Kathy - firstname.lastname@example.org
Two years ago I started having pain when sitting, especially going from sitting to standing. The Doctors have been very helpful I have to say and in September I had a cortisone injection. Now so far this has actually worked and taken the pain away, but the problem is that since then the bones in that region have grown, so much that now I have a boney lump sticking out which is making sitting very awkward indeed. My skin is breaking down in that area and I have been wearing pressure sore dressings to protect it.
The doctors are baffled by this and have no idea what it is. I had an MRI scan Saturday and am waiting to hear the result, but it looks very likely that I will have to have a coccyxectomy. I have read nearly all the stories on this site and have mixed feelings about the op. I have also learnt alot about it.
So that is my story so far, but I will update as and when something happens. If anyone has or knows of an experience similar, or has anything positive to add feel free to mail me.
Hello again, I last posted my story in February this year and since then things have moved on somewhat. The steroid injection I had in September has completely worn off and the pain in my coccyx is 10 times worse than before. I am in pain sleeping, on my back or my side, sitting is difficult although the worse pain is when I get up from sitting, sitting itself is sore but it goes numb after a few minutes. Its when I have to get up that the pain shoots through that area and sometimes its so bad I feel really sick. I have been given tramadol and dyhydrocodiene but neither do anything for the pain and tramadol makes me sick, dizzy and completely spaced out.
The strange thing is though that walking, exercising even dancing doesn't hurt, its the sitting/lying that's the problem. Added to this the sacral bone still sticks out the back and although the skin is intact again now I still wear a dressing over the area to protect it when I go in the car or sit for a while.
So I am booked in for coccyxectomy and filing down of the sacral bone on July 10th. I am so nervous about this but I don't feel I have a choice anymore. If the pain is as bad after, then I have lost nothing except a boney lump and a lot of dignity. There is in my mind a small chance that it will cure things but I have read too many stories of failed surgery to be too hopeful.
I am going to do everything I can to ensure things run as smoothly as possible. I have a raised toilet seat, I am on beta glucan tablets, I will take stool softeners after wards, I will sleep on my side after, I will not sit for at least 6 weeks after. Am I missing anything? I have read all the stories and taken advice from all of them. There is one thing, it seems in America that the thing to do is to pour peroxide over the incision, has anyone in the UK done this after the op? if so what did you use? and did it work? I am unsure as its usual to keep the wound dry, I thought. And I have never heard of antibiotic soap in the UK, again can anyone shed light on this for me?
Hi again, well I had the surgery, on 10 July 2007, am now 4 days post op! It was all very quick, the coccyx was completely removed, and the sacral bone chiseled down. I have a very neat 2 inch incision which has dissolvable stitches in and is very neat and clean at the moment.
As to how do I feel? Yes it hurts, but like an operative wound site would, it aches and is sore, but not unbearable. The worst thing is not being able to get comfortable at night, my hips and legs ache, so I feel very tired.
The things that are a godsend are 1. the raised toilet seat 2. bowel softeners!!! 3. my mum and husband who are looking after me very well 4. this web site.
At the moment I don't regret having it done but time will tell. I haven't even tried sitting, would be stupid to go there, going to the toilet is bad enough.
If anyone wants to ask me anything do email, will be only too glad to help. I would write more now but am standing over the computer and is very hard work!
I have only just realised that I had the same surgeon as Jon Miles, Mr Wilson- Macdonald in Oxford! (see doctors and specialists in the UK) I cant believe I hadn't realised that before! As I said in my last email, he removed it on July 10th and I am so glad he did. He did say he had not done many of this op type before but so far I think he has done a brilliant job. I am 19 days post op and the wound has healed up really well (so far anyway). It is only about 2 inches long and very discreet, in fact when I stand up you cant even see it.
I am still in alot of pain at night and am on slow release morphine, but during the day I function pretty well. I am sitting at the moment on the edge of the seat, and I will ache when I stand but no worse than before. I can walk, and bend only with minimal pain. I feel so much better than I thought I would.
Mr Wilson-Macdonald did say that the joint at the top of the coccyx was so degenerated that it need to come out, and he also excised the sacral bone because the surrounding tissues were so inflamed inside they had pushed my spine to one side and hence the "lump" we thought I had was actually the sacrum at an odd angle. The pain I now experience is from the sacral bone which, understandably, is sore from being "chiselled" ! I know this will take time to heal so feel quite satisfied.
Hi again! This looks like I have nothing better to do than to sit on this website.....not true, but notice I said "sit", I am SITTING! and I no longer get that agonising stabbing pain when I stand up!
6 weeks post op and I feel fantastic, I am back at work as Practice Nurse, I am driving, sitting (on my cushion of course), I am only on tramadol at night for pain.
My pelvic muscle has regained all sensation and bowels are working normally with stool softeners every 2 days, mainly as the tramodol is constipating.
The incision is so faint you can hardly see it. I cannot believe that I have gone through all this so unscathed. And what I want to say to people considering this op, don't write it off before reading my story. I went to hell and back trying to decide whether to have the op or not, and I have to admit at week 3 post op I did despair and wondered if I had done the right thing, as firstly the pain was untrue, and secondly I had no feeling in my pelvic floor at all! I was on high doses of morphine and felt like my life wasn't my own, however by week 5 I suddenly turned the corner and now feel "normal" again. I wont lie, I do have an ache in the tail area still and at night sometimes it is hard to get completely comfortable but I know this will get better and better, bones take a long time to heal and mine was hit with a hammer and chisel! So this op can be a success and I would do it again without hesitation!
Hi. Well its almost 5 months since my coccyx was removed and my sacrum excised, and I feel fantastic, I have my life back, I am 100% glad I had the surgery. I am back at the gym doing 5 classes a week and the worst I get is the occasional ache for which I take paracetamol.
If I compare my life now to my life before, I would say before I was a 35 year old disabled person, now I am a fit, healthy 36 year who can do anything. Yes it was painful to have the op, yes the recovery took a little while but hey, I can sit now on a hard chair and the most I suffer is a slight ache after a few hours!
I am ecstatic, I would promote my surgeon 100%, and if anyone wants to ask anything just mail me. Oh and thankyou soooo much to Jon for this wonderful supportive website.
Just want to update as to how things are going with me. I log in every week still to read the new stories that Jon has posted and I feel continually sad that there are so many people suffering from this and so many Doctors who have either denied there is a problem or who have washed their hands of it all claiming nothing can be done. There is a cure.
I am 8 months post op now, which I can hardly believe and I have a normal, very active life. I do exercise classes 5 times a week, lifting weights, step, high impact stuff. I go to cinema, ride a bike, everything that I could do before the operation. I get a slight ache if I sit for hours on a hard chair or if I haven't had bowels open for a day or two (sorry but that is fact!). I was back to an active lifestyle 15 weeks after the op, I had no complications and no regrets. The worst part was the 6 weeks post op, pain was bad, but it healed and I just want to say to people you don't have to suffer and learn to live with it, there is an answer.
I just feel for people who live in an area where there is no one willing to perform the op. I know how hard it is to live with a painful coccyx.