Nimi Kremer

14 year old male with severe ankylosing spondylitis. 3 month of severe coccyx pain, Doctors wanted me to have an MRI because they where scared that i have bone cancer. They found that my coccyx was curved inwards at 90 degrees. They want me to pass a coccygectomy (removal of the coccyx). I am taking these medications: Naproxen, Humira, Rokacet and tramadex. I was wondering if any of you guys also have coccyx pain?

Asked by Nimi Kremer 3 years ago as crohn's and as ankylosing spondylitis as symptoms

I have a dislocated coccyx from a bad fall 3 years ago - told by my drs that it wouldn't be a good idea to have op to remove it. I still have inflammation from it.
My stepdaughter (doesnt have AS) had fractured coccyx from a fall and had surgery last year. Her orthopaedic surgeon (in Australia) did op differently - not through the back, but through the stomach.  She had great success - no pain now - less chance of infection by going through stomach. It's a new technique with better results. I will see her dr this year(?) to see what he thinks re me.  I use a slab of polymer gel to sit on in car - helps lower vibration - I can't travel without it, too painful- hospitals use it for bed bound patients to reduce pressure sores. Everyone should use one!

by Denise  3 years ago

Yes, I too have coccyx pain. Improved greatly once I started taking Enbrel.I can now sit long enough to go on trips and can enjoy sitting at a basketball game. It still flares up from time to time but not to the extent that it was.Rowie, I too beleive that what we put in our bodies greatly affects us. If you have issues with corn it may be the GMO's.Corn is in EVERYTHING! I stopped eating corn as well unless it's organic. Most corn and soy products are genetically modified in the United States. GMO's have been around since the early 90's and since then autoimmune disease and cancer has been on the rapid rise. I studied the affects of GMO's and it's some really scary stuff! I too notice the pain decrease when I force myself to get moving or simply by stretching...We definitely are fighting against our bodies daily, it's a struggle but remember keep moving and keep stretching. Your mind may say no but your body will thank you :)

by Adriana 3 years ago

I had pain in the coccyx on and off, but that was from inflammation. In your case, it sounds less like it's AS-related (although, if there's also fusion, it's due to the AS) and just a malformation of the coccyx. I'd get more than one opinion, however. We don't really need our coccyx, but it does have ligature involvement, so the surgery needs to be done carefully. The good news: You're 14, and you should heal very rapidly and your body should adjust much better than an adult's body would.

There's an alternate surgery, where they realign the coccyx and put pins in it, but it's far less common. Still, it should be discussed.

The problem is that with the coccyx pointing inwards, it's going to be impeding nerves and always cause pain. So that has to get resolved, which is totally separate from your AS issues. You'll probably have to go off Humira during the surgery and recovery period so that you heal quickly and your immune system can do its job. Depends on what your doctors say.

Removal of the coccyx isn't uncommon. I just shattered my coccyx (walking on black ice - in Los Angeles!), but it quickly realigned into a more or less correct position, even though it's in pieces. Otherwise, they were considering a coccygectomy. Yours is congenital and won't realign itself, I think. But take Frederick's advice - discuss the surgery and alternatives with at least two surgeons, discuss whether you have to go off Humira and for how long (make sure your rheumatologist is completely involved in the conversations) and ask the surgeons how many coccygectomy operations they've previously done and what the success rate was. It's not a fun surgery, but the recovery time should be pretty quick, as long as the surgery was done well.
Good luck to you, Nimi - and let us know how things are going.

by Chapps 3 years ago

J Thomas Little
I started having bad A.S. Effects from age 8 on.  From about your age maybe a little younger i had horrible coccyx pain. How ever i was not diagnosed till age 23.  I remember for about 4-5 years sitting on the ground (during assembly) was very painful. Mine is probably the same as your as some time ago i think someone said it was at a funny angle. Hope for all the best

by J Thomas Little 3 years ago

Melba Whitaker
My husband has coccyx pain, but he attributes it to a car wreck when he was a teenager.  I would approach surgery cautiously and get different opinions and make sure you go to an excellent dr. - even if you have to travel out of your area for a specialist.  At your age you need the best to help you through this.  Our prayers are with you.

by Melba Whitaker 3 years ago

Laurie Buckley
I started having pain in my coccyx in 1999.So bad I couldn't even sit! Doctors couldn't figure out why. They had me going to physical therapy & made me stay in bed on my stomach with my chest propped up on pillows not allowing me to leave the bed other than going to the bathroom & appointments! Shows the uneducation about AS. I would definately get other opinions before having the coccyx removed. Lots of blessings!

by Laurie Buckley 3 years ago

Rowie Hammond
14 years old with severe AS, wow!
I can only empathise with your family and perhaps share some of the things that I know. My AS is primarily in the lumbar region but I have experienced pain in the entirety of my spine.
My AS is triggered by 2 major things; corn (in any form, but especially maize) and Stress.
I have found that by culling corn from my diet and using stress management techniques I am now managing without regular pain relief. It has been hard work because I had to come to realise that every negative thought and memory that I withhold feeds my AS.
They told me that I would end-up crippled by the AS; at the same time they recommended that I exercise more to fight it off. Somedays when you can't get out of bed to go to the bathroom you scoff at the idea of any form of exercise. So knowing that the scoff was feeding the AS I fought through the pain by using Mindfulness techniques. When you use your senses and completely be in the moment you don't have the ability to be consumed with anxiety or depression and therefore there is no foundation for the pain. I used two senses to help me mostly; smell and sound. Both of these two senses are further removed from the pain and gave me a centre of focus.
One of the other things that I found useful was Louise Hay's book; You can Heal your body.
I now know what my triggers are and if I inadvertently have corn or maize I know about it within 1 to 12 hours. I have to be very careful of what the corn/maize is hiding in and some pharmacists look at me stupid when I ask what the micro-ingredients are; micro-ingredients are the ingredients that are less than 4% of the total batch made which do not need to be listed on the ingredient labels of foods and some medicines. There is a corn protein called Zein which is used to coat medication.

by Rowie Hammond 3 years ago

Frederick Jeffreys
There are people with pain in the coccyx but I have not heard of any with their coccyx curved the way yours is and certainly not heard of anyone having their coccyx removed.

If I was you I would not rush in to any such surgery. Make sure you ask the surgeon how many such surgical operations he has performed and what was the outcome for the patients. Also do as much research as you can about it. With a bit of patents and time you can find information about anything on the Internet.

by Frederick Jeffr...  3 years ago

Eco Glass
Do not due the procedure.....

I would spend the time & energy & seek at least 3 separate Dr's opinions that understand what AS truly is..... At your age I would approach this with great caution even though the pain is horrible.... This could cause tremendous irreversible damage long term....

Please just make sure that a AS trained rheumatologist is on board with a plan that makes sense.

Thx. Good luck.

by Eco Glass 3 years ago

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14 year old male with severe ankylosing spondylitis. 3 month of severe coccyx pain, Doctors wanted me to have an MRI because they where scared that i have bone cancer. They found that my coccyx was curved inwards at 90 degrees. They want me to pass a coccygectomy (removal of the coccyx). I am taking these medications: Naproxen, Humira, Rokacet and tramadex. I was wondering if any of you guys also have coccyx pain?

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