Regret surgery, but what option did I have?!

Victoria -

Posted 2006-06-18

I am a 22 year old female who has suffered from coccygeal pain for what must be around 9 years now. To summarise, it all started when I sat on a British rail train seat that turned out not to have a cushion in, so I fell through to the floor. A few days later the pain was so excruciating that I couldn't even bend/lower myself to sit down, let alone bare the pain of the pressure when I sat. I sort medical advise and was told I had just bruised myself and not to worry. A week later and still not being able to sit (= rather difficult whilst trying to attend lessons at school!) I sort the aid of acupuncture in relieve the agony; however, although it made me able to get a little closer to a chair, I still could not sit in comfort. I returned to the GP and was instructed to lower myself onto / sit on a rubber ring and that in time the pain would go away...

A year later and still being known as the rubber-ring girl (!) I returned to my GP who this time referred me for a further diagnostic workup at the local hospital. I was not allowed to have an x-ray taken of my coccygeal area as I was a developing teenager and told they didn't want to expose my ovaries with radiation. Instead my sacral and coccyxgeal area were pressed and then without any advance warning (!), my coccyx was internally palpated; in response to which I almost hit the ceiling due to the shear intense pain I couldn't start to describe... and from that my pain was localised to be coming from my coccyx. Due the level and duration of my discomfort, I was book in to have internal manipulation in hope to re-align my coccyx and the injection of steroids (for their anti-inflammatory effect) under a GA. This procedure did ease my pain, well, for about 6 months, after which a milder version of the pain yet again returned, but with my GCSEs to study for and the advise that I really would "grow out of it" I just learnt to adapt (sitting on the side, avoiding sitting where possible, never going to the cinema) / except (the pain became like the norm for me) the pain for about the next 6 years, until...

Well I am now a final year veterinary medical student, and unfortunately in the summer of 2005, whilst on a placement at a farm, I was pinned up against a wall by a cow! I broke 2 of my ribs in the process and hit my lower back area against the wall with quite a force. I continued working on regardless as the life of a vet student is a little demanding/hectic to say the least and I couldn't afford to get behind on gaining valuable practice experience. Over the next 3 months the pain worsened, and I was now experiencing discomfort from the coccyxgeal region even when walking. The final straw was the hours spent on a chair at my desk in order to revise for my fourth year exams. I was almost crippled by the agony and it got to the stage that I could no longer sit on any chair; the most intense shooting pain being experienced on attempting to get up off a chair unless a rocked right forwards before standing up straight.

I "sat" (good fun I can tell you) my exams and thankfully passed with flying colours, but I had no alternative but to seek further medical advise. I was this time referred by my GP to a private, specialist orthopaedic and spinal hospital (mainly because I was told I would be waiting up to 2 years to see a specialist on the NHS!!). I was now of suitable age to have an x-ray taken and this showed my coccyx to be severely displaced, curling back upwards and the joint spaces to be so wide, it was doubtful if it were in one piece anymore. That very day I was just told (no discussion of my options) I needed surgery to remove my coccyx and I was booked in that very next week. I shall try not to go into my surgeons manner/shocking lack of communication skills in too much detail in this email but lets just say, knowing what I know now, I wouldn't go back to the same man!

My complicating factor was that in 3 weeks time, I was booked on a flight to New Zealand to work in a small animal hospital as a vet for a month. I organised the trip and bought my non-refundable ticket before my pain had got to such an unbearable intensity, so in my mind had to be on this 26 hr total duration of travel time (sitting!) flight somehow! My surgeon was aware of this and said this was no problem as long I had 10 days post-op before I flew. He seemed to confident (actually said there were "no complications" (I even challenged this comment at the time as there is always complication with a surgical procedure and that you wouldn't even be able to see a scar) and I felt I had no other option so I went ahead with the operation...

Unfortunately, my GA recovery was poor and my blood pressure plummeted to 70 over 40 (instead of 120 over 80) and although I had been given an epidural to lower the pain as I awoke, I almost couldn't move. That evening of my op I needed to go to the toilet, so a couple of nurses tried to aid my out of bed to the bathroom; as I stood for the first time a had a very dizzy spell and could feel something trickling down my legs. I soon after passed out to awake back on my with blood everywhere. I appreciate the area is difficult to bandage, but mine was next to useless and for some reason the sutured wound was oozing blood at a rate, from my professional opinion as someone who carries out surgery myself, that was unacceptable and suggestive that the site had been incorrectly apposed/sutured together. To my disgust, my surgeon said he was happy for me to go home in this state right away i.e. 10 pm at night... a nurse took him aside, and funnily enough I remained under observation and hourly blood pressure checks that night after all!

I was discharged from hospital the next day with a nappy strapped to my backside and with NO painkillers prescribed; just instructions to go and by some myself from a pharmacy!? I say no more about my faith in this doctor.

I did return home and remember putting my face into the sofa, backside in the air, crying my eyes out, thinking why on earth did I let someone butcher the end of my spine off! A week of hobbling around the house with my attractive nappy on my backside, I returned to see my surgeon for a check up. I told him how the wound was still bleeding as blood kept dribbling out the bottom of the padding and how I was in far more pain one week on than he had ever explained to me I would be. The bandage was finally taken off and a smaller pad put over it with instructions to leave it on for a couple more days then I could take it off and finally, finally have a shower!

I took it off and had a good look at my wound for the first time... I was horrified! The incision line was about 3 inches long with a gapping hole at the bottom of the wound either where a suture had blown or never been placed. I rang up my surgeon with my findings who assured me it would close within a week; that's fortunate I thought as it was exactly this time before I flew to New Zealand. I went back to see my surgeon 3 days before I flew as was not happy with the wound, it's constant oozing of blood/fluid and the pain I was still experiencing. Guess what... I was told I had an infection in my wound now and he advise me not to fly... fantastic!? I asked if it was the damage I might endure to my back if a flew that was the problem, to which he said oh no, you could do no long term damage, more that he was concerned about the pain the flight would cause me. I was told the final decision was up to me and he said I was actually "fit to fly"; I was given his personal mobile number and told to ring him the morning before I flew to tell him my decision. The day before I flew I went to get my haircut, and doubts at how on earth I was going to cope with having to sit down on a cramped plane for a day, when I couldn't even sit on the chair to have my hair cut!

It was a once in a life time opportunity and being a stubborn sort of a person I suppose and with the knowledge I could do "no actual damage" to my back, I went ahead. I thankfully managed to get a seat with an empty one next to it so could sit on my side with my feet up for the flight.

The day after I landed in New Zealand, I was working. The antibiotics I had been prescribed had come to an end but fancy that... I still had a whole at the bottom of the incision line. The pain was got worse and I had to go to sleep with heat pads on and always had to lie on my front. How I survived the trip I'm not quite sure, but somehow I made it home. I again made an appointment myself to see my surgeon who had another look (bearing in mind it's about 2 months post-op) and oh yes, the draining whole was still there = correct name is a "fistula". I explained how disappointed I was and how I was no more comfortable post-op than I was pre-op; maybe just experiencing a slightly different pain! Again, as I had an infection/abcess at the base of my spine I was put on a strong dose of antibiotics and was back working at my university. By the end of the 10 day course, the whole had thankfully closed as my alternative was going to my more surgery to debride out the wound and re-suture.

So here I am 3 months on, and how am I? Honestly, I'm starting to regret ever having surgery, although to be fair what choice did I have! I still can't sit comfortably for more than 5-10 mins and the whole area is painful to touch. Not happy, I went back to see my surgeon again who couldn't understand my discomfort so I was sent for an MRI scan; 5 days (appalling time to wait!) later I had to ring up to chase my result, which showed nothing more needed doing surgically to the coccygeal area but highlighted severe sacro-iliac inflammation on both side of my back. Over the phone I was prescribed some strong anti-inflammatories to see if this would help and why this is present was not discussed (I expect it's from the awkward positions I sit in to compensate for my pain)... and a week later, I finally received the tablets second class through the post (again, an unacceptable time to wait!). I have reached the end of my medication and I am in increasing pain! I am working on my feet for ridiculous hours and yesterday after a 15 hour day, I could hardly stand up any more (an certainly couldn't sit!) and I just don't know what to do!? ANY suggestions?

Being a final year veterinary student I obviously have a good understanding on spinal problems and surgery and to me this doesn't make sense. If it is time I need then so be it, but you can't just be told that without being explained why. What is it that is still causing me such agony? I know I've had surgery and my surgeon admits the coccyx was so curled round that he had to dig in quite deep to dig it out, but exactly what is causing the pain. I know the time is takes for different tissues to recover from surgery and believe me, it shouldn't be this long!

I am only 22 year old, and am so concerned that I am now experiencing pain in different areas of my back as I am sitting so awkwardly. I am just so frustrated and close to tears. I am going to ring up my surgeon one more time and go to see him to express my concerns. If I still get no answers I was considering getting a second opinion and actually I'm going to speak to my own veterinary universities spinal and orthopaedic team as at the end of the day, a human is just yet another species! Just to relieve me short term I am also considering seeking some short term relief in the form as acupuncture as that did help all those years ago.

I just don't know what to do or where to go with this now. PLEASE, any/all advise is welcome!

Thank you for reading, I apologise for the length of this story but it just goes to show how this problem can dictate such a long duration of your life!!

Update, 2006-07-16

Enough was enough, the pain wasn't easing since surgery and I resorted to revisiting my surgeon last week. I was in desperate need of advice (and a little support/sympathy wouldn't go amiss!) on what I might be able to do to improve my recovery and above all, determined to leave the hospital with a structured recovery plan, ideally with improvement targets. I thought I'd feel far more confident that this pain would one day ease if I managed to reach such targets and if not, alarm bells should surely ring as if to say there is some other complicating factor and thus I wouldn't just be left on my own with no medical support as I am now!

Well, 1.5 hour drive to the hospital (on my coccyx cushion I might add!) nearly finished me off and by the time I was shown into the surgeons room and asked "how are you doing" I'm afraid to say it all got too much and I burst into tears! Useless, but evidence of how frustratingly painful this is becoming. I continued to explain to him that I was now no better, if not a little worse, than before surgery and desperately wanted some answers! How can I have the same pain and yet not have the offending coccyx that was meant to be the route of this pain!?

After one of his most poorly communicative consults to date, the end result was a steroid injection around the base of my sacrum. It seemed ironic that I had come full circle, as this was the treatment I had 9 years ago and yet look at the state I'm in now! Due to my accident prone nature, I like to think of myself as having quite a high pain threshold, but oh my gosh, not allowing any time at all in-between injecting the local anesthetic and injecting the steroids was a pain I don't think I could knowingly put myself through again... I actually bit my own arm in an attempt to remain still! This is all so wrong, even in the veterinary world we are always taught to wait at least 5 mins for local to take effect!

Well, to cut to the point, this has proven yet another disaster... 2 days later I experienced the height of my pain to date, I could no longer sit almost at all, could not lie on my back, walking was painful and sitting in my car was now hell! Even the slightest brush of pressure around my lower back region sent high pitched pain through my lower back region. This new intensity of pain lasted for around 3 days, and now, 2 weeks after the injection, I have gradually returned back to the state I was in before the injection at am now not improving again; i.e. I've gone through all this flare up for nothing!

Interestingly, after doing some research using medical papers, it turns out such flare up for a few days post surgery are regularly reported and one published paper even went as far as to show such people who experience this, actually respond the best to the steroid treatment in the long term. Hmmm, my personal experience says otherwise!

I am at a total loss and fear my surgeon is too, I have lost all confidence in him as well as ever not being in pain! My cushion has to come everywhere with me nowadays and in order to get a good nights sleep I'm resorting to lying on my front. I made the mistake of going out with friends tonight for dinner; I found myself having to sit on my hands... top tip actually if your caught without your cushion; by making a fist with one of your hands and sitting on it, the distribution of pressure when sitting is shifted away from your coccyx. I'm sure this technique is playing havoc with the rest of my back but what can you do!?

Well there we have it, the saga continues! I am awaiting a phone call from my surgeon and shall hopefully find out what he the next plan of action is... I shall of course keep you all up to date!

Thank you for reading, any comment/ideas as welcome as ever!

Update, 2007-01-14

I am now 10 months post surgery...and the pain is still ridiculous!

At stage 8 months post surgery I decided to get a 2nd opinion from another orthopaedic surgeon from central London. He examined me and then my post-operative MRI... and then simply asked where was my other scans? There were none, but surely an MRI is more than detailed enough I thought. Whilst looking at the image, he then asked more another question... "Tell me what's missing from that scan"? This was the 1st time I'd ever seen these scans myself so I took a good look... HORROR... my original surgeon had only gone and scanned down to the level of my sacrum only and had NOT included the area where my coccyx once was. I will remind you at this point that it was based purely on these scans that I was given steroids for my pain an treatment that I told was safe as the scans showed I was clear of infection... but it turns out that was a lie, the area he did not scan must have been infected in the opinion of this 2nd opinion surgeon due to the damage now evident on repeat MRI scans and radioisotope scintigraphy. I do believe the words "an abscess the size of an apple must once have been there" were used!!

So that was October time, and post repeat imaging I was told unfortunately the damage that was still present, especially off to the right of the base of my sacrum, was damage the surgeon would be surprised to see at 2 months post-op let alone 8 months! ... No infection was now present, and sadly no treatment other than time possible. So I was told all should have calmed down by 2-3 months...

...Well that would be now, and certainly no improvement, only deterioration. I mentioned I was a final year vet student so I am doing a relatively physically demanding job at times. The muscles around the lumber region of my back have atrophied slightly, and not being a very big person before, I now have bones that stick out and are prone to being banged/bruised. As a results of the atrophy I am struggling to be on my feet for long periods of time, hardly ideal when operating myself, and have been forced to wear a back support most of the time at work. So really, I now have two problems, the remaining "coccyx" pain (although I no longer have one) when I sit and now standing is painful.

I feel I have been totally left, no medical intervention nor help is happening and no one seems to listen to my complaints. Well, I done the wait for 3 months to pass, and funny thing, I'm no better so with a lot of persistent phone calls I managed to get my self a Pain Management referral at an orthopaedic hospital. Great, so do I really just have to "manage" this pain, there is no cure!?

I'm going to stand my ground at the consult, and is they can't tell me where the pain is coming from, there is no way I'm taking a cocktail of tablets/injections to simply mask this pain. I'm adamant there is something else going on and am appalled at the my treatment or lack of it. May I just remind you that this is the result of going privately, and kind of wishing I was in the NHS system now... there a phrase I thought I'd never say.

Well, any thoughts/suggestions more than welcome! I'm thinking I've got nerve damage at least and am determined one day, to get to the bottom of it!

Thank you for reading, please think twice before your own surgery, and to quote my most recent 2nd opinion surgeon "I'm sick of seeing and having to correct the number of these operations that go wrong, and I'm trying to get the technique banned as think it produces more problems than it does good"... I'd have to agree, I now can't sit nor stand comfortably, whereas before at least it was just sitting that was problematic!

Update, 2007-03-04

It is a year almost to the day since I had my coccyx removed and I'm still certainly no better off from a coccyx pain point of view and definitely much worse off from a lower back pain view!

After experiencing pain even when walking and after still waiting for the referral to a Pain Management clinic to appear on my door step since Christmas, I gave up, and made a third opinion appointment this time with a recommended spinal specialist in London.

What an interesting appointment! Firstly he looked at all the scans I've had to date and seemed confused as to exactly what my surgeon did remove as "although it appears your coccyx has gone, your sacrum looks suspiciously long". A physical exam and history led the doctor to confirm I still had an acute source of pain in the coccyx area but also lower pain pain/weakness/muscle wastage due to a possible other problem. I was therefore sent for repeat x-rays of my lower spine. He read them there and then and these highlighted the following:

1) A random pocket of well defined gas resides just behind the base of my sacrum. Now this could be "normal" as peoples large intestinal colon lives around this area which naturally contains gas, yet, this was not quite in the correct position for that

2) Concerns that my 7th lumber vertebrae, exactly where he elicited pain when pressing, didn't look in the best of shapes. Possible it could be what is called "artefact" on the x-ray, but there is a question mark over the possibility I might have a spiral fracture of my vertebrae. As a result, I have an appointment for a CT-scan in order to get a 3D image of this vertebrae. Now, even if this is the case or not, something in this are is giving me these other symptoms of lumbosacral back pain as well as coccygeal... fear is, all this sitting so weirdly to avoid coccyx pain might just have put too much strain on the rest of my back!?

3) Indeed, my sacrum appears unusually long, in that he fears the actual coxo-sacral joint and disc itself, which is always the joint that is responsible for the original pain might actually still remain... i.e. incomplete first coccyxectomy!

I'm having my CT scan next week and from those result we'll make a plan. However, I was warned that even if all comes back ok, ultimately the only way he will know what's going on in my surgical site is to go back for surgery, open the area up and explore... gulp!

I'm supposed to graduate as a veterinary surgeon myself this summer and as the pain doesn't get better, instead more complications arise, I am increasingly worried I shan't be able to practice as sitting, and now standing still on the spot for any length of time, is becoming painful!

I'm currently back to taking the trusting coccyx cushion around with me everywhere, but ultimately the best relief is pulling up 2 chairs side by side, leaving a small gap in-between, and then sitting between the two, my coccyx area in the gap. Do I get strange looks? = yes, do I care any more? = No, I crave to relief!!

Please, if your facing surgery make sure you've have tried every other alternative, non-invasive, treatment under the sun first... there's no going back once the scalpel has cut!

Will of course update you, hoping one day to share some good news!

Update, 2007-05-27

Life has been so hectic recently I haven't had a moment to update you on my status... sadly my lack of report doesn't mean things are improving!

I had the CT scan a couple of months ago now which revealed a fused, right, sacro-iliac joint. This is a few inches up from the coccyx and is the joint which joins you sacral spine to your hips. Exact reasoning why this may have fused was two fold: 1) Ankylosing Spondylitis (AS) 2) Severe trauma.

After much worrying, my blood test for AS thankfully came back negative, so that leaves trauma. In my case this may be due to this last year of agony and sitting in such odd ways that I have strained my back to much that it has reacted in this way. I may just never know why this is, or if it is related to the coccyx, just all seems little coincidental for me. As for an alternative trauma, well sadly just over 3 years ago I was a passenger on a coach crash RTA and indeed sustained multiple injuries, none of which however were to my pelvic region however.

I have started physiotherapy in an attempt to at least strengthen up my lower back muscles which appear to disappear more and more each day. This will hopefully ease the aching pain I now how if stand on the spot for too long, as well as sit down!!

As far as the coccygeal pain goes, no improvement... still can't sit anywhere comfortably for long and I've noticed, unless I'm driving and on my coccyx cushion, being a passenger in someone else's car is shear hell!

The plan... tomorrow I am going into hospital and under a GA and x-ray guidance, local anesthetic is going to be injected under and around my now "stump". This is technically a diagnostic procedure, rather than a treatment, as upon recovery, if my coccygeal/stump region is indeed still the source of all my agony (which I feel it is as the pain is the same as before it's surgical removal), the local will block out the pain for around 6 hours... I'll be able to sit, albeit for 6 hours, but still, it's been so long!! Whilst my consultant is in the region he is also going to inject some steroids "for good measure"... steroids are potent anti-inflammatories to will surely help reduce the pain somehow, and certainly for longer than a matter of hours!

I'm admittedly nervous about tomorrow as sadly my trust in the medical profession is slowly but surely decreasing, and yet I have no other option. If I block out it's a positive result in terms of they know where my pain is coming from, but on the other hand, means I will only need to go back under the knife again for my stump to be "filed"... something I just can't think about, the pain and healing process was so traumatic first time round!

So there we go, no good news but progress in that someone I feel is on my side and at least trying to work out what's wrong. Unfortunately, I have just embarked on my 5 weeks study leave for my Veterinary Medicine finals at the end of June so timing could be better, yet on the other hand, maybe I'll have some relief for the rest of my revision.... as I'm sure most of you will sympathise with me and my huge task of even sitting at a desk for 5 weeks, let along the insane amount of work I must get through.

If it help, I currently sit on a giant gym ball as feel I never get "stuck" as such as can gently keep moving... not perfect, but may better than a chair?

Fingers crossed for me please everyone, I just hope by the end of the summer I can finally finish this saga with a happy ending!

As ever, any worries or questions I'd be happy to try and answer. I think with my own medical knowledge and certainly long standing experience in this field I feel I might be of use for others at least!

Update, 2008-07-02

I am now 24, 2.5 years post surgery and slowly but surely the complications post my failed surgery are still appearing.

On the up side I qualified last summer as a small animal veterinary surgeon, and after the summer of 2007 in an attempt to get me back up to strength to work. My last year at vet school was difficult, very difficult. Nerve modulators, anti inflammatories, diazepam, back supports, heat pads and sheer grit and determination got me through! During my summer off I also had a trigger point steroid injection in the ligaments of my lumber spine as these had become so strained and therefore painful and weak themselves after all my weird and wonderful ways of sitting to take pressure of my "stump"!

Last time I wrote I mentioned I was pending on a CT scan... it "incidentally" revealed my right SI joint was fused distally. Looking back through my records, this same joint 6 months post surgery was reported after an MRI scan as "severely inflamed". Many a specialist opinions later the most likely reason for this is sacroiliacitis due to infection post my coccygectomy travelling to this joint. The picture now all comes together as to add to my pain I now get SI joint shooting pains down my right leg. It's hard to know when it's going to happen, but can certainly be triggered by bending/lifting. At my worst I struggle to walk, but I try to grin and bear it, and it has even be known for me to operate standing on one (my good left) leg!

Every specialist seems to have a different opinion. Some telling me to accept I would never work and seek counselling to accept this (I wasn't best pleased about this negative opinion) and to prepare I may need a walking stick one day! More recently I have given up with orthopaedic surgeons, at the end of the day I have nothing left for them to work with... and instead turned to pain management teams!

To quickly summarise I am managing to work, but again, I think my determined personality is getting me through as after long days I do literally come home "broken"! I now have to avoid lifting or bending as I know my SI pain will be triggered. I am in pain recently every minute of every day, to the point that I bend down in the shower to pick up some shampoo and can feel my skin painfully stretch over my stump. When on my feet for too long I can only describe an awful pressure, like fluid collecting, at the base of my spine, that simpley pounds and pulses. When operating I tend to lean very much on the table to prevent putting my full weight (all 8 stone of it!?) through my spine. Just squeezing my gluteals together gives a sharp pain.

I am pending on see yet another "specialist" this time a pain management consultant who deals with pre and post op coccygeal pain sufferers and am excited to talk to him, if not to predict my future, let alone if anymore can be done. The pain management person that has referred me to this coccyx specialist said my case has "haunted" her, as what has happened to me is nothing less than "criminal". At the end of the day, no conservative management was attempted before the butchering surgery and that is nothing less that negligence. The tissue just covering my "stump" is now so thin no steroid injections are now possible as these further thin tissue, as well as acting as anti-inflammatories.

My two greatest concerns for which I wish to seek more answers after they have sadly been mentioned my specialist to me are:

1) With such a thin soft tissue coverage, the end of spine is now at risk of breaking through my skin. As a result the rather risky, very scaring and poor prognosis plastic surgery to basically pull up my gluteal muscles to cover my spine will be forced upon me.

2) Although not currently on my horizon, suppose I always assumed I would have children one day... however, I shall never be able to give birth naturally esp due to my fused SI joint, but also doubts if I would ever be able to carry a child in the first place.

At only 24 years of age these are huge things I am increasingly worried about especially more recently as my pains are ever increasing to the point that somedays it is like I have a huge invisible bruise that radiates out from the base of my spine, across my lumber spine and gluteals.

I will keep all updated as feel my ongoing story is hopefully one that will stop anyone in their tracks to ever having this surgery... how I wish to have my simple/localised coccyx pain I had just prior to surgery back again in comparison to these multiple pains I have now all due to a surgical failure!

p.s. My motto in life is you have to keep smiling, so to give you all a giggle here is a question for you all. When reviewing my case, guess how a orthopaedic surgeon recently described the SINGLE lateral x-ray that condemned me to this blasted coccygectomy surgery in the first place (... and to remind you my performing cowboy surgeon had told me it showed a "displaced and angulated" coccyx and hence surgery was my only option)

... Answer? "Normal". Now please tell me how I therefore ended up on the butchers table in the first place?!

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