I cannot sit normally even for a minute

Keerthana - keerthana.sethu@gmail.com

Posted 2010-02-14

My name is Keerthana and I am 27 year old woman, software engineer from Chennai India. Until I got coccyx pain I have enjoyed very good health.

I have been suffering from severe pain in coccyx for last 15 months. The pain is very severe right now. Currently, I cannot sit normally even for a minute (irrespective of the chair). The company I work with got me a sit-stand desk and I have been working standing all day for last 6 months now. My work place also arranged for a dorm with beds where I can go lie down, when my legs ache due to standing.

Onset of pain:

15 months ago, I suddenly got pain while sitting (I was just sitting on the sofa watching TV). It was later diagnosed as coccydynia.

Cause of pain:

Cause has been assumed by my doctor to be 2 bad falls on my butt 3-4 years before onset of pain (the falls did not cause pain at the time). Apparently, pressure on the same spot over the years has caused sudden onset of pain which has now become chronic.

Diagnosis:

The X-ray and MRI shows "angulation of coccyx". I am told the bones as such is normal. I dont have any cysts. The angulation of coccyx is attributed to weak or torn ligament.

I did not under any dynamic x-ray. My doctor says he think I have mobile coccyx anyway so that will prove nothing. My doctor is Dr. Umachandran of Apollo Hospitals, Chennai. He is a senior ortho surgeon. He is very good and I would recommend him to anyone. I have been seeing him for last 10 months.

Treatment:

From day 1 of pain onset, the best I have ever been is being able to sit 10-15 mins at a time (for a few months after first ultrasound and exercises it become 20-30 but this lasted only for a short while after which mistreatment worsened the pain).

- MEDICATION: I started off with anti inflammatory medications from my family doctor.

- CUSHIONS: I tried coccyx cushions and from the beginning I have found them be of no help (I have tried so many now).

- STEROID INJECTIONS: Then I went to a orthopaedist who administered 2 corticosteriod shots with 3 weeks in between (he dint suggest anything else!) and . The injections gave me very mild relief for a few months.

- PHYSIOTHERAPY (ULTRASOUND works best) When pain didn't still go, I went to a new doctor (my current one) who started me on ultrasound and laser physiotherapy. I am sure I would have got cured with ultrasound if only I started with it and took plenty of rest. I was also taught a set of pelvic and back exercises. I added daily 30 mins of brisk walking. The exercises strengthened my ligament probably and the ultrasound reduced the inflammation. This combination gave me great relief for 3 months. I would say about 60% relief. Sadly this did not last long due to the mistake of the next therapist (next ultrasound below).

- FURTHER ULTRASOUND: The first ultrasound helped a great deal. But a second one after 3 months reversed all my improvements. This therapist pressed too hard during therapy. She was literally rubbing the scan head on my coccyx really hard! I screamed with pain but I was told that's how it is done (My first time was not like that!). This proved very costly for me. The pain the came 1 week after this has not yet decreased. It just gets worse.

- THIRD CORTICOSTEROID: I took a 3rd steroid injection after 8 months since 1st 2 on my doctors recommendation. This injection gave me no relief at all. It may even have got worse actually.

Right now I do about 30 mins of Yoga daily and about 45 mins of spine/pelvic exercises.

Now I am really lost. My doctor says coccyx removal is not recommended for me as the bone is normal really. The angulation maybe due to weakened/torn ligaments. I do get his point, but I am very confused now. My pain is very severe now that I cannot sit for even a minute normally. I can sit on one butt for 1-2 mins and I cant repeat this for next 15 mins. If anyone has same diagnosis and coccyx removal helped, please let me know.

For all those in the earlier stages on this pain, I recommend exercises, yoga and ultrasound therapy. I am sure If I had started off with this treatment I would be pain free now.

Update, 2010-07-31

I received many mails enquiring about my status and if I managed to find any good doctors in India.

It has been about 18 months since I got the pain in my coccyx. Doctors have been surprised at the severity of my problem and how fast it worsened. Thankfully it is not so difficult to meet specialists in India and Chennai is one of the best in health sector. So I managed to meet many orthopedics, ortho and spine surgeons in Chennai and one in Kochi and one in Bombay. They all now tell me the same thing. I 'can' go for surgical removal of coccyx and that it is my choice. If I can live with it, I should continue doing so. So I made up my mind that I will try all the non-surgical options I have and then if nothing works, I go for the surgery.

My pain status is pretty much the same. I cannot sit for even a minute normally (on my tailbone). Even the leaning forward doesn't help. But sitting with leaning on my side helps (I can sit this way for 15 mins alternating between sides). I travel to work lying down in the back seat of my fiance's car. Otherwise I stand for most of the working day with short sitting periods ever 1 hour. I go to the dorm in my work place and lie down for 20-30 mins, once in the middle of the work day - to rest my legs. I do get pain in my legs, knees and lower back due to standing for long/ bad posture while sitting. So I started exercises to keep these parts strong and as long as I do them regularly, I am able to avoid pain in my legs/lower back.

I do yoga, spine exercises (30 mins) and swimming (1 hour) every day. This helps a lot but of course my tailbone is far too worse to benefit from this.

My primary consultant is still the same person, Dr. Umachandran of Apollo Hospitals (see Doctors and specialists in India). I am happy with his treatment. He said he will not perform the surgery for me until he is convinced I need it. Besides the exercises I stated above, we tried these treatments so far: ultrasound therapy(3), laser therapy, IFT, corticosteroids(3), caudal epidural(1), deep muscle relaxation therapy and ofcourse, various cushions and seats. I also learnt yoga (good relief for the secondary problems) and Varma kalai therapy(lot like acupuncture, not much help). After seeing that all these treatments are not really helping me, my doctor decided to get me checked for any other problem that could 'refer' this pain. I was sent to a neurologist(all okay except tailbone), psychologist (for stress - I was tested extensively and I was declared stress and depression free), gynaecologist (for pelvic inflammatory disease - negative), general surgeon (for anything wrong in my rectum - I was all normal). Now he is finally convinced I can go for the surgery. All the other specialists I saw also concur.

The doctors I consulted:

Dr Alagappan Chennai (I saw him initially for 1-2 months)

Dr. Umachandran, Apollo (my current doc and he's been treating me for most of the 18 months)

Second opinions:

Dr. Mayilvahanan, MN Ortho, Chennai

Dr Dhanapal, ortho surgeon Chennai

Dr Sriram, ortho, Chennai

Dr Ravi, neurosurgeon, Kochi

Dr Rajesh Maniar, Mumbai (Breach candy & lilavathi)

For all of you out there trying to cope with the pain, do try to exercise in general and exercises specific to gluteal muscles and lower back. They really help to make the pain slightly more bearable, at least while you are still deciding about surgery.

I have also learnt that with any exercises (yoga/spine-gluteal/swimming in my case), the next day is a little bit more bearable. If I don't do my exerices for 2 days, I notice the pain shoots up. And from my experience, steroid injections do not help everyone, but of course you won't know until you take one. But my feeling is, if the first one did not help much, taking more of these shots is pointless( first one helped a lil bit, rest 3 -totally useless).

I am getting married in a month to my long term fiance and we plan to get my coccygectomy done a couple of months later. I feel positive that surgery is my option now, as I have tried everything else. Will post here later on how my surgery goes.

Best wishes for all those out there trying to find a solution...

Update, 2013-02-10

After my last account I have 3 updates - opted out of surgery, ganglion Impar and finally treatment with Dr. Rajveer.

No surgery update: I did not go for surgery as I had previously mentioned. My doctor Dr.Umachandran was still against it when I went back to him. He thinks my tailbone looks normal so it is highly unlikely I will benefit from the surgery. He also discouraged me because of the potential risks of the surgery - rectal incontinence being the major one. My problem is that I am unable to trust any doctor who says surgery will help me - these doctors don't have any successful tailbone removal surgeries in their experience and are not as experience as my doc. And the other senior docs I went to, who I am able to trust, they are against the surgery.

I have managed to live with the pain, adjusted so well that I mostly don't remember it even. Standing up when the pain comes (which is roughly after 15 mins of sitting with alternately leaning on either side) happens instinctively now, I still lie down in the back seat of our car while travelling and thanks to my support system I think my life is pretty normal despite all the pain.

The second update: Under the recommendation of my doctor, I took yet another shot - Ganglion Impar Block. Short story - no use. Long story - This was administered to me by an anaesthesiologist colleague of my doctor (Dr. Anand). After this shot, I was totally painless (but also totally numb in the butt region) for about 24 hours. I think it was mostly due to the painkiller component added with the steroid. But after that the pain was back as usual. In addition the injection site itself hurt but thankfully this was gone in a week. So then I decided no more shots, I have already had 4 steriod injections, 1 caudal epidural and 1 ganglion impar block. Atleast I can tick these off in my list!

And the third update: I went to Dr. Rajveer based on personal stories in this site (see Doctors and specialists in India). I went to Bangalore for 6 days. I was taught exercises, internal manipulation 3 times and ultrasound on all 6 days. He also prescribed some vitamin D supplements and special arch support for my feet (I have flat feet). The exercises are rigorous compared to what I had been taught before and I am feeling positive about it so far. I haven't seen any improvement yet, but I know my pain is far worse than most people so I want to do the exercises for a month atleast before I decide. I am not so sure yet, but I might even have about 5% improvement already - I have been having some slightly good days and some normal bad days. I will share an update about my progress. Hoping I get the relief that so many of your reported after going to Dr. Rajveer.

Regards,

Keerthana

Update, 2014-08-31

Its been a long journey and I think my pain levels are the lowest since I fist hurt my tailbone 5 years ago.

I went to Rajveer Singh. He is knowledgeable and very helpful but unfortunately his methods did not help me at all. However I am a lot better now and thanks to a decision to get fit.

I signed up for a outdoor fitness group and I think my tailbone is the best it has been for last 5 years. No therapy, shots (everything kind of shots under the sun), manipulations, seats nothing has helped so far. But now I can sit up to an hour - 2 hours now.

Of course sometimes there are bad days and I am in lot of pain but my quality is life is the best it has been since my tailbone pain first started. I still use my sit stand desk at work (a boon) and lie down in back seat of the car for any journey that is longer than 30 mins. Its been a while in this mode - I hardly remember my pain now. I think I have come to terms with the fact that I can a normal life with minor adjustments. I am no longer seeking surgery (just can't find a doctor who gets it/feels right in India).

For those who are interested in what workout I do: I do different variations of squats, hinges, burpees, push ups, swings and the like - with and without weights - its a group workout thing and 1 hour for 3 days a week and quite intense. I strongly believe exercising my glutes, hamstring, quads, lower back etc. somehow strengthen the structures holding the tailbone - in fact not working out for a week and I can see my pain increasing. And the best days are the days on which I have worked out more intensely than normal. Starting this workout regime was very very painful for the first month - my knees were killing me (all the standing at work) but over time all my secondary pain has disappeared and tailbone is a lot better. Hope this helps!

Regards,

Keerthana

Update, 2015-01-18

I moved to Canada, got a transfer within my org and here everyone has sit-stand desk and for once, no one knows I have a pain condition (they knew when they hired me and they didn't mind!!)

What is coccydynia? | Investigation and diagnosis | Treatment | Coping with coccyx pain | Find a doctor or specialist

Medical papers | Personal experiences | Links to other sites | Support groups | Site map