Please help - I can't take it any more!!

Jen

Original posting, 2003-06-08:

Hi there. I suffered with severe coccyx pain in 2001, 2002. After seeing two doctors for pain - both doctors said I had a coccyx in the shape of an 'L' - and that was causing the pain. Cortisone injections only provided relief for 2-3 days. I had 4 different series of injections from 11/2001-3/2002.

Finally my orthopedic surgeon scheduled for me to have my coccyx removed. Surgery was set for April 16th, 2002. He removed (2) bones from my tailbone- right where the curve took place. One week after surgery I was in severe pain- I went to the ER and said what pain I was in and was having discolored drainage from the incision site. They sent me home after providing with a pain injection. Four days following the ER visit - pain was still intense - drainage was very mucousy and discolored - however, my doctor was out of town until May 10th. so, I went to his partner- that doctor looked at it and said he thought it was fine.

I returned to my job 2 weeks after surgery and worked (4) hour days for 2 weeks. I had to drive a half hour each way to work and I have a job where I mainly sit, so I also sat for those 4 hours, and kneel at times as well. I could not sit on any cushion because the infection was pocketed in both sides of my buttock cheeks- so it was painful to sit on a cushion- I basically sat side to side often. I returned back to work in full capacity only 4 weeks post-op.

On Mother's Day of 2002, 4 weeks after surgery, I was kneeling by my computer and it felt like my nightgown was wet- and it was! I had white discharge all over my pyjamas- my husband took me straight to the hospital- where they said I indeed had a serious infection on both sides of incision- and they had to cut through some of the internal stitches and reopen healed areas and drain pockets of infection and pack with antibiotic pads. That week while seeing my regular doctor- he noted that culture came back on my infection and if was Staph - and worst of all - MRSA. I was on Bactrim for 3 weeks - had to do baths - and had to have my incision packed 3 times a week for 2 weeks. My doctor moved from PA in June - so I had no one to follow up with.

I saw a wound specialist in July, who said there was nothing he could do for me- he stated there was at least a good (2) inch-thickness to bottom of scar on incision line- and to mess with incision would mean creating more scar tissue- he said I could try to smooth out scar with lotion. By July- I was having immense pain in that scar area, as well as a 'new' pain approximately 3 inches above my incision line. This new pain is worse than my original pain- it's like a constant pressure- the area becomes very warm and very painful.

From April 16th, 2002 to July, 2002 - I was taking Darvocet every 6 hours for pain relief. By end of July, 2002 I was prescribed Lorcet every 6 hours. My pain was still bad throughout all of last year In January I was sent to a pain clinic for pain management. This doctor tried cortisone injections that were ineffective with pain relief. MRI was ordered which appeared normal. Whole body bone scan was ordered, which appeared normal. My lab values indicated an elevated CRP level, but normal SED rate - that was in January. With no pain relief, doctor prescribed morphine and lorcet. Morphine was ineffective. In attempt to manage pain without narcotics, my MD prescribed 600 mg Ibuprofen every 4 -6 hours - this was totally ineffective. I was put back on Lorcet every 12 hours - however, my pain was only relieved for 5 hours.

I tried a chiropractor in March and April - I went for five sessions - this doctor used a tool called an activator - I was in tears every session - the pain was absolutely off the wall when that tool was used in the area around my surgical site - and I began to bruise - which the doctor said wasn't normal.

I recently went to a back doctor in Pittsburgh - he stated he couldn't help me because it was not a specialty for him. He recommended a general surgeon to do a colonoscopy. I saw the surgeon this past Monday July 02, 2003 - he said he doesn't think the colonoscopy has anything to do with anything that would relieve pain for me - but he would perform it and see if he sees anything - if he doesn't - he would re -inject my back with cortisone. I had labs done again - my SED rate is now elevated, and my CRP has increased in elevation from last values in January.

I am now on Lorcet - 650 mg - every 6 hours - I still have terrible pain - and I am just at my wits end! I have been on Lorcet now for 11 months - I still can't sit right - at work I sit on a cut out cushion - which helps where I have the thick scar tissue - but not the other pain in the coccyx region.

I am sick of hearing doctors say it isn't their specialty - I told my husband that I feel just like dying so it would go away - I feel like everyone thinks I'm off my rocker - although he tells the doctors he has felt my back and how hot it gets - but no one seems to care. Does anyone have any advice or help they can offer out there? I live about 2 hours north of Pittsburgh, PA - please - someone has to have an answer - I can't stand it anymore. I'm sick of my doctor saying - "You know, you can't keep going on with narcotic use for this long - we have to figure something out!" - I gladly would if I could - after reading a lot of your stories on this site - I thought someone out there may be able to help!

Update, 2005-02-27:

It's been almost 2 years to my 1st posting, and unfortunately, the road has not gotten any easier- I still have significant pain in the coccyx area, but especially in the SI joints and lower back- ever since my surgery in April of 2002 that removed the last 2 bones of my tailbone due to arthritis. I have since been diagnosed with rheumatoid arthritis and fibromyalgia- however, have been told that the arthritis is not likely causing my back pain; I have been to 2 pain clinics in Pittsburgh PA- last March I received a facet rhizotomy on my right side, which doesn't seem to have helped with the pain. I did receive a TENS unit, with no relief.

I receive injections in my SI joints every 3 months, and those relieve the pain to a tolerable level! I remain on Lorcet now, for almost 3 years now- and have to take it every 4 hours- my doctor said I really don't have a choice, pain relief is a must at this point.

It seems I've been through it all- I'm discouraged, disappointed and most of all, defeated. It is hard to work day in and day out in pain, sitting mostly at a job- taking pain meds every several hours...it is a hard path for sure! I appreciate the thoughtful e-mails that I receive though from time to time--just when it seems I'm at my low, I have some 'angels' out there reminding me I'm not alone and cheering me on- thank you, you will never know how much your words mean to me!

For those of you who have had success- congratulations- it's not an easy road... for those who haven't- the road can be long- but know that you have friends along the way!

Jen

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