Diagnosed with tarlov cysts

Nadia, UK - nadia.mahmood@live.co.uk

Posted 2016-11-13

My coccyx pain started about two and a half years ago. I had a period of working where I was sitting on a poor hard stool for long periods of time. I had also slipped in the bathroom in to a sitting position about 8 months prior. I am not sure whether my pain was caused by this fall or the poor posture/stool. Unfortunately I made the mistake of suffering silently, assuming that it might settle or was temporary. I took pain killers for a while. It did not subside. I bought a U-shape type cushion from Amazon, which became my life saver when driving and making long journeys (we have family in Birmingham and London so these long drives are a regular occurrence). I would recommend this cushion, the 'Cushina Memory Foam Coccyx Cushion' and I still use it today. At work I survived by standing most of the time, at home I would sit shifting from one buttock to the next. Cinema trips were over (being a movie lover this is still very hard for me!). At its best, it was an ache when sitting and sharp when getting up. At its worst it was very painful all the time with a burning sensation even while standing. Lying on my back also seemed to aggravate it.

A year later and no better, I had a steroid injection with 'manipulation', the surgeon told me it was good news that my coccyx was not hypermobile (whatever that meant). This felt great for about 2 hours when the anaesthetic was still in my system, but once it had all worn off, I noticed only a mild improvement. About 4-5 months later, I was back to square one anyway. No x-rays were done, they did check my spine with a MRI scan and told me it was all fine.

Another year (and no cinema trips) later I was advised to have another steroid injection. I had been surviving thus far by taking painkillers and rubbing some gel on the area. Perhaps a second injection will finally settle it, they said. Have more hot baths, they advised. Do pelvic floor exercises, they mentioned. There was no difference after this second injection. The referred me to a physiotherapist who also used a laser device, it did not settle the pain at all. I actually felt it always left me with a more burning sensation type pain. By now, as I'm sure almost everyone reading this can appreciate, I was very very down and upset with my situation. No one had given me any answers.

I then found myself on the Sayer Clinics website booking my slot with Dr Durtnall for a few weeks time (see Doctors and specialists in the UK, London). I have to give this a go, I told myself. Living this way for the next 30-40 years scared me. At my first appointment Dr Durtnall took my history and then immediately some x-rays. Within 15 minutes I had the answers to why I was suffering. The shape of my coccyx was stuck in an L shape, due to calcification (very close to fusion) of 1-2 of the joints. Dr Durtnall explained that this could have been due to a fall many years ago, or even from my youth. The shape it is stuck at, also explains why it hurts on lying down (the corner it bends at). I was so relieved to at least know something, when you feel like you have been going insane or imagining it all thus far. He told me that of course my coccyx was not 'hypermobile' as the previous surgeon had mentioned, because it is stiff as a rock! This shows you the lack of knowledge/interest most Doctors have on the coccyx. Dr Durtnall did some manual treatment rectally in the same appointment. At that time, he told me that the joint was very stiff and moving very little, it could be too late for me. Though he reassured me to be hopeful, and that with time he hopes it will loosen. He advised me to never sit on one side ever again and to work hard on my overall posture.

A few days later, I was surprised when my pain was about 20-30% better. Amazed, in fact. I have now had 4 appointments at an average of two weeks apart (I travel from Manchester and have a little boy, so weekly has not been possible for me) and plan to continue doing so for the near future. I also unfortunately had a fall in a soft play centre with my son in between these appointments which aggravated some pain on one side of my coccyx. When I saw Dr Durtnall at my next appointment following this, he worked on that area and it was much better afterward. Overall, now after about 15-20 minutes of sitting, rather than unbearable sharp pain, it is more uncomfortable/stiff. Some days it feels worse again and then it gets better again, none the less it is a much better situation than where I was 4 months ago. At the moment I would say I am 60-70% better, I actually feel like a pain free life is within reach. Dr Durtnall tells me my stiff coccyx joints are moving better than before, though they are still quite stiff. I have not been taking any painkillers since seeing Dr Durtnall. Fingers are crossed that I continue to get better.

Dr Durtnall is also helping me settle some neck pain issues I have had. I have also being seeing one of his physiotherapists Katy for long standing posture and upper back problems, who is absolutely amazing. I have seen almost a dozen physiotherapists in my life, and I have never been worked on with the technique she uses. She is also helping my coccyx by working around the pelvis area. I have only had two appointments with her but I feel like I am getting better every time. Overall I would advise anyone reading this, to act as quick as you can. Do not hesitate to see Dr Durtnall and his team. He is incredibly knowledgeable in regards to the coccyx, so much more than you will ever find via a referral from your GP. He takes an interest in it and he wants to make you better without any reliance on steroid injections and pain killers. His professionalism does not make the rectal treatment awkward or uncomfortable at all. I only wish I had visited him and his team sooner.

Good luck to anyone reading this, I really hope your pain and suffering eases.


Update 2017-08-27

I saw Michael Durtnall for around 6 sessions. After some initial improvement things seemed to be staying the same, if not getting a little worse by the end. Coupled with four hour train journeys, was not helping me at all. I also felt like there was no clarity on what exactly was wrong with me and how long it might take me to get better. I think Michael is great at what he does and obviously helps a lot of people, I personally didn't feel I was getting all the answers to the questions I was asking in the end. In hindsight I feel my improvement during the initial sessions may have been due to my carefulness in posture and keeping pressure off the area. Also some massage of the muscles around the coccyx no doubt help. I know now, that my coccyx joints would not be improving/moving at all with any chiropractic manipulation. Michael said that our goal was to the saccrococcygeal joint to tuck in better. From an MRI scan I know that joint is going nowhere.

I had a 6 month break with no treatment and began to notice the pain was now more toward my left side. Searching online I began to feel a coccygectomy may be my only solution and after trailing through all the testimonies and reviews, Dr John Hardy in London stood out (see Doctors and specialists in the UK, London). In my journey thus far, seeing Dr Hardy has been the best decision I have ever made. Dr Hardy spent nearly 90 minutes with myself and my husband. He took my history, looked at the NHS MRI disc I had brought with me and conducted a physical examination.

He noted that there are no visible spaces in my coccyx joints, which indicates my coccyx has been fused since birth. When I saw Michael Durtnall I was told 'my coccyx was close to fusion and it might be too late for me'. Dr Hardly immediately notices the large tarlov cyst on my left hand side on the scan, close to the coccyx. Smaller cysts present in other areas. I was in shock when he pointed these out. Physical examination reveals no pain when the coccyx joints are pressed/attempted to move but pain which correlates to location of the cyst, close to the tip of the coccyx. There is very limited movement in the coccyx joints and he confirms that it is very unlikely the two previous injections were placed in any joints but rather the area around the coccyx was flooded to help eliminate some pain. He suggests that while the coccyx is of a deformed shape, this has most likely been the case since birth and in his opinion he does not believe it to be the cause of pain and does not recommend coccygectomy.

I was devastated that the solution I thought was my last resort, I could not have. Now I have to find out and learn about a whole new condition. But I had an answer no one had ever told me before. It correlates with other problems I have been having but never linked them to my coccyx problem; left hip pain, left knee pain, lower back pain, thoracic pain (was present on left hand side and stomach was investigated to no conclusion), neck pain both sides (continuous physiotherapy and exercise do not consistently help keep these managed), urinary incontinence (inability to hold urine and most recently unexpected leakages), weakness in hand grip, pulsatile tinnitus. I have been thinking I have been going crazy over the last 6/7 years.

Dr Hardy suggests referral to a spinal neurosurgeon for further investigation of the tarlov cysts and this is where I am now at. In shock really, from having this rare disease and wondering what on earth I am going to do next. The cyst increasing in size most likely correlates to why my pain seems more left sided now.

If you are reading this and you want out what is going on around your sacrum and coccyx, please go and see Dr Hardy and he will help you understand what is wrong with you. With 20 years of experience, he was completely honest with me and told me that this is not coccydynia.

Please also insist on getting an MRI scan from the NHS. X-rays do not give the whole picture, not at all. Will continue to update here, as coccydynia was where this all started and perhaps others are also being misdiagnosed which is why they get no relief from treatments or success from surgery.

All the best to all.

Update 2018-12-16

Following my consultation with Dr Hardy, I saw a spinal surgeon on the NHS regarding my tarlov cysts. He was not keen to treat and said that treatment is rarely fruitful as the cysts return. He suggested another steroid injection which is a complete waste of time for me. There really is a very limited understanding of how to approach coccyx pain and tarlov cysts in the NHS. Lucky me!

At home I read a lot around tarlov cysts, a lot of which is disheartening as a) there doesn't seem to me much appreciation for the affect the cysts have on other areas of the body, for example in my case how it has exacerbated a deformed coccyx from birth (as per Dr Hardy) and b) treatment is not recommended and all I consistently read is that the cysts fill up again and come back. During my research I came across an American Doctor called Dr Feigenbaum. He seems very knowledgeable in the area and claims a permanent solution to draining the cysts in surgery. He conducts bi-annual clinics at a hospital in Greece. On inquiry, the prices are eye watering (tens of thousands) and something I will never be able to afford. So unfortunately that possibility ended there.

Therefore I am much the same as before with no real solutions, just trying to manage as I am. I still use the cushion especially when driving. I don't visit the cinema or enjoy going to restaurants etc. My weight has increased over the last couple of years and I've noticed that this perhaps has helped a little, I feel as there is more cushioning, so to speak, in the area. I'm guessing so, anyway.

I wish I had better news. If anyone else has the same issue and has investigated some other treatments please do get in touch.

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