Nervous to have surgery, had it, but pain worse

Will, USA - willmbond818@gmail.com

Posted 2020-12-13

I hurt my tailbone in September of 2016, while riding my bicycle to the coffee shop. An oncoming car got purposefully close, forcing me to quickly turn onto a curb. When I did so the bike saddle forcefully slammed against my tailbone. I cussed out the car as it drove off but didn't think too much of it. I went into the coffee shop and sat down, feeling a weird pressure in my butt but not terrible pain. It was bothersome enough that I left early, biking back home. At home I went through my normal yoga routine. When trying the boat pose, that forces one to lean back, I had a lot of discomfort and had to quit early. The next morning I felt it was really difficult to have a bowel movement. It felt like I was pushing against a locked door. I noticed on my runs that I felt a very uncomfortable feeling in my rectum. It felt as if stool was impacted and bouncing up and down. I couldn't even pass gas to relieve the comfort.

This continued on for several weeks. I realized I must have injured my tailbone as I was tender to push there. I had done this before, and it seemed to heal after a month or so. Driving long distances to my girlfriend's cross country meets was especially uncomfortable. It was never unbearable pain, just a sort of pressure and dull discomfort. The more cushioned the chair, the more discomfort I felt. The continued bowel symptoms were the most distressing. I still for the most part went on with my life. Running was hit or miss, sometimes my blocked bowels bothered me and other times they didn't. I wasn't afraid to sit on a couch or get dropped a few feet while rock climbing. I found that osteopathic treatments to my sacrum seems to help the passage of my bowels, but usually only temporarily. I had one of my classmates treat me regularly, he got pretty annoyed after my asking repeatedly.

This went on for the course of a year before I saw a doctor for it. X rays were read as normal. The radiology tech initially took x rays of my lumbar spine forcing me to come back again for the real thing. I then reached out to one of my osteopathic professors for treatments. He tried what are called "indirect" treatments which seemed to help temporarily. I remember once going home and thinking he cured it, but it quickly came back after a good night of laying back on the couch. As I moved to the clinical rotation part of my med school, my problems just got worse. My general surgery rotation seemed to be an inflection point. After that month I seemed to have a drastic increase in bowel problems. I was never able to run in the afternoon. After a good nights rest my pelvic floor seemed to relax some, and I wouldn't have the impacted bowel feeling as much on runs. But after a day at work, particularly as a third year med student, I would clench up in that area throughout the day. It seemed whenever I had bowel problems my pelvis would compensate by rotating out of alignment, which caused more problems.

My next step was reaching out to a pelvic floor physical therapist. On my first visit, my therapist tried the internal manipulation, however my pelvic floor was so tight that she could hardly insert her finger. After several visits I had improved some, and at that point she was able to palpate the coccyx. To my surprise she said there wasn't much that needed manipulation, as it moved freely, perhaps too easily. I thought this was good news at first. I had some bowel relief with these sessions. She recommended trying a therawand between visits to stay relaxed in that area. I did that pretty religiously, just about every day, and that seemed to things little better. My big issue was that when I could get my pelvic floor relaxed the pain in my tailbone got worse. It felt more unstable, almost like a loose part. It seemed I could never find a balance between wanting to avoid that unstable feeling and having a loose enough pelvic floor to have a regular bowel movement. After a while the therawand didn't seem to work as well. It seemed like I would always have tightness in the area as long as I had the unstable coccyx.

My last two years of med school seemed really hard at the time due to all of this. Looking back I could still do some normal things, like sit in a restaurant, go to NBA games, sit on a couch if sitting forward, paddle board, sit on the ground, sit outside on a flat rock. I was most upset about not being able to bike. I also couldn't do any swimming. The buoyancy of water seemed to make my tailbone float by itself in my body, a very uncomfortable feeling. There are times I think that it is just going to detach from my spinal cord altogether. Running wasn't the same, as I so commonly felt that feeling like I had impacted stool bouncing up and down with every stride. This didn't happen every time, but I became so nervous that it would that I cut back on running drastically.

I travelled to Europe with my girlfriend after graduation. On our second week, while in the Swiss Alps, I slipped on some snow landing directly on my ass. Again, I never felt horrible pain with this. But the rest of the trip was ruined for me. I couldn't pass my bowels. My already loose tailbone felt looser. This was a second inflection point in the wrong direction for me. Upon returning to the US I wanted to have one more appointment with my therapist and my osteopathic doctor before moving to Albuquerque for residency. My therapist was booked. When I saw the osteopath he said my tailbone was moving freely and there wasn't much to do. My first few weeks in Albuquerque were hard. I felt excited to have moved out west, I wanted to go hiking just about every day. I had continued discomfort in my pelvis since the fall, and all of this seemed less fun because of that. One good development was that I found a special bike saddle that enabled me to start biking again. This saddle had me leaning far forward and it had crease through the middle so no part of my weight was directly on my tailbone. I am only able to ride on smooth roads, and only for certain distance (about 5 miles.) I of course overdo it sometimes, and pay a price.

Throughout my first 1.5 years of residency I have been on pretty steady decline. The bowel symptoms are about the same, perhaps a little worse. The pain is getting pretty unbearable. I had a ganglion impar block, the relief wasn't very long lasting. I now cannot sit anywhere without a gel cushion with the middle cut out (I use the purple seat cushion, which has been pretty helpful.) This includes flat surfaces that I was previously able to sit on while leaning forward. If I dare sit on any sort of cushion I will have discomfort for a couple of days, which usually manifests by the rectal obstruction and pelvis malalignment. I have become overly sensitive to any light touch of my butt area. I find myself constantly looking around me to ensure no-one brushes against it. I can't wear most of my clothes, partly because I've gained some weight with not being able to regularly exercise (and residency), and partly because any tight fit closing makes my tailbone feels as if it is being crushed further inside me. Hiking was something I could count on doing without much pain, in fact it usually helped it. Now I am finding walking downhill very uncomfortable. I went paddle-boarding while on vacation and every small wave that hit the board caused severe discomfort. Where I was in med school, when I could sit at a restaurant or at a game, doesn't seem so bad now.

I'm not really sure what is causing my symptoms to seemingly spiral out of control; if it a result of the fall I had, introducing cycling back into my life, the stress of residency wearing down on me, or just chronic inflammation finally starting to cause some degeneration. It has now caused me depression and anxiety, weight gain (I've even had mild hypertension on my last few checks,) relationship problems. I decline most offers from friends about fun things to try, like skiing, rafting, mountain biking (of course.) Just about everyone knows about my tailbone as I carry around my seat like a briefcase through the hospital. Everyone is supportive, with my girlfriend Claudia being the most so. She schedules my appointments for me (since I often don't do them myself as I think they are pointless.) She introduced me to coccyx.org and made lists of specialists I could reach out too. I am constantly irritable and she still tries to help me.

Yesterday I had a phone appointment with a neurosurgeon Dr. Schrot in Sacramento (see Doctors and specialists in the USA, California)(No one in NM does coccygectomies I guess.) He and some of the testimonials on coccyx.org gave me some hope that I could get some relief from this. I am nervous to have surgery, all of the doctors I've seen for this (none experts,) have told me surgery is not a viable option due to the lack of efficacy and high complication rate. I am nervous about the chance of infection (10-30%) which would probably require an additional wash-out operation, and prolong healing. I'm nervous about it not working and having nothing else to turn to. I am writing this from night-call shift at the hospital, trying to decide what to do. It is hard to fully comprehend how much this has affected my life, as this has been my new normal for 4 years. I think the clear choice after putting all of this together is to go forward with it. Thanks for everyone who has read this, and I hope to give good news after my operation.

Update, 2021-07-11

I am now 9 days post-op from a total coccygectomy. I flew from Albuquerque to Sacramento to have this done by Dr. Schrot, a neurosurgeon practising with the Sutter Health group. Immediately following the surgery I was notified there was an area of raw skin just underneath where the incision was made, which may lead to an increased risk of infection. For this reason he kept me overnight in the hospital to receive IV antibiotics and had me speak with a wound care nurse the following day. I did not know I had this area of tenuous skin and I am still unsure why, however I likely would have felt it if I wasn't so avoidant of touching the area due to the hypersensitivity I was having. For this reason I had to be very careful with wound care. I covered the incision and the excoriated lesion separately. This of course added a layer of stress to what I already had going in. The wound has seemed to progress well and that area of raw skin has resolved with topical zinc oxide, however I will not know I am in the clear from an infection until 30 days post op.

My surgery otherwise went well. He told me I had a fused first coccyx segment and a sharp forward angulation 1st to 2nd joint (otherwise known as a type 3 coccyx.) He decided to remove the first segment of coccyx as it remained prominent and because I have a thin habitus. I am hopeful that because there were some anatomical and structural abnormalities with the coccyx that the procedure will be successful with helping my pain in the long term.

Their peri-operative pain control seemed effective. The anesthesiologist performed a bilateral erector spinae block and the ganglion impar was injected with anesthetic following the removal by the surgeon. The first 2-3 days were difficult. I could feel I had significant inflammation in the sacral region. After the first couple of days my pain was well controlled, especially with laying on my side. The most pain I had after that was during the night when I inevitably rolled onto my back. I have been able to get away with just ibuprofen and Tylenol as well as gabapentin I had previously been taking. I was able to do some light walking and stand for up to an hour after about 3 days. It is hard for me to tell if the pain is different from what I had before. Right now it feels like a large bruise in the same general location, however I am less overly sensitive to light touch of the area. I just completed my first of two connecting flights back home. I sat on the wedge cushion I've previously used while driving. Overall this was tolerable however when I stood up after the 2 hour flight I did feel a significant tightness and pressure feeling that felt similar to when I would take long drives without a cushion (last tried this a couple of years ago.)

Unfortunately I have not noticed an immediate relief in my issues with defecation. Since my injury I have had issues with emptying my bowels, reduced stool width and associated pubic and pelvic misalignment. I have attributed this to pelvic spasm associated with the coccyx pain. Part of me was hopeful that I would notice an immediate difference as I did have a sharply forward angulation to my coccyx that appeared to be obstructing my bowel on imaging. Being more realistic, however, I think it will take time to know if this was affected. I did just have my pelvic floor operated on, after all. Being mostly bedbound though has had me worrying more than what is healthy. I am hopeful that not having the source of the pain will help my pelvic floor relax, however if this is not the case I have further options down the road such as further pelvic PT/botox injections.

Update, 2021-08-30

I unfortunately have had a difficult recovery to this point. It seemed I was making slow but steady progress for the first couple of weeks post-op, but since that time I have stopped improving and at times have felt worse. I still have quite a bit of tension in my pelvic floor muscles and glutes, which have caused pulling-type pain and continued issues defecating. I imagine the tension cannot be good for my internal scar healing. I still cannot sit down, even on a wedge cushion, and cannot lay down flat on my back. I am trying to walk about a mile a day but sometimes I have to turn around early due to discomfort.

I attempted to return to work at the 1 month point but was forced to take more leave after a few days. I am on a work-from-home basis currently. At my follow up visit over zoom Dr. Schrot indicated that this is part of the normal healing process, but it is hard not to feel discouraged. I have not improved now for several weeks and remain quite a bit worse than where I was prior to surgery.

Update, 2022-01-02

I am now 6 months post-op and in a difficult spot. The surgery appears to have been a mistake, something I will likely regret for the rest of my life. I've essentially replaced a chronic nuisance with chronic pain. My tailbone pain forced me to modify my life quite a bit, but I was still able to participate in activities that made me happy, mainly running, hiking, and cycling. I am now unable to run and cycle at all, and given my stagnant progress to this point, I am having trouble envisioning a future where I am able to. I was generally pain-free sitting on the cutout cushions pre-surgery, but now am unable to do this for any extended period of time. I am in my last year of residency and signed on to be an attending physician starting in the summer, and I would give all of that up just to feel normal again, or even back to where I was pre-surgery. I am questioning whether or not I will even be able to physically do the job.

I have found myself wishing I had some sort of complication from the surgery, just so there would be hope that if I corrected that I could feel better. I am seeing a colorectal surgeon next month to see if my problem is more related to the pelvic floor muscles, or if I developed a hernia at the surgical site. I can't help feeling pessimistic about that given all of the failed treatments I've had to this point.

Most of the testimonials on this site from patients who underwent coccygectomy are positive. I am sharing my experience not as a way to dissuade from having the procedure, but to give an alternative outcome to most on this site. I never read anywhere where the surgery could worsen pain, and this is something I wish I knew prior to surgery. If I could offer any advice it would be to have the full workup (including proof of coccyx hypermobility,) and try all conservative treatments first.

Update, 2023-03-26

I have had some improvement since my last update. Physical therapy has been helpful. I did see a colorectal surgeon who was not concerned for coccygeal hernia. Unfortunately I am still worse off than prior to the surgery. I cannot tolerate high impact activities such as running or any quick movements, and have mostly adjusted to standing-only throughout my day.

I do feel like my day-to-day pain has improved overall and am hopeful with more stretching/PT I will see more improvement.