Since I settled my work comp case, I have seen two neurosurgeons of my choice. I had to get a new MRI of my cervical spine and more x-rays taken. Both surgeons say the same thing about my diagnosis and the plan of care. (I will write a blog post, eventually, with more details about what has happened and is going on with my neck.) Essentially, I need another cervical spine fusion to redo the first surgery that didn’t heal. My fusion didn’t fuse, which is called a non union or pseudarthrosis. Both surgeons told me that they are ok with it being on my own time. They said that I will know when I can’t take the pain or the lowered quality of life anymore. I am allowed to start doing more activities and to live without restrictions. I am suppose to use pain as my gauge, but at the same time, try to push through some of the pain too. That way we can see what my body can handle and not handle, the things that make it flare up and the activities that may make my symptoms worse or even improved a bit. The surgery I need is apparently worse then the one I’ve already had. It’d be a longer time in the neck brace, a longer hospital stay and, in the words of one of the surgeons, “a fucking lot of pain.” Then he apologized and said, “I just want to be honest and up front with you now, so you know what you’re getting into.” I really appreciated that kind of brutal honesty. I can’t even imagine another surgery right now. I’d like to push it off as long as possible. I have daily pain, but I have more days with tolerable levels of pain then I do of total incapacitated days. My PT is also on board with helping to stave off a surgery. I am suppose to give up bedside nursing to help preserve some of my neck and buy me more time before the next surgery. I will continue with PT, massage and any other remedies that help with building a good quality of life with tolerable amounts of pain and neurological symptoms. I hope I can make it multiple years from now, but I’d be happy with at least an extra year before needing this revision.
I also had to see a rheumatologist because my hip surgeon is concerned that with my hypermobility and the lack of fusion in my neck, I could have a rare disease. He said most doctors don’t look for it and it can be easily missed. He sees the diagnosis a lot with his patients with hip dysplasia. It’s called Ehlers-Danlos Syndrome, EDS, and there’s different degrees or levels of it. I went to the rheumatologist and had a great visit with the doctor. He said he actually doesn’t test for EDS and that I’d need to see a genetics doctor. He still did a comprehensive background assessment on me and discussed ways to preserve my neck, body in general and all the orthopedic changes I’ve had. He doesn’t think it’s necessary for me right now to go to a genetics doctor and thinks the likelihood of me having EDS is small. I’ll take it! I’m so so tired of doctor’s appointments and DO NOT want any new diagnoses. I’ll continue with the vitamins and supplements I’m taking for now and continue to see how my body functions as I start living a more full and activelife again.