Pain after 2 coccygectomies

Cara -

Original posting, 2004-01-18:

I just wanted to share my ongoing story with everybody. May 27th, 2003 I went to an amusement park and went on the old type "mouse" roller coaster. My husband and I were laughing so hard when we got off because it was such a rough ride. Well, then it hit me. I was in so much pain, especially after a night of sleep. I woke up and couldn't move. After waiting it out for a couple of days, I went to see a chiropractor. I didn't know this could happen, but I had a rib out of place and my entire back was out of alignment. I went back for almost a month, and my back felt great, but it did nothing for my tailbone. On July 30th, I went to see my GP and he did some x-rays. He saw a crack in my tailbone and said it had broken. He prescribed me Mobic to help, which did nothing.

A few years prior, I went through a similar rat-race trying to find out what was causing me a terrible pain, and ended up with a hysterectomy. After 2 hospitals, about 15 doctors, I was diagnosed with endometriosis, another pain that most doctors look at you like you are making it up. I found a wonderful doctor, who upon my first visit, told me to NEVER let any doctor tell you a pain is in your head. So, after feeling he saved my life, I called him up and asked if he knew of any doctors he could refer me to. So the chase started. I called the first one he suggested, as soon as they heard tailbone, they said no, and referred me on, and that went on for about 5-6 doctors before I ended up where I started.

I did find one locally, he put me on Vioxx after a series of x-rays, then a cortisone injection, then an MRI, then more medications. After none of that helped at all, he recommended surgery, but didn't know of any doctors locally in Missouri that did the surgery. So I came to this site. Wow, what a wonderful sight. The closest doctor to me was Dr. Michael Wright (see list of doctors and other specialists). I called him to set up an appointment and talked with Misty, who wrote of her experience on this site, and set up an appointment. He told me my tailbone was bent at 90 degrees, but then went back up almost like a J shape back in towards me. He told me he would do the surgery, but recommended a doctor that he thought to be closer to me. I met with him last Friday, and I have to say, he was no help. I felt he thought I was lying from the minute I walked in the office. He told me to go out and buy a hot tub (who can afford to just run out and spend $5-6000, and sit in it 4-5 times a day (again, I work all day, not possible) and to massage the area, and it would be healed in one month. I'm no doctor, but I don't agree with that guy. So now I'm waiting for a call back from Dr. Wright to see if he'll do the surgery, he's about 5 hours away.

As for pain, it's getting worse almost daily. Eight months ago, it hurt maybe every 3-4 days, pretty bad when sitting but terrible when going from sitting to standing. I can point right to where the pain is coming from. I remember I had a meeting in St. Louis which is about 4 hours from me. Then after that, my husband and I were heading to Ohio, near Pittsburgh, PA. I was dreading that, and it was as bad as I thought, sitting for about 7 hours at a seminar and then a 14 hour drive. I could have died. Now, when I'm in the car driving for 5 minutes, it starts hurting. Riding, I can make it about 20 minutes before it starts hurting. Of course I have a desk job, so that's a joy. And I'm self employed, so if I don't come and do the work it doesn't get done. Once I go home, I change my clothes and hit the couch, laying down of course. If I sit, I'm just miserable. And God forbid I have to sit at the computer at home (not sure if it's because I have to sit most of the day or the chair there) but once I sit, I just can't get back up. I literally have to force myself to do it, it's torture. But I try to put a smile on every day and go about life.

I'm scared to death to get the surgery, but the Dr. said if I opt to not do the surgery, my only other option is to live with it. So I think I'm headed down that direction. I'm afraid of the surgery, afraid of the 5 hour ride home and the recovery. So many people that have posted here say how horrible it is. I remember the same thing with my hysterectomy too, but the day after I got out of the hospital, I was at work for a few hours, and that continued pretty much every other day. So I like to think I'm pretty tough. I hope so!!!!!!

I will update hopefully after my surgery to tell you all how easy it was!!!!!! *smile* If anybody has an inspiring story or advice, it is welcome.

Thank you...Cara

Update, 2004-05-02:

I just thought I'd drop a quick note with an update. After several trips, I've finally found a doctor willing to do my surgery. I go in on May 10th for my surgery. I've very nervous, scared and excited all at the same time.

I have to make a trip to Oklahoma City (where I'm having my surgery) Thursday for all of my pre-op procedures. I'm dreading that ride as it's 5 hours from here, and driving has become extremely uncomfortable after about 5 minutes. I'll manage though.

They told me I'd be hospitalized for 3-5 days and they wanted me to stay in Oklahoma City for a month. Well, since I have my own business, I have a 6 year old daughter, and don't have an unlimited supply of money, that isn't an option. I'll find out Thursday how long I HAVE to stay there.

I'll do another update after the surgery, hopefully telling everybody considering the surgery how EASY it was!!!!!! *smile*

Update, 2006-02-26:

I had my 2nd coccygectomy August, 2005 with Dr. Leon Dickerson in Charlotte, NC. He gave me about a 50% chance of recovery, the same as the first surgery. It's been 5 months now and the pain is worse again after the 2nd surgery. I had the same problem at the first. Now, I can't really drive at all, I force myself for about 10 minutes into town, but I'm in pain the entire time. Sitting is always painful. I'm in pain most of the time. I was taking 2 Vicodein 2-3 x daily, but that wasn't enough anymore. I switched to OxyContin and that wasn't very helpful, either.

I then started seeing a pain management doctor and we switched to Methadone. I was taking 20 mg daily and the side effects caused me too many problems. This is the first medication that caused me bad side effects. It made me extremely drowsy (I've never felt this way before), a "high" feeling, itchy, problems with urination, severe constipation and a few others. We lowered my dosage to 5 mg a day which wasn't enough. I'm now taking 10 mg a day and not sure this is enough. So I may have to change medications yet again. One I can take a higher dosage and not have side effects. The only thing was when I was taking 20 mg a day, this medicine really helped. And it's cheap!!! I don't have a prescription card with my insurance.

My doctor talked about a spinal stimulator surgically implanted but said there was about a 50/50 chance of it helping. The last two times I took that 50/50 chance I was worse. He didn't push that option. He then said my only other and last resort was a morphine pump surgically implanted at the base of my spine. That scares me too much. So for now, it's all about medication. I have tried Topamax and recently Lyrica. Neither of them helped me. I've tried all of the NSAID's none of which helped. I'm being told I'm out of options. This is very hard to deal with since I'm only 32 years old. I've filed for disability, I was denied. They said to expect this. I filed for my appeal and am just waiting. They said it takes up to a year, and told me to plan on it being that long. Has anybody else received disability for this problem?

I'm searching for any information anybody may have. I realize I'm in the major minority of people that have had 2 surgeries and neither of them helped. So I'm not sure if anybody has any suggestions for me, but if so, please email me with any help you may have. I'm desperate. I can't imagine this for the rest of my life. I spent most of my days laying down. I went through a bad spell for about 3 weeks where I was in bed all day every day. I was getting severe pain from my hips down both legs into the arches of my feet. Now I've had pain that has radiated down my legs before, most likely sciatic pain, but this was different. I cried most of the day every day. This was when we switched to Methadone. I couldn't sleep as the pain was so bad. I moved around constantly trying to get the pain to go away. Nothing helped. It was terrible.

I'm after any information I can get my hands on. I was excited as I saw on the news about a program in California where they're doing a pain study. They do something like a CT scan and have you do whatever you have to increase pain and see how it effects your brain. I was ready to make the trip from Missouri to California to take part but they couldn't take anybody from out of state. So as you can see, I'm willing to do whatever, go wherever I have to try and get some relief, hopefully more permanent relief.

Thank you for taking the time to read my story.


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