Julianna - email@example.com
I've become almost used to the pain. Sitting on my tailbone day in and day out. I have learned to train my brain to ignore it. But, it never can ignore it completely. I'm reminded that something severe is wrong when I sit down for too long of a time, go to a movie and have to sit in those tiny uncomfortable theatre seats, go on a car ride that is longer than 1 hour. I've gotten my pain thresh hold to come to tolerate pain up to about an hour. Oh, it's never gone, it's there, albeit, dull. But, it's still there. It never goes away; at least it hasn't for the past year and a half. It does though, come and go, depending on how I initiate it. But, for my job I sit in a cubical, sit all day in front of the computer. How can I not indirectly irritate it! It's hard, and it hurts. Last week I went (foolishly) to a movie in the theatre. I thought I could tolerate the pain, but an hour into the movie I was shifting and my lower back then began to hurt from myself putting my body in all sorts of seated positions to try to take pain off of the tailbone. By the time the two-hour movie was over, I could hardly walk out of the place. I was bent slightly over, walking slowly-nearly moaning in pain.
What also is hard is convincing people that something is wrong. Having an invisible disability is quite a challenge. Sure, I come into work, try to keep that (sometimes false) smile on my face, but not a day goes by where my tailbone doesn't hurt, where I have a hard time standing up after sitting for a great period of time. I feel like a fool as I sit in meetings, constantly shifting in my seat to get off the pain and onto my 'good hip side'. I've put so much pressure on my hips to get off of the tailbone, that they too end up in a bruising pain. Coccydynia is unlike a broken arm, a twisted ankle..you can't SEE coccyx pain. The only thing an on-looker can see is how the person in pain is reacting to the pain. And, since many people have no idea what coccyx pain feels like, they cannot empathize. I felt like one of my major challenges was to get people at work to believe me, that I wasn't just trying to be lazy or, better yet-moody. Because lets all admit, chronic pain for ANY long period of time can take a serious toll on your moods. I've had doctors try to put me on Lexapro to stabilize my pain-induced depression; I tried that for a week and ultimately my body felt worse. I had a doctor prescribe me Ambien, as sleeping is quite painful as well. It's been a long long time since I've gotten a full/good night sleep. I don't take that nightly, but, when I do take it-I sleep well.
I initially hurt my tailbone (I believe) about 17 years while I was jumping on my parents' giant trampoline in their back yard. At one point I jumped too high and bounced right off of the trampoline and right onto the tail of my bottom... .on the hard ground. I was in serious pain, but since my friends were around, I just brushed it off as I hobbled away, holding back the tears. In fact, my friends' thought it was so funny that they found a wooden doormat and tied it to my back and backside with a jump rope so it could help me straighten back up. My new name then, was "Wooden Butt Julie" which I still hear about to this day. But, I never thought that it would get any further than that. Sure, the pain hung around, but it eventually subsided. UNTIL, a year and a half ago I damaged it again riding a real sketchy ride at the state fair, I landed on my tailbone and knew instantly something was wrong.
Within 2 weeks I decided to contact a chiropractor (which was completely useless). She took x-rays and did some mumbo jumbo hand thingy on my butt area, which did nothing. She kept asking me if it felt better after every session, and at that time it did. I began then to notice that the only reason it was feeling better was because I was lying on my stomach on that table, and wasn't putting any pressure on the tailbone! Of course it's going to feel better! Her assistant would come in and say, "are you sure it's your tailbone? Maybe it is just muscle pain." I was so annoyed, as I KNEW it was more serious than muscle pain. I felt as if they didn't believe me. But, still wanting help, I signed on to multiple sessions of Electronic Muscle Stimulation. This was a strange sensation, which felt like a tiny electronic current burrowing into your muscle like a tiny-long worm. I didn't feel any relief from this after numerous times trying. Insurance didn't help pay for this either, and the cost added up.
Toward the end of my sessions with her, I think she felt I was getting frustrated and she turned to me and said something along the lines of, "Julie do you want me to help you?" "Yes," I muttered. "Well, I don't feel as if you are coming the full way, like you don't want me to help you! I don't see on your face that you want my help" and that attitude there really turned me off. What she saw on my face was pain. Pain that she didn't improve. I was getting NO results from her, I had gone to her for 3 months and she was giving me attitude. Look "Doctor" I want results, believe me. Of course I want you to help me, that is why I'm here. I just felt so hurt, and slightly offended, and that she thought I was wasting her time. She all but said that to me. I did not go back for another session.
I picked up a donut cushion (kind of painful) and a coccyx memory foam cushion (wonderful for driving and sitting). This was a nice little bit of relief. I also contacted a General Practitioner in hopes he could recommend a doctor that works on things like this. He didn't really have a clue where to go on his end, so he prescribed me Voltaren and gave me a list of Orthopedics. I either wasn't taking the Voltaren correctly, or it just simply didn't work. I took it as needed, where I perhaps should have taken it regularly to build up the medicine in my system. I didn't contact any of the Ortho doctors.
Within a week I found Jon's Coccyx site and scoured the site in amazement that I wasn't the only one that had this condition. I never knew of anyone other than myself having this issue. I am so thankful and have probably read through the entire site numerous times. I've read the good and the bad. From this site, I found Dr. Cardea in Richmond, VA. (see Doctors and specialists in the USA, Virginia). And lucky enough, I am from that area. It seems like these doctors that perform surgeries are rare and I felt incredibly lucky to find him. I wasn't jumping to conclusions that I would need surgery, in fact, I didn't want it..I just wanted the pain to go away. I met with him, he made me bend over (clothed) a table and he pressed EXACTLY where the tailbone pain was. He knew what he was doing. He asked me some questions about how it happened, wanted me to rate the pain on a scale from 0-8 (which I've always found frustrating to do-pain is pain..it all hurts). He then thought I'd be a good candidate for a steroid injection under fluoroscopic guidance.
After the injection, for a hour, I had NO pain. I could sit on hard surfaces and was just as normal as I could dream of being... until I got home. The painkiller wore off in about 2 hours, and then I was cramped up on my bed in pain. It felt different. The pain felt as if shards of glass were biting into my coccyx. It hurt so bad. I took a week off of work because I couldn't sit down and was just in general pain.
I set another appointment for a few weeks later and we discussed the injection. He asked if it worked and I said, "Yeah, but only for a couple hours." I was under the assumption that it would last for awhile, but he corrected me in saying that, 'Well, at least you felt some relief so now we at least know the pain is coming from the coccyx and we should get that thing OUT!" I was shocked. I surely thought that there would be more trials of... who knows... but, he wanted it out. So, I went along with his decision, filling out medical leave paper work, setting up short-term disability, getting the house prepared- as well as creating a giant sense of anxiety within myself. Knowing that surgery was only about a month away.
I have never been so scared of something ever. I know that about 90% of people that get a coccygectomy are happy with the results, but I can't get over the needles, the after-pain, the possibility of an infection. I'm waking myself up at night scared of not waking up from the anesthesia. I know, it all sounds crazy, but I've NEVER had any sort of surgery my entire life. I'm nervous to stay over night in the hospital, alone.
I've read about the possibility of infection, it sounds terrible. I am fearful that after surgery I will be in MORE pain from 'recovering' than I am in now. Then my smart brain kicks in and tells me, "It will be better in the long run" and I know it has to. I'm just feeding myself anxiety at this point.
So, it's January 6th right now, Tuesday. On Thursday the 8th, I am scheduled for an appointment with the Anesthesiologist at the hospital. I'm assuming this appointment will discuss my anesthesia options and risks and hopefully they'll educate me some on this procedure and calm my nerves.
On Monday January 12th at 8:30AM I am scheduled for the big removal of the coccyx bone. I will certainly fill you in on the happenings, that is... if I can sit long enough to write! Please write me if you have any questions! firstname.lastname@example.org. I'd love to hear about your successes and support!
Wish me luck, and send good vibes my way!
January 12 (Monday)- Day of Surgery:
On January 12 at 12:30 I had my appointment to get my coccyx removed. About 2 hours later I was in my room, changed into my gown and answering the same questions that are always asked: "What is your name..." "what are you having done today…" "rate your pain on a scale of 1-10…". Then before I knew it, two doctors came wheeling in a cart and asked if I was ready for my epidural! I was totally taken by surprise, because at my pre-op appointment a week before, the anesthesia nurse stated that, "as nervous as you are, I think it would be best to have you NOT have an epidural and just have the painkiller administered through your regular IV". I made sure with her that I wasn't going to get one, as I was really scared about this knowing people who have had really bad experiences with it. I even signed a form stating exactly what kind of anesthesia I would be getting, and this did not include an epidural.. so, I ask-where did this sheet go and how did all of this possibly get lost in translation! I think it was poor communication and bad organization on the hospitals part. I was left for a moment to discuss the epidural option vs. not having one, and ultimately (though very scared) decided to get one as I was told that instead of putting painkillers into my whole system and probably not even being able to carry on a conversation, the painkillers would only be administered to the lower half of my body. I don't regret getting an epidural, and it wasn't as bad as I thought it would be. I sat on the edge of the bed and had to arch my back like a "Halloween cat" as the doctor said, and they gave me a shot of anesthesia in my back, as well as a sedative in my arm IV and almost instantly I felt "drunk". I got loopy and thank God for the doctor holding me up in front of me, as I probably would have fell over. The doctor on the back of me, then starting feeding the epidural tube into my spine and after the painkiller started work, I didn't feel anything but pressure.
Very soon after I was drowsy and was wheeled out of my room. I saw a glimpse of Dr. Cardea in the hallway and he asked, "Are you all ready?" and I drunkenly answered, "I think so…" slurring my words. The next thing I knew, I was in the operating room. There were big operating lights above me and for some reason I noticed the dirty ceiling tiles. I think I was expected to be 'out' by then, but the gas mask wasn't tight enough on my mouth, although I was still very drowsy. I looked over and there was a gurney bed to my right with some foam padding near the head end. I assumed that I would be turned over onto this bed. The assisting doctor then must have seen that I was still awake, and pressed the mask down onto my face and literally within a split second I was out. No counting backwards, not asking what my name was, I WAS OUT and the next thing I knew I was waking up in recovery apparently 1-2 hours later. My surgery was around 3:15 and I was out by 4:30 and sleeping. I was being helped by a very nice nurse who had GREAT bedside manner. She took off my hair bonnet thing and told me I had beautiful hair, and wiped my face down to get the tape gunk residue off. The first thing I did was reach down to the surgical area and feel what had just happened. I was all bandaged up. I was a bit sore, but I mostly didn't feel too much pain actually! I was lying on my back also! I still had circular heart monitor stickers on me, which got taken off at some point, I don't remember when-thought I was alert almost instantly after waking. My throat was really sore from the breathing tube. It felt very similar to strep throat, scratchy and painful. I asked the nurse for ice chips and she fed them to me, which helped to relieve the pain.
Around 6:15 to 6:30, I was then wheeled back to my very own room by the nice nurse and she set me up until another nurse took over. She taught me how to use the epidural pump, which I cold push every 10 minutes. I was lucky to have the strong Dilaudid in the pump, as it worked great to relieve pain. At around 7:30, another nurse came in with dinner and I noticed it was Turkey with broccoli and I told her I was a vegetarian so she said, "let me see what I can do" and came back with another tray of chicken and squash and told me to eat around the meat. SO, if you have any dietary restrictions - TELL THE NURSES IN ADVANCE. I didn't eat much that night, mostly crackers and jell-o to combat the nausea from the painkillers. Around 11:30 another different nurse came in and showed me how to use a breathing apparatus "to strengthen my lungs". The breathing machine I was hooked up during surgery can apparently make your lungs, "lazy", and it also prevents your lungs from getting pneumonia. My legs were also hooked up to a mechanical massaging machine, which was really nice. This was to prevent blood clots.
I fell asleep around midnight, woke up at 2 am in bad pain so the nurse came in and gave me an additional painkiller, this time administered in my arm IV. So, with the help of the Dilaudid and the IV painkiller, I was a bit better. I was still lying on my back and decided to move onto my side. This was helpful as well.
I slept on and off after that point until 6 am when another "pain management" nurse came in to take out my epidural. She showed me how far the tube was in, and it was about (I'm not kidding) 3.5-4 inches. I couldn't believe it! After this another new nurse came in and told me that I had to "pee" or else I would have to have a catheter put on me. I felt a bit as if I was being threatened, because she came in a few times after and said the same thing. The thing was, I couldn't. The epidural apparently kills all urge to do so. Strange feeling. I knew I SHOULD have to, being probably 8 hours since I last went, but I just didn't have to! Anyway, I tried-but as soon as I stood up I had a terrible wave of nausea, so a nurse administered some anti-nausea meds into my IV and I felt better almost instantly. She commented on my incredibly low Blood Pressure (95/56). Apparently having an epidural and painkillers can give you low blood pressure, but that was really low-however, I have low blood pressure anyway.
I had a new nurse come in, the morning shift. This particular nurse didn't have the best bedside manner. I don't think she was in the profession for the humanitarian side of it. She was quick with me, and a bit rough.
At 9:30 am Dr. Cardea came into visit and told me that the surgery went well, that I had a hyper-mobile coccyx, as well as arthritis in the joint that is why I had so much pain every time I would sit or have any movement that would involve that area. He discussed the incision and the 'tampon-like' gauze placed over the incision to protect it. I had dissolvable stitches. He mentioned I could shower, but make sure I dry the area with a hair dryer on the cool setting. Dr. Cardea said he wanted me "up and walking around and to not have any numbness in my legs. Also, remember you have a 23 hour hospital stay, so no need to rush out!"
I forgot to mention that I had experienced a lot of itching from the painkiller, as well as cold chills. The itching was bad for me, but some people don't experience it. It felt as if I was wearing a scratchy wool sweater. I had yet another bought of nausea, so was given more anti-nausea meds.
Around 11 am the 'not-so-nice' nurse came in and asked me if I needed to go to the bathroom and I didn't so she hooked me up to a second saline drip which apparently helps you have to go. Well, around 11:30, I did have to go so I called her once….. 5 minutes passed, then called her AGAIN… 8 minutes passed.. I REALLY had to go, and she never came. So, with my numb legs, I pulled myself out of the bed, carefully dragged the IV machine on wheels with me to the bedside toilet, amazed that I was able to hold myself up. After I crawled back into bed, she finally came around as if she was avoiding me and said, "Ok, you went, now you can leave!" I looked at the clock and I still had about 3 hours so I said, confused, "Dr. Cardea wanted me walking around, and I still have numbness in my left leg from the epidural-plus, I have a few more hours on my stay so I'm in no rush!" She sighed loudly, looked at the clock on the wall, then at her watch and didn't say anything. I felt as if she was trying to get me out, so she would have one less person to take care of. I felt as if I was a bother to her.
I got up, walked around-left leg still numb, but I could walk on it carefully. I was frustrated with that nurse so I decided to leave 1.5 hours early. The hard part was that the hospital insists that you ride down to discharge in a (semi-unpadded) wheel chair, which was painful. I just had surgery on my behind, and they wanted me to sit on it for a bumpy ride downstairs?!
Finally at home, I took the Percocet prescription and rested. Around 9 pm, FINALLY, the numbness went away in my left leg-15 HOURS after the epidural was taken out.
January 13- 1 day after surgery:
Still feeling pain badly, incredibly tired, low appetite. Had pain in the epidural site, felt like an internal bruise. My lungs hurt, and felt cold, but didn't have problems breathing. I ate jell-o whenever I needed to take Percocet, as I knew it included nausea! And my hips hurt from constantly laying on them! Had a difficult time sleeping due to constant pressure on coccyx area.
January 19- 1 Week after surgery (Taken directly from journal, so excuse the lack of sentences)
January 19- 2 Weeks after surgery
January 30- 3 Weeks after surgery
May 29 - 4 1/2 Months after surgery
So, I still can't ride a bike as I'm having surgical pain, though less than what I was having in January. It feels like it's taking forever to go away, but when I think about the pain I had in January-4 months later, it really is less. But, I still have it. The back spinal pain has somewhat disappeared, but my lower back is sore quite a bit probably because I'm still not sitting straight down on my back-side, I still sit with my left leg tucked under me. If I do need to sit for long periods of time, I start to feel the dull pain that quickly becomes painful pressure in the tailbone area, as well as down my right leg (sciatic nerve pain) in about 10-15 minutes.
I expected to be further along at this point, but I hear that recovery for this certain type of surgery takes a real long time. I think most of my pain is nerve pain down the right side of my leg. I need to make an appointment with the doctor to seriously talk about this. I remember he told me that a year after surgery, 80% of people were feeling better, and 20% of people had nerve pain. I feel that I'm fitting into that 'nerve pain' category now, and it hasn't been a year. Hard chairs still hurt, I wiggle around a lot in my seat if I'm stuck in a meeting at work, shifting from side to side. Sitting for a long period of time hurts. Sleeping has gotten better, but I still sleep on the 'good' side (the left side) that my tailbone hasn't hurt.
My tailbone was shattered, and pressing to the right, that may be why I'm having nerve pain still, from the initial break. So, I sleep on my left side, with a pillow between my legs, and lately, more nights than not, I've been sleeping with a heating pad under my tailbone area. It feels good, but I'm not sure if it does anything to help. Long car rides are trouble to me, but mostly if I have to drive. If I'm a passenger on a long car ride, I at least can put the seat back, shift around when I need to, etc. But, when I'm driving, my right (painful side) leg, starts to get almost a pinching pain, I'm just pretty sure it's nerve pain, as it shoots down my right thigh.
At work I still sit on a coccyx cushion wedge, it does relieve some of the pressure, but still, even after 10-15 minutes, it wouldn't matter if I was sitting on the softest cloud in the world, I would still start to feel pain. The scar healed great, you really don't notice it at all! Overall, it was a good surgery, and as of now, I'm okay with the fact that I went through with it, as I know my tail-bone would have continued to hurt me, press into my nerves on my right side leg/hip and would have continued to become arthritic. I just hope that in another 7-8 months (man, that sounds like so far away) that I am feeling better. I'll update if anything changes!