Dee Ann - firstname.lastname@example.org
It's been a little over four months but it feels more like four years since I fell. I've been reading the other cases on this website for quite awhile, and it's helped. I've started to begin my own journey here many times, but worries about legalities & what-not have always stopped me. So I finally decided to write only about my injuries, and not how they happened.
My entire coccyx is completely separated from my sacrum. That showed up in the flat x-rays. A week before Christmas I had an MRI, and got the results two days ago. In addition to my 'broken' or severely dislocated coccyx, the fifth segment of my sacrum is fractured and 'cracked', and there is marrow edema and I now have moderately bulging discs.
I am a 37 year old woman in excellent physical health, or was, until Labor Day weekend. I can barely walk. I am taking several pain medications and have been forced to apply for disability benefits because I can't drive or sit directly (I can 'sit' on one thigh or another, or a hard chair with coccyx cushion). Last year I ranked number 3 in my company nation-wide. I was rejected for disability benefits and rejected for insurance assistance.
I've been injured beyond reason, beyond a way for me to rise above or overcome, and slapped repeatedly in the face on top of it. It's got me wondering what I did to piss off God so royally. I've considered suicide, naturally, but it isn't even an option. I have two children & two steps who need me, even now when all I can give them is love. Most days I find it hard to get dressed. Brushing my teeth seems like an eternal chore & a waste of time. Everything takes forever, and stairs and soft chairs are now my worst enemies.
What I really want to talk about are my doctors. MY DOCTORS don't seem to know anything about the tailbone, and even less about coccygectomy. Both orthopedic specialists I saw (from competing clinics) said they had never seen an x-ray like mine, and both said not to get any information from the internet because it is ALL BUNK. Bunk meaning bullshit, of course. Now I'm under the care of a pain management specialist who is an anesthesiologist. He eventually wants me off every drug that could be habit forming. The latest drug he has put me on is Topamax. I looked it up and it's for migraines and epileptic seizures. Has anyone else even heard of such a thing? It is NOT helping, by the way.
Best news. I have an appointment with Dr. Stephen Bartol (see Tricia's story) at Henry Ford Hospital in Detroit next week. We're flying out Wednesday morning and the appointment is Thursday. If not for your site, this would not have been possible. When I talked to Dr. Bartol's nurse, Nicole, I told her one of the orthopedic specialists I had been passed around to had sent me to a pain management specialist for cortisone injections in my coccyx region to ease the pain and after the MRI, the doctor wouldn't do it. She said, "Of course not, you have a fracture. Thank God you had a good doctor who knew what he was doing."
I am absolutely amazed at the ignorance related to severe coccyx injuries in the orthopedic field in this day and age. Had I not done my own research, found your site and finally took the bull by the horns and started calling the doctors listed on your site on my own (some were not to my liking, by the way, but to each his/her own), I would simply have slipped through the wide fingers of a health care system who would not help me simply because their orthopedic manuals say coccygectomies are rare and a thing of the past. Wait it out, they all said, and it will get better.
The antidepressants are helping, but knowing I have an appointment with someone who knows what he's doing helps most of all. This has been a frustrating ordeal, to say the least. My marriage has suffered but become stronger, our children and parents, and going off and leaving them and our 3 dogs and everything to fly to Detroit is expensive and worrisome, naturally, but if the outcome is worth it, then it's worth it, you know? We're all hoping and praying for the best.
If nothing else, I've come to realize how much I'm needed, and I need to get back to being me for them. And for me.
Yay! My surgery is scheduled for April 11!!!
It will be at Henry Ford Hospital in Detroit, Michigan, performed by Dr. Stephen Bartol. His nurse is Nicole Oullette and she is so awesome there is a street named after her over in Canada. (Her last name, anyway).
But back to me. I was told by the orthopedic specialists here I had to wait a minimum of 6 months before any surgeon would even consider talking to me.
It will be 8 months since I fell on April 4, and it's been a long haul for me and my family. I told my local doctor I wasn't going to kill myself, but if he didn't give me something quick, I WAS going to have a nervous breakdown. I've never been through anything like this in my life.
This wouldn't be happening for me now if not for this website (www.coccyx.org), and Tricia taking the time to write what happened to her and listing Dr. Bartol's name and contact information. I am extremely optimistic about this surgery. I want my life back. As I told Nicole though it probably isn't spelled right, I want joie de vivre again. You can't have that when you're on pain meds and you can't sit down and you hate leaving the house because practical strangers come up and ask what's wrong with you and you try to tell them and they try to tell you they broke THEIR tailbone or someone they know did and it healed just fine eventually and not to worry, that it would heal eventually, or that you need to see this doctor or that, when you've seen the specialists there is to see.
Dr. Bartol said he cringed when he saw my x-rays, and that there was no way my tailbone could heal. It's in two pieces. He said it couldn't jump over and heal itself, it has to come out. Instinctively, I've known that since my x-rays were explained to me and the fact that they couldn't put my coccyx back in place.
I'm happy, and I'll be excited to come back two weeks after the surgery and write another update about how I'm doing. Until then - peace.
Saturday, April 8, 2006: Steve and I drove his parents' van to Detroit from Missouri. The hospital apartment I was to stay in for 2-1/2 weeks didn't have pots & pans or other household things - too much to cart on a plane. We packed up things we were willing to donate to the apartment, as I would fly home at the end of my stay.
My surgery was on a Tuesday. We arrived Sunday night, unpacked, prepared. We brought a DVD & watched movies. I was so excited.
Tuesday: When a nurse woke me in post-op, I asked her if they'd done the surgery yet. I was confused because I had expected to wake up in agony, but my tailbone actually felt better. As the nurse began talking about my successful surgery, I saw the surgeon's assistant doctor walk past. I crawled to my knees and called him over. I hugged him and thanked him.
I couldn't believe it. It no longer hurt to squeeze my butt cheeks together.
I developed some low blood pressure problems so they kept me in the hospital an extra couple of days. I begged to go back to our hospital apartment so I could spend a few days alone with my husband before he had to leave and my mother would fly in to replace him. In addition, my husband and I are still positive that my roommate in Henry Ford Hospital was completely insane.
My roommate had medusa-like hair and huge eyes that startled me every time I woke up. She stared at me after I fell asleep, then made comments when I woke like, "You sure do have a lot of hair." She never smiled. Every time my husband brought me something, she would ask where hers was (and wasn't kidding). We were both pretty much scared of her, so my husband would go get her a duplicate of whatever he brought me. She hustled the meal-people and nurses for extra food, "make sure it's wrapped," and hoarded it. She grilled us about where my husband and I live and our lifestyle. She said she was coming to stay with us and would surprise us in one of the aisles at our local grocery store. She said she was tired of Detroit and ready to live somewhere like Missouri. We laugh about it now that a few months have passed without sight of her.
After my blood pressure got under control, Dr. Bartol said I still couldn't leave the hospital until I had a bowel movement. I drank more prune juice in one day than the total of my life prior. I just kept telling them to bring me more, and I drank it right up until the next morning when I finally had something they could look at and let me get out of that room.
Our apartment was very clean. It was in the building where many of the residents live. Our floor was specifically for families like us, who had to stay for awhile but not actually live there. We had a balcony overlooking a small playground and a parking lot. Everything was inside a high fence, and security cars patrolled the parking lot every few minutes. We had a living room with a couch, TV, small dining table w/2 chairs and a standing lamp. We had a kitchenette with an adjoining pantry, where we stored the cans and bags of food we'd brought with us. Down the hallway we had two bedrooms, each with twin beds, a dresser, nightstand and lamp, and on the other side a bathroom. Coin laundry was on the first floor of the building, and we had maid service. The maid, her name was June, wore purple scrubs and purple gloves. June was from Jamaica and had a personality like sunshine. I don't think I ever saw her WITHOUT a smile. In all, it was nice, and made my recovery even easier.
I had to stay the extra time for follow-up visits with Dr. Bartol because of the high risk of infection after the surgery. But my husband had to get back to work, so my mother flew in on Friday. We didn't want my parents to be apart Easter weekend, so we had gotten Dad a ticket too. But Dad doesn't like to fly, so only used half of his round-trip ticket and rode home with my husband in the van.
In the meantime, I felt so much better physically I decided to dump ALL of my medications. By this time I was on a daily dosage of (from my diary):
"Topamax 25mg 2 tabs twice daily (chronic pain), gabapentin 300 mg (for neurontin) 2 capsules 3 times daily (chronic pain), effexor 75 mg one tablet daily for ocd/paranoia/depression (cabin fever of Stephen King's 'The Shining' type - just kidding - but do have mild symptoms causing me problems that are not mild), alprazolam 0.5 mg two tabs daily(for xanax) to treat anxiety, cyclobenzaprine 10 mg (for flexeril) two tabs twice daily (muscle relaxer for muscle spasms), and tizanidine hcl 4 mg (for xanax) I take 1 to 3 at bedtime, heavy duty muscle relaxer helps me sleep through the night so aches don't wake me up (you can tell I have my medicine basket sitting in front of me). And other medicines I have in case I need them (for acute pain) are tramadol 50 mg (for ultram and doesn't really help so I never actually take it) and hydroco/bitar/& acetaminophen 7.5mg/750mg (for vicodin, which I only take if we have to travel somewhere like Columbia, because riding in a vehicle is now one of the things I look forward to the least)."
Dr. Bartol's assistant said I had to be weaned from the medicines, but that made me feel like a drug addict, which I am absolutely not. So I stopped taking everything, all at once.
Don't ever do that. Especially on Neurontin. My mom was having some sort of problems with my dad - arguing over the phone, trying to control him over the phone, I don't know. All I know is I got caught in the middle, in a strange place where I was trying to recover and get back to a real life after almost a year of hell. I went from being the happiest person on earth straight into a nervous breakdown. I've never had a nervous breakdown before, and I don't recommend one now that I've experienced it. If I would have listened to the docs and eased off my medications, I could have handled what was going on instead of falling apart. My body healed much faster than my emotions.
My incision was only 2 inches long. But I still couldn't sit well on the flight home from Detroit. Lucky for me there were three open seats in the last row by the restrooms. The flight attendants let me lie on my side back there after we were in the air.
I was a mess when I got home, and that is the sole reason I haven't updated before now. At the time I got home from Detroit, I was so fabulous physically, but loud noises made me jump, I was scared of falling, I burst into tears over ANYTHING. I was never so glad to see anyone as I was my husband at the St. Louis airport. We stopped for Chinese on the way home, but went straight to the baseball park (with my bags still in the back seat of the truck) to watch our boys' game. My son hit one over the fence. I still have the ball he hit over on April 7th, the day before my husband and I left for Detroit. This is what he wrote on it:
"4/7/06. This is my first HR of my JV career. Good luck w/your surgery. I love you Mom, ZACH."
I keep it with my jewelry.
The first two weeks were the worst, both physically and mentally. I could walk and sit, but my back hurt so bad I could hardly stand it. Thank God Dr. Bartol had warned me my back would hurt this way or it would have scared me to death.
Gradually things got better. I could sit for longer periods, the back pain went away, and some of my self-esteem began to return. I had felt like a victim for so long, it was hard to get out of that mode. Eventually I stopped feeling so sad all of the time.
It is now August 15, 2006. I've been back to work for 2 ½ weeks. I have good days and bad days, emotionally, but physically I'm healed. I still start to ache if I have to sit for extremely long periods (like over an hour), but Dr. Bartol said it could take up to a year for that to go completely away.
Something good has come out of my experience. I wrote a letter to one of the local orthopedic specialists I'd seen initially - the one who said all information on the internet is "bunk" - to tell him that if I'd listened to him I would still be disabled, and that I had the surgery he'd advised against, and I'm all better now. Anyway, he called me last night to respond to my letter. That surprised me. He said he was sorry, and that I had opened his eyes and educated him. His experiences with coccygectomies, which was limited, were not good ones. He said he honestly thought my injury would heal. He said he was going to check out coccyx.org and get Dr. Bartol's contact information, and would never make the same mistake with a patient that he'd made with me. This news thrilled me even as it reminded me that progress always comes at somebody's expense.
I highly recommend this surgery to anyone who can't find relief from the pain. Dr. Bartol's nurse Nicole said when they took my coccyx out, it was pointed straight forward at a 90 degree angle. It's been almost a year now since I fell, and I'm still looking for the person I was before I got hurt. I see glimpses of her now and then, but I'm starting to think I'll never be the same.
I guess my best advice goes to those who've been suffering chronic intense pain for any length of time: Don't expect your life to rewind when the pain stops. You don't get to forget what happened or how you felt. The holidays and family fun you missed out on don't replay with you suddenly in them. You move forward and do your best, and if it was someone else's fault that you got hurt, as in my case, you try not to be bitter and remind yourself how happy you are to be healthy again, even without a tailbone.
Good luck to you. Dee Ann
P.S. Nicole Oulette is no longer with Dr. Bartol's office.