Bacterial meningitis sufferer

I am now home resting from a bout of bacterial meningitis. I was in the hospital for 8 days. They said if I hadn't come in the day I did I would have died the next day! Great news to hear! This happened after a few surgeries on my back which included putting in and taking out a spine pain pump. This was very hard for me because the pain pump had set me from from years of taking opiates and being in constant pain in my low back from a fall. Evidently my pump got infected and went into my spinal fluid. The drs said they had never seen such weird organisms before. I cried for days when I found out I was to lose my freedom from pain as I was feeling so good. I had a new kease on life. I could do things with my grandkids again! My husband and I could have a love life...then the meningitis showed up and tore my life apart. Well to say the least I am in the throws of trying to rest. To sleep. To eat. To keep from being utterly depressed. They said I could have another pain pump in 6 months to a year if it all goes well. I really want it to work out so badly. I have 7 beautiful grandchildren and now that I'm back on opiates again I can't do much plus recovery of a few months for the meningitis. I have my faith in God which keeps me positive and gives me hope. This is a beautiful community. We have nothing like this in the USA. Our medical system is much different here too. My surgeon is so wonderful and kind. He knew how much I'd gone through that he actually came by my house to take out my sutures from my surgery! Amazing huh!! Well this is all new to me so it has been a lot of help to hear your stories although I haven't heard any Bacterial Meningitis stories. Would love to hear your stories but sorry you are going through it. What kind of diets are you on? I suppose I can look that up. Blessings to you all. Cloudlover in KCMO USA

13 Replies

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  • Glad to know you are getting better. I did have bacterial meningitis about 26 years ago and made a good recovery but it was very scary at the time. I hope you find some relief for pain symptoms, sorba

  • Thanks for your kind words. I am doing quite well. I take opiates for my back pain and that seems to help any headaches I might have.God bless you!

  • I can't believe someone out there has a story so similar to mine! You are so blessed to have made it. I too had contracted BM from surgical implant. My implant was a spinal chord stimulator. As far as I know it hasn't happened to anyone else ever. None had ever been reported to the CDC. My bacteria was a "super bug". I had a difficult fight to live. Total recovery takes time. But you have done the hardest part. You survived!

  • Thanks so much. I also have a spine stimulator. It didn't seem to be touched. I'm so glad you are doing better. I do feel very tired and weak most of the time. My pain is helped from my back pain pills. They also told me they had never seen any organisms like mine. It has been a tough battle. I went home with 10 days of antibiotics through a PICC LINE. Now my husband who has Parkinsons just rest and take it easy. I wish the very best for you dear one.

  • Glad to hear you're improving! BM is a life changer for sure. I have found a wonderful neuro MD who has me on the right path I think. Most symptoms gradually improving but hearing. My otologist suggested low sodium diet which seems to help. I get down in the dumps once in awhile but less frequently since I have put it in God's hands!

  • So glad you are on the right path to healing. Yes Gods hands are the best ones to be in. I haven't quite felt the full effects of BM except for being weak and tired most of the time. Take care. Wish you the best.

  • You are fortunate to be alive! Take time to rest and heal from the meningitis. Are you still seeing an infectious disease doctor? Are you still on antibiotics for the meningitis? I live in Wichita, KS, only about 3 hours from you. Mine was caused from a ruptured eardrum, so I didn't have the surgery to contend with, although I did end up with a left frontal lobe abscess on my brain. You may find that you will have after effects. Some may be permanent. For me, it's some confusion, some balance issues, and frequent headaches. I now see a neurologist who is trying to get me on the right "cocktail" of meds to reduce the number of meningitis headaches.

  • God bless you. It is so very difficult to explain what were going through. I have never been so sick in all my life. I cane home with a PICC LINE and had to make bags of antibiotics for 10 days. Now I am pretty much on my own except for my surgeon who is my pain dr for my back. I feel kund of alone at times. My husband is a very big help. He has Parkinsons so we rest and work together on our situations. It took a lot out of him trying to come up to the hospital KUMED CENTER. It was an incredible experience. I had teams of drs round the clock working on me. Glad to hear you are getting help.Thanks for contacting me.

  • Keep up with this forum. Keep posting as to how you are feeling, especially if after effects pop up. This group was what allowed me to know I wasn't alone in what I was dealing with afterwards. Too many doctors are dismissive once our lives are saved. Hopefully, your symptoms will be minor and you can get the pain pump put back in quickly.

  • Thanks so much. I'm so glad I found you all. It is difficult trying to relate with those who haven't been there. I'm still very tiredand weak. My Dr wants me to do PT. I told him I wasn't quite ready! I can barely get dressed! My huband has Parkinsons and can only do so much. I had a horrible night last night. A lot of pain from my head on down. How are you doing? How manyside effects have you dealt with? God bless and take care.

  • My issues are mainly the headaches. Mainly. I also have mild confusion at times, with a heightened sense of anxiety. Gone are my days of being able to multitask. I have short term memory lapses. I really have to pay attention to conversations and sometimes take notes, or I forget what has been said. For a formerly detail oriented person, that's been tough. Balance has been an issue as well. I find myself falling down for no apparent reason. I can't walk a straight line to save my life. It's coming up on 2 years since I was diagnosed. Those are the after effects I still endure. The headaches are what bother me the most, affecting my quality of life.

  • I can relate to your story, I to had the pain pump in my back and developed bacterial meningitis...I'm 5 months out and still have issues from the meningitis as well as back in the pills!!!! I'm in Texas and not sure what the future holds! God is my rock, just trying to deal day to day!

  • Sorry to hear that. I'm truly leaning on God right now. My pain was so severe all night it was awfull. Dr. And I are trying to figure out what type of pain cocktail I need. Thanks for reaching out. God bkess you and may your symptoms subside quickly back to a decent lifestyle. God bless you!

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