I am a 43 year old healthy slim female & had suffered idiopathic coccydynia for the last 3 years, no falls, fractures or accidents caused this excruciating pain in my rear, the only probable cause maybe due to change in profession which involves sitting most of the day (still working at same job). I could feel my coccyx sort of rock hard bump which was the coccyx bone – this was extremely painful to the touch & sitting on it….ugh!! I feel for anyone suffering from this painful disorder – not only have I been embarrassed but also humiliated by people who don’t understand the extreme of this pain. I have even been told that I’m making this up!!This condition has been dismissed and belittled by many doctors that I have seen within a 300 mile radius including: Neurologist, Rheumatologist, Chiropractor, Gastroenterologist, I even had a colonoscopy done, and I have also seen an Orthopedic Surgeon that specializes in the spine & joint who couldn’t help me, didn’t even offer me a steroid injection. Finding a Dr has been very difficult with this pain since I live in a rural town in Southeast NM travelling has been difficult. I have used this and other websites to find a Dr that specializes in this field, but found them to be in major cities which would mean flying and numerous trips, to be honest I felt uncertain where to go and was skeptical at the same time. In the mean time I used the coccyx cushions not the doughnut but the cut-off kind and has really helped while sitting but getting up…no! And of course the problem is still there, even tried pain meds & acupuncture and used heating a pad every night.

I got to the point where I gave up after seeing so many doctors, I told my husband that’s it we have to live with this (BTW the whole family also suffers in a different way). He doesn’t want to see me suffer like this and researches a Dr in India and also researched one in England since I am from there but then again the thought of sitting involved with travelling I’m again discouraged, I also have to consider my children. In the mean time he had also mentioned this to a good friend of his who is an Oncologist who with the help of other physicians over time referred me this year to Dr Mark Scioli, an Orthopedic Surgeon in Lubbock TX, who specializes in spine, lower spine and other joints. My first appointment with Dr Scioli was in May of this year, I took all my past tests I had done: MRI, CT, bone scan, and x-rays all these results on a disk as well as paper which he reviewed with me explaining the details of the coccyx & region the disorder as well as the examination and wow immediately I was amazed by his knowledge, he gave me options for the first time I felt I was being heard. Since I hadn’t been given the shot he wanted to see how the pain would react with the steroid injection and tells me last resort a coccygectomy which he has & does perform this operation. Straight away my pain was gone, he informs me the max given per year and the approximate duration this steroid injection could last, also discussed the coccygectomy, success rate from past experiences etc, . Shot wore off within 3 days now pain back to the usual. Fast forward had one more visit with Dr Scioli & seriously thinking about coccygectomy but scared and worried of procedure, recovery and outcome he assures me of probability and success from his experience and risks not pushing me in any way to make sudden decisions we discussed the coccygectomy, he states I am a good candidate since all else has failed and I didn’t want another steroid injection at this point, I have no health issues and do not take any meds. He addressed another concern I had that in other countries patients have stayed in the hospital at least 1 day and here in the US it is done on an outpatient plus I live 120 miles away from the hospital and especially from him the Doctor.

Aug 3, I arrived for my coccygectomy, two of the nurses had a hard time pronouncing “coccygectomy” had to help the out, hah!. Again met with Dr Scioli & Anesthesiologist discussed concerns & procedure prior to surgery. Procedure done as outpatient after surgery woke up do not feel any pain because my butt is numb, nurse assisted in recovery and had a recliner ready for me I asked her “I had a my tailbone removed how do you expect me to sit?” She puts pillows & tries her best to assist me luckily because butt is numb I am able to sit in the recliner. Later, I am moving very slow and very weak, was able to go the restroom on my own with nurse supervision. Dr mentioned details with husband & states no complications, discharged later in the evening & rode home 2 hours was able to sit in the passenger seat on my coccyx cushion since butt numb and I had no pain just really weak and exhausted. Got home took pain meds doctor prescribed & got into bed very slowly on my side & that’s how I slept, I am extremely exhausted and weak. I couldn’t move from one side to the other, was able to sleep on my back for the first time in 3 years, I slept well. Next day showered and still moving very slow, by early afternoon numbness wearing off and started feeling the pain, I am weak & tired. Day 3 pain worse can’t sit too long still using coccyx cushion as advised by doctor & still taking prescribed pain meds, day 4 and 5 still same pain but I am getting a little stronger each day. Day 6 incision leaking fluid with slight blood, dressing needs to be changed, have appointment with doctor next day. Day 7 can’t sit in any of my vehicles ended up lying on my side in the back seat for a 120 miles drive to the doctor’s office to have dressing changed. Arrived at office and stood in waiting room – still remember I would stand often to avoid the coccydynia prior to my surgery. Had dressing changed was heavily saturated, and rode home same position.

Week 2 – worst pain ever!! Still taking prescribed meds a directed, but beginning to wonder will this pain ever go away?? I had times when I thought to myself what have I done!! That’s how bad the pain was. Shifting from one side to the other while lying down has been really tough, I used both of my heels, arms and elbows to hold my weight slowly elevated my butt and turned very slowly onto the other side, this is tiring when you’re weak.

Week 3 – getting stronger and better also able to sit slowly on my coccyx cushion, noticed my back would arch a little and pain has lessened from week 2. – yay! Also having sutures out – double yay!!. Same drive back and forth to doctor’s office this time I sat on my cushion, stood in waiting room. As nurse practitioner is removing the sutures I get very dizzy and with assistance was gently seated, got all the sutures removed and met with Dr Scioli he reviews my before and after X-rays, and after examination he states incision healing very well he tells me and very little scarring which will heal with time, had me do certain stretching movements I felt comfortable but not able to bend down very far yet, BTW this would hurt prior to surgery.

Week 4 – things looking positive less pain with each day taking less pain meds and getting stronger, still feel tired though. Had follow up 8 weeks after surgery appointment and everything is finally looking good, and I am feeling positive with the outcome now. I am released from medical leave and the following week went back to work. I have only used my cushion for the first few days, by the end of the week I no longer needed it!!

I am 3 months post surgery and feel amazing 80% pain free, I can sit like any normal person, get in and out of a car like any normal person, the bumps and dips in the roads no longer bother me when driving, and I haven’t complained about my coccyx hurting. I truly thank my hero Dr Mark Scioli, despite his disability he helps everyone he takes special time with each patient that’s why he’s always behind on time, but you know what the wait has been well worth it, and also from talking to other patients in the waiting room he seems to be very popular. Dr Scioli has improved the quality of my life by far I can’t stop bragging and won’t stop bragging how good I feel! Anyone who is suffering from coccydynia and lives in the West Texas region should consider seeing Dr Scioli, I highly recommend him. I hope my story helps, and don’t give up.

Please take the time & visit Dr Scioli’s Web: http://www.greatbones.com
Email: MScioli@greatbones.com

Kayla

2 Comments

  1. Brenda on March 23, 2012 at 11:48 am

    Im so happy to hear this has worked out for you..unfortunatly im in a total situtuation..and its puzzles me to know each story i hear r people from the US..im from canada and since may 2011..my whole quality of life was taken from me including my careers i had choosen in my life..im awaiting yet another mayjor surgery due to all this..alls i can say is u r so lucky im 38 and am way to young to be going threw the horriflying life i have been experienced since i first agreed to this procedure..i was not aware of any of the risks,infections etc alls i was told was they preform these surgery 2 to 3 times a months so at that point in my life enduring the pain i was in felt at ease..since then my life has become a living night mare..i so wish i was in ur shoes at this present time…



  2. Sue Brewer on May 22, 2013 at 4:41 am

    Would love to know how Kayla is doing today since the surgery?



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