Looking for specialists in the Peoria or Bloomington-Normal areas

CE Forman - ceforman[NO.SP@M.PLE@SE.TH@NK.YOU]@pobox.com

Posted 2009-09-27

My discomfort started about 3 weeks ago, for no reason I can determine. When sitting in my office chair, it felt like I was seated on a thin metal bar right at the base of my tailbone. After about 3 days it started to get painful, so I stopped at a medical supply store and bought a coccyx pillow and a backrest.

Using these devices it's not outright painful anymore but it's still distinctly uncomfortable. When I'm at home I can get situated so it doesn't bother me, but at work I've gone through every chair in the office and even the best one leaves me shifting around constantly, even with the pillow and backrest.

It's not getting better though, so I'm considering getting actual medical advice. Does anyone know of any specialists in the Peoria or Bloomington-Normal areas? The closest practitioners listed on this site would require a drive of several hours. (Not looking forward to that.)

Thanks.

Update, 2009-10-04

Got an update, and it's good news. After a couple of pretty unbearable days, I made a chiropractor appointment. He took some X-rays and showed that my neck was curved improperly, most of my spine was very much out of alignment, and my pelvis was balanced unevenly. I noticed an improvement after one adjustment, and today after my second I'm sitting pretty comfortably without using the coccyx cushion. Apparently my neck and back issues were affecting everything further down. Most likely this was caused by years of normal repetitive stress from sitting on the job. I have a few more adjustments scheduled for next week but based on the first two the results seem positive.

I highly recommend seeking chiropractic treatment if you're experiencing coccyx discomfort that's not the result of a traumatic injury; it definitely helped in my particular case.

Update, 2009-10-11

Well, I may have spoken too soon. The chiropractic treatment has been marginally helpful -- I can now sit for short, 20-30 minute periods without the aid of a cushion -- but my discomfort is far from gone.

I've found that leaning forward in my chair when sitting eliminates the problem, but I can't do this all day as it makes the thoracic area of my back ache after about 3-4 hours. A freezer gel pack also helps, mainly because the cold temporarily distracts from the discomfort.

Feeling somewhat discouraged at the moment, and I really wish I had some idea of what caused this. I'll probably seek out other options if it doesn't improve after a few more treatments.

Update, 2009-10-25

I was going to the chiropractor for awhile, getting neck and back adjustments, and recently they moved to a couple in the sacrum/coccyx area. It was helpful, and the "sitting on a metal bar" sensation was starting to clear, and I did regain some movement in my neck that I didn't even realize I'd lost. But progress was slow, and at $40 a pop it adds up. Then this week I had a huge car repair bill, and I'm not going to be able to afford the treatments for awhile.

Frustrated and willing to try anything as long as it was free, I gave the yoga exercises a go. They are miraculous. I alternated between the 3 of them for about 15 minutes. The next day I was able to sit comfortably through almost all of my work shift using the cushion (which before was helpful but didn't completely stop the discomfort). The twinge in my coccyx area is mostly gone, replaced by a dull ache that comes and goes. Like the other yoga people, the pain seems to be migrating.

There's still some discomfort sitting any length of time, but it's definitely better. I'm still using the cushion and backrest, and plan to continue the exercises indefinitely. Will post further updates as they occur. If anyone else is experiencing this due to repetitive stress from sitting (and not a traumatic injury), I highly recommend, before you spend any money on treatments, try the yoga. It is incredible.

Update, 2009-11-01

Well, it seems I once again spoke too soon. The yoga does help somewhat, but I've had a couple of relapse days this week where it's just plain uncomfortable to sit, even with the cushion.

Finally broke down and went to an M.D., he did a quick exam and they took some more X-rays. Should know more next week. I promise I'll wait at least a week before posting anything, so I don't keep giving people any false hope.

Update, 2009-11-13

Well, the X-rays came back normal, and the anti-inflammatory pills the doctor gave me didn't make any difference. This week I went back and he did a rectal exam, and thought it might not be my coccyx at all, but an inflamed prostate gland. Gave me some pills for that, and took a urine sample for a screening. Too early to tell if the pills are helping. I should know next week.

Update, 2009-11-20

No improvement from the second set of pills. I moved some boxes of printer paper onto my desk and adjusted my keyboard and monitor so I can work standing up. It's improved my mood tremendously but hasn't permanently diminished the pain; it still comes back if I sit for any length of time.

I went in for an MRI this week, which was an experience in and of itself. Waiting to hear the results. Once they come back I have a referral to a local pain clinic that's supposed to treat this condition. If successful I'll pass along their information.

Update, 2009-11-29

Well, the MRI came back normal, which is not what I was hoping to hear. Been depressed and irritable the last couple of days, just getting really sick of dealing with this pain. But I did get in to see a pain management specialist, who asked me a lot of questions and gave me the "C" word -- as of today I am officially diagnosed with coccydynia. I have an appointment to see a physical therapist next week for some exercises, and the week after that I'm going in for injections. The specialist was optimistic about treatment success, and seemed knowledgeable about this problem. Here's hoping we can clear it up.

Update, 2009-11-30

The physical therapist had a cancellation so they got me in earlier than expected. She taught me some basic exercises that should increase range of motion in my tailbone -- she said it was really rigid. What I've been doing is, I'll slouch forward and clench my butt cheeks like I'm holding in gas, hold for a second or two, release, then straighten my back into an upright position. Repeat several times.

There's also a variation of this where I sit on a hard cylindrical object, maybe an inch in diameter, slightly to the left or right of the tailbone. Clench, unclench, sit upright, and then do a range of motion in all directions. She says this relaxes the glutes, allowing the tailbone to move a bit more freely. So far it's helped a little, but I'm still going in for injections on the 8th.

Update, 2009-12-13

Monday 12/7/2009:

I had the basic steroid injection today, which the doctor applied using fluoroscopic guidance. I was fully conscious the entire time. There was some minor initial pain when he administered the local anesthetic. After that I sensed the needles passing through the coccyx joint but there was no pain associated with it. Felt 100% relief immediately afterwards and it lasted most of the day.

Tuesday 12/8/2009:

The anesthetic wore off, leaving some soreness at the 2 injection sites (one on each side of the coccyx), but only when I sit or press on it. There is also some discoloration but nothing serious. Some coccydynia discomfort remains but I'd say it's about 60%-70% improved. I was advised to continue using the cushion, but was able to sit the entire day at work without issue.

Thursday 12/10/2009:

After two days of relief, today was a relapse. The discomfort when sitting is back, around the same level as it was before the injections, but not quite enough for me to go back to standing yet. I called the clinic and was told it wasn't typical for the first injection to have lasting permanent improvement. It's more to gauge how I respond and decide how aggressively to proceed. I got another pain prescription (not optimistic there, as nothing I've tried has ever helped), and I'm scheduled for another injection session on the 21st... They can't do it before then as it takes time for the body to process the steroid.

Feeling frustrated and discouraged... I can't imaging living with this for the rest of my life. I know there are far more life-threatening, debilitating conditions I could be suffering, but I can't imagine any of them being quite as irritating.

Friday 12/11/2009:

Today was a little better. Taking the tramadol the doctor prescribed, and it seems to be somewhat alleviating the pain of sitting. Realized I made it through the week without having to work standing up. If I tuck my coat between my back and the back of the chair I can usually get reasonably comfortable. Reclining is slightly better than it was prior to the treatment. Just need to hold out until the 21st for the next round.

Update, 2009-12-20

Much better this week. I'd say it's about 50-60% improvement. I still have periods where it's uncomfortable to sit, but they're not as severe and don't last as long. Reclining is usually the most comfortable position, whereas before it was the least. The tramadol definitely helped for the first week, although it sometimes leaves me a bit drowsy and lightheaded. Still using the cushion at my doctor's recommendation, and still doing the physical therapy exercises. I have high hopes for the second set of injections on Monday.

Update, 2010-01-03

No significant improvement from the second set of injections. It hasn't relapsed, either -- I can still sit comfortably with the wedge cushion, but can't make it through an entire work day without it. I'm meeting with the doctor on Monday to discuss whether to continue corticosteroid treatments, or possibly look at more aggressive options.

Update, 2010-01-10

Had a follow-up meeting with the doctor, in which I told him that the first set of injections helped considerably, but I hadn't noticed much improvement after the second. He said this is not uncommon, and that physical therapy might help to alleviate the remaining discomfort. Trying to set up an appointment with a physical therapist in my area familiar with coccydynia treatment.

In the meantime, I found the Brenda's method of external coccyx manipulation and have been trying that. I'll sit on the toilet (with the lid down), feel for the tip of the coccyx and cup a finger around it, then pull back as I sit up straight. Most of the time nothing seems to happen, and I've been told my coccyx is very rigid. One night though, I definitely felt something move.

The next day, I was able to sit semi-comfortably at work without the cushion, though it was wearing on me toward the end of the day. The remaining discomfort changed from a dull ache to what I'd describe as a bit more "focused"... not sure if that makes sense. It's still there, but not as draining to deal with. Most days I can make it until partway through the afternoon before I have to rely on the cushion. I tend to alternate, using the cushion all day one day, then trying it without the next.

Haven't been able to noticeably move the coccyx again since, but I plan to keep trying. Not entirely convinced whether it's the manipulation or if the last steroid injection finally kicked in, so I may decide to go back in for a third if I don't see any further improvement from manipulation.

Update, 2010-01-17

I learned a lot from my two physical therapist visits this week.

It appears my coccyx is actually bent inwards, and a bit to one side. Not sure how this wasn't noticed on the X-rays or MRI, but she did a couple of internal adjustments. She seemed very knowledgable about how all the muscles and bones in the pelvic area work together and how abnormalities can contribute to coccydynia. She also gave me a set of exercises to do before bed and in the morning. I'll describe them in case anyone else wants to try them:

· First, I'll lie on my back, bring my knees up to my chest, and try to spread the knees outward while simultaneously pushing against them, providing resistance, with my hands. Do this for 5 seconds, repeat 5 times.

· Second, I'll sit on the edge of the bed, arch my lower back as much as possible, and gently "bear down" as if I were trying to have a bowel movement. Repeat 5 times.

· Third, I'll lie on my back, tighten my stomach muscles, lift my buttocks, hold for 2-3 seconds while keeping my stomach muscles tight, then slowly lower back down. 10 repetitions. There is also a variation on this where I lift with each individual leg.

· Finally, I'll put a folded pillow between my knees, lean backward so I'm resting on my forearms, and gently squeeze both knees together. Hold for 2-3 seconds, then release. 10 repetitions.

These are all designed to help stabilize and relax the pelvic floor muscles, as the therapist confirmed mine are very stiff, making it difficult for the coccyx to move on its own. Hopefully with a few weeks of sessions we can turn this around.

As I'm a bicycle rider, she also mentioned how certain types of seats such as gel cushions may not be the best choice for coccydynia sufferers. One of her other patients has found a good seat, and she's promised to get back to me with details, which I'll share.

Update, 2010-01-24

Lots of new exercises this week:

· One where I lie on my back with knees bent and both feet flat on the floor. I place my right foot up against my left leg, above the left knee. Then bring both knees up toward my chest. Grab around my right thigh with both hands. Hold for 30 seconds, then repeat for the other side.

· Lying on my back, I keep one leg straight and pull the other knee to my chest, then across my body toward the opposite shoulder. Hold for 20 seconds. I feel the muscle on the back of the thigh/buttocks stretching when I do this.

· Lying on my back, I keep one leg straight and raise the other with a towel or sheet stretched across the foot, with one end held in each hand. I raise the leg and slowly straighten the knee until I feel the muscle in the back of the leg stretching. (Hamstring stretches, basically.) Hold for 30 seconds, repeat for the other leg.

· Lying on my back, tighten my stomach muscles, lift my buttocks and one leg. Hold for 2-3 seconds while keeping my stomach muscles tight. There's also a variation where I use a long rubber strip she gave me that I'll wrap around a bedpost or doorknob and, while I'm lifting the leg, I'll use my arm to pull the band down toward the floor. 10 reps with each side.

· Put my back against a wall and slide down into a squatting position, with my knees spread as far apart as possible. This can also be done on a step by leaning forward and spreading the knees apart, if the squatting hurts your knees. (It does mine.) Hold for 30 seconds.

· Lying on my stomach, I slowly raise myself into a sort of push-up position, but with the weight on my forearms and knees. Hold for 15 seconds (eventually work up to 60). 4 reps. Once you get used to using your knees, start doing it with your toes.

This week marks the first time since my first ganglion impar injection that I've noticed significant improvement. There is only a very mild discomfort some (not all) of the time when I'm using the wedge cushion. I still haven't tried sitting without it. Just taking things easy for now.

My therapist says this was probably caused by my pelvic floor muscles becoming very tense. I don't remember all the details, but it caused my sacrum to tilt inwards somewhat, and the coccyx along with it. She used an ultrasound machine to relax my pelvic floor muscles. This involved filling a condom with some warm water, placing it between my buttocks, then applying some sort of gel and running the ultrasound applicator back and forth across it. (I know this sounds strange. But it definitely seems to be helping, so I'm not going to argue. It's much less invasive than the attempts at internal coccyx adjustment. Although she did do some probing of the muscles that attached to the coccyx, and was able to detect the improvement from there.)

More to come, I'm sure.

Update, 2010-02-07

Last week was pretty good, although I did have a bit of a relapse on Wednesday and Thursday where I started to get uncomfortable sitting even with the cushion. It recovered on its own, which my therapist said was my body working to stabilize itself, and the exercises I've been doing have helped with that.

I bought an inflatable exercise ball and have been using it as a chair at home when I'm going to be sitting for long periods. It helps correct my posture, forcing me to sit up straight with my lower back arched and both feet on the floor. It's also supposed to subtly strengthen various muscles since you need to use them to stay balanced, and it keeps you a bit more active even though you're seated.

So far it seems to have cut down on the discomfort from long sitting sessions, something that's been a problem even with the wedge cushion with my old chair, which was made for reclining and is low to the floor so that my knees were up higher than my tailbone (which puts a lot of pressure on it). Other parts of my back do get a bit sore since they're not used to properly bearing the weight, but it does clear up when I take a break, and seems to be improving the more I do it.

I got the 75 cm version of the exercise ball. It might be worth a try for other people. They're not expensive, around $20. You can also put your arms on it and roll slowly forward and back, and to the side, to strengthen abdominal muscles.

Update, 2010-02-21

I've had slow but steady improvement over the last couple of weeks. Usually there's a bit of discomfort mid-morning, which goes away in the early afternoon but comes back toward the end of the work day. It's mild, though. I haven’t had to use the “sit with one ankle under the opposite leg” method in over a week. I feel like I'm at least 90% there.

My physical therapist checked and said my pelvic bones are staying where they should, including the sacrum. The pelvic floor muscles are a lot more relaxed now as well. I may end up doing some of the daily exercises for a lifetime but that's a small price to pay for ongoing relief.

Next week I plan to try sitting without the cushion for increasingly longer periods.

Update, 2010-02-28

Mostly pain-free this week. I've been gradually easing myself away from the wedge cushion, and it's gone pretty well. I started sitting without it for an hour, toward the end of the workday, and added another hour each day. I'm about as comfortable without the cushion now as I am with it. Still using the backrest, as it helps me maintain a good sitting posture. I've been trying Kirin's breathing technique; unclear whether it's helping. At this point I feel as though I'm more or less "cured". Still have a few PT appointments over the next few weeks, but with increasingly longer periods between them. I plan to continue the exercises and use the inflatable ball for sitting when possible.

Unless there's a major relapse, this will likely be the end of my regular updates. I'll close with some personal recommendations of my own, based on what I've learned over the past 5 months:

Try the exercises, breathing and self-manipulation techniques first. They're easy and free.

If that doesn't help, go to a general physician for X-rays. Preferably SITTING X-rays. If they won't take sitting X-rays, try to find a doctor who will.

If the X-rays show nothing, consider an MRI. Sitting MRI if possible, but a lot of machines aren't designed for this. It's an expensive test, but it'll help with diagnosis and ruling out other causes.

Consider trying physical therapy before escalating to injections, if you can find a therapist familiar with treating coccydynia.

If you decide to go with injections, ask for a referral to a pain specialist with a knowledge of coccydynia. If your physician doesn't know any, find one yourself. I found mine by Googling "coccydynia" and the names of larger cities near where I live.

The pain specialist (Dr. Demaceo L. Howard) and the physical therapist (Roberta Stergar) who helped me are listed in Doctors and specialists in the USA, Illinois.

I hope all of this will be helpful to someone.

Update, 2010-06-20

Since the last time I wrote, I have only been to one physical therapy session, sometime in March. I remain almost completely pain-free. I've read the "Headache in the Pelvis" book and have come to recognize some of the behaviors described therein (tightening of the pelvic floor muscles in certain situations) as things I do instinctively.

Since then I have been making a concentrated effort to relax these muscles when sitting. I do the "cobra" position yogic stretch a couple of times a day. In the shower I will put my hands on the bottom of my butt-cheeks and give myself a brief but vigorous massage of the pelvic floor muscles (it sounds odd but it seems to help). I still use the backrest at work, but no coccyx cushion. At home I continue to use the exercise ball as a chair. I got a different bicycle seat, one that places no pressure on the coccyx, adjusted it so that it tips forward slightly, and try to keep my back and shoulders arched when I ride.

Once after a particularly intense bicycling session, I felt the pain returning when I sat, but by taking the few simple steps above, I was able to make it dissipate after 2-3 days. Most of the time I'm still vaguely aware of how I sit, and sometimes there is some mild "phantom discomfort" that I attribute to my body still being overly sensitive to any notion of pain in that area. Everything I've read on pelvic floor relaxation says it can take a long time (months to years) for the body to unlearn its old habits.

Overall I consider myself cured, and have no problem with the idea of going through the rest of my life like this. I wish the best of luck to all others suffering from coccyx pain, and hope my account has helped some of you out. Thank you again for your website.

Update, 2011-07-17

It has now been over a year since I stopped going to physical therapy sessions, and I can confidently say that my condition is under control.

I haven't had any pain or discomfort that has prevented me from sitting for any length of time. I'm still using the exercise ball for sitting at home, and the bicycle seat with an opening where the tailbone would rest. At work I take care to sit up straight and tilted slightly forward, so that the pressure goes on my pelvic bones rather than the coccyx.

Nightly, in the shower, I will hold a finger against the pelvic floor muscles on either side of the tailbone for about 30 seconds each, then do the "massage" technique I described above. Most of the time I don't feel anything, but occasionally there will be a mildly sharp sensation as the tension is released. This is most noticeable after riding the bicycle, sexual activity, and stressful situations. I've learned to recognize these as triggers for the unconscious tightening of the pelvic floor muscles, and to do the manual "bearing down" during and immediately afterward, and whenever I think of it during the day. I'm finding I'm unconsciously keeping these muscles more relaxed now than I was before.

All of this is a small price to pay for my continued relief. Everyone's case is different, but there is hope. I wish everyone else here the best of luck in your own personal recoveries.

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