Going from bad to worse

Sherlene - sherlenehk@hotmail.com

Posted 2011-01-30

I am a 55 year old female that has had coccyx pain for two years. My pain started for no apparent reason. Sitting at the computer at work and my tailbone felt sore when I got up one day and went from bad to worse. I'll try to give a timeline.

Feb 13, 2009

Went to my general practitioner with tailbone pain. She ordered an x-ray which was normal.

May 26, 2009

Had an MRI that shows no problem with tailbone (honestly don't think my tailbone was even in the picture) that showed two tarlov cyst on my sacrum.

During this time I am buying coccyx cushions, took an anti-inflammatory that did not help. Nothing seemed to help.

July 2009

My GP sent me to a Neurosurgeon to see if she thought the tarlov cyst was causing the pain. She asked me to stand up and show her where the pain was, I did and as I started down to where it was she immediately said, "No, that is too far down to be caused by the tarlov cyst. I'm sending you to Pain Management for an injection." A WASTE TIME. And she got paid WHAT for that? Ridiculous. The appointment was made but I canceled because I did not want to do injections. I was determined to find the cause, not mask it.

October 2009

I ended up have diverticulitis and ended up in the emergency room. When I went to my colorectal doctor I asked him to be careful around my tailbone because it is was very sore. He started to examine it and seemed to care more than anyone I had been to. He asked me if I wanted him to do injection. That he does them all the time for people. At that point I was so tired of fighting this thing and I already had my butt shining I told him to go for it. His injection was without the fluoroscope but he did tell me that my pain was more to the left of tailbone. All I knew was that I couldn't sit normal anymore without a coccyx cushion and driving was excruciating. At first it seemed to numb everything but I still couldn't lean back on my tailbone. But when that wore off it seemed to make things worse.

Nov-25-09

Went back to my GP and asked to order an MRI that Open Stand-UP MRI had advertised positional MRI's which basically they had you do what causes you the pain while they did the MRI. I thought great, NOT. I asked to do a seated one because that was when I had the pain. OMG Another waste of time. If there was anything I regretted more during this HELL I've been through was that. I thought it would never end. If I remember correctly it lasted over an hour. By the time it was over I couldn't hardly get up and walking was excruciating. It took several hours for the pain to subside. All they could talk about in the report was that I had a prolapsed uterus and all about my female organs because on the report it listed my problem was "pelvic pain". I felt like suing them for torturing me.

Dec 2009

Had a checkup with my gynecologist. He wanted to know if I wanted to do something about my rectocele and cystocele (prolapsed rectum and bladder). Long story short he sent me to another gyno who suggested I have a hysterectomy while I was having the repairs done because of a prolapsed uterus. I asked, " Do you think this be causing my tailbone issued?" Answer, "it could".

January 20, 2010

Total hysterectomy with bladder and rectum repairs. Took off work 4 months hoping to be good as new when I get back. Tailbone only got worse because I was laying on it too much trying to heal from the hysterectomy. Back to the drawing board.

March-25-2010

Made appointment and went to Interventional Pain Management doctor. He ordered a sitting/standup x-ray which he thought when he looked at the films that my tailbone went backwards when I sit. I was excited. Somebody might have found something. The technician read it and said it was normal.

March-29-2010

Same doctor did an injection. Sacrococcygeal joint injection. No improvement, only made it worse.

March-30-2010

MRI order by the Pain Management doctor. No abnormalities.

April- May 2010

Physical Therapy – Waste of time

June-24-2010

Physical Therapist sent me to a Physical Medicine and Rehabilitation doctor. She said she was the best and wouldn't quit till she found out my problem. I think that was her way of getting rid of me because I wouldn't give up and she wasn't helping me. That doctor suggested I see a Doctor at the University of Kentucky that has removed tailbones.

September-2010

Went to the orthopedic surgeon at the University of Kentucky. He had only removed three and thought I wasn't good a candidate because I didn't come off the table when he pressed on it. ???? He ordered a CT Scan. Normal.

October-2010

Was sent to another physical therapy location by one of the doctors. At this point I can't remember which one. After you have gone through so much it all runs together. This therapist was completely different than the last one. The last one used some kind of ultrasound thing and infrared. No massages or anything. This therapist was more of a hands-on. Trying to get the muscle to release around your tailbone by pressing on the muscle. She would have me sit on her finger in an area close to my tailbone. It did seem to help but only for a few minutes and as soon as I got back in the car it all came back.

November-07-2010

I was referred on to another Interventional Pain Management doctor and two more injections that were of no benefit.

January-24-2010

At this point I am at my wits end. Nothing is helping and only making it worse so I made a decision to call a doctor that removes tailbones in Charlotte, NC that has had high praise on this site. I actually called him and left a message but no one called me back so I decided I would try one more thing. Decompression Therapy. I made an appointment with a doctor that does that here in my hometown.

But in the meantime and here is the good part. I thought I would just really probe and find out exactly where all of the pain is coming from because by now it was over into the cheeks of my butt also. I can't drive without pain, riding in a car is a little better but not much. I'm sitting on a neck pillow because you can spread the open end wide then a coccyx cushion because my pain so widespread now. So… while I was digging into my butt trying to find the worse pain for about 5 minutes and stopped I felt a big relief so I started doing a deep tissue massage right where the pain is in both of my butt cheeks but not on the tailbone. That has given me more relief than anything I have done in this two years of hell. I explained all of this to my chiropractor and he has a massage therapist in the office so I am gonna see her on the visits that I don't do the decompression therapy. One or more of my MRI's shows that I have bulging disc so the decompression therapy could help that and who knows that may be where my pain is coming from in my tailbone. . Maybe deferred pain but I know one thing, I am not giving up on this. I have another appointment with the chiropractor on Tuesday (2-1-2011) and will find out more about the plan of treatment. I will update when I know more but if you have had a tailbone problem and now your butt cheeks are having a lot of pain just give yourself a good deep massage about every hour and you just may see some relief. I hope so cause I know how terrible this thing can be. I look at people that are sitting normal and think, "How lucky they are". LOL Well gotta laugh about this pain in the butt. Later……..

Update, 2011-04-02

Thank you so much, Jon, for this website. You have helped so many people with a problem that is so hard to get help for. Thank you, thank you, thank you. I couldn't wait to do my update.

First of all I did have decompression therapy at a chiropractor in my hometown and also had massages. The decompression therapy was a good thing for me because I had some sciatic nerve pain, I assume that was caused from a couple of bulging disc and that is all gone now. The massages were good also but did not help my tailbone pain and neither did the decompression therapy.

So I proceeded to get an appointment with Dr. Hanley in Charlotte, NC (see Doctors and specialists in the USA, North Carolina). I had that appointment Tuesday, March 29 2011. Let me say, THE MAN IS A GENIUS. Sorry, I get excited. I sent all of my MRI's, x-ray's and CT scans and reports from injections by certified mail before my appointment. He only needed to see my x-ray when he told me my x-ray was ABNORMAL. Now you have to understand that I have heard "normal" for over two years. My coccyx is completely separated from my sacrum and the last section of my coccyx is completely loose in there. This x-ray was read as normal at Lexington Clinic in Lexington, KY. Now, pray tell me, how can someone get paid to read an x-ray of your coccyx that obviously doesn't know the first thing about it. All of this, sacrum and the three sections of your tailbone should be fused together like the rest of your spine and mine is not. It was so obvious to me when he showed me what was wrong. It makes me furious when I think of how long I have suffered and he was all I needed.

If you have coccyx pain for no reason (you have been told) and can get to see this man, GO, GO, GO. I wish I had two years ago. But, two years ago I had read about this surgery and thought, OMG, I would never do that. Don't ever say never. They will be calling me in a week and I should be going in for surgery in approximately 3 weeks. It is a 6 1/2 hour drive and is outpatient so my husband and sister are going and making a bed in the back of Highlander for the ride back home. I will update after surgery. Finally some hope. If you are reading this and have had surgery any suggestions would be appreciated. I've had several people to email me and I appreciate every one of them so much.

Update, 2011-04-17

I had a complete coccygectomy on Monday, April 11, 2011 at Carolina Medical Center in Charlotte, North Carolina by Dr. Ed Hanley. We drove down on Sunday and spent the night and had to be at the hospital by 8:00 am the next morning, surgery at 10:30. I was in the OR for 1 hour, surgery only takes 30 minutes. I was in recovery until they let me go home at 3:00 in the afternoon. We had made a bed in my Toyota Highlander for the ride back home. We live 6 1/2 hours away. I had a brilliant ideal and ordered one of those urinals for men with a woman's attachment and took into a bathroom on the way back and it worked like a charm because you can't sit down. I've used it a lot since I have been home and really appreciate it. I also have a raised toilet seat.

I was in a lot of pain when I woke up because they had me laying on my back. But when I woke up and moved to my side and she gave me pain meds I was pretty comfortable. The ride home wasn't too bad either. I slept a lot and my sisters gave me meds when I needed them. I took Keflex and Bactrim until yesterday. He gave me refills on both in case I felt I needed them. I took the hydrocodone until Friday morning. I hate the feeling I get with those so I am taking Advil when I need it. The first couple of days trying to get up from a lying position was excruciating but I can tell a difference from day to day. Dr. Hanley advised not to sit for at least 3 weeks and I haven't. It is too painful to lay on my back also. So, I have to lay on my hips and it is killing me. My hips and legs are really aching this morning. Think I'll be crippled after 3 weeks of this. LOL

Since I can't sit I can't really say if I can tell a difference in that old tailbone pain or not. He said it was just loose in there and he just reached in there and pulled it out so I should have good results. But the only pains I feel is the incision and some deep soreness like a bruise, besides my hips. I started walking everyday about 1/2 mile on Wed and it felt good. I've never had tailbone pain except for sitting anyway.

I will update after I get the stitches out in three weeks. Feel free to email me with any questions. My schedule is open 24/7. LOL And I love my coccyx friends. We like to talk about our butts. Who me? And not how cute they are either.

Update, 2011-06-05

I went back to Dr. Hanley on May 3rd to get stitches removed. He said that my incision looked "as good as any he had seen" and that my t-bone had come out in two pieces and that was the ones that did the best. I also returned on May 29th for my 7 week checkup. The t-bone pain is definitely gone but I still have pain from the incision which Dr. Hanley says will last 3 months. It is a slow process healing from this surgery but well worth it. I am very thankful for this website and Dr. Hanley and most of all Jon.

I am also very happy I did the decompression therapy before my surgery cause I have not had any pain in my low back during my recovery period which is a surprise. I still have to have a coccyx cushion in the car but it is slowly improving. I will be returning to work after my next visit to Dr. Hanley which is July 21st and I hope to be able to post that I am 100%. That will be amazing.

I want to thank everyone that emailed me and please keep in touch. I love coccyx.org. It has been my lifesaver.

Update, 2012-10-21

It has now been over 18 months since my surgery and I've had several emails lately and thought I should update my post. I couldn't be more pleased with the results of my surgery. I feel great and should have had the surgery much earlier. I know, if you are reading this, you have tb pain and probably have had it so long you can't imagine life without it but I don't even think about it anymore. Before surgery that is all I thought about because the pain consumed my life. You had to take it into consideration when you went to church, funerals, driving a car, riding in a car or plane, vacations, going to the movies was out of the question, but that is all gone. The only time I think about it is occasionally if I have been riding in a car for a long time I start to feel sore but immediately when I adjust my rear the discomfort goes away.

I am so thankful for the website. I can't say that enough. Feel free to email with questions or just to voice your concerns because I know how difficult it is to find someone that understands what you are going through and if you have read my entire post you know that I know exactly what you are going through. It was the darkest days of my life but now I am retired, can travel whenever or wherever I want and do not have to worry about my rump.

PRAISE GOD....

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