Wow how time flies! It has been some time since I have given an update, so I wanted to share with you how I have felt since I had my tailbone removed 22 months ago.
I still consider the surgery a great success, but honestly I still have pain everyday. I am still under the care of a pain management physician and there are days I am really miserable and some days I stay comfortable for most of the day.
The pain levels are nowhere near the pre-surgery levels, so in that regard I certainly cant complain. So when I have bad days I just remember how I used to feel. On my worst days pain levels can be about 60% of my pre-surgery days. On good days, pain levels are as low as 20% and luckily I have more of these days than the former.
I find that being able to stand up and walk around is very critical to my comfort levels. If I am confined to one space for more than 30 minutes then I become very uncomfortable. Traveling in an airplane is the worst case scenario for me and is almost unbearable and does approach 100% pre surgery pain levels.
I am investigating some options such as nerve ablation using radio waves frequency and looking at the possibility that the muscles that were reattached may have been done so incorrectly.
Current medications are Nucynta and Cymbalta.]]>
An excellent support group can be found on Facebook. The Coccyx Pain Support Group is a private group created by Elizabeth Kathryn Hobbs and includes an active membership. Just visit the link and request membership.]]>
Ive been pretty quiet lately, because my recovery has been doing really well. Well, until recently when the the surgical scar tore open. So now Im back to being very vigilant against infection which is always the biggest concern following surgery. My pain levels have been acceptable, and each month seems to be better than the previous.
I still see my pain doctor, because Im not 100% pain free, though the pain I feel is certainly better than prior to surgery. I am currently taking gabapentin, imipramine, and Nucynta. The Nucynta is a relatively new medication, which is usually best described as a much stronger tramadol. Its considered to be an opiod, but the side effect profile is more tolerable. Im glad I have insurance, because the Nucynta would cost me close to $600 per month! I am able to sit in my office all day without too much discomfort since Im able to get up and walk around as needed.
The worst pain is experienced when Im flying or driving, both scenarios where I am unable to get around and walk much. Of course the pain of the incision is pretty significant right now, so once I can get that healed, my pain doctor and I will discuss next steps, which could include a nerve ablation.]]>
Misha, one of the visitors to this site, shares this story:
“In 2000, I went to see chiropractor for knee pain. She did some kind of manipulation where she injured my sacrococcygeal ligament. I used to have pain in coccyx on and off .I had some steroids injections that helped till 2010. In March 2010, I had severe tail bone pain. I was not able to sit at all. I had all the conservative treatment ( medication, Injections, Ganglion blockers, Prolotherapy, PT- manipulation). I finally decided to go for coccygectomy in 2013( May) after trying everything else. My surgery has not been successful so far. I am four and a half months post op ( 18 weeks). I have severe Gluteus Maximus pain on left side radiating to the left leg. Lately, it has started affecting my right side as well. My MRI of the back is normal.I am so frustrated with my life right now. I have been suffering with this pain for the last three and a half years. I thought surgery would get rid of it but I guess not in my case.I did lot of research about coccygectomy. Majority of patients have felt better after surgery. I have pain (10/10) everyday. I cant sit or stand not lie on the sides because of gluts pain. I have gone to so many doctors before surgery but they had no answer. I spoke with my Surgeon and he said that I should go to Physiatrist (Pain Doctor) and do Physical therapy. I went for PT for 8 weeks but did not help. I am taking medication which helps for some time but then goes back to level 10. I dont know what to do??? This has crippled my life. I am very depressed. I need HELP to get rid of this pain so that I can move on with my life. I have put everything on hold right now my studies, my job, my single life.Ahh, I feel like I will never get rid of this pain.”
Any comments or suggestions for Misha would be very much appreciated.
I had someone email me today who is considering coccyx surgery.
Here are the specifics:
1. Can not miss more than 4 weeks of work, or job will be in jeopardy. Job requires sitting all day.
2. A previous injection provided some temporary relief.
3. MRI shows a bone spur, arthritis, and an extra long tailbone.
4. Surgeon says patient will have a two week recovery after the simple procedure to remove the tip of the coccyx.
My recommendation was to get a second opinion and not to proceed with a coccygectomy at this time.
If a previous injection resulted in some relief, additional injections or nerve ablation might provide additional relief.
A coccygectomy should be a last resort and only after injections have failed.
I am not a doctor, but I do know that I could not sit all day until approximately 8 weeks after the surgery. And given the fact that infection is one of the most common complications of this surgery, a two werk recovery seems so unlikely.
This patient has given permission to post this, and I would like to get recommendations from other readers of this blog.
What do you think? Should this patient have their tailbone removed knowing that they could lose their job if out of work more than 4 weeks?]]>
Well, its been slightly more than 5 months since having my tailbone removed, and Im still convinced it was worth it. My doctors visits are now every three months, so Ive been progressing well.
If I had to gauge my current pain levels vs. my preoperative levels, Id say I have about 80% relief right now. Ive been tapering off many of my medications, and the pain levels have increased. A month ago I would have said I was experiencing 90-95% pain relief. But I was taking more medication then. But Im determined to come off all the medication, and try to live with the existing pain as best I can.
The last time I visited my surgeon, he told me that the pain I was experiencing would be excruitiating to some people that didnt have the long-term experience that Ive had. But since I spent over 10 years in pain, the pain I feel now is tolerable. Before having my tailbone removed, every single time I would sit, I would hurt. Everytime I stood up, the pain was even more excrutiating due to the shift in my coccyx. And then for some reason, about a year ago the pain got progressively worse, so I knew had to do something about it. I was tired of injections, tired of doctors who think youre crazy, tired of people not understanding the suffering that someone with severe coccydenia is experiencing.
I knew the time was right when I found a new pain management doctor who just so happened to work right across the hallway from an orthopedic surgeon who had experience performing coccygectomies. Now. no looking back. Ive had approximately 30 pre-op and and post-op visits (between the surgeon and pain doc), so this surgery is nothing to take lightly. But if youre suffering, a coccygectomy could very well be the right move.
Id love to hear from you if youre considering surgery, or are recovering. There is very little information available on the internet, so I welcome comments and questions.]]>
After battling the insurance company for 4 months, and three appeals, my insurance company has FINALLY deemed my two day hospital stay following my coccygectomy as medically necessary. I went into this whole ordeal thinking my insurance company would be paying 100%, only to be sent a denial letter shortly after my surgery on the grounds that the hospital stay was not medically necessary.
The insurance company also denied the anesthesiologist, and thats still pending an appeal.
I needed bit of good news! For those of you expecting to undergo surgery to remove your tailbone (coccyx), be sure the insurance company has pre-certified your surgery and the hospital stay. Prior to my hospital stay, the insurance company told me they couldnt approve the stay in advance of the surgery, but they would be willing to review all records afterwards to see if it was necessary. I had to provide 180 pages of records including: surgical notes, daily nursing notes, and records from all of my previous doctors visits.
Now I can put this behind me (no pun intended) and focus on my health, and not my checkbook.]]>
It has been 9 weeks since I had my tailbone removed. I am happy to report that things could not be going any better. I had a follow up visit with my surgeon last week, and he was pleased enough with my recovery that he decided to move from a biweekly appointment schedule teo once per month.
My pain levels are comparable to my pre surgical pain levels, and there are some days that the pain is significantly less than I had before my surgery. So it appears that things are definitely moving in the right direction. I am back to work and Im sitting for much of the day without any serious complications.
The nerves are starting to grow back, and they are firing very angry signals sometimes. Sometimes I will just be laying in the bed and a sharp shooting pain will come out of nowhere. It feels like somebody has stuck s knire in my back. The good news is this pain will only last for a few minutes, and then it goes away. These episodes occur up to 5 times per day. The pain is certainly high enough to make me jump. But this is the only significant pain but Im really concerned about right now. But my doctor tells me this is a good sign because it indicates that the nerves are growing back and they are sending signals like they should pay.
I am now back to visiting with the pain management physician. We are working on tapering off many of my medications, and trying to find the right combination of medications that will control the pain that I am certain to feel over the next year or so. I was told that it will probably be about 18 months before I will know what the rest of my life will feel like. So for right now its just a waiting game.
My wound is still open. It seems like it will probably take another 2 to 4 weeks to completely heal. The wound is closing from the inside out so I have to be very patient. The risk of infection is nearly gone but I still cannot be complacent about my wound care.
All in all I am pleased with the outcome of the surgery and Im confident that I will have a complete recovery.]]>
Its been six weeks following my coccyx excision (coccygectomy) and Im happy to report that the visit with my surgeon went very well today.
My wound is still open by about 1/2 an inch, and its slowly closing from the inside. The doctor said that my wound looked the best hes seen since the surgery. There is no sign of infection, and he thinks it will take about another month to fully heal.
The pain levels are getting better, but Im beginning to experience a myriad of sensations near the surgical site. While I still feel pain 100% of the time, the pain is much lower while Im laying down and keeping pressure off the wound. I am still only able to sit for about 45 minutes per day, so there hasnt been much improvement in that regard. The nerves are beginning to grow back, and there are times where I feel as if someone is pushing heavily into the wound. This sensation will last about 5 minutes, and then stop, and the pain certainly makes me jump. Its not at all pleasant, but the surgeon said its a good sign that the pain will come and go, as it indicates the nerves are functioning correctly. He says he would be more concerned if the pain were constant, which would indicate an infection.
My surgeon says he is delighted that Im progressing so well, especially given the percentage of patients who wind up contracting an infection. I take up to 5 showers per day using a handheld shower head and I use Hibiclense to disinfect the wound. The surgeon told me to keep doing what youre doing.
Ive been taking photos of the wound, but have been reluctant to post on my blog, as theyre not fun to look at. Im happy to show photos via email, so if youd like to see, just use the contact me button in the main menu. However, I drew a picture of the wound, and have attached it to this article.]]>
Approximately 6 weeks ago I had my tailbone removed in a procedure known as a coccygectomy, or coccyx excision. One thing is certain: if you have a coccygectomy, youll be spending a lot of time laying around as you wont be able to sit for at least a month. I have spent about 95% of my time laying around since my surgery.
The first couple weeks were brutal, and luckily I had a surgeon who was not afraid of helping me control my pain. That, combined with my handy contour foam knee pillow, I was more comfortable sleeping and laying on my side. I bought my pillow at Bed Bath and Beyond, but these can be easily found on amazon.com as well.
I have read of people using a massage table that allows a person to lay on their stomach without their face being covered up. I considered such a purchase, but decided against it. In retrospect, I made the right decision I was able to lay on my side and on my back during the recovery without the need to lay on my stomach.]]>