Bacterial Meningitis surviver , so far

[Quiltergirl]

I was diagnosed with bacterial meningitis 1/4/19, following a lumbar discectomy with CSF leak ( spinal fluid ) . 2 hospitals, 5 days in ICU.Discharged home 1/11/19 on continuous IV antibiotics. I am blessed to still be alive, from what I understand.

[melpars]

Yes you are blessed!! I too had bacterial meningitis late April, early May of 2018. I was sent home from the ER twice with a misdiagnosis, and they tried to send me home the 3rd day til my husband got assertive insisting there was something terribly wrong with me and he demanded further testing. When they finally did a lumbar and found out what was wrong, I still had no idea how serious this disease was. I just thoight "Ok, get some antibiotics in me and get me home so I can get back to work and life as usual." How wrong I was! When I started reading more about it, I discovered how serious it was, how many lives it has taken, people have lost limbs,extremities, organ failure, blindness, deafness, and so much more due to this hateful disease. It makes me feel bad for grumbling about the side effects I do suffer from now. Almost 9 months later I still have daily headaches (though not as severe as in the beginning), I have daily neck pain, and some spine and muscle pain. Too much physical activity, stress, and not enough rest aggrevates these symptoms. I think what helped to contribute to this is I tried to do too much too early, but I don't know for sure. If I had it to do over again though I would do absolutely NOTHING but rest, nap, and lounge aroung for the 1st 6-8 wks before I tried to do anything. Then try resuming normal activities in baby steps. Just very light duty things in very limited amounts of time and see how that goes, then SLOWLY build up. Stay hydrated!!!! Eat lots of fruits and veggies!!! Rest, rest, rest. Please keep us updated. Congratulations!!!! And Best Wishes For A Full Recovery!!!!

[Quiltergirl in reply to melpars]

Thank you so much for your replies! I was told when l left the hospital I should find a meningitis support group. We do not have local "in person " one. I did an Internet search, some of them were frightening. Meningitis Now is more of a help. It was scary to see how long the meningitis symtoms can last.

[melpars in reply to Quiltergirl]

I wish they would have told me that in the hospital. I asked how long the headaches would last and the Dr. said a litte while. I asked when I could return to work and he said when I felt ready after completing my in home IV antibiotic treatments. I wasn't given any information or indication that I may possibly have any lasting issues. But,it is what it is. This is a wonderful place for information and support. Another site I'm on is also wonderful. You may want to check it out also. It's called Meningitis Survivors and Supporters. It's filled with wonderful people asking questions, trying to answer questions, and offering hope and encouragement.

[Runnerma]

Those of us who have survived bacterial meningitis are most certainly blessed! I had it in December 2015 and still have days that make my hearing & walking more difficult, mostly when I am stressed or tired. As in previous posts, I would encourage you to take it easy & be patient. Also keep in mind that others may not understand what you are going through but you are not alone. Take care of yourself! We are here for you.

[Jackiemerritt22]

I to had bacterial meningitis (pneumococcal) in may 17 i was 47 and was in hospital for 3 weeks 11days off them in critical care. After many doctor and hospital appointments i finally convinced them to do ct scan off ear as i had been having clear fluid leak from nose for years and after looking on internet was convinced it was CSF leak as i said took a while to convince them but ct was done CSF leak confirmed defect in tegman bone operation september this year, Still having problems headaches pulsating tinnitus sore eyes and poor concentration and fogginess they are looking for answer and believe i will need at least one more operation.

The one thing i found so frustrating was that they looked really had to find out why i got meningitis but the one thing that was obvious on scan they ignored as radiologist had stated ??? infection mastoid bone but because it didnt look like it should off they ignored it. As a result it took from meningitis may 2017 until diagnosis june 2018 and operation september 2018 until leak was fixed and all that time i was at risk off meningitis again.

[Quiltergirl in reply to Jackiemerritt22]

Oh my, I'm so sorry to hear what you have been going through. It only took 8 days to finally convince doctor I had csf leak, was getting sign of bacterial meningitis day 6 and sent home from ER. Brought back to surgery day 8 ,large amount of stinky yellow drainage by then. Medical community needs look beyond classic symtoms. I sure hope and pray you find answers and healing. 🙏 We all need continued healing .

[Hidden in reply to Jackiemerritt22]

It frightens me when doctors don't connect the dots. During both meningitis hospitalizations, CT/MRi revealed "diffuse reticular opacities consistent with acute inflammatory mastoiditis," but no one acted on this. It remained a radiologist's note (same with empty sella). When I questioned primary care physician after second hospitalization, he said mastoiditis resolves quickly--yet I had been complaining about my left ear for six months before the first bout of meningitis. Only my own Google (Google!) search prompted him to refer me to an ENT. I'm having the mastoid bone removed in April. Don't know what to do about the empty sella which is spilling CSF out of my nose--again, no one made a connection between objective findings and subjective complaints for years. We shouldn't have to rely on search engines to connect the dots.

[Jackiemerritt22 in reply to Hidden]

I agree its frightening when you know you have something that could potentially kill you. It just seem that there is not enough knowledge off CSF leaks i spoke to both of my GPs one said sinuses the other said highly unlikely dont get me wrong they have been great since and both where very sorry but in there combined service of 57 years neither had even seen a CSF leak. My symptoms where classic chronic ear infections for at least 5 years hearing loss on right side clear fluid from right side off nose but very minimal amount and really only ever happened when leaning forward. Then i got the meningitis and even then they still couldn't put the clues together. Since my repair i have been suffering from high pressure headaches and i have high pressure in eyes and still get pulsating tinnitus i am under Addenbrookes and waiting for an angiogram this has been since i had repair done in september it is so frustrating that its not looked at like a medical emergency all the time i have high pressure the leak they fixed could blow out again . My GP also sent me for MRI as Adeenbrookes never did one and its come back with a few things, CSF spaces in subarachnoid thickening of meningeal and some blood flow problems to my venous sinuses ??? they where sent to Addenbrookes as there radiologist was unsure of how to interpret them its been 3 months and they still haven't seen it. You just feel you have to fight all the time.

[Hidden in reply to Jackiemerritt22]

I look at what you've written and I want to yell at your medical providers, "pay attention!!" It's mind-boggling to me (I live in the states) that you have to wait that long for an angiogram.

[sorba]

Sorry to hear this but seems you're on the mend take it easy and keep positive Sorba