Trying to find the light at the end of the tunnel

Kristin -

Posted 2011-06-29

My name is Kristin and I am 39 year old woman living in Sydney's North Shore. I have been diagnosed with coccydynia and a hyper-mobile coccyx and have been at my wits end trying to find someone/anyone who can advise me further or who has carried out successful coccygectomys. No-one seems to want to have anything to do with the surgery given the high risk of infection.

I first noticed the pain in January this year. My parents had come to visit so I gave them my bed while I slept on a mattress on the floor. In getting up one morning, I yelled in pain. I had felt minor pain prior to this but not enough to really take note (I have not had children or any notable fall on my coccyx). From this point the pain grew worse. I saw my GP who prescribed non-steroidal anti-inflamatorys.

I know it seems I have not been suffering long however it is limiting my lifestyle. I am in the car a lot for work and find it extremely painful getting in and out of the car. I now wake during the night every time I turn over as I have to raise my hips to do so, lying on my back is painful, I can't exercise properly and sit ups are out of the question, I no longer wear jeans as they constrict and make sitting more painful - (but I can't go everywhere in tracksuit pants just cause they are comfy) and making the transition from sitting to standing causes immeasurable pain. I find I am turning friends down when they want to get together as I am in pain and so miserable. (Oh, and I'm not sure if there is any coincidence that I had a pylonidal sinus removed way back in 1988).

As a side point, in early February I was admitted to hospital, through emergency with acute diverticulitis (my first ever - both my parents have it). Diagnosis of this was via a CT scan and I spent a week in hospital. About 10 days after discharge, I returned to the hospital to get my discharge statement which had not been received by my GP. While there, I thought to ask if the doctor could check my CT scan (being the lower abdomen region) and see if my coccyx showed up in the scan. The doctor said it did and said I had a hyper-mobile coccyx and should visit my GP to get a standing and sitting X-Ray. The X-Ray report says "there is evidence of degenerative changes involving the intercoccygeal articulations. No definite focal lesion can be identified. No convincing evidence of previous bony trauma. Minimal degenerative changes are evident inferiorly in both sacroiliac joints. If symptoms persist, a CT with sagittal reconstructions may provide additional information".

I returned to my GP who prescribed some different anti-inflammatorys (of which neither provided any relief). He didn't know who to refer me to so I did some research and Dr Vasilli (orthopedic surgeon specialising in spinal) was recommended to me by Professor Michael Ryan's office. My GP wrote a referral.

I saw Dr Vasilli who booked me in for a cortisone injection. This was done on the 31st March and has provided no relief. I had a follow-up with Dr Vasilli at the end of March and again today. Still no relief. Today Dr Vasilli suggested having a coccygectomy. When asked, he told me he has seen one done when he was in England and it is a relatively simple operation. He also made no bones about telling me how (if faced with it) few orthopedic surgeons (spinal or otherwise) like to perform this operation due to the high rate of infection and how they are not always successful. I am very concerned at his lack of experience with this operation, so have decided to get a second opinion.

My GP suggested seeing sports specialist orthopedic Dr for physio on the area (I couldn't think of anything more painful than someone massaging the area!!!!), or another Orthopedic surgeon - one I cannot find any information about on the net. He also put me on 50 mg Tramadol twice a day for the pain which is working.

So, I decided to take matters into my own hands. I vowed I would canvass EVERY hospital, Every Orthopedic Surgeon's office until I could find someone who is not only experienced in this surgery, but who has a good success rate. As I work in the East, the first hospital I went to was St Vincents in my lunch break. I knocked on two surgeons doors, neither of whom do this operation. Then I knocked on Dr Steel's door. Success at the first hospital. Apparently he has done roughly a dozen coccygectomys with apparently a good success rate. I have an appointment with him on the 9th June. I'll let you know how I go.

(Just before I found Dr Steel, when I had almost lost all hope and before I started pain management, I found this site and contacted one of the contributors. She has helped me see the light at the end of the tunnel and for that I am forever grateful to her. I would not have found her were it not for this web site, so another big thanks)!!!

If I can help even just one person see there is hope when you think all hope is lost, then all this will have been worth it. I am not out of the woods yet and am yet to have my operation, but I have confidence that the future is looking much brighter.


Posted 2011-07-03

I had my appointment on the 9th June with Dr Steel who sent me to get an MRI scan. It's amazing how excited I get when I think I'm going to start getting some answers. Unfortunately, this high just exacerbates the low I feel when I don't get answers. This whole situation really messes with your emotions.

So, while waiting for the MRI results, Dr Steel said he would discuss my case with his colleagues as mine seemed unusual. Yesterday, 3 weeks since my consultation with him, I call his office to see what he thinks and to hopefully arrange another appointment (I have been calling every week in between and can't get past the receptionist). Yesterday, the receptionist tells me the MRI showed nothing so there is nothing wrong with me and there is nothing Dr Steel can do, if there's nothing wrong. What a slap in the face!!! There is so much about his service I could complain about here as I am so angry however, I will refrain...

So I find myself back at the drawing board. I have called Dr Richard Parkinson's office (mentioned on this site) and have made an appointment for 3rd August. Ho hum...... we play the waiting game again. In the meantime, I just keep getting stronger pain meds to try to cope with the pain and try hard to stay positive. It's a new day......

I'll post updates when I have them....... Kristin

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