Started after miscarriage. Seen 18 doctors, finally had coccyx removed

Cynthia -  harn@sbcglobal.net

Original posting 1999-06-01

1997 & 1998 - During a pregnancy that miscarried, I began having lower back pains. I had a few minor slips in my life landing on my tush, but never a hard fall that I could attribute to the pain. After the miscarriage I started seeing NUMEROUS doctors. I was sent chasing around to 18 doctors by my worthless insurance company and the lousy doctors they referred me to. I am now almost 43 years old.

• the first orthopedic I went to was with the Texas Back Institute and was a total joke. My lousy insurance company first refused to send me there, then finally agreed. It is supposedly the "best" in town. It's definitely not.
• TBI referred me to a neurosurgeon. My insurance company (United Health Care at the time) refused to let me go and sent me to a neurosurgeon clear across town in a poor suburb, who supposedly had the same "spinal specialist" qualifications as the recommended surgeon. (I discovered that US insurance companies hire people that have no clue what specialties are and they tell you anything to get you off the phone.)
• An MRI technician blamed the coccyx pain on the ob-gyn that did a D&C. An ortho told me that the technician didn't know anatomy and the D&C could not have damaged my coccyx.
• I saw a total of three chiropractors, one which was outstanding! She relieved the pain by in internal adjustment which of course was not covered by my lousy insurance company. I could literally hear the coccyx snap back in place. The relief would last from 1 hour to two weeks. I later learned to do the manipulation, somehow, sort of, by myself, but it would last even less time than doctor's adjustment
• my internist said he could not help me, but referred me to a third orthopedic surgeon
• a total of three orthopedic surgeons did x-rays, an MRI and a multitude of spinal steroid and analgesic injections. They each said their technique was the best. Injections worked a couple of hours to a week
• a multitude of pain management doctors
• a wonderful physical therapist noticed that my sacroiliac must be mobilized frequently as apparently since some fall, my muscles have overcompensated and my leg joint gets out of whack. That was a pain, that I thought was related, but must still be adjusted weekly
• three neurosurgeons - one who noted the psuedomeningocele near my spine and suggested a spinal tap to see if that relieved the pain. He wanted to install a shunt in my spine to release the spinal fluid buildup which he thought was causing the pain. I'm glad I refused and wanted to fix the problem, not patch it.
• in November 1998, a good neurosurgeon did another MRI and repaired the psuedomeningocele. However, it did not relieve ANY pain. It took months to recover from spinal surgery and I gained weight
• a pain management doctor, Dr. Jerry Holubec, tried several coccyx nerve blocks. They would also just last a day
• I insisted that Dr. Mignucci, the good neurosurgeon, remove the coccyx. After all the lousy doctors, I trusted him, although he had only removed 2 other coccyx
• as a pre- and post- surgery treatment, Dr. Jerry Holubec prescribed Amantadine and Neurontin. Neurontin is an epilepsy drug that did something to the crazy nerve firings in the coccyx. It has been a God-send both before and after surgery
• On April 20, 1999, I had my coccyx removed. Dr. Mignucci told me it was partially disconnected and that when they touched it, it crumbled, it had been so damaged. The pathology report showed nothing

I am glad I had the surgery, but it still hurts. The Neurontin is a wonderful help, as is my tush cush. However, I am now pregnant and can't take the Neurontin. I'm also concerned about carrying the weight of a pregnancy on my lower back. It hurts, but it is better than it was last year at this time!

This is what has helped me:

• this web site to know I am not alone and that many doctors are dopes and have no clue about this problem! Nor, do they search out a specialist to REALLY help their patient!
• my two tush cushes!
• Neurontin
• Tilting my car seat as far forward as possible ... takes the strain out of leaning on the coccyx or the nerves remaining in that area
• Laying down in the evenings and becoming a couch potato
• Walking & swimming
• When flying - I always carry my tush cush. That's the worst pain imaginable. I also tilt my body forward and lay my head on the seat in front of me, or the snack table

I truly hope that we uncover some miracle soon for coccyx pain! Until then, I wish I could still take Neurontin during pregnancy. And I will continue hauling around my tush cush!

Update 2002-05-12

Cynthia produced twins, and was rather busy for a couple of years. This is her latest update:

I see the osteopath every two weeks and she crunches my sacrum back in place. Seems that all the exercises I do ... still do not strengthen the muscles and ligaments strong enough to hold the sacrum in place. Too many years of it being out of place has trained the muscles to snap back in the "let's lock up Cynthia's sacrum" position.

But I am definitely improving! I started out on 20 lbs on the Back Extension machine and I'm up to 95 lbs. The roman chair is also a good back and ab strengthening machine. Still taking Neurontin, Pamelor and Vioxx daily.

I'm very happy I had my coccyx removed in 1999!