in the garden, but I have nonetheless lived with the occasional flare-ups with the odd curse & many long soaks in the tub!
In September 2015, I stepped off a 4 ft deck. It was dark and there was no railing. The yard was unfamiliar to me & I assumed that I was going down a set of steps. My sister, who saw the whole thing, said that I did the Wylie Coyote walk off the deck, landing on both feet! Excruciating pain at the time, but went down to a constant deep thrum in the coming weeks.
After a couple of weeks of my husband, trying to massage out the soreness, noticed a slight swelling above the tailbone. He sent me to the doctor to figure out the problem.
So in November 2015, I was sent for a L/Spine CT Scan & an X-ray (laying down). The results indicated a couple of bulged discs that were encroaching on the S1 nerve and that the tailbone is calcified, plus some form of arthritis in the middle of my back. (Spondylosis?) All of this due to the original fall!
What I have been trying to impress on all the doctors that I see, is that an hour after getting my CT scan in Vernon, my girlfriend & I went shopping at Value Village. (Gotta have some fun somewhere right?) As we were coming out, my friend was behind me pushing a cart with a large roll of material hanging over the front and as I was going through the (super heavy) door, my forward motion was halted & the roll of material whacked me in my tailbone area! I may as well have had a Bullseye target on my arse, 'cause she hit the mark perfectly! So bloody painful!
Since this time my pain & symptoms have been getting increasingly worse. I had become a frequent visitor (sorry, no points!) at my local clinic, but because we are such a small community, my GP is constantly away and I meet with different doctors every time I go in there. I feel like a parrot trying to impress upon these doctors, the importance of the changes in pain that I am experiencing.
In January of this year I got in to see the Orthopaedic surgeon in Vernon. He ordered an MRI. But he didn't think that the disc was seriously encroaching on any nerves. He referred me to the pain specialist for an Epidural Cortizone shot. Oh boy!
In the meantime, I went for 4 sessions of physio therapy & when that made things worse, she tried electro-therapy, which sent painful spasms up my back. She discontinued my therapy and sent me back to my GP.
My GP sent me to a Nerve/Muscle specialist in Vernon... Nerves & muscles all within normal limits, but showing Marked/Acute Coccydinia, with an "off kilter Coccyx". By this time, my leg pain was becoming increasingly uncomfortable, My Lower back swelling had increased, I was experiencing constant deep pain above my tailbone and my bowel & urinary functions were far from normal. I had frequent (every 15 minutes!) & urgent pee'ing and had to wear a liner when leaving home. (I call them my knicker nappy's!)
At this point the meds started; 500 mg/day Gabapentin and a couple of other pain meds to try & help me sleep. Immiprimin & Diclophen. I stopped those real quick, as the first one made me feel like I was choking and the second one made me super hyper. (Not very conducive to sleeping!)
The Epidemiologist in Salmon Arm, Dr. Lourens, gave me a Caudal Epidural & a Coccydynum Block. (HOLY S__T!, that hurts!) Thankfully, due to the freezing that also goes in, the needle pain lasts only as long as you are on the table. My left leg pain was gone right away and this was a good indicator that he had hit the right nerves. The deep tailbone pain was still there however and got worse in the upcoming days.
Unfortunately, I had to take a 2 hour drive to Nelson 2 weeks after the procedure & my leg pen came back with a vengeance!
By this time, sitting became a nightmare, standing for too long was exhausting, as my legs always felt weak and tingly. My hips were always hurting and my lower back was super sensitive to touch, so laying down wasn't/isn't an option, unless I am on my stomach. Life is really not fun anymore.
I am a very bouncy individual, who loves to dance and perform music shows with my husband. I love to hike & horse back ride. I can no longer do my Dog grooming (a great passion of mine) and it goes on & on! I can no longer live my life as I used to... I have extra cushions set up all over my home & car, I don't drive any distance unless I have to, I know exactly where all the bathroom facilities are on any given road trip, (and all the forestry road pull-offs too!) I can't walk my dog anymore, as walking fast or for any length of time causes extreme pain.
I purchased a coccyx cushion, thanks to a few suggestions on this site & it gives me a lot of relief. For me, the softer the surface the better & I wiggle & fidget until I am comfy.
In April I had my MRI L/Spine. I tried to ask numerous people, if this would show a good picture of my coccyx, but nobody could tell me for sure. I found out later that the L/Spine only goes so low as the top of the Sacrum & does not show the tailbone. (A different coil is used in the machine.)
Back to the Orthopaedic Surgeon to review the results & same thing as before, the bulged disc is not the root of the problem, so a recommendation was made to see a Rheumatologist and to go back for another Caudal Block, seen as how the last one worked. (For 2 weeks.) He gave me a shot of cortisone in the left thigh & charged me $40 for it! I kept on impressing on him the severe pain in my tailbone & he finally relented & ordered a CT Scan of my pelvic area with contrast. (I am booked for May 5th) I was really upset leaving his office, as I had high hopes that he was going to be the fella to help me. Apparently he has done a couple of surgeries on the coccyx, but doesn't seem to want to lead me in that direction AT ALL!
On April 22nd I went back to see the Epidemiologist and he suggested a route I could take. I should consider myself to be in pain management mode until they can find the root of the problem. (I keep telling them the bloody pain is in the bloody tailbone!!!) He thinks I have two options at this point, I can either go on heavy duty pain meds for the foreseeable future, (this would not be a future to me, I don't respond well to medications) or I could try a sacral nerve block (x2) and if these treatments are successful in decreasing my pain by 70%, then he will refer me to a neurosurgeon to have a Sacral Nerve Rhizotomy. Apparently this is where they go in & burn/deaden the applicable nerves, which offers 6-12 months of relief. Has anyone ever had this done? (Note from Jon - see Personal experiences of nerve blocks for coccyx pain.)
Dr. Lourens gave me another epidural Caudal block, as well as the sacral nerve block (S1-S4) and it was no less painful than before, that's for sure, but it was certainly different. A really hot pain this time. My leg pain was once again, gone immediately, but as I explained the tailbone/bottom pain was still super intense. I will be finding out in a couple of weeks if I am to go back for another sacral block. In the last 2 months, I have had 5 different shots of cortizone & both myself & Dr. Lourens figure we are at the limit! Cortizone is terrible for your bones & this why they recommend that you only have 3/year. (I will suffer through anything right now in order to get some relief somewhere!)
I went to see my GP last week, he was on call, an emergency call came in & he had to go. I had worked really hard on a report, that listed all of my appointments since all this mess started, a list of my current symptoms (there's a lot of them!), plus my current medications, pending appointments and future requests, all of which was condensed to 3 pages & I was very proud to hand it in to him because it would make his life so much easier, especially 'cause I didn't get to always see him.
I got to see him just the other day & boy did I feel a cool reception! He told me that he had read through my updates and he had booked me to see a Rheumatologst, but he also thinks I should see a Gynecologist! Ha! That's a new one! He thinks it could be a feasible avenue!? Who knows, he may be right! Ha!
He also told me that even if something does show up on the CT, there's probably nothing to be done about it, as people live with coccyx pain all the time and sometimes it just goes away! Magic! I got the feeling that we were no longer on the same page...
As my husband keeps reminding me, my GP is my central management & as long as he keeps requisitions and referrals up to date, that's what he is there for. This is beyond his capabilities & I need more people like Dr. Lourens on my side.
So here I am today feeling a little more justified in knowing that there are so many people out there suffering, but with nowhere to turn. My hope is that my story has helped somebody else, just as Jon's & Frances in Ireland did for me & so many more.
A little side note about myself, I was born in Bradford, UK and moved to Canada when I was 13 years old. It's at times like this that I wish that I was still back in England, as it seems like you have a few more doctors that are willing to look & bloody listen! At least it sure seems that way.
I will continue to update my journey as I go along here, but the sad reality is truly hitting me, that I am going to have to be extremely patient & stick to my guns. It has been a roller coaster of emotions and some days I have cried like a baby. I don't like this about myself and often have to tug myself out of a depression. I constantly feel bad for my husband as not only is he having to live this with me, (finding the best position for a good roll in the hay, can be challenging, as some of you lm sure can relate!) but he hears me talking about it ALL DAY LONG! Bless his big heart, he doesn't complain. I also have excellent family & friends who listen and support. This has been a true blessing.
I'm sorry my story has gone on for days, but it has been building for a while.
Thanks to all of you who listen & take good care of yourselves.
All the best from Krazy in the Kootenays.