Ally - Tanziblu@aol.com
Original posting 2002-09-01:
I'm so happy I found your web site before I had my surgery. It allowed me to see good and bad results before making my decision.
My tailbone started hurting in April, 2001, just as a slight nagging pain. Two months later it became an unbearable burning pain, but only when I had to sit. I went to my Family Med, Doctor in June 2001. My regular doctor wasn't there and I saw a resident.
Before doing an x-ray, he wanted to "push" on the area. I almost went through the roof. He said it was "movable" and he was sure it was fractured, but they'd do an x-ray to confirm it. I am friends with the technician who did the x-ray. He asked me if they told me they thought it was fractured and I said yes. He's not really allowed to tell me results, but he let me know in a round-about way that he could tell it was fractured too. (He's been doing x-rays for 30 years) The resident told me there was really nothing they could do for me except put me on Vioxx and check me again in one month. I also bought my donut pillow that same day.
One month later I returned to my doctor. He said there was a mistake and that the Radiologist Doctor read the x-ray the day after I had it done and found no fracture!
My doctor is very sympathetic and kind, but said he couldn't contradict what the Radiologist said. He decided to send me to the pain therapy department for trigger point injections. I don't want to scare anyone, but they hurt really bad. After about four injections and only a tiny bit of relief from the pain, they decided to put an I-Flow Pump in me. This is a tiny catheter that is guided to the tailbone area though very small incisions. The line is then run under your skin from your tailbone to just an inch or so above your buttocks. This is connected to a bulb of numbing medicine (about the size of an orange) which your wear around your waist in a fanny pack. When the pain gets bad, you open the bulb and the area is numbed. Only problem is that it makes your legs numb also. I had to go back to the clinic every 3-4 days to have the medicine bulb replaced and have the catheter site dressing changed. This was, as you can imagine, very inconvenient. They can only let it in a month as risk of infection is high after four weeks. They say this can sometime "break the cycle" of pain. It didn't.
My next treatment consisted of three months of Ultrastim and heat therapy with a physical therapist. It was basically nice during the treatment, (no pain from this procedure) but pain was only relieved by about 1/3 and that only lasted one to two days. They then bought me a TENS Unit. I found that electric feeling in such a delicate area more than I could stand, even on low settings. By this time, they seemed to think I was just going to have to give it another six months and maybe it would go away by itself. It didn't. After 15 months of severe pain, they FINALLY ordered an MRI. They found an incredibly hooked tailbone, a piece of "floating bone", and a small aracnoid cyst in my spinal membrane. A trip to a Neurologist calmed my fears about the cyst. He didn't think it was the cause of my problem but they will do an MRI in six months to make sure it didn't grow.
Now I finally got to see Dr. Parenti in Orthopaedics at Geisinger Medical Center. He said he was 99% sure he could fix this for me. He's the only doctor there who does this procedure, and he only does 3 or 4 a year. I had the great advantage of working with him for 13 years at an earlier date and trusted him completely. He took the time to show me the x-rays showing how deformed my tailbone was. That was the first time I saw the x-ray and in my mind it clinched the need for surgery and verified this pain was not "all in my head".
I checked into I&O Surgery on 19 August 2002. The surgery took about one hour, from 8:00 to 9:00, and I was recovered and ready to leave by 12:00 noon. My Mom drove me home. She has car seats in the front that lay all the way back. I was in NO PAIN when I left I&O because they inject the inside of you with lots of novacaine while you're under anesthesia. My insurance company would not pay for even one night stay for this procedure so the doctors make sure you are numb when you leave for the ride home. This glorious numbness lasted about 10 hours. Then the pain hit! He gave me strong painkillers, which helped, but didn't give me as much relief as I wish I could have had. The really unpleasant part is the stitches that pull every time you move. I stayed at my Mom's for a week so I wouldn't have to go up and down steps.
Now today, 28 August, I've had my sutures removed and feel MUCH better. Suture removal was not at all bad, but I did take my pain medications before going. The doctor said my incision healed very clean and looks great (no open spots). I do have to be careful for the next few weeks so I don't split it (which is unusual after a clean healing, but can happen). He pressed on the area which always sent me through the roof, and I could already tell a difference! Of course I'm still having some pain, but it's a different, surgical type of pain. He said my tailbone was really hooked and prominent and he's sure I'll feel much better now that it's gone.
Yesterday (September 02) I sat on a very soft couch for about 5 minutes, and again today for 5 minutes. To other people that might not sound like much, but to someone like us, it's a big accomplishment. I've had many people who prayed for my surgery and recovery and I give God the credit for my great progress. I also can walk up and down stairs, but I do it slowly and very carefully.
I had my tailbone removed 19 August 2002. One week ago I was able (for the first time in 18 months) to sit down in a restaurant without my donut pillow! It was a great accomplishment for me. I did change my position a few times, and had to sit with my leg under me occasionally, but I did it!
The place where the tailbone was does not hurt anymore, but the bone left behind that they had to file to a suitable new shape does still hurt. My oxycontin was just reduced from 40 mg twice a day to 30 mg. twice a day. Next month we will try 20 mg. I just saw my doctor last week and he said it is normal to have this pain and it can take 4 to 12 months to totally recover. He also said I may still have some sutures inside which have not yet totally dissolved. Whatever result I have on August 19, 2003 next year will be the final result.
So far, I still am happy I had the surgery, but the first ten days afterwards were really tough. I'm not saying that to scare people, but to help them prepare for help at home afterwards and to realize that it WILL get better.
Also, anyone having this surgery should be on stool softeners for about four days before surgery and continue afterwards as long as your doctors suggests. This is very important as the pain killers will constipate you and the last thing you want with stitches that close to your butt is constipation. I followed my doctor's advice and can say that the first BM was not anywhere near as bad as I thought it would be. Hope I haven't grossed anyone out with this. Just remember, knowledge is power.
Take care and Happy Trails to all,