9 years of pain

Chanda

Posted 2008-03-23

I have been living with coccyx and sacrum pain for 9 years. I have been to every kind of doctor imaginable. I have had chiropractic external and internal manipulation, electro therapy, physical therapy, cortisone and epidural shots, all kind of meds and just about everything except surgery. I am trying to find a surgeon in the Northwest Arkansas area that will perform the surgery, but no luck yet. If anyone out there knows of one around here please inform me. I am to the point of absolute desperation because of this excruciating pain that never goes away even for a second.

Update, 2008-05-04

Well thanks to this web site I have finally been able to get some relief after 9 long years. I have been getting Bowen therapy, taking Glucosamine and vitamin B6, and I received two piriformis injections (one on each side). I had the second piriformis shot on Wednesday and I must say that I can hardly feel my tailbone. I don't know how long this will last, but at this point I am grateful for any relief.

I am so thankful for this web site, because without it I would never have known about the piriformis issue. I hope everyone can finally get to bottom of their problem and find relief - I am praying for all of us who suffer with this awful problem.

Update, 2008-05-18

Well that relief was short lived. The piriformis shot is starting to wear off. I have an appointment tomorrow with a surgeon who is willing to remove the tailbone. I’m scared to death about it, but I have been waiting for this for 9 years, so we’ll see what happens. Maybe he can come up with an alternative that no other doctors have thought of yet.

Well finally went to an orthopedic surgeon yesterday and guess what???? The coccyx is still dislocated after all these years. So based on the history of this and all the failed treatments I have decided to go ahead and schedule the surgery. The doctor is going to remove the piece of broken off bone and hopefully I will be cured. I’m both excited and scared to death about the whole thing. I’ll keep you posted.

Update, 2008-05-25

I have begun to get the internal manipulation again today. I am going to the same doctor that I went to before even though I have to travel about 1 ½ hours to get there. He is very willing to try everything in his power to help the patient. His name is Dr. Roger Bullington in Fort Smith, Arkansas. The phone is 479-648-1722. He is a Chiropractor with 14 years experience.

Update, 2008-06-08

Hello everyone. Just thought I'd update on my progress. I just had Botox injections in both piriformis muscles on Tuesday. I am still sore from the actual injections, but I can barely feel my tailbone and have only about 10% of the pain left. I think the pain I feel is probably from the other pelvic floor muscles, but I can't get Botox in them because it can cause incontinence (I'll take the 10%).

What I find strange is that my coccyx is dislocated and has been for 9 years so which came first? Did the dislocation cause the muscles to spasm or did the spasms cause the dislocation? I guess I'll never know. I think everyone who has this awful ailment should definitely check into pelvic floor dysfunction as a possible cause of their pain. I would NEVER have even known about it if it wasn't for this site. I am very thankful for everyone who has posted their story and info. It really helps the rest of us research our problem, cause the doctors sure don't seem to know that much about it.

Update, 2008-07-20

Well the Botox was a big waste of time and money. As soon as the Lidociane wore off I was in even more pain then ever, so bad I was actually in tears. So now I have been doing Physical Therapy and Myofascial release. I think it is helping a little, but according to the Ortho doc I will have to do this for several months.

I have made an appointment with an Ortho in Tulsa, OK who does Prolotherapy. Has anyone had this and has it worked? I'll update after I get it done.

Update, 2008-11-16

I just wanted to give an update on my progress and hopefully someone might benefit from this. Several weeks ago I had a partial rhizotomy of the coccygeal sacral nerve on the left side (Dr. said the left side is dominate over the right). Rather then burning the nerves like a regular rhizotomy a partial only pulses the nerves for about five minutes, resetting the nerve. This was performed by the same pain management doctor I have been going to for the last year. The actual procedure is extremely uncomfortable and caused much more pain for about 2 weeks, but now my pain level is 1 or 2 down from about 6 or higher everyday for the last 9 years. I feel so happy about this and I just wanted to let everyone know that this procedure may really help you.

I am able to exercise without pain now. I can sit all day at work and not be constantly shifting around trying to get comfortable. I am so grateful to this site because this is where I learned about Rhizotomy in the first place. I know that this may be a temporary solution, but I am willing to have another procedure if that happens. I hope everyone finds relief soon - don't give up!

Update, 2009-06-14

Well it's been 8 months since I had the partial Rhizotomy which gave me at least 50% relief, but now the pain has come back. I guess the nerves do come back after RFA and it hurts. You get used to feeling OK and then it comes back. I'm not sure if I want to have the procedure done again. I have spent so much time and money on this problem it is pathetic. I think if I could get medical leave from work I would just go ahead and have this stupid thing taken out of my body. Just wanted to vent a little! I hope everyone is doing well and finding something that works for them. Having this problem really, really sucks.

Chanda

Update, 2010-01-03

After suffering for over TEN years without any relief whatsoever, I finally decided to go for the surgery. I had my tailbone removed on October 16, 2009. I could immediately tell a difference when I woke up from the surgery. You should have seen what that tailbone looked like! It was broken into two pieces and each piece was black with little spikes all over! Anyway I went back to work on December 14 2009 and I can sit (with the coccyx cushion of course) all day and drive, but I do still have surgical pain.

I know it will take about 1 year for a full recovery and I do not regret this decision one bit. I suggest to anyone who has suffered non-stop for years and has tried everything to just go for the removal. I was told I had a 50/50 chance of relief from the procedure and I thought—"well I've suffered for 10 years, so what do I have to lose by doing it? If it works—great –if not well I'll just continue to suffer." If this is a last option – I say go for it!

Chanda

Update, 2010-01-17

Well I’m not doing well this week at all. I don’t know what happened, but I feel a lot of pain in coccyx area—it’s about the same as before, but only while sitting or lying down. I can still do some things without pain that I couldn’t do before, but I feel really disappointed right now. When is this going to end for me? I know it takes about a year for full recovery, but I was hoping for better results. What now???? Just wait –silently—in pain as usual. This really sucks—I hate it so much. I hope everyone else is doing better than I am. Maybe I came back to work too soon, as I have to sit all day 8 hours and have about a 1 hour commute each way. Oh well, there has to be a light at the end of the tunnel, right? I have a follow up with my surgeon next week, so we’ll see what happens. I’ll update next week.

Update, 2011-12-18

After having unsuccessful coccyx removal (which the doc was supposed to take the entire bone out, just found out he did not), I decided to go forth with the spinal cord stimulator. It was great, until it got infected with staph because the lead incision never healed. So I had to have it removed and spend 1 week in hospital.

Now I am totally at my wits end! I also have a completely degenerated disc at L4/L5. My pain doc finally agreed to do a full rhizotomy for coccyx and lumbar. I'm am awaiting approval from my insurance carrier. I really hope this works because I do not know what else to do and I cannot continue to live like this. I have not had one day in the last 12 years with no pain. I hate it---I really do.

Update, 2012-01-22

Just wanted to update on the Rhizotomies. I had the coccyx and bilateral lumbar rhizotomies on December 29 2011. At first the pain was horrible and I felt that I had made a poor decision. But now 3 weeks later I am feeling wonderful. I can actually sit and bend down like a regular person. I should be even better in the few weeks. It's isn't 100% relief, but at least 70% which is huge for me. I really do suggest this for anyone having this problem and going through every other avenue without success.

I would like to recommend Dr. Louis Raso in Jupiter Florida (see Doctors and specialists in the USA, Florida). He is a wonderful, understanding and patient pain management doctor.

I would also like to recommend Dr. Jared Ennis of Fayetteville Arkansas (see Doctors and specialists in the USA, Arkansas), although he wasn't able to fully successfully treat me, he did do his very best and performed every procedure including the partial rhizotomy which gave about 50% relief for about 6 months.

Best of luck to you all.

Update, 2012-04-01

Well the relief of the Rhizotomy has worn off. I think it would have been much better if my back had not continued to go into serious spasm causing the back to go crooked. Thanks to Syrena from this site I have found a Dr. Blumberg in Ft Lauderdale who is willing to at least consult with me and consider a second coccegectomy and possibly fusion of lumbar spine. I have my appointment with him tomorrow. Please pray he can help me!

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