Here's what worked for me
Kate Weber - kateweber@optonline.net
Posted 2007-03-18
Hi everyone
I've been reading your stories for a few months, and it's like reading my own! I fell at work on April 4, 2005 and have struggled for 20 months to get a diagnosis for my continuous pain. I was originally diagnosed with a L1 compression fracture, put into a brace, and told that 3 months later I would be okay (after a bit of physical therapy). So, I did the brace, I did the PT, and I was still in a lot of pain (to say the least!) Workers Comp dropped me and my job wouldn't let me back since I was still injured, so no $ and no insurance! (Thank God for my husband or I'd be living with my parents!)
Anyway, since then I've seen 7 doctors, had more X-rays/MRIs (showed nothing) than I can count, steroid injections, pain meds, TENS unit, internal & external manipulations (whoohoo), and even a PT who told me that something was wrong with my tailbone. But, since nothing showed on the scans, every doctor brushed me off when I brought up the issue of my coccyx. Sitting and driving more than 20 minutes is a nightmare and I won't even go into how much I dread trips to the bathroom (you all know what I mean)
Anyway, sorry to ramble! The good news is that I finally found a doctor who was able to find PROOF of my pain and diagnose me with an actual injury! It turns out that this whole time my tailbone was broken and hanging/dangling/twisting around on/by a thread of ligament or tendon (ugh!) And now, I'm scheduled for surgery next week in NYC at Mt. Sinai with Dr. Nirit Weiss (she is awesome!!!!!!) Who would have thought that I would be so happy to hear that I have a broken bone and need surgery!
So, here's what worked for me:
- I finally went to a Neurosurgeon (they are the true back specialists!)
- I had a CT scan of my whole spine all the way down past my tailbone (this scan shows waaayyyy more than any other) My doctor ordered that the scan be done very specifically – 2D, I think. She even found a stress fracture on S1 that had not been seen on any previous scans!
- I never took "No." or "There's nothing we can do." for an answer! Don't let them tell you that you are disabled, imagining it, crazy, having referred pain, or experiencing "tight muscles" – that's what they told me and I had a broken bone the whole time!
Anyway, I know how awful it can be to not even be able to sit through a movie or go out to dinner or work or anywhere without meds, pillows, tens units, etc. I will keep you all posted on the surgery. Stay strong and do not suffer in silence!!!!
Hugs from NJ!
Kate
Update, 2007-03-25
Hi all! So, I actually had my surgery 6 weeks ago. Long story short: I submitted my story online about a week before the surgery, but realized that it never went through (stupid e-mail! :D) Sorry for the confusion!
Anyway, the surgery went really well. I'm not going to lie to you - it was extremely painful. My surgeon expected to only take out the very tip of my coccyx, but when she went in, it was a mess. She had to take out my entire tailbone and a disc! Ugh! I woke up in absolute agony, but the nurses were great about giving me lots of meds and trying to keep me comfortable.
I spent 2 wretched days in the hospital, unable to lie flat or go to the bathroom or anything. The actually incision (about 4 inches long) was covered with a huge bandage, like a diaper. When I moved, it felt like I was going to be ripped apart (the stitches started about a centimeter above my rectum and extended all the way up to the very top of my....well, my butt crack (I don't know what else to call it! Sorry! LOL!) I convinced the doctor to send me home on lots of meds by the 3rd day - all I wanted to do was go home, ya know?! I had to use a walker to get outside - remember, you are not going to be able to sit (in a wheelchair or anywhere else.) The 2 hour car ride home was torture. My dad and husband had pillows piled up in the back seat, so I just got on my stomach and tried not to focus on every bump.
At home, I had everything set up for the "long haul." Here's what I did to get through the first few weeks:
- I put a satin sheet on my couch. It really helped because I was able to easily change sides by sliding around. I had to switch sides every half hour because of the pain, plus my legs were in constant pain (the doctor said that was normal because nerves got bumped around during the surgery) It was almost like I couldn't keep my legs still; they felt sore and achy. Having the sating sheet was great because I was able to move without too much effort.
- My husband (God bless him) stocked a cooler full of snacks and goodies every morning and left it next to the couch. He also rigged a Nalgene water bottle with a long tube so I could drink easily. Staying hydrated and eating healthy was so important because of the intestinal issue. My first bowel movement after the surgery was a nightmare. Thankfully, my doctor prescribed a liquid laxative/stool softener. That, combined with lots of water and fruit, made my trips to the bathroom much easier.
- I used those pre-moistened "bum wipes" :D They were great! I used the Cottenelle brand. Every time I went to the bathroom, I used several of the wipes and poured a good amount of peroxide over my incision. Then my husband or I patted it dry with a sterile gauze pad and covered the whole thing with non-stick pads and a tagaderm patch (a clear bandage) That's how the nurse showed my husband how to do it, so that was my routine. I guess it depends on your doctor. Just make sure to have plenty of supplies (peroxide, bandages, etc.) I also used A&D ointment to speed up the healing and reduce scarring. It really worked, because I had no trouble with infection or anything, and my doctor was thrilled with the incision when I went to have the stitches out 2 weeks after the surgery.
- I used a cane to get around (just to the bathroom at first) Walking was rough for the first week, but got much much easier as the incision healed. But, I'm glad I had the cane for extra support.
- I upgraded to the premium cable package and downloaded lots of movies onto my computer. Because of the meds, I couldn't concentrate enough to read or anything, so TV and sleeping were really all I did for the first few weeks.
So....it's been 6 weeks since the surgery. I wasn't able to lie on my back at all until the 4th week. Now I can, but only for about 20 minutes at a time. Walking and standing have gotten much better. It doesn't actually hurt to walk or stand, but I feel sore afterwards. Sitting is not even close to normal. I am using a doughnut pillow, but it's very painful to sit at all. I'm still on oxycontin, but am slowly trying to decrease my meds. I am also hoping to start physical therapy this week.
If I've learned anything from this experience, it's that these coccyx injuries are so different for all of us. For me, before the surgery, my pain was mostly during sitting. I had constant pain, but it skyrocketed whenever I sat. So, I did not expect to wake up from surgery feeling miraculously healed :) I am going to have to recover from the trauma of the surgery before I can determine whether or not it "worked." But, I am more than optimistic. My surgeon said that my tailbone was "shattered" and she did not know how I was functioning. Hah! You all know what I mean when I say that it's amazing what you can learn to live with. So, I can't imagine that the removal of my shattered tailbone won't help me! :D
I promise to keep you all posted. It's been a long 6 weeks, but I've got at least another 6 ahead of me. I never expected my recovery to take this long, but this surgery is a big deal. My advice: Don't rush it. Just rest and give your body the time it needs to heal.
All the best!!!
Kate
