I am a little over a month post surgery. I have been reading so many of your postings while I have been recovering. My husband has copied them off for me to read, as I have not felt like sitting at a computer. (Or sitting at anything) Although I still have a lot of bruising and stinging pain I feel like I'm lucky compared to some of you. I really feel for Moe, she seems to have numerous problems.
I finally feel like I can sit for a few minutes on my cut out pillow (I call it my butt pillow, it has a U shape cut out of the back). It may take me a few days to complete this writing. I am doing it in word and saving it, my husband says I can then copy it and paste it as the posting.
I don't really know everyone's story. I don't even know how much each one of you is willing to share of your story. This problem doesn't seem to be a problem the medical community has a handle on. I am wondering if each of us writes our own story maybe we as a group can find a common denominator and maybe a solution? I hope I don't bore anyone. I thought if we could tell how it started, how long it's gone on, Where does it hurt, what procedures you undertook to try and solve the problem, how it feels then, and now, Etc. Just "your story."
I am a 59-year-old retired female. In November of 2003 I had bunion surgery on both little toes. In January 2004 I had my right hip replaced. I was recovering nicely from the hip replacement. On April 19, 2004 I had the bunion pins removed from my little toes. On April 20, 2004, the next day, I sat down and it felt like my tailbone was slipping on marbles. It stung like a vice grip was pinching the area around the tailbone on the left side. It was really uncomfortable but I thought it would go away. After two days I realized I needed to go to my doctor and he would fix this. Was I wrong! Every week I was sent to another doctor or some treatment. It was a merry-go-round of doctors seeing me and scratching their heads and sending me to someone else. I was sent back to some of the same doctors 2-3 times. A lot of the doctors would tell me I have a lot of narrowing at the L4-L5-S1 spine area but that was a normal thing for people my age. They would totally disregard that as a reason for my problem. They were probably right, but I was desperate for an answer. To make a long story short I will list the doctors, medicines, and treatments I tried over the last two years.
Doctors: 2 Orthopedic surgeons, Neurologist, Gastroentrology, 2 Neurosurgeons, Vascular surgeon, 2 Gynecologist, General surgeon, Colon Rectal, Chiropractor, Acupuncturist.
Tests: Soft tissue MRI, Pelvic MRI, Bone scan, CT scan, Flexible Sigmoidoscopy, Blood flow test.
Pain Clinics: 4 Trigger Point tailbone steroid shot, 2 Epidural Caudal steroid shots, 4 inter-vaginal steroid shots (Sacrospinous ligament and Coccyges muscle), 1 lumbar Epidural Steroid shot.
Therapy: (19 sessions) Kegels, Stretching levator ani & obturator internus muscles, Tailbone manipulation (She stretched the tailbone to the right side and held it for 3 minutes), Ultrasound, Eastem (electrical shock).
Wrong Theories: Shingles, Pilonidal cyst.
Medicines: Methylprednisolome, Bextra, Nortriptylin, , Flexeril, Etodolac, Ultrace, Clonidine, Skelaxin, Lyrica, Cynbalta, Naproxem sodium.
On the pain scale of 1-10 my pain was a 2 if I was standing, a 3-5 if I were lying and an 7-9 if I were sitting. The pain was constant. It wears on you tremendously. It felt like I was sitting on a sharp knife. It felt like someone was pinching the area around the left side of the tailbone. If I sat forward my vaginal area felt like I was sitting on a deep bruise that was being pounded with a board. I could walk into a Doctors office and they would look at a healthy active woman. I was walking 3 miles a day on my treadmill. No one seemed to understand that sitting was miserable in my life. Unless you try and not sit for even a day you don't understand how detrimental it is.
Finally I was diagnosed with Coccydynia. I wanted a surgeon in the Omaha Nebraska Area because I live 30 miles out of town even though we live in Iowa. As many of you had said, "find a doctor who knows what he are doing". My Neurosurgeon sent me to Dr Mark Christensen a Colon Rectal specialist. He felt Dr Christensen would be the best person to do the surgery. Dr. Christensen said he had done 3 other coccygectomies. Two were because of cancer and the third because of deformity. He agreed to do the surgery but told me it might not be a cure. I went to the "Spine Center" in Omaha for a second opinion, and they agreed with Dr. Christensen. They felt Dr Christensen would be the right person to do the surgery. I highly recommend Dr Mark Christensen.
My surgery was on February 22 2006.I went to the hospital with much trepidation. I had learned as much as I could about the surgery, etc from "T bones", Doctors, etc, and prepared for the worst. I woke up after the operation with a modest amount of pain because of the medications. I was lying on my back and that surprised me. (I really dreaded the thought of lying on my side and stomach for weeks!) I could stand and walk ok. The painful part was the 2-3 seconds it takes you to go from lying to standing. The nurses laughed at the fact I wanted to eat my breakfast standing up. The operation was done in outpatient surgery but I was kept overnight to control the pain. I dreaded the ride home. The nurses timed my pain meds and gave me two Oxycodone and a morphine shot just before we left. We had borrowed a van. I lay in the back on quilts and pillows. There is no way I could have sat to get home. My Bichon, Angel greeted me with her tail wagging. I knew I was glad to be home.
I had no staples; Dr Christensen had used glue to close the incision. The incision was only about 2 inches long. (I swear they probably use super glue) He allowed me to remove the bandage and start showering after 48 hours. I was really surprised from what I had read in "t bones".
Days 2 thru 6 remained very painful and I continued to take my allotted amount of pain medicines. Sitting was nonexistent. I was able to lye on my back. Standing was fine; however bending over to retrieve something off the floor was tricky at first. The medications are very constipating. I was on Metamucil pills, milk of magnesia, drinking prune juice, etc. I had a raised toilet seat from my hip surgery and totally recommend it.
I purchased all the medical supplies I thought I might need before the surgery. Items that have come in handy for me are: 2 gel 10x15 ice packs, a round blow up inner tube. I found lying on each at different times gave me some relief.
My doctor did not seem to be overly concerned with infection. He did require me to wash for two days before the surgery with Hibbiclean soap. It's a special soap the hospital will give you. It is suppose to be really good at getting rid of germs. After I started showering I would spray the area with peroxide using an ear bulb plunger. My doctor had not told me to do this but I wanted to be sure and keep the site as sterilized.
Day 7 I awoke and could truly say I noticed a difference in the pain. I still cannot sit, even for a moment. It is no longer raging when I lye down. I think the incision pain is subsiding. The bone pain is still there as expected. My doctor switched me from Oxycodon to Vicoden.
Day 8 was even better. I still spend most of my day lying on the couch watching TV. My husband, Mike, made me a day bed on our couch using a very thick quilt as a mattress. I can get up and do a little cooking but I've told my husband dusting and vacuuming will probably be out for at least a couple of years. (Ha) I can spend a few moments at the computer by standing up but that becomes very uncomfortable real soon. If the prune juice would just work I think I would feel much better.
Day 9-13 the incision pain is letting up day by day. I still cannot sit. The bone pain is still intense. I have a very intense stinging sensation especially on the left side. It feels like a bunch of bumblebees have stung the skin in about a 3" radius around the incision site. I am trying hydrocortisone cream, but to no avail yet.
Day 14 I must be having a bad day. The deep bone pain seems more intense. The area feels like it is very bruised as I guess it is. I am growing weary of spending my days either standing or lying on the couch. It's amazing how much is life is done sitting. This is going to be a long two months. My doctor tells me it takes bone 8 weeks to heal. It simply hurts too much to sit.
Day 16, I can sit for about 5 seconds as long as I lean forward a lot. It is starting to feel better day by day.
Day 22, I can sit for a few minutes on my butt pillows as long as I lean forward.
Day 26, I really feel a difference now. I still have the stinging and it just won't go away. I can now sit at the computer for about 30 minutes on my butt pillows and I can sit up to eat. What a joy that is. I'm really getting good at eating soup lying down, but don't recommend it to anyone.
Day 35, I have this typed up now and am going to post it. I can sit for about an hour if I sit on my butt pillow and lean slightly forward. The pain grows stronger the longer I sit so I still baby it a lot. I have started walking on my treadmill for 30 minutes although I have cut my speed down to 2.5 and the incline down a bit. I keep hoping another month will show me more relief and healing. I would love to read some of your stories if you are so inclined.
Your Iowa T-Bone Friend