AG - firstname.lastname@example.org
I am 52 years old (F) and was very active in training for triathlons (swimming, cycling, running) since turning 50. About a year ago I started to have extreme pain upon rising from a sitting position (I work on a computer all day). The pain was around my tailbone area. Then, while running, I noticed that my butt and feet were numb. I thought I was having circulation issues. Gradually, my butt and thighs were burning and numb all the time. Sitting on a donut pillow did not help because the pain was also on my upper thighs and buttocks (not just tailbone). The pain/numbness was also felt in my feet, so I couldn't stand up for the butt relief because then my feet would hurt.
I have been to 6 different doctors and multiple physical therapists – all of them said they could do NOTHING and gave me NO HOPE. I had a treadmill stress test, 4 MRI's, bone scan, multiple x-rays that all show 'normal'. One of my PT docs showed me how to 'adjust' my tailbone with a 'tool' (actually, a sex toy). I do the adjustment myself every few days to keep the direct tailbone pain from being too intense (but the butt pain is constant). One Dr did a lidocaine injection in my sacrum (I had to beg him to do it), but that did nothing. I found your website and saw that there was a Dr who helped a woman with similar symptoms as mine and he was only 10 minutes from my home (Dr Christopher Kain at Westsound Orthopedics, now moved to Kansas, see Doctors and specialists in the USA, Kansas). I saw him today and he did an steroid injection in my tailbone and I literally weeped with joy at the instant relief it gave me (tailbone AND butt nerve pain GONE). However, the relief of the pain only lasted about 3 hours. I was hoping maybe the injection alone would provide relief and I'd not need surgery.
Am wondering if I'm still a good candidate for removal of the tailbone even though the shot did not last longer? I believe I have found a good Dr (he has done the surgery more than a few times). He has explained to me all the risks involved. I'm nervous, but really want my life back. Anyway, I thank you for your directory of Drs that help with coccyx problems. I believe I injured myself by over-aggressive cycling training in spin classes ('no pain, no gain' IS WRONG!). What a relief to explain my theory to this Dr and not have him look at me like I was crazy. I really feel like I finally have hope for fixing this. I will post again if I decide to do the surgery. Thank you, thank you, thank you. –AG
I am more discouraged than ever. After the injection by Dr. Kain in my tailbone, I was contemplating surgery to remove my tailbone. Of course, I got many people discouraging me from surgery. So I went to Dr. Chan (see Doctors and specialists in the USA, Washington) to have internal adjustments of the tailbone done with the hopes that maybe I wouldn't need surgery. Dr. Chan was great and I wish that his adjustments had worked. I had 5 internal adjustments done by Dr. Chan with no change (although the adjustments and the cortisone shot all 'lit up' the pain to different places -- thighs, calves, low back -- where I hadn't felt the pain/numbness before). I went back to Dr. Kain for a surgical consult. I mentioned that my direct, intense pain of the tailbone was gone since the cortisone shot, but that my hamstring and feet numbness/burning pain was still there. He then stopped me and said he didn't know why I had nerve pain in my feet but that probably it was not my tailbone and he recommended against tailbone surgery. I was pretty shocked, because I told him about the foot issues from the beginning. I need a Dr. who will listen!! So, another set back.
Back to square one, I started going to a friend's chiropractor and have had 6 adjustments so far with no relief. He took another round of x-rays and again noted a anterior limbus vertebra on L4-L5. Previous Drs have told me this could not cause my problems, but now I am wondering. I am so confused. My tailbone still aches to sit on although the sharp pain is gone, my butt cheeks are like rocks, my hamstrings and feet burn constantly. I don't know if I should request a ganglion impar block for a tailbone issue or an L4-L5 block as a diagnostic tool. So tired of having to force doctors to do something. I am not making this up. I want my life back.
I start a new physical therapist on Monday, but am not very hopeful.
Since my last update, I've been to a few more Drs, physical therapists, and chiropractors with no relief, unfortunately.
I went off all drugs (including the low-dose anti-depressant I have been on forever for seasonal depression) and saw no change in my pain (have been off all drugs for 3 months now -- except for an occasional half-a-tramadol for pain). I went the round of the traditional 'pain mgt specialist'. He said he would not touch me until he had a diagnosis. He referred me to a neurologist who did NCS and EMG studies and found no significant nerve damage. Went back to Pain Guy who said he would give me injections in my S1 and an injection in my tailbone (the pain-upon-rising was coming back strong from the last injection). Again, the injection helped the specific pain-upon-rising of my tailbone, but did not touch the sit bones/hamstring/feet pain. I asked what my diagnosis was, and he said 'I don't know'. He offered me no more help. He continually discounted me anytime I mentioned that I thought my pain was tailbone related: 'there just aren't any nerves in that area' were his words. Went back to my GP who also said 'learn to live with it - oh and you really should be on an anti-depressant'. No thank you, I said.
I went to a Dr recommended on this website, Dr Michael Hatzakis of Rehab Options of Issaquah, in Issaquah, Washington. Dr. Hatzakis told me I had an unstable pelvis and plantar fasciitis and recommended a specific course of PT. This was the first Dr to say I had plantar fasciitis!! If this was true, then truly my butt/leg pain could be entirely caused by the coccydenia and not something higher up in the spine. However, at the time, I rejected his diagnosis of unstable pelvis and did not follow through with his PT recommendations (primarily because I had already tried a pelvic belt as recommended by a chiropractor and got no help from that).
Learn to live with it is something I decided to try to do. I read Dr. Sarno's Healing Back Pain, Dr. Hanson's 'Back in Control', and Dr. Burns' 'Feeling Good Handbook', and books on MBSR (mindfulness-based stress relief). These books have helped me tremendously and I highly recommend them! I feel in control of my life again. I am starting to understand the power and the elasticity of the mind. I feet that even at 52 I have hope that I can change some of the negative thought patterns that I have had all my life. Emotionally, I feel the best I have felt in a long time. I addressed and 'worked through' every issue in my life that has been painful and caused anger/angst/depression/sadness, etc. It felt really good to get out all the anger towards doctors, especially!! I'm learning really great mindfulness meditation techniques to find acceptance/peace in the midst of pain and mind-turmoil. I think in the long run, me going through this butt pain issue will be a positive thing because of these things I am learning about the brain and about myself.
Yet the pain in the butt/feet has persisted. Pain that keeps me from concentrating and doing my job well. Pain that is still affecting the quality of my life. Pain that is preventing me from being as active as I once was and want to be again.
One of the main points that Dr. Sarno makes is that 'there is nothing structurally wrong with your xx' (tailbone in my case). I am having a hard time believing this to be 100% true in my case, which I know will hinder my recovery if it an emotional-based pain. Thus, I have decided to try a few more things that I hadn't yet tried to 'fix' this tailbone issue. My reasoning is that if these 'last ditch' efforts don't work, maybe there really is nothing wrong with me (as my Drs have told me) and I should probably get some intensive counseling to delve deeper into any emotional/psychological issues that are keeping me in pain.
I am now 5 weeks into my 6th round of PT with a new therapist who is following the original orders of Dr. Hatzakis. This PT guy does pelvic adjustments on me about twice a week and they seem to be holding (he measures my legs and says they are the same length now and they were off before). I am doing a lot of core stability exercises on stability balls, wobble boards , balance discs, and balance pads. Also, a lot of hamstring, glute and calf strengthening, stretching and rolling on foam rollers. I do them faithfully for at least an hour every other day. My PT also has a 'combo' machine that is both TENS and ultrasound at the same time. They use this machine on my glutes and hamstrings and the tight muscles go absolutely crazy! But I do believe this is helping my hamstring and foot pain a little. The pain seems to be more concentrated up in the coccyx area now. I will continue with these exercises because they are generally good for me. This has been good to get me out of a period of inactivity that was only making my pain worse. One thing I am doing now is to go a little further into the pain in the hamstrings when I stretch them. And I keep knees straight, not bent like I had been told to do. I seem to be able to go a little further in the hamstring stretch now by doing this. I am also able to roll on my IT bands without excruciating pain that was the case a few months ago.
Because my hamstrings went so crazy on the combo machine, I decided to go see Dr. Singh at Seattle Spine Center for some dry needling to this area. Dr. Singh was originally recommended to me by Dr. Brian Chan who I saw early in 2013 for manual manipulation of the tailbone. Dr. Singh agreed that my upper hamstring pain could be caused by the coccydynia (I don't think he realized how significant this was to me when he said it -- no previous Dr had ever agreed with me on this). He did one round of dry needling (no relief), but his main recommendation was prolotherapy. He recommended I make an appt with Kathe Wallace, a Seattle area physical therapist well-known for treating pelvic floor and coccyx issues. He wants her to examine me and then tell him specifically where he should do the prolotherapy treatments. Of course, both her treatments and the prolotherapy are not covered under my medical coverage. I am a little skeptical of another pelvic floor specialist since I have been to two already -- they have poked around 'in there' and did not found any significant trigger points.
My plan for now is to continue with my PT and see if I make any progress with this. My appt with Kathe Wallace is not until November. I am contemplating flying to New Jersey (from Seattle!) to see Dr. Foye to get some sit-stand x-rays to see once and for all by THE EXPERT if my tailbone is dislocating when I sit (it feels like it is dislocating to the left and there is a very tender area to the left of the tailbone). I convinced one Dr to do a dynamic xray on me, but the xray technician had never done one and I am not sure he did them correctly (they read them as normal, even though they did not look 'normal' to me). I would really like to have THE EXPERT do dynamic x-rays on me.
I'll report back later as to which of these routes end up working for me: continued PT, prolotherapy, trip to Dr. Foye, surgery, or straight up counseling. :)
Again, I appreciate this website so much and if anyone has similar coccyx pain to mine (radiates to the ischial tuberosity (sit bones) and upper hamstrings as well as feet pain -- which now I'm finding could be unrelated as plantar fasciitis) please contact me and let me know what helped you!
In my 'crazy' mind, I still think all of my pain is tailbone related -- it all started at the exact same time! My current theory is that my fall 3 years ago damaged my tailbone, then my intense triathlon training (with little stretching) and long hours of sitting at work was the last straw and now my tailbone 'permanently' dislocates to the left when I sit. This pulling of the tailbone causes a chain-reaction of pulling on tendons/nerves that make the sit bones/upper hamstrings VERY tight and painful and then the calves get tight and that has caused the plantar fasciitis. But, I'm no doctor, so what do I know?! :)
Thank for listening!
I had 2 appts with Kathe Wallace, the pelvic floor specialist in Seattle (see Doctors and specialists in the USA, Washington), before my insurance stopped paying for PT visits for 2013. I do recommend her and may end up going back after the beginning of the year for more help. She gave me good tips on posture and other exercises to correct the 'pelvic instability' (one leg is longer than the other, but goes back to being the same length after I do a special exercise). Her internal exam found what a couple other specialists have found: a very tight left levator ani muscle. The million dollar question is: Is the tight muscle causing the tailbone pain or is an unstable tailbone causing the muscle pain/spasm? When probing for spots that would be of benefit for prolotherapy, she discovered painful trigger points on my sit bones. Actually, I've known they were there for a long time and have tried to massage/roll them out before with no success. She suggested I go back to Dr Singh and have him target these areas.
I asked Dr Singh to do a standard cortisone shot in both sit bones because the prolotherapy is not covered by my insurance and I had never had a shot in this area. It was a HUGE revelation to me that he found fluid in the bursa of my sit bones when he did the ultrasound-guided injections there. Dr. Singh stated that many cyclists suffer from ischial bursitis -- confirming my belief that spin class/cycling had something to do with my pain. A quick web search on ischial bursitis revealed that this causes burning pain in the sit bones/hamstrings and even down to the feet just like I have been experiencing for almost 2 years. A week went by and I estimated a 20% reduction in the sit bone/hamstring pain. I was super excited to FINALLY have found a reasonable explanation for this pain.
Another week went by and a nagging feeling started coming around -- my sit bone/hamstring pain had lessened, but my tailbone pain seemed to be coming to the forefront of my brain. I found a more local orthopedic doc and spoke to him about doing arthroscopic bursectomies in the hopes of further pain reduction. He gave me another cortisone injection in the area (this was 3 weeks after the first). A cpl days went by with the usual uptake in pain, but on the morning of day 3 I awoke to extreme pain from butt to feet which so far has not let up very much. Unfortunately, I think it was caused by having sex for the first time in a few months. This sad realization for me is that if I want a life again (including being able to have a normal marriage) I must remove my tailbone. :(
On my return visit to Dr. Singh, I asked him 'How can I have 2 rare conditions? Coccydynia AND Ischial bursitis?'. He said he thought they were all related to one issue of tight muscles. So we are back to the million dollar 'chicken-before-the-egg' question. He does NOT recommend coccygectomy or arthroscopic bursectomy. But I feel I have done everything humanely possible to 'fix' these tight pelvic floor & butt muscles over the last 2 years: rest from exercise, muscle strengthening, internal and external massage ad nauseum, pelvic floor relaxation exercises, breathing into the muscles, kegels, pelvic stability exercises, chiropractic, dry needling, ultrasound therapy, cold laser therapy, TENS therapy, and next week: intragalvanic stimulation (electrode up my rectum to stimulate the levator ani muscle). I am out of options for a non-surgical fix.
I know of 2 local surgeons who have each done about 5 coccygectomies. However, I want someone who has done far more than that. Therefore, the search is on for the closest surgeon to Seattle who has done at least 10-20 of these operations. If anyone has any recommendations, please contact me! I still may make a trip to see Dr Foye in NJ so that I can get possible confirmation from him that my tailbone is dislocating to the left when I sit. In the meantime, I try to keep swimming, walking and doing my PT exercises. I fight off depression minute by minute (mindfulness meditation is still helping). I will be living with this for at least another 3 months because I cannot have the surgery before my daughter's March 2014 wedding. But, I do hope that 2014 will bring healing eventually.
Again, thanks for listening to my rambling. I put this out there in hopes that it will help someone with symptoms similar to mine.
My apologies for waiting too long to do a final post on my story. The winter of 2013 was very dark for me. I was in a very bad pain cycle and lost hope that I would ever get better. I remember feeling suicidal many times. In January of 2014, I flew from Washington State to NJ by myself in the midst of a snow storm to visit Dr. Foye. His sit stand x-ray confirmed a significant dislocation of my tailbone when sitting. It was all the 'proof' I needed to convince myself to get the surgery. The closest surgeon that had done more than a few TB removals was in Southern California (I'm sorry I don't remember his name). I flew to visit him and he examined me and said he would do the surgery.
I tried one last round of pelvic floor therapy with Cora Trujillo at Swedish Medical Center in Seattle. She used an anal electrical stimulator -- a kind of tens machine. She advised me against the surgery. 5 or 6 treatments with her provided no lasting relief. It was this connection with Swedish Medical Center that led me to Dr. Bastowrous. I decided to try to find a surgeon closer to me so that I wouldn't have to fly home a day after TB removal. Dr Bastowrous was well respected Colon and Rectal surgeon and had some very good reviews. When he met me and examined me he was honest with me and said he was not convinced the surgery would relieve my pain. Thankfully, he said he would still do the surgery. I had been on tramadol for a year or so for the pain and I realized that I was slowly needing more and more to ease the pain. This concerned me as I did not want to become addicted to the pain meds.
I went back to my GP around April and told her that I was planning to have my TB removed. She looked at me like I was crazy and said 'you do not need to remove your TB you need to be on an anti depressant'. This really upset me at the time. She was not directing my care at that point, I was. But I'm not a doctor and her words struck fear in me. At home that night I had a full blown anxiety attack which I have never had before or since. I couldn't breathe. My heart wouldn't stop racing. I paced the halls of my house for hours. All I kept thinking was that I was going to be in pain forever. I had to go back to the Dr next day and get a shot of anxiety med to break this anxiety cycle.
Against the advice of my GP, I had the surgery in May of 2014. It was outpatient and was quick in and out. The 2 inch scar was 'glued' instead of 'stitched' on the outside. I set up a massage table in my living room and lay on it for a week or so while I recovered. The picture attached was taken 2 weeks after surgery. When I started sitting I could tell the sharp pain in my TB was gone, but the hamstring and foot pain was still there. I was pretty discouraged, but at the same time relieved that I wasn't worse after surgery (a big fear prior to surgery).
The surgery was a success to me because I was able to stop taking the tramadol. I think it did help to reset my pain levels. I was still in pain, but it was less than it was before. Recovery was slow -- I walked slower than normal. I still had the hamstring pain. Over a period of about 9 months-1 year, I could feel the nerves regrowing -- starting at my tailbone and slowly going down my legs and eventually through my feet. That was a strange feeling! I think my pain was about 30% better after a year from surgery.
I tried one more round of seeing pain doctors in 2016 -- 2 years after surgery. I saw Dr Attaman in Seattle for a series of pudendal steroid shots and a nerve ablation. One round of prolotherapy by another doc that I can't remember his name. No real change with this treatment. My face broke out horribly from the steroids. I think it was this that what finally convinced me to stop looking for help medically.
Now, Oct 2018, I'd say my pain is about 75% better than it was. I still have sitting pain and occasionally foot pain. Honestly, sometimes I wonder if it is really better or if I'm just resigned to it because it's been so long. I've never really gone back to cycling. I don't do triathlons anymore. I walk for exercise and enjoy barre class because it is all done standing -- sometimes yoga and pilates are hard on my tailbone. I am still glad I did the surgery. I was able to get off all pain meds and it broke the cycle of pain for me. I don't take anything these days for pain -- not even tylenol. I am not obsessed with my pain anymore. I meditate and am kinder to myself and my body. This pain journey that I was one was all-in-all a good thing for me. My husband says I'm a changed person in a good way. I've done a lot of healing of the mind. Looking back I believe the root cause of my pain was a combination of the following:
1) the way my body deals with stress: tightening muscles without even realizing it
2) sitting too much for 30 years at a programming job, and 3) overuse when training for triathlons (running and biking).
The first one is the hardest to change. Changing this body response to stress takes years of practice and doesn't happen overnight.
Recap of Jan 2012-Jan 2017 (36 mths): Specialists seen: 3 MDs, 3 Surgeons, 2 Neurologists, 5 Pain Specialists, 2 Mental Health Drs, 4 rounds of PT, 4 Pelvic Floor Specialists, 5 Chiropractors, 1 Acupuncturist, 3 Massage Therapists, 4 MRI's, 10+ x-rays/bone scans/ultrasounds. Hundred and hundreds of additional dollars spent on home PT equip, dozens of special cushions, a couple new chairs, special shoes/inserts, pain medications, and self help books. During this period I must have spent over 500 hours spent searching the web for answers/help.
I'm so glad those days are over. I have gotten back to living. I wish much love and hope to those of you in the midst of pain right now. Never give up hope. Keep fighting and it WILL get better!
Scar two weeks after surgery: