Hello my name is Heidi I was in an automobile accident 25 years ago- a drunk driver hit me from behind. I walked away from this accident only to go to the doctors the next day to get checked up due to I woke up the next day with a pretty bad headache. It was found that I had Os Odontoideum so doc put a cervical collar on me and set me to a specialist in Pittsburgh.
I had to get a cervical fusion at c1 -c1 with bone from my hip. About 5 years ago I started to have chronic headaches. I have been to several neurologist done physical therapy went to chiropractor and then pain doctors had different injections. Then about 18 months ago I had a permanent nerve simulator placed on both occipital nerves. Well that got infected where the battery was in my upper buttock and I had to have it removed. So this was removed and at the time it was put in - it was because I told the doctor the trial seemed to help at least with 50% with my pain so that was good enough he said for my insurance to allow. He wanted to put another in after I healed months later and I said no. I was 43 and the more I read about the simulators the more I thought I don't wanna do that again. So this neuro said he could not do nothing else for me! I wanted to get the nerves burned but he said no.
I started breaking down at this point and had to go back to work - the day I went back was to be full time I just broke down and cried and started packing my desk up because I knew I couldn't do it any longer. Well I was offered part time to see if that would help me and that way I was able to keep my insurance. I have been working part time for about 18 months now and I cannot do it any longer I'm not myself anymore I go to work come home and lay down for the rest of the day..
Well anyways here is what I'm struggling with now. I just seen another neuro and had a mylogram and it stated on the results:
"There is relative narrowing of the thecal space at the surgical level and the bony os. This is at or near the occipital foramen level."
"There is some minor posterior osteophytes at c5-6 and c6-7 with minimal impress on the thecal sac"
"There is as os odontoideum with a smoothly marginated fragment which is displaced slightly dorsally. This is similiar in appearance and position to the prior study.
What I need help on is I get a call from the nurse and she said the fusion is good!! Well I new that I have been told that several times over the last few years and that isn't what I really went to this neuro for. I think their is something else wrong and the physician ordered a ct and mri and then he said um I'm thinking there is scar tissue in their that may be pressing up against something so lets have a mylogram. So the doctors nurse said they didn't get all the results back from the mylogram yet so I wait another 2 weeks and when she calls me back again she advises me their is nothing wrong and that they want to try another cervical block and if that works then we can do a ryzotomy, which i did speak with the nuero about when I seen him the first time.
Im sorry if this is so long.. I have written on here before a few years ago under jo1124 I couldn't remember my id so I had to change my account name.
I am taking so many pills and I'm on a pain patch and I'm having anxiety and I feel like I'm depressed now which I was never depressed but I know I am now because I don't want to leave the house I just want to go to bed. I cannot keep up and if I do make myself go to work for that 5 hours I'm in tears when I walk out because of the headache is so bad by then, so I go home and take some more pills and lay down. Meanwhile I have two younger children that need me and I'm not being the parent I need to be. I literally feel like I'm going crazy I cannot keep doing what I'm doing. My mom and several other family member keep telling me to apply for disability and I do think that's going to be in my near future but I've always worked and I'm afraid. My husband makes less money than I do and I'm so scared that we will not be able to make it. When I mention disability to a doctor they seem reluctant to say ah yes you need to apply for disability. My pain physician thinks I should apply but he said he would rather see me working than on disability but meanwhile I cannot function without the medication that he is giving me, now I'm addicted to the med's.
I cannot seem to find somebody else that has had this type of a fusion so long ago. I see this type of fusion being done but I haven't came across anybody in common with me.
Please help I need advise. Heidi