Help is found in upstate New York

Amy - ajett@rochester.rr.com

Posted 2008-03-08

I would like to offer a ray of hope to all that suffer. I have learned some things since I first posted in 2005, and would like to share some information that I have learned.

As a very short introduction, I will explain that I have broken my coccyx twice. Each time it healed, my body generated too much bone creating a deformed coccyx that was immobile. As is familiar with so many of you, the pain I felt can only be conveyed using a vulgar narrative (of which I will spare you the details) involving electric carving knives.

In 2005, that pain resurfaced as the result of a long car ride. Not for an hour. Not for a day. For weeks. It was then that I came here. I was glad that I did, because through the readings here, I was better equipped for what was to come.

Weeks of knives and pain turned into months. I could not sit. I could not stand. Frankly, I was all but useless….or at least that was how I felt. My job at the time was working from home, so I spent my days lying in my lazy boy on a heating pad working from the laptop, popping Gabapentin and Tremadol every 4 to 6 hours.

(Incidentally, did you know that if you have been subject to the non-relenting electric knife pain for weeks or months, your body is too busy registering the pain from the knives to realize that you are burning yourself with the heating pad? Listen to them. Use the towel (or something) in between your buttocks and the pad. I burned myself pretty badly in my quest for relief and never even felt the burning. You’d think a person could feel that….but no.)

I was a blubbering idiot while on those pills.

My at home employment ended and I was faced with the prospect that I was more than likely unemployable. Try as I might, I could not find a job wherein the employer was seeking a blubbering idiot that sat in a lazy boy on a heating pad.

I share this with you not for pity – but to express to you that I truly understand how debilitating this can be. I understand the havoc it plays on your mindset and your feelings of self worth.

Here is what I learned the past couple of years.

There is a reason we are asked to jump through what seems to be a million hoops before anybody listens. I used to jump through one hoop, decide that this was a heartless game with an uncaring profession, and I would go away until the pain was so bad I couldn’t take it anymore. Back to the circus. Jump through the hoop. Get frustrated and go away again.

I did not help myself in that regard. Tenacity is a good thing sometimes. I should have exercised more of it.

There are, as you have probably read, a million ways to injure your tailbone. You can hurt it, fall on it, have a baby, get in an accident, or do nothing and just wake up with it hurting out of the blue. Similarly, sometimes the injury will heal correctly requiring little intervention. Sometimes it will lock up, or move entirely too much, or be injured to the point that it is no longer attached to anything at all.

They tell us to take to Advil and call them in the morning. Sometimes that works and that weeds out a very large percentage of the complaints.

If that doesn’t work, they offer a cortisone shot. The cortisone shot is actually serving two purposes. One, it helps our pain. Two, as it was explained to me, if there is a defect and the cortisone shot helps, it offers the medical community a clue that you may be a good candidate for a nerve freeze. Cortisone shots are subject to the laws of diminishing returns. That means that you get one and it lasts a while. Your next one will last a shorter period of time. With each shot, amount of time relief is provided is shorter and shorter until you are left with a benefit that lasts mere hours. As always, less is more in the medical community and you have to keep getting the cortisone shots until you are to the point where the relief gained is too short to justify the expense (and the pain from getting it). And to some degree, we are all hoping that during that reprieve, the problem will be repaird.

I would strongly recommend also using a Lidoderm patch if you need relief between cortisone shots. I had never heard of them and I have to say, they saved my butt more than once. (I’m so sorry…bad joke…I had to go there.) As it was explained to me, a Lidoderm patch is similar to getting Novocain when having a filling. This made me nervous so it took me a little while to actually break down and use the patch. Just in case anyone else has the same fear, I’ll go ahead and look like the idiot. No, you do not lose control of your bowels. They will tell you that you must only use the Lidoderm patch for 12 hours, and you must not wear one for 12 hours. They are not kidding. Not even remotely. I pushed my luck when I had a family emergency and I needed to be a “real” person. If you screw up and wear it too long you will get those wonderful knives back AND have to deal with a chemical burn. Trust me. Just don’t do it. No matter what. 12 hours on and 12 hours off.

After the cortisone shots, they will consider a nerve freeze. They literally go into your body with a laser of some sort and freeze off all the nerve endings that are causing you pain. This hurts. I cannot tell a lie. But, it helps a LOT. You can feel pretty normal after the fact. Although, if you have a mechanical defect you will still feel that something is wrong, but the knives will be gone because the nerve endings cannot relay the pain message to each other and ultimately up to your brain.

Somewhere in this process is the never ending array of pills. Gabapentin, Tremedol, Effexor. I’m sure there are a slew of them. I would strongly recommend reading the side effects of these pills. They can cause some pretty alarming things as far as your personality goes. I had my husband read through all the side effects so he could watch for certain things. The pills are helpful in their own right.

Sometimes they recommend physical therapy. I’m not sure about anyone else, but I know that wasn’t the way to go for me. I suspect it could be quite helpful if your tailbone moves around too much though. Build up the muscles to hold it in place. I’m not versed in this so I will not go into it any further.

Finally, if you have jumped through all of these hoops and you still have pain, there’s another step. And, with each of these things you have been building up to figuring out if you are a good candidate. If the cortisone shots helped, the nerve freezes helped, and you have a mechanical defect of your coccyx, you could be a good candidate for coccyx removal.

There are reasons they make us jump through all these hoops. Sometimes if you have a long standing pain, your nerves go into hyper drive and they don’t know how to stop registering pain even if the reason for the pain has resolved. If they freeze the nerve endings off and the nerve endings grow back registering pain again it is more than likely not because of hyper active nerve endings.

The last test of good candidacy is mechanical defect within the coccyx itself.

I once asked my GP why it was so hard for me to find help. He explained all of this to me. He also went on to explain that one last fear (is that the right word?) is phantom pain. He said that amputees sometimes have pain sensations in an arm that has been removed. The same thing can happen with your coccyx.

I came here in 2005 and posted. I read through countless stories and in them I found a lot of information. I was able to gain a sense of comfort with each new step/procedure and the inner power to keep fighting to find help. I have all of you to thank for that.

For those of you that live in upstate New York, I would like to strongly recommend the following two doctors. The first is Andrew Cappuccino out of Lockport, NY (see Doctors and specialists in the USA). His name may be familiar, he is the one that worked on Kevin Everett of the Buffalo Bills. I would like to credit him with being the very first doctor (other than my GP) to actually listen to me, identify exactly what my problem was, and look me straight in the eye and told me there was no reason for me to keep going on like this and he could fix it.

Of course, I live in Rochester and my insurance would not cover him. A long story I will not bore you with.

The second doctor is Paul Maurer out of Strong Memorial in Rochester (see Doctors and specialists in the USA). I don’t think you can just call Dr. Maurer and he will remove your coccyx. I believe the proper procedure is to go through Strong’s Pain Clinic and see Dr. Rubery. Dr. Rubery will make you jump through all the hoops and figure out if you are a good candidate to see Dr. Maurer.

I have had the distinct pleasure of going through countless doctors. Often, I felt that I was more versed with coccydynia than they were. I had a test that I performed on each doctor. They, of course, did not know I was doing this. I would speak to them of my situation and reference my desire for removal. The doctors that are not well versed with coccydynia will quote the success rate of 50%.

What happened was that the research resulting in the 50% success rate was done to determine the success rate of coccyx removal. The problem with the initial research was that they were performing removals on people without mechanical defect lowering the success rate substantially. A subsequent study was conducted and the control group consisted primarily of coccyx mechanical defect sufferers. I will not quote the success rate of the second study specifically as I have heard two different numbers. What I will offer is that the lower of the two success percentages I have heard was in the 80’s.

I offer that last paragraph so that you too can interview the doctors. If they quote the 50%, they are not the right doctor. You need someone that knows this stuff cold. It’s an amazingly simple procedure (the removal) if you compare it to other spine surgical procedures performed. The key is finding the right doctor.

I had my coccyx removed in August of 2007. Dr. Maurer performed the surgery. He is a wonderful man and incredibly smart. He also has wonderful bed-side manners and a good sense of humor. And…he answered the success rate properly indicating that he was well versed which offered me a sense of comfort.

Honestly, I have waited too long to post about my surgery. My memory has been refreshed by reading of other people’s post surgical stories and I see that I was very typical as far as the healing process went. I did not get an infection at “ground zero” (as Dr. Maurer calls it) to which I must give full credit to Winnie the Pooh. I am sort of obsessive compulsive and I was very concerned about infection. Prior to surgery I went to the store and read every single baby wipe box on the shelf at the store. Huggies makes baby wipes and the one without alcohol (I didn’t want to dry out the site and cause strain via skin pulling in the area) had a wonderful pic of Winnie the Pooh on the front. Given its purpose, the pun was almost too much to bear. Months later, my Grandmother told me that there are wipes made for adults, so maybe I should have been looking in the Depends aisle. What do I know??? If you don’t want Winnie the Pooh, I guess there are other options available.

I can tell you that in mid October I had to go to a class for work which required my driving for an hour and a half, then sitting in a chair for 8 hours and then driving for another hour and a half. Two days in a row. I was scared. Ohhhh how I was scared.

IT DIDN’T HURT!!!!! I keep smiling. So THIS is how normal people feel?! Amazing. Simply amazing. And liberating?! Holy cow!

If you walk away with nothing else….please know that from what I have been told, there is a method to their madness as far as the hoops go. And you need to stick with it. Please don’t get frustrated and give up. Not being tenacious cost me over 2 years of my life. Literally.

Just keep jumping through the hoops and find the right doctor. I can not begin to express to you how wonderful life is without knives. To not be limited on what you can do.

There is hope….and a wonderful life. It’s all yours.

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