Considering surgery (now had it)

Tom in Switzerland - tlk3187@yahoo.com

Original posting, 2005-10-16:

I have been reading this forum for quite a long time gaining comfort that I wasn't alone.

Almost 4 years ago I was playing with my daughter on the floor when I realized that my tail-bone was sensitive. I didn't think much of it at the time but noticed that the pain never went away. It wasn't bad but rather a dull ache in the area that would come and go depending on how much sitting I did. I figured my chair at work was the culprit and immediately put some foam supports in place. No dice, still pain.

My general physician did the usual round of external and internal inspections to narrow down the list of possible causes. Luckily we concluded that it wasn't anything death harrowing but rather probable temporary or permanent damage to the coccyx. We took some X-rays but they showed nothing definitive. After trying the various pain killers and watching for improvement (neither of which had much effect) we decided I'd see a orthopedic surgeon and also a chiropractor. The chiro took x-rays as well and concluded that he couldn't do anything for the coccyx so that ended that. The ortho said we'd have to give cortisone and time a chance before we considered the next phase of the journey which would probably be removal of the coccyx.

That was 2.5 years and 6 injections ago. My first two injections did good work for about 6 months then I needed another. All the others since then have had diminishing effects. The last one I got was on July 7, 2005 and by early August I was in pain again. On to the next plan.

I met with my ortho doctor last week and we reviewed the pro's / con's of surgery. Basically, there isn't anything that he can put his finger on (sorry for the pun!) that is 'exactly' the cause of the pain. But, he has concluded that since the pain was relieved - albeit temporarily - by the cortisone and the fact that he can touch 'initiate' the pain by pressure indicates a problem with the coccyx. Sometimes defining a problem is more about probabilities than a exact diagnosis.

My pain is pretty simple. It hurts to sit, hurts more going from sitting to standing, makes my legs hurt (general lower back and leg pain), and makes me a bit irritable. I am often at my desk but need to stand quite a bit, especially in meetings which I always a little awkward for other participants as I start doing various strange moves to stretch my back (now there's a visual). I especially have quite a bit of pain in the mornings when I wake.

I have to call the doctor next week to book the surgery but wanted to ask more info from you experienced surgery folks and others who have benefited from 'other' treatment. Would anyone who had surgery not recommend it? Has anyone tried anything else that has worked? I feel like I'm sitting around going 'do it', 'don't do it,' regarding surgery. Unfortunately, I don't see many options.

I am an American that lives in Switzerland. Our healthcare here is quite good. The ortho doctor said he's done about 20 of these operations and seems to feel quite confident in the results. The word is he's one of the best in Switzerland.

Update, 2005-11-13:

Since I last posted I have scheduled my surgery for December 12th. I have come to the conclusion that after 3.5 years of pain there is not much point in 'hoping' things improve. I have two choices, live with the pain or have the blasted varmint taken out.

I spoke with my general physician this morning about the surgery and the need for another opinion. He has recommended that I go to a specialist clinic in Zürich to see a professor who might have some input. I'm now waiting for that appointment which will probably be 3 weeks out. My guess is he's going to recommend the surgery as I haven't seen anything on this board or anywhere else that shows a long-term solution to coccyx problems.

I certainly don't want to have the surgery as I would rather not start removing parts from my body and the recovery time is waaaaayyy to long for my liking. Well, accept it or do something right? Right.

Update, 2006-01-08:

Hello Everyone,

I had my coccyx removed on December 12th and wanted to post an update. First, thanks to Jon for this site and to everyone who emailed me with recommendations and thoughts based on my earlier posts. You can't imagine how important this site and your feedback was to me in my decision and subsequent planning.

Prelude to Surgery

Two weeks prior to my surgery date (December 12th) something went from bad to worse. My wife had planned a weekend to Dresden to visit a friend which meant I had our 3 girls all to myself. I had planned a weekend of fun and goofing off with the girls but no sooner had my wife's flight departed Zürich when my tailbone started aching - no, that doesn't describe it - it was excruciating. I have had bad pain for over three years but this was something new. By the next morning I could barely get out of bed but certainly had to as my 1-year-old was up and I had a 3-year-old and a 7-year-old looking for my promised 'Bacon Overdose Breakfast.'

I have heard and read comments from people as they describe their pain as 'excruciating' and I always thought, "yeah, it's bad but I'm not sure it's excruciating." Well, I now know how these poor folks felt because it was the true definition of excruciating. Well, I survived the weekend (and so did the kids) but was definitely looking forward to my surgery.

Surgery

I was scheduled for surgery on Monday, December 12th at 0730 hrs. with my Ortho doctor - Doctor Hüber from Kanton Spital Aarau (see list of doctors and specialists in Switzerland) - scheduled to do the surgery. In Switzerland it's common to check-in on a Friday and stay the weekend until your Monday surgery. So, on Friday they officially checked me in, showed me my room and how to operate all the gadgets, took new x-rays, and reviewed my eating options. It was like I was checking into the Hilton.

I decided to leave until Sunday night which I was allowed to do. On Sunday I returned and was told not to eat or drink after midnight which was no problem.

The next morning my wife was supposed to come at 0700 to 'see me off' so to speak. Unfortunately the nurse came in at 0630 and said, "get ready, you're going a bit early." So, by 0645 I was being carted off through the maze of tunnels that run underneath this state hospital.

I was taken to prep where they completed some paperwork, inserted an IV, and prepared the anesthesia. Interestingly, they also checked for the big arrow made with a large Sharpie that they had drawn on Friday. It's an interesting way of confirming they are operating on the right part.

The anesthesiologist then said, "count back from 15." Now my friend recently had surgery and said he was out at 12. Well, I started getting worried when I got to 8 and the last thing I remember thinking was, "I don't think this stuff is working." Poof, out.

I woke up in post-op at 1000 and fell in and out of sleep until 1100 when I was taken back to my room. There I was hooked to an IV with pain killers and whatever they use to keep you hydrated. My blood pressure was a bit low but aside from that all was fine. I spent that entire day in and out of sleep while they drained about 4 bags of solution into me.

They told me to pee in a canter which I felt no inclination to do so I decided to get up and hit the toilet. That was about 6 pm. It was no problem but I can see how it might not be very comfortable for women on that first day unless they have a very elevated toilet seat. I then spent some time that evening walking around a bit.

On Tuesday I again walked around as much as possible. I was expecting more pain and more difficulty in walking but it wasn't bad. I also expected more pain getting in and out of bed but again that wasn't bad either. I couldn't sleep Tuesday night so at 2 am I walked out and talked to the nurse who asked me if I would like some wine. I couldn't believe my luck so naturally I requested a nice California Cab and spent an hour drinking two glasses of wine and speaking with the nurse who wanted to practice her English a bit.

I could have gone home on Wednesday but the big test of tests for release is the BM which I had no luck with on Wednesday. So, I gorged on whatever I could eat on Wednesday and prayed for (as my Grandfather used to say), an "early morning whistle stop."

On Wednesday morning I powered down coffee and 15 minutes later triumphantly announced to the nurses that I had completed my mission. I was on my way home 2 hours later with my wife at the wheel and me lying in the back seat with a pillow. Again, not as bad as I had thought.

When I arrived home I couldn't help but to hold my 1-year-old which I had told myself I probably shouldn't do right away. Parents will certainly understand how hard it is not to hold a 1-year-old who just about leapt out of my mothers arms when she saw me (luckily my mother flew in from Michigan on the 11th to help my wife and I).

I was able to take stairs without pain on that first day home. I was also able to sit briefly with a nursing pillow underneath. I also didn't take any pain killers that first day home and have only taken them twice since that first day back.

I basically laid low for the first week. I had water-proof bandages which allowed me to shower which I did every other day (that drove me nuts since I need a shower first thing in the morning to clear the cobwebs). My mother is an R.N. so she changed the dressing each day and checked the progress of the incision.

By the way, the incision was in the shape of a V with the long parts being about 1.5 inches in length. The incision was held by 8 stitches which seemed to me to be big enough to secure a large yacht on a stormy day. These things were more like ropes than what I normally consider to be stitches. I didn't experience any bleeding or problems with the incision. The only thing you have to take care about is in the bathroom where one should be conscious of the 'poo/open wound' incompatibility. I would highly recommend bum wipes that they sell here or use wipes that you would normally use on children as a 'clean-up' after doing your business.

After the first week I started taking 1 hour walks, sitting regularly with padding, and bending over farther each day. I really felt good.

On the 27th I had my stitches removed which I was quite nervous about but turned out to be a no brainer. On the 28th I got sick and tired of being in the house and so I got in the car and drove for 15 minutes. I used a neck pillow that I had once bought in DFW. It's stuffed, is cloth, and works great for tailbone pain. I put that on the seat and then pushed up with my left leg so that I wasn't totally resting on my tail. Wasn't bad at all.

I returned to work on the 3rd of January. I am working the hours that I can which is between 4-6 hours per day. I am walking as much as possible and keeping meetings short which are probably both blessings in disguise. I also plan my day much better and am more efficient because I know I'm working less. Luckily I have the flexibility in my job to do what I'm doing.

Here's a summary and some pointers for anyone in this situation:

  1. It took 3 years from my first consultation with my doctor to my surgery. It's important not to rush to surgery unless your doctor is sure that your coccyx is the problem.
  2. Make sure your operating surgeon has done at least 20 operations and ask him about the success rate.
  3. I believe that staying in shape by exercising and keeping limber is important, particularly in the 90 days leading up to your surgery.
  4. Walk as soon as possible. Force yourself if you have to.
  5. If you can stand the pain don't take all the pain killers. Many of the pain killers have morphine in them which can lead to other issues.
  6. Get a raised toilet seat. You may only need it for the first couple weeks but man does it save your bacon in the early days. I stopped using mine on January 1st.
  7. Have your partner sleep somewhere else for at least the first 2 weeks. You need all the room and comfort of your own bed. For me this was huge and my wife was gracious about it all.
  8. Obviously, have enough bum cushions around.
  9. Plan on wearing your sweats or P.J.'s for the first couple weeks. I'm still not wearing jeans or even remotely tighter fitting clothes.

All in all I am 100% satisfied with my results so far. I do know that the pain I normally had from my tailbone is gone. I know this because I could always trigger my tailbone pain by squeezing my bum muscles. That's now gone. The only pain I have is the expected pain of having had a part of your spine removed and the incision pain.

If anyone has any questions please feel free to email me at tlk3187@yahoo.com.

Regards,

Tom

American in Switzerland

Update, 2006-04-15:

Hello to everyone. I am now almost 4 months post-surgery and wanted to leave an update.

After initial euphoria regarding my surgery I have settled down into the realization that it will in fact take longer to rid myself of this pain. My surgery went excellent, my first 60 days were much better than I expected, but now I am not pain free. I should have expected that but I was perhaps overly optimistic.

The pain I have feels like incision pain coupled with general soreness. Some days are worse than others but there is a general consistent pain around the incision. I visited the surgeon a couple weeks ago and he cautioned me not to be too concerned as he said it may take 6 months to a year for this current pain to recede.

That being said, I am in much better condition than before surgery. I have the pain but can do almost anything. I am back working out, riding a bike, and flying for business. I still need to stand up every hour or so which can be a bit dodgy during meetings but then again it's a great excuse to keep myself from falling asleep. I am not taking any medication at all and have basically ditched all pillows and other sitting items.

All in all, not bad.

Strangely, I do have a couple issues that have cropped up but I am not sure that they are related to my tailbone surgery. My feet and lower legs seem to be 'tingly' more than they were in the past and I believe that I have a problem with my sciatic nerve in my right leg. I feel dull pain in the back of my right upper leg. The doctor has checked for the usual suspects but found nothing. Blood tests all look good so whatever it is appears to not be life threatening (famous last words). The surgeon doesn't see any relation to the surgery.

Given how I feel today and the pain I was in I would definitely do the surgery all over again, without a doubt. Another thing that can't be overlooked is the improvement in my general health after stopping the cortisone injections. I had cortisone injections for almost three years and noticed a decline in my general health. Maybe it was happenstance, maybe it wasn't. But, since stopping the cortisone I have had no health issues to speak of. I am glad I stopped the injections.

Again, thanks for everyone who has contributed and to Jon for the site. Always glad to answer any questions from those who have a similar pain in the butt.... (the jokes are endless!).

Regards,

Tom

Update, 2006-11-26:

Since my 1-year surgery anniversary is approaching on December 12th, I thought it a good time to post an update to my progress.

In short, I would have made the decision to have the surgery again and again and again. I have not had a moment of doubt that the surgery was the correct decision and the quality of my life reflects that thought.

One year later I have no 'normal' pain in the coccyx region. I will occasionally have a pain there if I am sitting too much but the period of sitting time has to be quite abnormal. For instance, if I fly internationally I sometimes have a bit of a pain but it's quite manageable.The fact that I can sit on an airplane at all without a backpack of cushions, pillows, and other paraphernalia is a true testament to how far I've come. Prior to the surgery just making my 15 drive to work was an exercise in pain management.

In retrospect, it's amazing how much that darn tailbone effected my life for several years. You just don't realize at the time how depressing all that pain can be and how many events in your life are managed around that pain. I am so glad to be rid of that.

I realize that surgery is a bit drastic for many people, nobody likes going under the knife. But, having your coccyx removed by a reputable surgeon is the difference between constant pain and getting your life back. You just have to make that decision and get it done with. Otherwise, the quality of your life is dictated by a little bone on your back side that no-one needs anyways.....

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