Yani, USA - firstname.lastname@example.org
I have been reading this site now for quite a while, it has definitely helped a lot to know that there are people out there who are going through the same coccyx problems as you.....
I'm 32 years old female and my coccyx agony started on August 2015. I used to work at a medical office and I fell from a rolling chair 3 times in July 2015. At the beginning I did not feel any pain... the real problem started as soon as I began dental school last year. I started classes on August 3rd, 2015 and I had to be sitting for 8 hours a day with 10 minutes breaks every 2 hours (the duration of every class). After a week of this, I started to feel an increasing and uncomfortable amount of pain in the tip of my coccyx, right between my but cheeks and a little up too (lower back). I also had some pain in the right hip before that since I used to run, so apparently that exercise completely messed up my hip. The first doctor that I saw was a general orthopedic, he gave me a cortisone injection in the right hip that did not make any difference at all. He did not paid any attention to my coccyx problem so I made an appointment at a Spine Center in Miami and was seen and treated by a DO (Osteopathic doctor). He performed a lumbar MRI and a pelvic MRI which showed a small herniated disc at the L5-S1 level. The pelvic MRI showed that my coccyx was a little bend anteriorly but he said that it was probably an anatomical variation and not a result of a fracture. This doctor prescribed cymbalta for nerve pain and physical therapy for my lower back pain and my coccyx pain. All of this was going on while I was still in dental school sitting for long periods and feeling worse and miserable everyday. I went to the emergency room 3 times in August because the pain was unbearable, they gave me tramadol, dilaudil and other strong pain killers (injected). I received partial improvement for few hours and then I was back to the same level of pain. I could not sleep, I could not drive even with the coccyx cushion, I could not have a normal life. I was also taking narcotics for my pain (perscoset) and lots of steroids for the inflammation. NOTHING HELPED!!! I was in constant pain, drowsy and depress and I WAS IN DENTAL SCHOOL, I needed to study and I was unable to do so in my condition.
To make a long story short.... I spoke to the dental school dean and explained my situation, she completely understood and told me that the most important thing was to take care of my health first and then I could be successful in my career. I provided all the required medical documentation and I was granted a medical leave of absence for a year, so that I could take care of my problem. August 28th, 2015 was my last day of class, I was totally depressed and hopeless because I had to stop what I had been dreaming all my life... be in school to become a dentist.
I was in the hospital for 3 days and they could not figure out why I was having so much pain in my lower back, my hip and my coccyx. So they sent me back to my spine doctor who told me that I needed to do core exercises to strengthen my muscles around the lumbar hernia and he also referred me to a chiropractor for coccygeal internal manipulations.
I was in physical therapy for 4 months and this somehow improved my lower back pain but not my coccyx problem. I started Yoga in September and this really took care of the lower back problem, I started to feel improvement in my coccyx due to the exercises to strengthen the muscles around that area. I had 14 sessions with the chiropractor and I had some improvement until session 9 ( I could say I was a 90% better). One day I forgot to take my cushion to a doctor's appointment and after sitting for an hour I started feeling pain in the coccyx which was very discouraging as you can imagine. The chiropractor did few more manual manipulations and it didn't improve at all ( I was back to a 50% better again). I stopped going to physical therapy, and the chiropractor in November 2015. On my last appointment with the spine doctor he told me he could not do anything else for me, that the option that I had was a coccygectomy but he didn't think I was a good candidate for that. He told me that there was some experimental stem cell injections for that problem but It was not covered by any medical insurance so I immediately disregard that option.
I left the office crying because I though my life has ended...my dream of going back to school...of being a functional person...etc.
But god is a good god, and for some reason I remembered a friend of my family who works at the neurological department of Jackson Memorial Hospital in Miami, Florida. She was a medical doctor in Cuba so I explained my whole situation to her. She said that I needed to see a neurosurgeon and gave me the name of Dr. Allan Levi at University of Miami, which is affiliated with Jackson Memorial Hospital (see Doctors and specialists in the USA, Florida). This doctor has an office at the university and another one at Jackson. I had to send him all my records with included a bone scan that the Spine doctor had me do (it did not show anything wrong with my coccyx). Dr. Levi picks his cases based on the records that patients send, so I also wrote him a letter explaining my problem, my desire to go back to school and the short amount of time that I had available before I could start again in August 2016.
He took my case! ..I had my first appointment on January 5th 2016. He said that the herniation that I have was very small and he did not recommended any fusion or any kind of surgery for it. He said that the coccyx problem was a different story, that he could perform the surgery but it was completely up to me. He explained that usually spine problems in general will see improvement and completely relief after few months of treatment, like 2 or 3. After that it was not likely to change without any other kind of intervention. I have been having issues with the coccyx for 6 months now, so it was not likely to change by its own. He was very clear and to the point, he told me that the success rate of the surgery was a 50% chance....but fortunately I was willing to take the risk, it was either the chance of improving...or have a life of coccyx problems. He told me that he needed to do some X-rays and a CT scan first, and based on that he could schedule the surgery.
The CT scan showed an "Anteriorly displaced coccyx" finally something showed why I had so much pain!!! and he was going to perform the surgery.
My surgery was on January 22nd 2016. Because all the horror stories that I have read through out the internet I though the recovery was going to be a nightmare but it was not the case. The day after surgery I was in pain but it was controlled by the medications given at the hospital (I had to stay 24 hours after sx in the hospital). I was able to seat on my way back home. The pain was uncomfortable but nothing that you can not stand. I was able to lay on my back since day one, but I used to switch to my sides every 2 hours or so. The worst part is the first bowel movement, It took me 3 days before I could do so. I was very constipated because of the anesthesia. I had to take some over the counter stool softener to help ease the problem. The night of the surgery I had much trouble trying to pee, but its normal, its because of the anesthesia also, so do not freak out if you have to push a lot in order to pee at the beginning. The 4th day of the surgery I stopped taking the narcotics for pain since I have stomach problems and I don't feel good when I take too much medications.
I started feeling a little more pain than usual on day 6 after surgery, and I told my mom and husband to check the wound since I felt like it was wet (the wound has to be covered the first week, it can not get wet and someone need to change the dressing once a day). They told me it looked definitely wet, and a brownish discharge was coming out of it. I immediately call the office and they told me to go to their clinic on the same day. Thank god I did, a slight superficial infection had started so I was prescribed antibiotics for a week. The nurse told me to keep the wound covered and dry for another week and change the dressing 2 times a day. She gave me an appointment for a week after that.
LET ME EXPLAIN SOMETHING ABOUT INFECTION: Its very common to have an infection after this procedure, I took good care of the wound and I followed directions perfectly, but remember that this area is very prone to infections because its close to the anus. The important thing here is to catch it on time and take care of it. Do not let the fear of infection prevent you from performing the surgery please.
2 WEEKS FOLLOW UP APPOINTMENT:
I had my appointment yesterday, the wound is completely healed in terms of infection. It looks very nice, actually the nurse had a hard time looking at it because the incision is very small....it looks like a piece of thread. Its completely closed and I have a slight discomfort because I had to seat a lot yesterday. Its slightly painful but I definitely feel it improving everyday. My next appointment will be in 4 weeks with Dr Levi. He will perform some X-rays and give me instructions of what I can do or not. He will also give me the discharge if everything is ok.
I will keep you posted on my improvement. I really hope that everyone can get some help with my story. If you have any questions please do not hesitate to contact me. I will be more than glad to help with anything I can.
I ALMOST FORGOT: Dr Levi told me after the surgery that when they opened the area the coccyx was completely loose! It was suspended by a small piece of soft tissue and it will move like a finger.....also there were small pieces of bone around the area...so definitely my coccyx was completely messed up! I asked my friend from Jackson about this and she told me that not all doctors know how to look at a damaged coccyx...its very tricky and not always clear in the MRIs, etc. Make sure you find a doctor who is very good at it. I will say come to Miami and see Dr. Levi. :)
SOME ADVICE FROM MY PERSONAL EXPERIENCE;
Do not wait more than few months to consider the surgery. The more time you have the pain, the less likely the surgery will have a success because when the coccyx is damaged and its more mobile than it should be, it starts damaging the nerves and muscles of the area. This is the reason why some people who have the surgery stay on pain after the procedure is performed.
Every story is different, when I decided I was going to have the surgery I only read the positive stories about the coccygectomy, the successful ones, there is not point on reading the horrible stories about it, it won't bring you anything good....
Start taking this vitamins that help with wound healing and nerve pain: Vitamin A, Vitamin C, Zinc, Vitamin B1, B6 and B12 ( I started taking them 2 weeks before surgery)
Be positive, you have nothing to lose and a lot to win!
DO YOGA! I can not emphasize the role that this have had in my life, physically and emotionally.
I wish you all the best :)
Note from Jon Miles:
I emailed more than a year after this story was posted, to ask for an update, as the long-term outcome of treatment is of great interest. In this case I did not get a reply.