I can’t find anything on this; but I’d really like to know.
I’ve mentioned in posts about this before- but I was diagnosed with meningitis about a week and a half ago.
I was in the ER the first 12 hours waiting for a room, and once I got in one they immediately started me on antibiotics.
They did the spinal tap the day after that and the fluid color confirmed meningitis but my cultures never came back with anything.
They think its because I was on antibiotics before the spinal tap, nothing grew… but that would make it bacterial meningitis right?
Anyway. My actual question is, how long can I expect the pain to last?
I’m still on some pretty strong pain relievers.
My neck and shoulders are constantly in pain, and I’m sure part of it is due to the surgeries I had prior, because all of this happened in a matter of two weeks- but its like I’m trying to hold up a cement block all the time and I’m being crushed and a stabbing pain. Not to mention the uncomfortability of drain in my back…
Anyone else go through this? I can’t find anything on Google about how long to expect the pain to last…
Judging from your previous posts, I understand that this is a post-operative LP(spinal tap) that was done, correct?
Indices(fluid color, cell counts, protein, glucose) are all altered by surgery. A CSF leak can present with a sterile meningitis(-itis meaning inflammation, not infection).
10 days into treatment without improvement is enough cause for concern to follow-up with your treating MD(ideally an Infectious disease expert and a neurosurgeon(if you are <6months post-operative)).
Meningitis can take weeks to months to resolve but you should be noting improvement at this point if you are being treated properly.
Lack of a positive culture means that they are making an educated guess concerning proper treatment(they haven't been able to confirm which bug they are treating or the sensitivities to the anti-biotics).
Thank you for your reply.
The NS on call came in to check on me this afternoon and said the spinal fluid color is getting closer back to normal, and they’re clamping it off tomorrow even though they’re leaving the drain in for two more days, but they’re sending what’s been collected off for another culture.
As long as my incision stays dry and I don’t get any headaches during the two days of the drain being inactive I won’t be getting the shunt before going home.
They told me it was both inflammation as well as infection, and I was kept on the infectious disease floor for the first 3 or 4 days until I needed to have the drain inserted. I had an infectious disease specialist and even called in a neurologist for me, but my cultures were atill inconclusive, all they could confirm was it was meningitis.
Most of my initial symptoms have gone away, like they intense eye pain and light sensitivity and the majority of my neck stiffness; but I still have tenderness and rednesss at my incision, Along with a lot Of pain At my neck and Shoulders; but I don’t knoe if I should attribute that to my two prior surgeries or from the infection.
Every doctor says something different of course.
I guess they’ve just been assuming it’s bacterial since I’ve been responding well to the 3-4 different antibiotics I’ve been on along with steriods.
The different doctors I’ve spoken with have all said its normal to still be in the pain I’m in because that’s just how meningitis goes… its very frustrating.
I had chemical meningitis after my surgery due to a CFS and it lasted about 3 months (partially due to improper treatment by the hospital) once I was receiving the correct treatment my pain started to subside in a matter of days, I was on high dose steroids to help with the inflammation, no shunt was placed (and looking back I wish they had because I now have reoccurring syrnix and a new herniation). but after they started the IV steroids I was feeling better in 2 or 3 days maybe a week tops
Yes, I’m finally home from the hospital. They released me friday after a little over two weeks.
They never officially figured out what kind it was, but it was assumed to be bacterial since the antibiotics worked.
I was on about three or four different ones for two weeks.
And they put me on IV steriods as well after the first week. They had a neurologist come in and she suggested adding steriods to help with the pain and they made a huge difference. I was on those about a week.
When they discharged me my spinal fluid was clear again and my white blood cell count was almost back to normal.
They said I was lucky to have started treatment so quickly and it helped with recovery time, but that I could still end up feeling the after effects of it for months.
I think my pain now is mostly just surgical related, not infection related.
I’ve heard it can come back though, and I’m terrified of that.