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Patty - Pattylue22@hotmail.com
Posted 2008-04-13
My name is Patty. I was born with a congenital deformity of the coccyx and sacrum. I first knew something was terribly wrong with the birth of my first daughter. It took me three and a half hours to give birth. Afterwards, I was in worse pain than I was during labor.
I found Dr. Bartol (see Doctors and specialists in the USA, Michigan) here online and contacted Trish. Since then, her and I have become "phone buddies". She is definitely become my friend. I had my coccyxgectomy in June of last year. It is now April and I am still in a great deal of pain in the area as my sacrum now sticks out just as far as the coccyx did. I still get occasional bed sores.
Many doctors have told me that there is nothing they can do except pain control. I now also have a disk bulge at L4-L5 and a lateral tear at L5-S1 that has disk matter right up against the nerve. So, I am in pain constantly. I still can not sit or lie in my back. I am in therapy for the disk problems but I don't know what to do about my sacrum as nobody in my area is qualified to help me with that. My husband is a truck driver so going back to Detroit isn't an option and Dr. Bartol feels there is nothing he can do for me either.
I am becoming very depressed and feel that I have hit a dead end. I keep praying for a miracle. I would love to talk to anybody going through the same.
Update, 2008-04-27
Hello all! Well, a lot has been going on the past few weeks. My nurse Diane thought it would be a good idea to do a steroid injection around my sacral area. Wow!! OUCH!!!!! I had the injection last Thursday and I am in soooooo much pain. I have to carry my boppy pillow EVERYWHERE and use it to sit and sleep at night. Somehow it weezled out from under me when the kids and I took a nap today and I woke up to the most excruciating pain ever!!! That usually happens when I end up on my "butt".
I was wondering if anybody else has had an injection since their coccyxgectomy!?! I feel like I've had my surgery all over again. That's how bad it hurts! I am going to make an appointment for the doctor in Duluth since Dr.Bartol feels that there is nothing more he can do. It is sooooo frustrating that there is nobody in the area I live in that has had any experience with coccyxgectomys or tail bones like mine.
I go to a wonderful clinic that is managing my pain very well and I absolutely LOVE my nurse Diane. I just wish they had more knowledge about what I have and what to do. I saw the neuro doc today and he had no clue as to why I am in more pain now after the injection than before. Boy! Do I wish I didn't have it. I pretty much knew what he was going to say today before I went. I know the drill!!! I feel like a deformed mutant.
If there is anybody that has had an experience like mine with an injection after surgery could you please e-mail me at Pattylue22@hotmail.com? Thanks!! I will update soon!!!! Going to make an appt. in Duluth and keep up with physical therapy for the bad disks in my back. I'm also going to make an appt. for a psychiatrist because I'm getting very stressed out and depressed at times due to this pain controlling my life.
Patty
Update, 2008-05-04
Well, I don't know what else to say but OWWWW!!!! I am 10 months post op and I am having more pain now than before my surgery. My sacrum seems to stick out farther than my tail bone did and I keep feeling this "popping" in my sacrum with a ton of pain in the area. Dr. Bartol has released me and I was wondering if anybody knows of a good surgeon that is near me?!?! I am in the Chicago area. I was already seen at the best hospital in Chicago (Northwestern) and admitted for a week last year and they knew NOTHING about coccygectomys. My e-mail is Pattylue22@hotmail.com.
Is it possible that I may need a second surgery? I still have my SI joint. My GP is doing very well at managing my pain but nobody seems to understand or have knowledge about what I have. I will make an appt with the doctor in Duluth tomorrow but if anyone has a better suggestion please let me know!!
-Helpless and in pain in Rockford-
Patty