Anony Mous, Puerto Rico - email@example.com
First symptoms (Spring 2019):
I'm 23 years old and I live in Puerto Rico. Since I was a little girl I had a little "tail" as my mom called it. The protuberance was not visible but evident at touch. It was not painful for me, I was a happy and active little girl, the adults were the ones who complained about how my bony butt hurt them when I sat on their laps. Growing up I never had any issues besides having to sit putting all my weight on one buttock or the other. As an adult I could do normal physical activities but everything changed when I got 22 years old.
As soon as I got my first job at retail I started to have some periods of pain on my lumbar area. I wasn't sure if the causes was standing for too long, sitting for too long, sexual activity or all of the above, but I was sure it had something to do with my little "tail". I decided to get X-rays and visit a doctor to understand my condition. I was surprised to see that my coccyx was sooo deformed inwards and that the pointy part wasn't the tip of the coccyx as I previously believed (I was totally ignorant about the anatomy of the spine). I asked my doctor if he could fix me and his reaction scared me: he told me that there was no way for him to even try because it being so near to my intestines made the procedure too risky for infections and that could have serious consequences. He also told me that I had inflammation which made the pain worse, he recommended me to take Ibuprofen for several weeks.
Pain increased (Summer 2019):
After a couple of months after, I was knocking his door again, this time with more pain than before. This time I brought MRIs so we could see more clearly what was going on. He seemed frustrated because he genuinely wanted to help me but all he could do is to recommend me pills and cushions. I asked him about other alternatives and he explained to me that it was just impossible for me to get any other kind of treatments in Puerto Rico because any other colleague would be able to work this case because it's just too rare. If a surgeon has never done the exact procedure before the risk of the first attempt is too high. He told me that in the US maybe I could find a surgeon with enough expertise to help me. At this moment I started to feel anxiety, questions came to my mind and I felt hopeless. How can I investigate about doctors outside of Puerto Rico? Does my insurance work there? Can my family afford something like that?
I decided to keep trying to have a normal life despite of my condition. I got to manage it for several months, but it gradually got worse. I've always suffered from constipation and every time I was constipated the pain got worse. The episodes of pain became torture, I would be laying on the couch all day. I now work on an office so I'm mostly sitting for 8 hours. I already was taking acetaminophen/codeine pills when needed and still.
We traveled (October 2019):
So my family and I decided to give it a chance, I took some days off work and we arrived to Minneapolis to the Twin Cities Spine Center, as my doctor in Puerto Rico recommended. Unfortunately, after spending hundreds of dollars just to be there, the doctor I was referred to denied me any kind of treatment. At first I was happy because he told me that I could live like this and that I should check with my gynecologist to see if the pain was related to other problem. The thing is that as soon as I was back working in Puerto Rico the pain got really bad. My doctor in Puerto Rico couldn't believe that I was sent back without any further studies or maybe the Minneapolis doc having check with his colleagues to see if any of them could have treated me. I'm grateful that the Spine Center's doctor did not tried to do anything crazy as doing surgery without enough experience, but that doesn't mean I'm not disappointed by the way he pushed me aside without even trying to find someone who could help me. I incurred in traveling costs just to see him...
Pain got worse… seriously! (and it was still October 2019!):
At this point I was really terrified and hopeless. The pain was just increasing quickly even using pills and cushions. Ibuprofen was no longer viable and only acetaminophen/codeine helped me. I was afraid of developing a pressure injury because my skin was getting darker and thinner visibly. The peak of the pain was the week before Halloween. I hate to be absent so I finished the whole week somehow but I remember that Friday as the worst shift I've ever done even though it's a relaxed environment. I got an emergency appointment with my doctor in PR on Thursday and together we found coccyx.org so during my break on Friday I selected doctors who had good reviews/stories about coccygectomies to call for an appointment. I focused this time in Florida since an uncle lives there so it would be more convenient and the only office who answered my calls was Dr. Katzman's (see Doctors and specialists in the USA, Florida). I heard from a representative of his office that he was one of the only three doctors who do the procedure on the US and are successful. I read the stories on coccyx.org and they seemed wonderful so I arranged an appointment. After getting home I didn't sit again to avoid putting pressure on the coccyx. I was absent on Monday, Tuesday and I got to Florida that Wednesday and fyi the pain was so bad I had to got 2 seats so I could lift my legs and lay on the side.
Outside of PR again (and yes you guessed it, it's still October):
In Dr. Katzman's office they did an additional X-ray and discovered my coccyx was actually fractured inwards in a 100 degree angle making pressure to my intestine and the base of the coccyx doing pressure on my outer skin. He recommended the coccygectomy and was pretty confident about the success of the procedure. So we set the day of the surgery and I got to my uncle's house to contact my health insurance and arrange everything. The thing is my uncle lives in Tampa while Katzman's offices are on the south east of Florida and traveling that day for almost 4 hours was heavy. Just thinking that I would need to travel the same distance after surgery because it was going to be in an ambulatory center… yikes…
Waiting for surgery:
By mostly resting and eating healthy for two weeks really improved how I felt, but I still wasn't able to sit in a normal fashion. The most difficult part this days were preparing myself mentally for what was coming. Based on the information I got from previews doctors and the internet this surgery could have disastrous outcomes. The risk for infections, the risk of the surgeon hurting my intestines.. I was really scared and I felt impotence because it didn't seem like I could avoid this surgery anymore. I googled more about my surgeon just to feel safer and it was the opposite: I read an article about him having some accusations of malpractice and they were many. I was panicking, I felt like my hands were tied because I was already here, my family spent too much money and now this insecurity about the doctor's capacity to make this surgery. In one hand he had all the credentials and prestige but having these accusations seemed like a red flag and I was afraid to make a mistake that would cost me even more. My final decision was to proceed though, because the article also said that even assuming the accusations were true, he has a 1% risk rate.
The real nightmare: Dealing with your Healthcare Insurance
After having approved the first appointment my health insurance decided to take it slow with the approval of the surgery. Ugh… I called everyday for a week just to see how it was going and they approved it THE DAY BEFORE OF THE SURGERY AT 3PM… It's absurd to have a patient staying in another state, spending money, in pain, about to get surgery and having lots of anxiety not only for the procedure but for the approval and coverage. I had to pay an out of pocket max ... lucky we could afford it this year, be prepared.
The surgery, it was a success!!!
I woke up to find out that it was successful just as the doctor promised! I was so happy and relieved for it! Thanks to doctor Katzman I was coccyx free lol. He removed my coccyx and shaved my S5. I wasn't in a lot of pain thanks to the effects of the anesthesia. I stayed in a hotel that night to travel the next day to Tampa.
On the road for a long distance trip the day after the surgery... DON'T!!!
Omg it was hell. The most pain I've felt in my life was those 9 hours (that were supposed to be 4) we spent trying to get home. Maybe it would have been different if I made sure to be fully medicated. I puked the breakfast I had on the hotel and I guess so the pills I took, and because I was in a hurry to arrive I got into the car right away. Wrong. The whole drive I was trying to eat something and have my medications but I puked a hundred times. Because I was laying down on the back seat instead of being seated I got dizzy real quick. I couldn't digest the painkillers so I could feel EVERY detail of the road on the incision. There was a moment it got really bad, we stopped to go to the bathroom and I fainted for a couple of seconds in the arms of my mother, maybe because I was in pain, dehydrated and standing. The only way I could get home was stopping for real, taking a break on the parking lot, eating a chicken sandwich, taking my pills, taking a one hour break to digest everything and then continue when I made sure the percocets kicked in. Still painful but bearable in comparison. I don't mean to discourage anybody who has to travel a long distance for the surgery, but I should warn you about the importance of digesting your food and medication before attempting it. Also take as many stops as you need to and be ahead of the pain.
It has been exactly two weeks and everything seems to be healing properly. I've observed the changes on the incision and it looks positive. It's small in size, like 1.5" and it looks like it's going to heal in a nice looking scar. I've been eating a high fiber diet and stool softeners to make my life easier and indulging myself with tv shows and movies. The best part is the sensation of peace and relief. Even though I'm in pain, I'm relieved because I know I'll finally get my life back to normal. This pain is slowly fading and when I'm fully recovered I'll be back in Puerto Rico taking my life back. I'm deeply grateful with so many people. Since it was so hard for me to find answers at the beginning, I've made the decision to not only share my experience here, but also share it with the doctors in Puerto Rico and in Minneapolis. I just really wish no one has to go through such a sad, depressing, painful feeling of not knowing what to do. Your life shouldn't be painful and miserable, don't hesitate to get help with doctor Katzman, you deserve this! If you have any questions feel free to email me firstname.lastname@example.org