Richard L. - firstname.lastname@example.org
This is an update from previous posts I've made re treatments for a displaced coccyx bone which began in Dec of 2007. (Please read previous posts to see the various treatments none of which had any lasting effect on the coccyx pain levels.)
Additional things I've tried since then (note; they seem to have worked for others); A lumbar extender. Good for releasing lower back tension, no effect on coccyx pain levels. A Sacro Wedgy (see Tina Marie post) no effect at all. Acupressure treatments, about 12. Relieved tension in other areas of the body, no change in coccyx pain levels.
In Jan 2009 I visited Dr Patrick Foye in Newark NJ (see Doctors and specialists in the USA, New Jersey). He did a thorough exam and his sitting/standing x-ray which clearly showed a displaced tailbone, tilting inwards at the 3rd joint. He then ordered an MRI and a colonoscopy both of which showed nothing other then to confirm the displaced tailbone.
A week ago on Mar 6th I revisited him and had a Ganglion Impar injection. The procedure was very well done, very little pain or discomfort. I was told relief could take from two days to two weeks. It is now a full week later and there has been no improvement, in fact the pain levels were more intense this past week then at any time in the past 15 months. At this point it seems highly unlikely that relief is going to kick in. This is the 3rd injection, there were two last summer in Nyack, NY.
Dr Foye suggested that rather then go to surgery as the final solution, to try Radio Frequency Ablation to destroy the nerves around the coccyx that send pain messages to the brain. It involves two separate visits, one to test it, another to apply it. It is certainly not the Holy Grail for healing, nerves can re-grow later requiring further treatment. So, the question I put to all of you fine people and fellow Pain in The Butt sufferers; Would it be better to by pass this and go directly to surgery? Have any of you had RFA? If so, what were the results?
The RFA was done by Dr Foye almost three weeks ago. The procedure was very well handled and was virtually pain free. It was proceeded by a test injection at the same site a day before to see if in fact it shut off pain signals which it did. I was told to expect a flare up in pain levels due to the ablated nerves dying off and to wait 2-4 weeks before judging the result. There was an initial drop in pain levels from a high of 10 to about an 8, Now, after almost 3 weeks, the pain levels are consistently higher and also more intense then before the procedure. Any type of prolonged sitting on any type of surface, including all the usual ( and useless) coccyx cushions etc., causes a quick and sustained flare up. It is hard to say if this is due to the RFA or a re aggravated version of the prior condition. (See above).
At this point surgery to remove the dislocated tailbone is the last option in a long list of failed options. I will allow the full four weeks to pass before going that route. Please feel free to respond if you know of other things that might be looked into that have not been tried prior to surgery.
Wishing you all freedom from pain, Richard L.
This is an update to several previous posts I've made over the past 18 months. Firstly, I would like to thank Jon for creating and maintaining this site, an Oasis for those of us unfortunate enough to encounter coccyx related issues and also for the many people who share their experiences and interactions with the medical profession in an effort to resolve these issues.
It does not take long to discover the general lack of knowledge or even interest by GP's and other professionals on the subject of coccydynia ,for the most part they appear to be clueless and one is pretty much left to figure out the best course of action for oneself. So, here are some tips I've learned for those who have recently begun the journey to resolving coccyx pain.
As you can see from my previous posts, everything possible was tried and NOTHING worked to completely end the constant and often intense pain caused by sitting on any type of surface, including coccyx cushions etc. Over the past year, there were four Cortisone injections performed by 3 different Doctors (including Dr Patrick Foye and Dr Seth Kane) and one Radio Frequency Ablation. While there was some initial relief from these, it was temporary. In my honest opinion, I believe injections are a total waste of time and money (many thousands of insurance dollars and out of pocket costs too) IF one has in fact, a DAMAGED tailbone. And therein lies the rub.
Attached are two images of x-rays done by Dr Foye. I enhanced them in Photoshop to emphasize the degree of difference between sitting and standing. These were done in February this year AFTER going through all the alternative ideas discussed in earlier posts. The ( expensive and time consuming) lesson here is that it is CRITICAL to get a correct diagnosis as quickly as possible, I waited far too long. You must insist on getting a sitting/standing x-ray and yes, they will try to tell you it can't be done. They will also offer injections as they are very profitable for Doctors and quite easy to do.
Of course there ARE cases on this site of people who DID get substantial relief from injections, ablation, internal manipulation and other alternative treatments. More often then not though, they appear to have little if any positive ongoing effect on a DAMAGED tailbone.
As for self administered relief on a day to day basis; The best tool I found is called Thermipaq, a clay based pouch that one can sit on, place in the Microwave for a couple of minutes. It retains heat for about 20 mins, enough for a local trip to the bank or supermarket and for sitting while eating. Costs about $20US. Ice is also good when the pain levels get high, a pack of Peas and Carrots kept in the Fridge or a plastic Baggie with water frozen works well too.
I also go to the gym several times a week and walk for 45 mins on a Treadmill in addition to light weight work. This helps keep the rest of the body fit, keeps weight down and the Endorphins are the best free drug around!
After showing the enhanced x-rays to Dr Seth Kane (Paramus NJ) (see Doctors and specialists in the USA, New Jersey) he agreed that surgical removal was probably the best course of action and surgery has been scheduled for July 22nd at Hackensack University Hospital.
I will make an updated post on the outcome. Best wishes and full recovery for all here, Richard L.
Standing ---------------------------------------------------------- Sitting
Naturally, I had great concerns about going forward with surgery as scheduled, the experiences of others on this site leave no doubt that this is a high risk procedure that has about a 50/50 chance of leaving one worse off then prior to the operation. In fact a member of the site who had had the surgery 13 months ago contacted me and strongly advised against doing it, his pain levels were worse then ever. After much deliberation, I decided to postpone surgery.
One of the most perplexing things about coccydynia is that some things work for some people and not for others, it appears to be a highly personal condition. And so it is not possible to discount any of the treatment options without at least trying some of them. Overall though, based on the posts on this site, it seems reasonable to suggest that in the majority of cases the following options are unlikely to have any lasting positive effect on tailbone pain; chiropractic, acupuncture, acupressure, physical therapy, corticosteroid injections, Ganglion Impar injections, radio frequency ablation, pain medications such as Vicoden and Percocet.
The medical profession offers us only 2 options; injections (which they refer to as "pain management") or surgery, beyond that we are on our own. (** It should be noted that the surgery option is highly controversial amongst members of the medical profession, some suggest it should never be attempted at all)
The last option we have is to create our own pain management protocol and this is where I am at this time.
Nobody knows your body better then yourself and we are best equipped to figure out what works and doesn't work in coping with and even thriving by ourselves. There are many books on the subject of chronic pain, and let's be clear about this, tailbone pain is, for many of us, long term chronic pain.
At present I am reading/working an excellent book "The Pain Survival Guide" by Turk and Winter.
There are so many things that can help; deep relaxation, meditation, a regular exercise routine, and on a deeper level, insight as to who it is that is experiencing pain ( A fine book "Wake Up Now" by Stephen Bodian addresses this subject)
At present, pain levels vary day to day. I try to balance sitting at the computer, driving, watching T.V. etc with laying on the floor relaxing. I use ice for flare ups and heat too. It may be that I will consider surgery again, right now this is not on the table.
At the conclusion of the last update, I suggested that after trying so many of the medical options, we need to become our own experts in managing pain. Since then I've done extensive research and found some very promising non medical ways to not only manage the pain but to be free of it.
Furthermore, if you are new to this site and newly suffering from coccydynia, Levator Ani Syndrome or Piriformis Syndrome, I would suggest bypassing ALL the medical options (**unless there has been obvious trauma like a fall etc. which should be looked at by your GP) and follow these links before wasting time and money on mostly useless procedures like injections or possibly permanent and irreversible damage from surgery .
The first of these links has videos on the home page, listen carefully to what is being said www.pelvicpainhelp.com. These are the ONLY Doctors I've heard describing the condition, it's causes and it's treatment in this way. They have a book available on Amazon," A Headache in the Pelvis".
Additionally, look at these sites for further ideas along these lines; www.yourpainisreal.com, www.runningpain.com. While there is a great deal of very useful information to be found on these sites, you will soon learn that there is no quick fix. This approach takes time, patience and commitment.
And please, do us all a favor and forward these links to every Doctor you know, the lack of information on this subject in the medical profession is truly pathetic.
Wishing all a full and complete recovery,
It's been quite some time since I last posted on this site. This month it is 28 months since the coccyx pain began (see previous posts re treatments etc) and I have continued to search out possible ways to find and heal the cause of this pain. Recently a local chiro was drumming up business by offering free consults. I went, showed him Dr Foye's x-rays and coccyx MRI. He looked at my back and said the lumbar did not feel right, asked for a lumbar/sacrum MRI.
I had that and the results showed a herniated L5 disc and nerves being pressed on in at least three places in that area. He is convinced that this is causing are at least aggravating the coccyx area too.
So, he suggested a course of Spinal Decompression as the best way to heal the condition. I've not seen any posts here on that subject as a way to treat coccyx pain, anyone have any info on that? Or had Spinal Decompression for something else? It is a very expensive treatment and mostly not covered by insurance ( in NY), 20 sessions are required, 2-3 a week. An alternative is an Inversion Table, anyone here try that? Feel free to contact me, and thanks Jon for this site.
Note from Jon Miles - Nad Adkins found that an inversion table helped his coccyx pain. Another patient said that his coccyx hurt while he was using an inversion table, and one said that he tried it but it didn't help him.