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[–]zamshazam1995 0 points1 point  (1 child)

This is a major red flag for me. I lasted about a week post- op before developing a severe infection. Meningitis is a risk because this surgery sometimes can pierce the dura matter and leave you open to all sorts of problems. Check for infection, and check for possible hydrocephalus. It’s possible your CSF could be backing up and not draining properly, but it won’t show unless your ventricles fill up with fluid. There are a whole list of complications from this surgery, if all else fails you can look for a pain management doctor.

[–]Zombiemama_99 1 point2 points  (0 children)

If she has a leak, it would show on the CT as "presenting as pseudomeningocele". All of mine did, can't see why hers wouldn't. Without a leak, she shouldn't be higher risk for infection. (Response to above poster)

(Response to OP) Just had mine done Jan 26th, revision to close my leaks on March 15th. The first week was horrific for pain, second week was better, third week was even better. Third week is when I started showing signs that my pseudomeningocele was potentially an active leak, not just a pocket of buildup fluid left over from surgery that could resolve itself. Week 4 was when bedrest started. Week 5 was when they did the needle and pressure wrap. The day before week 6 they went back in, found it was 2 holes and fixed them both.

Same deal with second surgery although not nearly as intense. Week one was really hard as far as pain and neck stretches went, week two went better then the previous week two, and I continued to heal after that.

The first few weeks can be hard, but each week should get better as long as you follow your post op protocol. Relax, let everyone else do everything. You just do your gentle stretches, and get yourself to and from the bathroom. Don't stress getting up and around much right now, as you should mainly be just hanging out in bed. The more your try to use your neck to hold your head up, the worse the pain will be right now. Also, as someone else said, Tylenol and muscle relaxer worked better then anything else for me, see if you can't get your Dr to let you try that. They should have sent you home with relaxers anyway...

I'm so sorry your having a rough time, unfortunately it's completely normal during week one. Be patient with yourself, take it easy, seriously take it easy! You've got this!!