Lately, the pain has become excruciating

Jackie, USA - Jacalou007@aol.com

Posted 2006-01-22

I broke my coccyx thirty years ago. I have had pain when I sit ever since. Lately, the pain has become excruciating. I believe that a few additional falls, age, and chiropractic made the pain worse!!! I used to be able to sit for a short amount of time. Now, I can't even do that without bad pain. I used to love to travel, but now I fear anything that requires sitting for any length of time. I am taking dilaudid daily.

It is depressing, but I refuse to give up hope!!!!!!!!!!!!!!!!!! I have taken a year leave of absence from my job in order to seek a resolution to this painful problem. I will be going to a doctor listed on this web-site. I will keep you posted.

Jackie in NY

Please feel free to email me, just be sure to put coccyx into the subject column.

PS.... Thank you to all those people who have created and contributed to this site.

Update, 2006-02-12:

Hello, I have had it! I have set my surgery date, and I will keep you posted. The surgery is scheduled for mid March. I chose a doctor from this site. The pain is quite bad, and I am taking dilauded daily because I choose to keep severe pain at bay whenever possible. I can feel this bone move around throughout the day depending on my position. My lower spine seems to be sinking into my body. My tailbone now curves into my body where before I could feel it almost to the rectum. This curvature was set off by a chiropractic experience that I had years ago. I know this because as soon as I sat down after the adjustment, I could feel the bump where before there was none. Age and some falls since then haven't helped either.

I am going to Florida to try and forget about this stuff for a little while. I might as well try to enjoy myself before the operation. I am very nervous, but I can not live like this! The moving tailbone can't be a good thing! Please wish me luck!!! I would like to thank all who have written to me, and especially to you Jon for creating this very informative and helpful site.

Take care,

Jackie in NY

Update, 2006-03-19:

Well, I am back from surgery. The operation was performed on March 7 by Dr. James Campbell at Johns Hopkins (see Doctors and specialists in the USA). I chose him from a list of doctors posted on this site. I had seen several doctors, but I felt the most comfortable with him doing the procedure.My very helpful and wonderful family and I flew (ouch) back to NY from Baltimore on March 12.

I made it!! I am ALIVE!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Yippee!!!!!!!!!!!!!!!!

The useful info that I received from this site was FABULOUS!!!!! THANK YOU JON and OTHERS!!!!!

The doctor performed a full coccyxgectomy. My first night was awful, but I was so glad to be alive that it made it tolerable. As soon as I got into the recovery room, Nurse Ratched began rushing me out of the hospital. My insurance had approved at least one night. She was the person that told me this, but for some reason, this lady wanted me gone. So...gone I went. Hey, this New Yorker knows how to take a hint.

I laid down in back of the cab for the ride back to my Baltimore hotel. For some reason sirens go off every five minutes in Baltimore. What is going on?? I have lived in some of the worst areas of New York City, so I am no stranger to violent streets; yet, in Baltimore there is a quiet but palpable undercurrent of evil that could rival any chapter in one of Dean Koontz' books. OK, enough about that!!!

At any rate, I vomited quite a bit that first night. I did this to the everlasting accompaniment of sirens in the not so distant background. And, at least one point, I wished that whomever was doing the siren-blazing would come and get me. I did have the headache of the millennium, and tush pain. Other than that, I was marvelous!!!!!

Here is the good and bad news: My tailbone was pointed into my body rather than downwards as in most people. It was a long, double-segmented pain in the butt. It is gone, and I say good riddance. The annoying crotch pain is also gone. Hurray!!! Bad news: my sacrum is also bent inwards, and it hurts even more. I am hoping that this is temporary and due to inflammation, but we shall see. The doctor, understandably, can not give me a prognosis regarding the sacrum situation.

Right now, I am having sacral pain and some appropriate pain at the incision site. I have only taken 2 tylenol thus far today. This is an improvement from my usual arsenal of pharmacoepia. I am using ice quite a bit,so my bottom resembles the frozen tundra minus the nice scenery. I will keep you all updated as to my progress.

THANK YOU TO EVERY ONE OF YOU GUYS!!!!

Jackie Minghinelli

P. S.

I stayed at the Raddisson near the inner harbor which was quite reasonable, clean, and nice. They even reimbursed me for cab fares to and from Johns Hopkins. I definitely recommend the hotel. It also has a gym for the less disabled guest that might accompany one to the hospital.

Update, 2006-04-23:

Hello again,

It is now 45 days post-op, and I am not doing well at all. I still can not sit, and my sacrum area and right buttocks side hurt quite a bit. I am taking 2 2 mg dilaudid daily. It is difficult not to get discouraged. I am hoping and praying that the healing will come. Right now, I am worse then before I had the surgery, because at least then my pain was brought on by sitting. Now, I just have pain, period. Some days are better than others, but each day there is pain.

If I am not markedly improved in one month, I will return to the surgeon. My wound looks good, but the pain that emanates from the sacrum area belies my wound's appearance.

One contributor to the site told me that she became worse at the 6th week and then got slowly better. I am hoping that I will do the same. It is the not knowing that adds to my frustration. If I knew that I would definitely improve, I would be able to manage this a bit better.

At any rate, I will update again in about a month. Hopefully, I will have good news!!!!!!!!!

Jackie in NY

Update, 2006-05-21:

It is May 19, and I am definitely doing better than last month. I am now at the point where I am better than before the surgery!!!!!!!!! I can sit for a few minutes!!! I thought the day would never come. I would definitely do it again. The recovery is long, but to be able to sit and eat is absolutely a miracle. I still can not drive or sit for any real length of time, but the few minutes of sitting that I can do................... is an absolute blessing!!

Advice: Please get an experienced surgeon. The coccyx area contains many nerves and muscles. It is not an area for inexperienced practitioners. Please feel free to email me with any questions.

GOOD LUCK TO ALL AND THANK YOU JON!!!!!!!!!!!!!!!!!!!!

Jackie in NY

Update, 2006-12-17:

Hello Jon and All of You,

At 9 months post-op I continue to have major issues with sitting. The surgery gave me the ability to sit for a few blessed minutes!! I am eternally grateful for this!!!

I still take meds, but there are days that I can do without them (as long as I don't sit too long). The area is easily triggered, and setbacks come more often than I would like.

The major differences between before and after the surgery:

1. I can sit for some minutes without meds. This was impossible before the operation.

2. The coccyx area and right sacrum area are very vulnerable. These areas will hurt post-sitting or when I have walked and combined walking with sitting in a 24 hour period.

3. I still can't drive from one town to another without pain. I continue to ride around in the back of the car while my husband drives. I was unable to drive at all prior to the surgery. I can now do a very few minutes.

Some things that help:

1. Being relatively still and staying in bed (sometimes for a week or more) until the pain lets up.

2. Massage in the coccyx area

3. Meds - dilaudid, ibuprofen

I am not having a good day today. I am standing to type this. Still, there are some days when I am almost ok. I live for those days!!!!!!!

Positive thoughts and wishes to all of you!!!!!!!!!!!!!!!!!!

Jackie from NY

Update, 2011-01-16:

I just wanted to say that I just tried a variation on a yoga position that helped. Although my surgery was 4 years ago, I still have major issues with pain. I would still have the surgery again because the problem is better than before surgery, but I did have multiple issues in that my sacrum is bent more forward than most people. At any rate, I was just in excruciating pain.

I lay on the floor on my back (lumbar region touching floor). My knees are bent. I turn the knee on my painful side in toward my other leg so that the knee/leg I am moving faces the inner side of my other leg. It seemed to help a lot.

I am still not giving up fighting this. What choice do we really have?

BEST WISHES TO ALL OF US!! THANK YOU FOR CREATING AND MAINTAINING THIS WEBSITE!!!

Jackie

Update, 2012-09-28:

Hello Jon and Fellow Sufferers,

I came on this site years ago. I had my coccyx removed at Johns Hopkins, and I am glad that I did. But I also have issues with my sacrum.

I still have major issues with pain, but it is better than before the surgery. Often, I am relegated to riding around on a mattress in back of the car, but sometimes I sit up front and can take short drives. I am still on pain meds, but I would still have the surgery if I had to do it again.

Thank you Jon for all your hard work and dedication in helping others with this esoteric problem. It is good to find a place where people understand, and contribute useful information about the subject. During my search for relief, I found so few that really understood the very high level of pain that can be involved with the coccyx. You all helped so much.

Update, 2014-03-30:

In 2006, I thought I had a full coccygectomy at Johns Hopkins in Baltimore, Maryland. This turns out not to be the case. Over the last several years, I noticed a deterioration in my ability to sit (once again)! While I never fully recovered from the first surgery, I was better than before it. Over the last few years that started to change.

I went from doctor to doctor believing that the coccyx was REMOVED and eliminated it as a cause for my increasing pain, pain that is often now present when I am not sitting.

Recent MRI's and X-rays reveal that a substantial portion of my coccyx is still present. This totally shocked me. I contacted Hopkins in hope of having the hospital redo the surgery. Before contacting Hopkins, I had an injection of an anesthetic combined with a steroid in the sacro-coccygeal area. The injection eliminated my pain immediately. But unfortunately the relief was short-lived. This type of injection is often used as a diagnostic tool to determine if the coccyx is responsible for the pain. I apprised Hopkins of this in my letter to them when I asked them to see me for a possible surgical intervention. In a letter dated March 19, 2014, Hopkins replied to me with the following: "At present, there is no further surgery we could offer you." I found this reply appalling because without even examining me or viewing my recent radiographs, Hopkins rendered an opinion.

I am afraid that this problem now extends beyond the coccyx, and I wonder if the way the ligaments were re-attached has something to do with this since the right side pain has been an ongoing problem. I have had swelling that comes and goes on my right buttock. The swelling can reach the size of a small orange. There is also a grinding sound that sometimes occurs upon movement.

Since there are more medical options available now than before the surgery, I am considering endoscopic nerve ablation. If I had it to do over again, I would have made sure that ALL of my coccyx was removed and the bone above it shaved down.

THANK YOU JON FOR creating and maintaining this website. You have made such a positive impact on so many of our lives by providing information and understanding to a population whose pain is often written off as minimal or in our heads.

Update, 2014-10-19:

I thought I had a full coccygectomy at Hopkins in 2006. Some of my bone remains, and I was left with horrific pain.

In the summer, I visited Dr. Foye in Newark, New Jersey, USA (see Doctors and specialists in the USA, New Jersey). He gave me a ganglion impar injection. After a few weeks of initial soreness, I am now happy to report a great improvement in the level of my pain!!! I can now sit up for car rides, and can even ride the train with only minimal discomfort. The injection was quite miraculous for me!!! I pray that the results continue!!!!!!!! I have lessened my pain meds, and I am so grateful for the relief.

Thank you Jon and Dr. Foye!!!!

Jackie

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