Scared about surgery, but nothing left to try - Live in Northern Virginia

LH - Lhemailme@aim.com

Posted 2008-05-11

Thank you for this wonderful website. I have been reading the stories here for years and have written to several people and decided it was time to post my story.

I have tried every treatment known to man other than removal, I will start each paragraph with the treatment that I tried, so if you want to know how that was, I'm happy to provide some information. I live in Northern Virginia and almost all the treatments for pain relief, were done at Capitol Spine and Pain Center.

I would appreciate any information that anyone has to offer. Please email me at Lhemailme@aim.com. And if I can answer any questions about the treatments that I've tried, please feel free to ask.

Question - Does anyone else have pain not only directly over the coccyx but deep in the cheek of the buttocks and down the back of the thigh? If I sit too long it feels like the back of my thighs are burning. Anyone else feel that?

Pain - Where did it come from? I started having tailbone pain in 2002 after riding my motorcycle. No crash, just riding.

Treatment One - Cortisone Injection without x-ray guidance Doctors said to live with it, it takes about a year or two to heal. They did one cortisone injection, just by feel (no x-ray guidance) and it didn't help. So I waited, and waited. Well, after a year and half I actually started to feel better, or so I thought. I was able to jog again, exercise and even though I was still sitting on the cushion, I thought it was more out of fear. I got rid of my cruiser style bike, no leaning on the tailbone for me, and I got a bike with a forward lean. Three rides later, the pain was back with a vengeance. This time even sitting with the cushion hurt like he**.

Treatment Two - Cortison injection with fluoroscope So in May 2006, still in pain, I went to a pain center. They did a cortisone injection with fluoroscope into the coccyx joint and surrounding ligaments. No help.

Treatment Three - Ganglion Impar Block and some sweet relief Next they tried the ganglion impar block and WOW, I felt better. I returned and had one more ganglion and now I felt even better. For the first time in years I was sitting WITHOUT THE CUSHION. I went out to dinner. I went to a movie. I was THRILLED. I know that you guys know what I mean. A simple dinner out and movie can be such a happy event. To go from eating standing up and laying in the back seat, while my hubby drove. Oh Thank You Lord.

Oh No, A Car Wreck August 2006 I get rear ended in a car accident. The lady hit me so hard that she drove me into the car ahead of me. I could hear her coming, that skidding sound is something we all know. So I held that brake hard and took the force straight up the leg with impact. I banged my head on the back of the seat, was dizzy and confused. But you know, all I was worried about was my tailbone. And I'm sure you all know what I mean.

Internal Manipulation of the coccyx A few days later the tailbone pain was back again. Back to the pain center I went. This time I saw a lady, the doctor's assistant and she said that she could check the tailbone and if it was out of place, she knew how to put it back. Well having read this website for years and knowing how helpful that could be, I couldn't wait to try it. Okay, it was painful, I will not kid you. But I left with hope and it felt better. She did say that the ligaments felt loose, she didn't know how long it would stay in place. She said it felt like it was a bit twisted and pointing towards the right. Well, it didn't hold in place for long and I went back and had the manipulation several more times.

Another Ganglion Impar Block It helps with horrible pain directly over coccyx, takes away that dreadful pain when going from sitting to standing, but it does NOT help the pain that shoots into the right side of my buttocks.

Physical Therapy By now my hips are sore, maybe from sitting crooked, maybe from the car accident, don't really know. Four sessions of physical therapy trying to stretch and strengthen and the coccyx pain is back with a vengeance again.

Internal manipulation and another Ganglion Impar Block

Prolotherapy to strengthen ligaments Insurance will not pay, it's $600 a session but I will try anything, money means nothing. It's painful, it inflames the area. I think it may be helping with the pain on the right, but the tailbone pain is back again.

Another Ganglion Impar Block Coccyx pain is better, but pain on right returns.

Dorsal Branch Block for pain on right I feel like my right side is burning, down the butt but not into the leg at this point. The doctor numbs all the nerves that travel to the right and it's great. I'm so numb leaving that I'm dragging my right leg, but I'm happy. I'm ready to just get a cane and stay numb forever.

Now I go and see a doctor about removal, he's listed on this website, he's Johns Hopkins, I'm hopeful. He does a rectal exam, moves the coccyx and it doesn't hurt. Don't know why because internal manipulation of it hurt, and there is an area that the lady who manipulates it calls a "bony ridge" that hurts like the devil. Maybe it doesn't hurt because of the recent ganglion block. He presses on ligaments and they hurt. He says that the pudendal nerve is under the ligaments, so he thinks it could be Pudendal nerve entrapment, he says come back for a pudendal nerve block. I don't have pelvic pain, don't have all the symptoms, so he says he's not really sure what it is, the nerve block would be a good test. I go back again for the nerve block. Once again I wait 4 hours to see him, and then he says he doesn't have time to do the block and since he is going to retire soon, he wants to just go ahead with surgery for nerve entrapment without the block first or any other tests. I look up the surgery on the internet, it's major, I don't do it without tests.

Radiofrequency of nerves that lead to right side Since the dorsal branch block helped the pain on the right, the pain center says a more permanent fix would be to burn those nerves. They burn 6 nerves. When the numbing wears off, the pain is awful. Not only do I have the pain on my right side, but the coccyx pain is back again.

Epidural and another Ganglion Impar block On my MRI, other than the coccyx being subluxed, I have a mild disc herniation at L3-L4 and a bulging disc below. Could the pain on my right be coming from a disc? I have a few epidurals, again no help.

Now the pain is not only on my right side, the back of my right thigh feels like it's on fire when I sit. And then my left thigh starts to burn. I'm in a panic. I've been leaning on my left side to sit for almost two years. Now it's burning, there is nothing left to lean on.

Go to an Orthopaedic spine specialist, recommended to me This doctor was the rudest doctor that I've ever been to. He looks at my MRI, says I can't help you. He says the pain is not from the discs in my back. I ask about the SI joint, which was suggested as a potential source of the right side pain by the pain doctor. He says it's not that. He says it could all be coming from the coccyx so just go back to the pain center. I tell him that I'm getting worse, can't he suggest anyone that could help me and he says no.

Chiropractor manipulations for SI joint and SI Joint Injection After two visits to the chiropractor the coccyx pain is back and it's awful. Don't know if manipulations or injection are helping because the coccyx hurts to much to know.

Deep Tissue Massage for Trigger Point Pain Chiropractor says that I have some lumps in the glut muscle that may be adding to the pain on the right. They are knots in the muscle that need to be broken up. I go through a half hour of painful pressing on those knots by a massage therapist and my butt turns purple with bruises and it swells over the coccyx area.

Saw a doctor for removal listed on this website Doctor examines all areas looking for other sources of the pain. Checks the sitting bones, no pain. He feels it is not the SI joint. He pressed the tip of the coccyx (from outside the body), it hurts. He looks at the MRI, the bone is subluxed (out of place) and he sees arthritis in the joint. He says it needs to come out. He says that the pain down my legs and on my right side are referred pain. He says think of your mouth when you have a bad tooth and the whole mouth hurts.

Well there you have it. If you are still reading, thank you.

What is coccydynia? | Investigation and diagnosis | Treatment | Coping with coccyx pain | Find a doctor or specialist

Medical papers | Personal experiences | Links to other sites | Support groups | Site map