So, yesterday I had my appointment with my neurosurgeon, and I was finally released to go back to work full time starting in January....almost 6-months to the day from my decompression surgery.
So, my question is now what?
What happens now? He said I can call and ask questions anytime I want or need to or whatever. But, what do I do now? Do I need to have a doctor that keeps up with everything to make sure everything is going okay or do I not worry about it unless I have an issue, I just don't know what I'm supposed to do.
I am following up with yearly MRI ordered by my NS for the next two years. I will have the MRI and see him once a year. Then also follow up with NL every 3-6 months. You are honestly the BEST person to know that everything is going okay. You will know before any of them. If you have any pains that aren't normal, don't go away, are different than you have now, etc. you should let them know. I would continue to chart all your symptoms because those little boogers sneak up on you! Oh, and take a breath! You're released back into the world-it's cause for celebration! :D
When my NS released me to go back to work, he just said "Keep an eye out for symptoms, no one knows your body better than you, if you feel like symptoms are recurring call the office and we will discuss what needs to be done." He has been very good to me, he tells me what he would like to be done from a medical stand point and I take his requests to my family doctor who starts the process.
Just keep an eye on yourself and if need be ask a family member or friend to keep an eye on you... I twitch on occasion and I don't even notice it anymore but people around me do.. so they will ask me if I felt that twitch or not... I keep a journal for symptoms and I document what the symptom was and who noticed it. That way if I go to the doctor I can show them what has been happening. My family doctor tends to worry when I'm not noticing symptoms anymore... so he orders new tests if I haven't noticed symptoms as much as others.
I don’t have a PCP or a NL. The NL I had I fired and found the NS. My NS doesn’t have me set up to do any more follow-up any things. I guess I need to find a PCP that knows something about Chiari (ha!!).
I feel good most of the time. My biggest issues are the twitches. My hands mostly. But good usually.
I guess he is having me do the watch yourself thing. It makes sense, I know about myself better than anyone else.
You might be able to find a doctor that is willing to learn about chiari. My doctor knew nothing about it, didn’t know it existed until he took me on as a patient. Now he reads up on it weekly and has subscribed to neurological medical journals. He actually thanked me last year because he was able to help a patient (whose original doctor put him on anti psychotic meds because the doctor thought he was a chronic liar and a drug addict) who came to him with symptoms that matched what I described (my doctor took me on a year after my surgery) and my dr sent this man for an mri and sure enough, it was chiari. I’m fortunate to have found a doctor still willing to learn… and not willing to label someone, if you say you have pain he believes you and tries to find out why.
I hope you have luck finding a great doctor in your area and I hope your symptoms lessen and lessen over time.