Waiting for surgery, terrified - now had it

Sara, UK - fraggleina@hotmail.com

Posted 2017-10-15

Hi, I'm Sara, I'm 29 and I live in Halifax in the UK.

I've been suffering with pain in my coccyx since 6th Feb 2015. I think I need that date tattooed on my arm because it changed my life forever...

I was due to work a night shift (I'm a midwife) and I started with pain and a swelling in my lower back, but I put up and shut up and stuck a hot water bottle down the back of uniform pants and went off to work. By midnight I was howling and by 2am I was driving home practically laid flat in my car. That marked the start of 9 month absence from work. I practically lived laid on the floor during this time due to how much it hurt, and trying to tidy up the house by picking things up with my feet!? My GPs kept telling me the pain would go away but in reality over the next few weeks the pain focused intensely down on to my coccyx. After 4 months the "Good GP" finally diagnosed me with coccydynia. I had a name!? What I had had a name?! It was astounding how much better having a diagnosis made me feel. Someone had believed me and now I could explain it better to others too. I had an x-ray which reported no abnormalites. I later discovered after a heated discussion with yet another GP (you can never see the same one twice!) That the x-ray did not in fact even mention the coccyx and therefore it was unlikely that it was visualised as a sacral x-ray was requested.

I was now living off diclofenac, paracetamol and codeine. I had been started on and discontinued amitriptyline and then started gabapentin. I had been to pain management clinic for a injection under x ray which only made my pain worse.

My lovely long suffering husband found this website and through it I found Mr Rao at the LGI in Leeds and asked for the referral (see Doctors and specialists in the UK, West Yorkshire).

This seems to be a massive moan about my GP, and it isn't, but I was treated circa 1800 and like I had hysteria and not a real pain. In the end it was through an acquaintance at work that I managed to get an unofficial referral and much sobbing down the phone to his poor secretary that I managed to meet Mr Rao within a few months. He listened to me, took me seriously and made me feel like my input was welcomed and acted upon justly. I had repeat MRIs and x-rays that were still inconclusive, which is some ways is a relief but in others massively frustrating!?

To date I think I have had 4 injections and manipulations under GA with Mr Rao and one injection under CT guidance. The first of these eased my pain for a few weeks but never for rid of it, and since have been less and less successful. They have helped me to get back to work but I have had to reduce my hours significantly and my job role. The final injection under CT actually increased my pain significantly which is apparently a strong indicator that I definitely have a mobile coccyx. We have therefore decided after 2 and a half years that surgery is my only option.

I am terrified.

I have read just about every testimonial on here for removal and all the good experiences and also the bad. It's such a personal surgery there is no guarantee of success. I'm 29. What of this is my lot? What if I'm about to make it worse!? Iím on the list so should go in in around 3-6 months, but I may get called in for a cancellation. My life is indefinitely on hold.....

The whole process has been incredibly depressing and isolating. I suffer from panic attacks and anxiety as I cannot trust my body. I used to be very sensitive about my coccyx cushion but now it is a part of me and I think people need to know that coccyx pain IS a real thing and no, I really wouldn't like to take a seat thank you...

I plan on updating this as things progress. This website has been a great help and I hope my story might help someone else. I'm open to any questions you may have.

Update, 2018-01-28

So it was September when I was put on the waiting list for my removal. As of now I still haven't got my date through. I've been a bit of a pain in the arse (BOOM BOOM!) for the theater teams as I keep ringing asking for an update. Due to the "winter pressures" a lot of planned routine procedures have been put on hold, mine included. So a very stressed lady told me its unlikely to be before March.

Nothing else much has changed. Its still painful. I'm off work due to stress as I can hardly make it through the day without a melt down over something! This website has been a godsend, I've had emails off some amazing people who have been a massive support. I'm so glad I wrote that post all those months ago.

S x

Update, 2018-04-08

So the story of me pestering the theater list teams continued.

I rang the very upset woman about every 2 weeks, eventually breaking down in tears on the final call in February. She agreed that as coccygectomy is a relatively short procedure (about 1.5 hours) there was a chance that they could squeeze me in on a list but it would not be happening before April. The next day she rang to say she had spoken to my surgeon (Mr Rao) and he had agreed to put me on his list for 2 weeks time?! Thankfully because we had known this would eventually happen we had made our bathroom accessible for when I couldn't move much so all we had to do for those 2 weeks was squeeze a short trip away before I became house bound and pack my hospital bag.

I went in on March 12th, remarkably calm. As I've said before I have massive panic attacks very easily these days, but it felt a little bit like "I'm here now" and what would happen would happen. I had been on this particular day-ward before for one of my injections and manipulation under GA so I recognised some of the staff, and they recognised me (I have distinctive hair...) which was massively reassuring. Being a midwife at the "other" hospital in this city there was always some banter and laughs at my expense, but it was like a comradery that I needed and was incredibly grateful for!

I was consented by a different surgeon to my own, which I was fine with but he had suggested if everything was ok I would be home that evening?! Thankfully Mr Rao came to see me before surgery and reiterated I would not be going anywhere before Wednesday, and he would pass this on to his colleagues as he was actually on leave after this day. As it turned out I had to argue each day on ward round to remain an inpatient, most people want to leave hospital ASAP and I was fighting to stay?! he had also suggested I needed to open my bowels before I could leave but that plan was changed in his absence.

I went down to theater at around 10.30 am and I think it was some time after 1 pm when I looked at the clock in recovery. I was in a massive amount of pain so had to have a few extra doses of IV morphine which lead to me staying there until 3 pm on oxygen, which continued on the ward. I remained on the same ward the entire time I was in hospital and as I've said before it was a day-ward for surgical cases, but due to a bed crisis it had been opened up as a proper inpatient ward for the surgical cases they over saw for a short time. This did mean that they were busier than usual. I'm not complaining, I've been that member of staff, but my first mobilisation out of bed and to the bathroom was actually just assisted by my husband (my poor, long suffering husband). Probably due to the morphine he did have to practically carry me some of the way and it was a little bit traumatic; lets just safely say I'll never forget it, but we work well as a team and powered through. But the seal was broken then and I made a conscious effort to get off the bed and walk about at least every 1-2 hours during the day, starting from just going around the bed and back to eventually walking up and down off the ward by the Wednesday. I always made a point of walking to the nurses station if I needed analgesia, not something everyone can do I know, but I took a little bit of pride only pressing my assistance button once during my whole stay. This did result in me crashing back on the bed sobbing quite a few times when the pain was so bad, but pride made me want to do the walk each time.

Mr Rao popped up to see me before he left for the day on Monday evening and said that the initial plan had been to just remove the mobile segment of coccyx, which he had predicted would just be the tip. When he got in there I had a 4 segment coccyx, with the 3 nearest the tip being hyper-mobile and the 4th "very unstable" so the whole thing came out, hence the slightly longer than expected surgery.

I've always been very sensitive to codeine, even a sniff of the stuff can make me constipated, so from the Monday I was begging for lactulose and fybogel to try and avoid any problems. Instead of prescribing what I'd asked for a kind Dr struck off my codeine and I was expected to live on paracetamol and ibuprofen (someone give me a break!?). So by the time I had hammered the oramorph as much as I could and complained that they were effectively torturing me it was eventually put back on for me and the fybogel turned up. It's been 2 weeks since surgery and I am still struggling to open my bowels, which I expected. Fybogel, lactulose, water, fruit and mobilising plenty are my main weapons but I have had to give myself an enema quite a number of times to help things. Today, 16 days later, has been the first day I could open my bowels without an enema or screaming. I take that as a win. Passing urine has been an experience. Due to the pain its very difficult to sit on the toilet, let alone relax. And you actually push a little when you wee, whether you know it or not, which makes your bottom really really hurt! So I'm quite confident for the first week or so I was definitely in a little urine retention as I couldn't effectively empty my bladder. As the pain is settling this is definitely getting much easier.

I eventually went home on the Wednesday evening. We put the seats down in the back of the car and I laid on my front propped up with pillows. I 100% couldn't have got home any other way.

I know I have been incredibly lucky. So far I have had no infections. My dressing is off and you can hardly see the incision site. I'm eating and drinking ok, reduced appetite due to painkillers. I can pass urine ok but the bowel issues continue. I have managed to half my codeine use, I'm now on 120 mg per day rather than the maximum 240 mg and I haven't had to use my oramorph in the last 4 days. I can now walk up stairs like a normal person, albeit a lot slower than a normal person. I can't sit and I can't bend, certainly can't crouch. But its only TWO WEEKS, 16 days, since I had the surgery?! And although I still get pain its not as bad as my worse pain caused by the coccyx when it still lived in there. My family and I are all waiting for something to go wrong. I'm not pushing myself, all these things are just coming so easily. I've read everyone's stories on here, surely I'm due a wound breakdown or something?!

I think that's it for now. I'll update again in a few weeks. Again, thank you for all the support this page has given me, and the recommendation for Mr Rao as I would never have known about him if it wasn't for this page and he has been and Angel all the way through this journey.

Update, 2018-10-14

A couple of people have messaged me from here asking how things have gone since the surgery so I thought I would do a little update.

So this week I am 7.5 months post surgery. Yes I am counting down! And I am doing fabulous, thanks for asking.

My dressing came off 2 weeks after the op. I had a small hole at the base of the op site, which got me quite panicked. I had convinced myself I was going to get a wound infection or my stitches breakdown as I had read so many bad stories. A quick email to my consultant and a visit in the back of the car to Leeds it was confirmed the hole was only from a knot in my suture and was healing fine. Mr Rao was right and about 3-4 weeks later it was gone. I was showering each night and very gently wiping the area (from top of bum crack to the bottom!) with gauze to keep it clean. I was fiercely independent so showered myself and dressed myself, but struggled pulling my pants up for about 4 months and my husband did have to wash my feet in the shower! I still get some pain in the wound site when sitting on the toilet, which was always my safe space before the surgery, but its like a 2-3/10.

I would say each month Iíve noticed improvements, both in the amount of pain and what I can manage to do by myself, with 6 months being the ďIím doing really well!Ē mark. My pain management peaks and troughs. Some weeks Iím fine and donít need any analgesia, other weeks Iím pounding whatever I can get. Iím still avoiding codeine where possible, so itís mainly Naproxen 500mg twice a day and paracetamol. Iím able to walk, fairly indefinitely without taking large strides and taking my time. I have to keep reminding my husband to slow down though. I still canít sit too well. I can manage short bursts on a coccyx cushion if Iím leaning forward but I have to be stationary. I canít tolerate a jostle or a bump such as if I was in a car. If I travel in the car I have to recline the front seat and lie on my side with a pillow between my knees. When I last saw Mr Rao (beginning of August) he was concerned I wasnít able to sit much, but then agreed that as they had removed the whole coccyx he wasnít surprised. Personally I think itís because the scar tissue wonít stretch yet.

Iíve started a personalised Pilates programme from my old instructor this week and Iíve noticed a few things:

1) My pelvic floor control is pretty good still (but Iíve always done my exercises so Iíd hope so!) but the control of my back passage is not what it used to be. I havenít had any accidents but trying to contract and lift it causes me to pull some pretty funny faces.

2) Just how much pain doing even the smallest exercises causes me. Iíve definitely struggled more this last week and have to take much more painkillers than I had before. But itís all in the name of getting betterÖ Iíve lost so much muscle in my back and my bum, both from adapting the use of both pre-and post surgery. I think part of the reason I havenít had so much pain recently is because I havenít done much other than baking so I have a lot of work to do.

3) Now this one takes a little bit of imagination. One of the movements I have to do is visualise my pubic bone at the front of the pelvis and the tip of my now non-existent coccyx drawing together as part of a pelvic floor lift (I did say to use your imagination). However, when I do this I am hugely aware that something is missing back there. Like there is a hole. I donít think itís because obviously Iím missing a chunk of bone and my brain knows that and therefore I canít visualise it. I think it genuinely feels weird, because thereís a hole! Itís going to take some work that one I think. I think this is why my back passage feels weaker, because the anchoring spot for those muscles isnít there any more.

Iím still currently off work as I canít sit so canít drive and my work is a 35minute drive away (on a good day). I had told them from the beginning I would likely need 12months recovery. I didnít know how long recovery would take and I had read peoples experiences which ranged from 6-18 months. My job is physical and I donít want to compromise the safety of myself of my patients so Iím not going back until Iím confident I wonít hurt myself or cause any damage. This is becoming a bit of a bone of contention with my employers, but after 4 years of putting up with this problem I want to make sure my health is first.

So usual parting message. I am happy to answer any emails or questions people have. Iím so grateful to this website and the help Iíve received. Iíll update again in a few months with how things are improving.

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