Pleaby - mailto:firstname.lastname@example.org
This is a long story, but I have structured it, so if you don't want to read it all, read the part you're interested in. I started experiencing coccyx pain about a year ago, very suddenly, no injury or anything else. I had just gotten over a 1.5 month period of insomnia and as soon as that was over I noticed the sharp pain when getting up from a sitting position. After a lot of thinking I remembered that 5 years prior I had fallen on the stairs and hurt the tailbone (hurt a lot for a day and then it was over). At almost the same time I had an accident, which totaled my car. One of these facts, or a combination of them must have done the trick. In trying to help other sufferers I will try to present my story chronologically whenever possible.
June - July, 2007 - onset and first doc visit
I first felt the pain and found coccyx.org (Thank you Jon, you are a savior!). I also scheduled an appointment with an orthopedic surgeon who saw me in July for a total of no more than 5 minutes, during which laughed at my problem (being a pain in the butt) and said I have two options - cortisone shot or surgery and sent me home with a handful of anti-inflammatory meds. Of course prior to the appointment I had x-rays taken which he said showed no fracture or any other abnormality of the coccyx. I tried taking lots of ibuprofen but to no avail.
August, 2007 - manual manipulation
I read here about the possibility that the coccyx is stuck in an awkward position and visited Bill Gallagher (on the list of doctors in NY) for a manual manipulation. He said the coccyx is too mobile if anything, so no it's not stuck.
September, 2007 - MRI, acupuncture
I finally saw my GP who sent me for an MRI of the coccyx /pelvic. It came back with inflammation fluid around the C2 (figures!). He sent me to an orthopedic surgeon. I couldn't schedule an appointment with him however for 2 months and at this point I thought I could not wait that long. I read somewhere here about acupuncture and decided to give it a try. BIG MISTAKE! I'm not sure if my acupuncturist was inexperienced or something else, but overnight all the pain in had I my coccyx got transferred all over my back. The coccyx was relieved but only for a day and the pain in my back stayed with me (almost to this day really). I did 3 treatments, which completely messed up my body. Since then my life style just collapsed. A business trip to Vegas took a major toll on it. As soon as I came back I saw a prolotherapy doctor Dr. Scott Greenberg (from the list of docs in NJ), who had very impressive credentials and claimed to have "fixed" people with my condition. Looking back this was the biggest mistake I made, but who would have known. I was looking at either prolotherpy or visiting Dr. Foy in Newark, NJ. Boy do I wish chose to go to Dr. Foye instead.
October - March, 2008 - prolotherapy and a ton of wrong diagnosis
I did 10 treatments of prolotherapy throughout the months (I trusted Dr. Greenberg who kept promising to fix me). The thing is after the 3-4 treatment I felt much better for about 2 weeks. Then it all came back full force. This happened two more times - I would start feeling better and then it will go downhill again. In the meantime I got checked for MS, Lupus, Fybromialgia and a ton other autoimmune disorders, as well as Ehlos Downlos Syndrome. Every doctor I saw gave me a different diagnoses. Somewhere in December I went on disability. I tried ozone therapy, mesotherapy and even rented an oxygen chamber for a month. The money I spent….ugh.
April, 2008 - a hint of correct diagnosis
I demanded that Dr. Greenberg did more tests and repeat the same MRI from September. The MRI showed a cyst in the C2 area so I left Dr. Greenberg happily and forever. Prolotherapy was such a huge, expensive and God awfully painful mistake. Finding a specialist who treats cysts in that area was quite a challenge, but finally I found Dr. Long at John's Hopkins and scheduled an appointment for Mid June (about 2 months wait). Meanwhile my short-term disability was expiring and I applied for long-term (pretty depressing). All at this time, while I was absolutely convinced I had a cyst (which I also felt one time when I was in a pool) my husband scheduled an appointment with Dr. Foye (see list of Drs in NJ).
May, 2008 - Dr. Foye and finally a correct diagnosis!
May I just flat out say, if you are experiencing prolonged coccyx pain and live anywhere near the Northeast, do yourselves a favor and visit Dr. Foye in Newark NJ. He is extremely interested in this area of the body, communicates with Jon Miles and Dr. Maigne in Paris who is also very advanced in the field. Dr. Foye took a long time to review my second MRI and showed me what he thought was a fracture. He wasn't sure, so he ordered SIT DOWN X-rays (same day at the hospital). Those are the only X-rays that accurately can tell when there's been a fracture or any other abnormality with the coccyx. And, sure enough mine showed previous fracture that ended up healing incorrectly with a spur and under what looked like a 90 degree angle. He said I have a "knife" in my butt and was pretty convinced I didn't have a cyst, but just inflammation fluid caused by the perpetual damage that I was causing to it every time I sat. He didn't even try to convince me to get his nerve block injections, which by the way must help people, since patients from all over the country and even Mexico come to see him. His genuine concern, kindness professionalism and knowledge of the condition were in such incredible contrast to all the doctors I saw before him, I was stunned and so relived. I had a diagnosis and a plan for action (he had promised me that over e-mail but I didn't believe it). Dr. Foye highly recommended an Orthopedic Surgeon, whom he works with and whom I already knew about from this wonderful site. Dr. Seth Kane in Paramus, NJ.
June 11, 2008 - Coccygectomy
I met with Dr. Kane and he said that because I am thin I might have trouble with the new ending of the bone and then need another surgery etc. It was quite unexpected and I was very upset. I had heard of the risks of infection, but this… I went and saw Dr. Foye again, who reassured me that this is the right thing to do for me. So I scheduled the surgery for June 11.
June 11 - Day of surgery - Everything went smooth, except I was very drugged when I woke up. I might add that Dr. Foye came to see my surgery. This is how much he cares about learning about this so under -researched part of the body. Knowing he'll be there was great as I was a big chicken that day. The Hackensack staff was very courteous and attentive. At about 5 PM (surgery was at 8 AM) I finally left the hospital with about a dozen pillows and a perkoset to last for the long ride home. My husband made the front seat very comfortable for me and I fell asleep and woke up at home. Don't remember much of that night.
June 12, 13, 14 - I'm not going to go into details, as there's quite a bit written about these days by other patients. I was experiencing what most people described. Dr. Kane told me to start sitting as soon as I wanted to, so I first tried on the 1st day post op for a few seconds and kept trying every day. Shower and changing the bandage were quite fun. My mom helped me with that and told me that the incision was vertical and you almost cannot see it. She was very impressed with Dr. Kane's work - no bruising, no swelling, just stitches (removable ones - Dr. Kane doesn't believe in the dissolving ones). I was taking Oxycodone and I tried to start getting off of it the second day - what a mistake. I think I slowly winded myself off of it around the 6-7th day, but continued taking it at night until the 3rd week post-op. Otherwise I couldn't sleep. I was sitting more and more each day. The recovery the first two weeks is very fast, then it gets a little slow…
June 25 - two weeks post-op. I got the stitches removed with no pain whatsoever. Dr. Kane is a magician. When he saw me sitting on the bed, he was very pleased and said I was doing much better than the average patient. He told me to listen to my body. If it hurts - move in a different position. Here's something important - he said that I can't damage anything by sitting too much, I could just experience pain. That piece of information changed things for me, as before I was afraid to over-sit. Dr. Kane also said I can start going to the pool in a few days - not to swim, but just to do little things to help my back. I also started driving a car for short distances - 10 min, then 15, 20, 30 etc.
July 3rd - 3 weeks post-op. Very slow progression, which is at times frustrating. You have to look for the little things to realize you are indeed improving. And then when you over do it, it gets a little depressing when it starts to hurt. My big fear is I'm thin and the new bone ending will never stop bothering me. I still can't lie on my back for longer than a few minutes, or lean back without pain. I did stop taking Oxycodone at night which is quite nice. Sleeping is still a problem as tossing and turning gets old very fast. The first time I went to the pool it felt like I had a jellyfish in my butt - very strange - things were moving in there.
July 10 - 4 weeks post-op. This is where I am now. Again a slow progression, but have to stay optimistic. I can sit for longer periods with almost no pain, just numbness. Still can't lie on my back or lean back for too long. I've been going to the pool (thank God it's summer) and the strange sensation is going away. I feel now that everything is solid in there and was very tempted to swim but had to restrain myself. My back and neck are not doing great from trying to sleep on my tummy and twisting my torso in different positions (been doing it for almost a year). Can't wait for my next appointment with Dr. Kane so he can send me to PT for my back and arm problems. Overall I am doing pretty good. Once I start being able to lie on my back and lean back with no pain, I will call this surgery a success.
I will update when I have more. Until then, to all of you suffering out there, there's hope. You have to find a knowledgeable doctor, before you spend the thousands of dollars on alternative medicine, which although helpful I am sure with certain conditions, did nothing to help my coccyx. Feel free to e-mail me with questions and I'd be happy to share more details.
(For details of doctors, see Doctors and specialists in the USA).