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Jaye - jayemarie@bellsouth.net
Posted 2006-12-03
My coccyx pain started July of 2000. My feet started hurting me first. I went to a podiatrist and he fit me into orthodics. The pain did not go away. He filed the orthodics down and that still did not help. About December my low back and coccyx area started really hurting - I could not deal with the pain. I went back to my primary care doctor and he gave me low doses of opiates for the time being. I got into a pain management place and they did all kind of injections, physical therapy etc. After about a year went bye and this Pain clinic said I think you need to see someone at a University because we just can not help you. One thing this Pain Clinic noticed when they were doing my fluoroscopy injections was they said it looked like I had an extra joint at birth. Mmmm I said!
I made an appointment with University of Miami in hopes that they could help. I finally after waiting 4 months to get in finally went down their in hopes to find a good doctor. Well all they did was have me wait for 6 hours for a scheduled appointment and then tell me once I got in to actually see the doctor there was nothing they could do for me and do not have your coccyx out what ever you do this will scar you the rest of your life. That was the extent of my visit with this doctor at U. of M. I called and made an appointment with Shands (Gainsville, Florida). I went through again with extensive testing (it's been so long ago I really don't remember all I had done - it's been a nitemare). Anyways, they repeated of course some of the testing, they tested me for Crohns Disease and I had a colonoscopy because I was having severe rectal pain along with this bone constantly poking me. It was horrible. In the meantime I just could not commute a 4 hour drive needless-to-say the sitting was horrific! I decided to find another pain doctor closer to my area. The family that I was working for at this time wanted to help me. They were very blessed with having lots of money so they sent me to Mayo, in Rochester, Minn. I spent 2 months living in the cold and was absolutely miserable. They too did extensive testing and I kept telling them that I could feel something poking me but they again was just another disappointment. I did have them do a GAIT analysis which was to see if I had a pelvic obliquity and it did state from my records that my pelvic area was rotating higher on one side. I had read that sometimes when you are put in orthodics as I was in the beginning that the orthodics if they are not made for you correctly it can actually cause problems by forcing your pelvis to rotate. Mayo had done alot of testing for Pudendal Nerve Entrapment and stating that this was my problem but they did not have enough doctors to support this one doctor and his theory. They did a PNE injection but did not help me nor did I get relief from the injection like you are suppose too. I did not further my study on PNE because I basically was burned out! I was off to my next destination Home and in tears!
In the meantime I found another Pain Management doctor that advised me if I were his wife I would have the coccyx removed. He said he could tell from my MRI that it was anterior left hooked and it looked like I was sitting on it and it was poking me. In the meantime I had gone through several PCP doctors who told me it was all in my head. I think when a physician tells someone this it is just ignorance on their part. It's really sad people like us have to suffer for years and take their medical problems into their own hands but I highly suggest that anyone having to do this keep track of all their records, keep any MRI or radiology reports (you paid for them and keep them at home) Just don't check them back in to the doctor (they literally can not do anything about this)I decided to take Shands suggestions and go see a Dr. Earl McAllister over in Tampa Florida. He is a General Surgeon not an Orthopedic. If you have a problem when taking the coccyx out and because it is near the rectal area this is the doctor to repair it. May of 2002 I went in for coccyxgectomy. I was in the hospital for about 3 days if I can remember. I could not sit for about 3 months and it was not a very pleasant experience. When Dr. McAllister came out to speak with my husband he said this extra joint that the first Pain clinic was saying I had was not an extra joint it was my body trying to repair a bad fracture. He said they called it PSEUDOARTHROSIS. We were relieved that this was over with in hopes that I could have my life back. About 6 months went by and I started back to my aerobics training that I loved so much but I was still in pain and could not figure out why. Another year went by and it was about January of 2003. I had called my coccyx doctor on a few occasions and told him that I was still having pain. He said not to worry that this was just healing pain. I said OK, January 27, 2003 I came home early from the gym and told my husband that something had poked me really hard in the rectal area and I felt like this poking thing had gone right through my skin. Sure enough I had developed bone spurs and they had sliced my skin. My husband had contacted the doctor over in Tampa and told him what had happen. I was in the hospital having a z-plasty the next day (emergency surgery). He said he has never seen this in all the years that he has been practicing. I am now wondering if my coccyx fractured because my pelvic area had rotated with the start of the orthodics for my aerobics at the gym. I was in the hospital for 10 days and now I have a Mark of Zorro on my tush certainly not what I really wanted.
I healed from this and it took a long time. I had to ride home in the hospital in an aero bed in the back of our suv - acctually worked out perfect; follow up were the same ride in the car.As time went on I was miserable, depressed and wondering just shoot me! How could anyone have such problems and just not be corrected. After I was able to sit again which took time because the back end was constantly tight I started doing my research again. In the meantime I started doing my search again on the internet. I found a web site called Pudendal Nerve Entrapment. I was desperate at this time to just get relief and help for whatever was my problem. I knew that this was not in my head, I continue working doing housekeeping for a wealthy customer of mine but had to drop other customers because I just could not deal with it anymore. I was extremely despondent over my health like anyone would be. I located a doctor that I could write to over a secure web server called Medem. Through this I was able to make an appointment with the doctors in Houston, Texas. Their was a team of doctors that do the research on the PNE and it is very rare. The symptoms are very much like coccyx pain, you have rectal pain and having a rectal exam was horrible.
I June of 2006 my husband and I flew to Texas to meet with these doctors. They had an agenda for me for this week while I was there. The first day I saw the Neurologist and he did a horribly painful procedure - it was a nerve condition test on my female organs. He found out from this test that my pudendal nerve branch was not firing like it should be. The next day he had me go for the same injection that I had at Mayo but a different location. It worked - I was pain free for 24 hours. Hurray!!! The next day he wanted me to have the Stand-up MRI which is not the norm. This would show his particular findings which he was thinking on the line of Pelvic Floor Dysfunction. When I was at Mayo they tested me for this and I went through physical therapy again but it did not work.The following day I had the MRI it confirmed their suspicion. My rectum had dropped 11 cc which converted is 4 inches down. The following day I had a Defecogram which would also confirm their suspicions. They gave me barium to drink in the meantime I was completely clean out from the nite before. I had to sit on a toilet seat almost like on a CT Scan. and press as hard as I could like you were having a BM (yes, very embarrassing). This also confirm their suspicions. At the end of all my testing the doctor stated that I had a rectocele and that needed to be repaired and they referred me to a physician in Alabama (Dr. Perry) where my husband and I flew the following month to see him. He confirmed with the Houston doctors that I indeed had PNE and that needed to be fixed prior to the rectocele repair. In other words I have several Pelvic Floor problems due to my hysterectomy 10 years ago. Because of the Hysterectomy I developed PNE and because the pelvic was off and not where it was suppose to be they suspect this is how the coccyx got fractured. Dr. Perry in Alabama who is a Urogyn. said more than likely I would of had the coccyx removed anyways because of where it was located now.
On October 30th 2006 I had the PNE surgery and I am happy to say that I can finally sit and don't have the pain like I had before. I am still in the healing stage but it took almost 7 years to figure myself out. Without my husband's help and my self motivation and determination I would of never been able to do it.
So a lesson to all do not except the word NO from doctors. Keep plugg'n along until you get help - this is what I did and I am happy that I did it.
If anyone would like to contact me in reference to my story - please don't hesitate.
Good luck to All,
Jaye
Florida