Susan - SusanP424@comcast.net
Hello, My name is Susan and I have been reading this site for the past few months. So far it's the only site that has provided me with any useful information on this painful condition. My only hope is that people with this same condition will continue to post their success stories in order to help others that haven't been able to find help elsewhere.
My problem started two and a half years ago when I began to experience increasing pain in the lower back and tailbone area. At the time I was lifting a lot of heavy furniture while repainting my bedroom. I assumed the pain would get better once I quit moving the furniture around. Prior to suffering from this pain I was able to ride my ATV up bumpy mountain path's with no ill effects. My last pain-free day I took the ATV out despite the fact that my back was quite sore. After a short period of riding I was in severe pain. Since we were a out of town I couldn't go to the doctor for a few days and by time I went to a immediate care facility I was miserable. They gave me a shot of toradol I think and prescription Naprosyn. They might as well have given me sugar cubes because it was completely uneffective. The next day I went to my regular doctor who prescribed Ultracet and motrin. I took the maximum dosage of that an d was still in severe pain. I finally ended up at a gastroenterologist because my stomach could not handle the medications. At that point, I switched to Vicoden. That provides enough relief to get through the day, but sitting in a car for more than short drives is agonizing. I also take Soma at night if I need it, but not if I have to drive anywhere. The combination of both seems to work best on the worst days.
I've been to multiple doctors trying to find a solution and most have just told me that either I'm just going to have to live with it or they don't believe it could really be that bad. The most frustrating experiences have been dealing with doctors that believe that I just want pain medication. One pain management doctor surprised me one visit with a drug screening first thing in the morning. Since I wasn't expecting it and couldn't provide them with a large enough sample, I was told that I had to return within 24 hours or would be in violation. That day I had received a spinal injection, so driving back later in the day to provide a large enough sample was excoriating. Since I take as little as possible medication to get through the day and my sample was early in the day, when it came back negative for any drugs they questioned whether I was obtaining medication for others. I was 47 at the time and up until this injury had not asked for nor received pain meds for anything other than after major surgery and rarely took more than a few days worth. But for this condition, I have a choice of laying around the house in constant pain or choosing to take medication and trying to lead what I can of a somewhat normal, but limited life. I still do not sit but for very short periods and experience some level of pain every day.
So far I have received 7-8 injections with no success. I currently have 2 different diagnosis which require completely different possible solutions. Any of the procedures could leave me worse off than I am now. One doctor has said that my L-5/S-1 disk most likely has many tiny fractures that fills up with the fluid in between the disk. This can be explained by a severe fall I had many years ago. This does not show up on MRIs and I've been told the only way to know for sure is to get a diskogram where they inject fluid into the suspected disk and if it causes the same pain they can be relatively sure that's the problem. When I told him it's the tailbone that is causing my problem, he says that it is radiating from this bad disk. Since injections have not helped, my only options are either a total disk replacement or another procedure where they basically burn up all the nerves in the affected area and you have to remain in a back brace and do nothing for 3 month's while the nerves regenerate. I am terrified to try this, especially if the doctor has the wrong diagnosis. Another orthopaedic doctor says that my disk is not the problem but my tailbone is bent inwards, possibly from breaking it or being a congenital condition. Tailbone removal is his only possible solution since physical therapy and shots haven't helped. I've been repeatedly told that tailbone removal may not help and may leave me worse off.
From reading this site, I think I want to try and find a chiropractor who is familiar with coccyx alignment first and then if not successful with that pursue either tailbone removal or disk surgery. I would love to hear from anyone with good or bad outcomes from any of these procedures and would especially like to find a doctor close to where I live in the Maryland/DC/ Virginia suburbs that has worked with this condition.
Sorry for such a long letter, but I really am looking for the right answer. I will post any positive or negative results that I have in the future. Susan SusanP424@comcast.net
Since my first posting I have heard from many people and have gotten a few names of local doctors to try. Currently I am seeing a doctor at a practice in Northern Virginia that was recommended by another reader. Their practice specializes in non-surgical treatments for pain. He assured me that my problem is not that uncommon and he thinks he can eliminate the symptoms. He thinks the pain is from the tendons and ligaments around the tailbone and that a series of shots called prolotherapy will help.
I figure it is worth a try as I am hesitant to have surgery when I'm not entirely sure what is causing the problem. I just had my 3rd set of shots yesterday. Before these shots I not only had the original tailbone pain, but also pain radiating from my tailbone down my left leg. I believe this pain was caused by another doctor who was trying to manipulate my spine back in place [My original diagnosis was a spinal alignment problem]. The shots have greatly reduced the radiating pain. I still have the tailbone pain, but it is not nearly as bad as I started out. I can sit for longer periods and take less medication. I'm not sure yet overall how effective this treatment will ultimately be but am hopeful that I will get some relief.
I still believe I have a problem with the tailbone, but the doctor has not yet recommended trying to manipulate it, by looking at the x-rays he cannot see an obvious problem. I have asked numerous doctors if I could have a bone spur, but none seem to think so. I occasionally get a small cyst that appears near the area of pain but it doesn't last for long and has never been there on any of my appointments. I think it must be related to my symptoms but wouldn't know what kind of doctor to ask.
So for now I'm going to stick with this doctor and see how much relief his treatments provide.
Thanks to all the people who sent replies. I think sharing tips and experiences on this site is the best source out there. I'll post again in a few weeks and let everyone know how these last shots worked.
Best wishes to everyone seeking relief and those who have had success and share their stories. Susan
At my last posting, I was trying prolotherapy with a doctor in Virginia. That was a big waste of time. The doctor was giving me injections of motrin and other stuff into the muscles around the tailbone area and left side. They left huge deep purple bruises that lasted for weeks. Each subsequent visit he would continue the injections. I was usually in and out of the office in minutes. After numerous shots, I began to feel like this was a useless treatment. It did nothing to solve the problem. When I saw how much my insurance company was billed for these random shots I was shocked. He was basically billing as if I was having surgery each time and it was no more technical or time consuming than giving me a measles shot.
I have gone back to another pain management doctor whom I was seeing previously. He is convinced that my S-1/L-5 disk is the problem even though my MRI's only show mild degeneration. He says a spinal fusion is the only hope and not worth the risk. I don't think any doctor I have seen recognizes the level and amount of pain this causes. I'm not convinced that anyone has isolated the reason for this constant pain. My condition is basically unchanged for years. I'm still hoping that one day I'll come across a doctor that has successfully treated this problem. Not one doctor that I have seen has recommended having the tailbone removed so I haven't wanted to pursue that option, even though it feels as it is the source of the pain. So far I have been to a neurosurgeon, orthopaedic surgeon, physiatrist, and a couple of pain management doctors specializing in spinal problems.
I manage by avoiding activities that make the pain worse and taking medications. I get spinal injections when the pain becomes unbearable which sometimes helps the radiating muscle pain, but not the tailbone pain. I have to sit for long periods at my job which is difficult, but I have a reasonably comfortable chair and get up and down alot. I've had to find new activities to enjoy that don't involve anything that will cause a flare-up. I find walking and swimming to be the two best things for me. Lifting anything remotely heavy or driving long distances are the worst triggers. I don't do as much as I should though as at the end of the day all I want to do is lie down for awhile to relieve the pain.
I have really enjoyed hearing from others and sharing experiences. One person who contacted me early on is actually doing well now after receiving a variety of treatments and physical therapy. It took her years of trial and error to get a treatment that worked for her and she is still afraid to jinx herself by telling others that she is better. Others are still suffering, but getting by. Thanks to all for sharing their ideas and stories, hopefully one day we'll all find the right answer for us. I'm still looking for suggestions for doctors or treatments that have helped people- especially in the Maryland suburban area. Best wishes to all. Susan
I thought I would update on how I'm doing after years of searching for a solution for chronic tailbone, lower back and leg pain. Over the years, I have seen at least half a dozen doctors, and have had numerous MRI's, nerve conduction tests [ouch!!!], and other diagnostic procedures done. Not one test has shown what the problem is. What is most frustrating is that none of the doctors I have seen have a clue of what we sufferers experience from day-to-day.
After my most recent visit with my pain management doctor, he finally came up with a possible diagnosis that actually makes sense to me- Piriformis Syndrome. When I looked up the symptoms, they exactly describe what I have been feeling. [I actually asked him years ago about this condition and he said I didn't have it.] I think what has thrown everybody off, was that I always thought that my leg [buttock] pain was radiating from my back or tailbone area. Now, I feel like the exact opposite may be true. Piriformis syndrome has been described as feeling like a lobster claw pinching a nerve, and I can honestly say that is what I feel like much of the time. The nerve actually gets entrapped by the piriformis muscle. Other symptoms that I have is pain when sitting, relief when standing [temporarily] and resting, and inability to lift anything remotely heavy.
I'm still not hundred percent sure that this is the only condition that I have, because I am not sure how this problem would cause me to have so much direct tailbone pain.
Now that I have an idea of what to treat [5 years later], I am going to set out to find a doctor with experience treating Piriformis Syndrome. I have read that sometimes exercise, injections and physical therapy may relieve the entrapped nerve. I have already tried all these treatments, but I think they were always focusing on my spine instead of this muscle. Previously, surgery to free the nerve was risky and extensive, but now I have read about a doctor who can do the surgery in a minimally invasive manner. The only problem is that this doctor is in California, and I live 3000 miles away in Maryland.
If anyone knows of an experienced and capable doctor familiar with treating this condition in the Maryland/DC/ Virginia suburban area, I would love recommendations. I would also love to hear from others that were kind enough to email me in the past to see how they are doing.
For anyone who has pain radiating from the tailbone area and down the leg and buttocks area, please look up Piriformis Syndrome and see if your symptoms match up. Another similar condition is Pudendal Nerve Entrapment. The symptoms are very similar.
Best wishes to everyone for finding the right answers to this painful condition.