Scared in NOLA

[NOLA1]

I am now the caretaker of my beautiful wife who contracted bacterial meningitis just 5 weeks ago. The symptoms were not evident, at least not to us. It started with lower back pain earlier that week. We have xrays done, steroids and pain pill prescribed and went home. We thought it was a pinched nerve or some disc problems. Went home, but the pain increased. Had stronger pain medication prescribed, but the pain got worse. Went to the ER twice but she could sit long enough to see the doctor. Went home again and the headaches started, nausea and the feelings of fever. We all thought that this was the side effects of the pain meds and the back pain. Early next day she told me that she was losing vision in one eye and we immediately went to the ER again. They immediately admitted her and determined that she had BM. The infection was a stafp bacteria which not only caused the meningitis but was in her blood as well. We were in the ICU for almost 4 weeks. First clearing up the bacteria in her spinal fluid (about 1 week), then waiting for the blood infection to clear (3 1/2 weeks). During the course of this, she had 3 small strokes. At this point, she can hear, we are not sure if she can see (in one eye), the other eyes lid won't open all the way. There is a lot of confusion. Sometimes she recognizes me and others, sometimes she doesn't. She babbles about work related issues a lot. She is doing physical and speech therapy now. It seems to me that the brain needs to be trained to remember what it already knows. Simple things like swallowing, brushing her teeth, holding a fork. I search the web but can't find anything meaningful except here. I'm in the US and at a major hospital. I believe that the hospital people and their aggressive approach was the only thing that saved her. I am scared and uncertain about our future. She's 57, in good health and was active prior to this. I am wondering what if others can share their early experiences with this disease. I get good news from some doctors and bad news from others about the long term prognosis. Thank you for and God bless.

[MikeGreville]

Hi Contracted BM and Sepsis two years ago Started with sore throat and then joint pain Paramedics and ER on it immediately after my wife couldn’t raise me from sleep. Spent 6 days ICU. Not as bad as ur loved one however it’s a slow process of recovery. I often asked if I’ll be normal again. The answer is you’ve had a traumatic brain injury. It won’t be the same as usual but the brain is a wonderful thing which slowly slowly builds. It gets tired and needs a rest more often. So I learn to pace myself. Point I’m making is there is light at end of tunnel. All the best fit he future and keep on the forum for ideas and advice. Docs don’t know it all

[NOLA1 in reply to MikeGreville]

Thank you so much for responding. She's progressing and hopefully will have the feeding tube removed next week. She's weak but showing signs of improvement with Physical Therapy. Small steps.

[Coco56]

My son had bacterial meningoenchephilitis 6 years ago now , he was 15, it started with a headache that he said felt like someone was hitting him with a hammer due to the quick reaction of my mother who thougt it could be meningitis he was given immediate care as we walked in the hospital ...broad spectrum antibiotics, cat scan etc they also put him in an induced coma which I feel saved his life , he struggled badly with school to start with but through determination and guts He is working full time doing more exams now he still gets dibilitating migraine and is still under his head surgeon and a neurologist , he also still gets things a bit mixed up in his head occasionally , and he does have out bursts of irrational anger and his eye sight had been badly effected , there is always hope with time that some of these things will die down, an old saying time is a healer but with meningitis I feel that is what it takes , I truly hope your wife continues to recover well , it’s not easy on the carer either

[NOLA1 in reply to Coco56]

Thank you. I hope that he continues to see improvement.

[Quiltergirl]

I'm so sorry you're wife ,and consequently you, are experiencing this horrible disease. I contacted bacterial meningitis this past January , right before my 58th birthday. I was also turned away form the ER, returning 2 days later and finally admitted. I don't remember the next 6 days , I was transferred to a larger big city hospital, which saved my life. We are also in the US, there are only 4100 cases of bacterial meningitis per year. Doctors just don't see it often enough. My husband told me I was very confused too. That has almost fully resolved, slow progress. I was an RN, managing a large family practice.

It sounds like you're in a good hospital , and you're wife is going in the right direction. It is a slow healing process. I was not quite as ill as you're wife, i was discharged after 11 days. I had 8 weeks of home IV antibiotics . And now 3 months later I am starting outpatient physical therapy. I was told when I left the hospital to give myself 6 months to 2 years to recover. My husband has been a huge support and help. Your wife is fortunate to have you. This is good support group. I was told to find one, you're ahead of us that way. Prayers going up for both of you!

[Canthon]

I am very sorry to hear this, it is such a fast moving and damaging illnesss. My father has been in the hospital for almost a week now. The doctors think he developed menegitis when strep passed the blood brain barrier through an abcess that developed in his middle ear. Although antibiotics started working on the bacteria in his blood it couldn't reach the infection in his brain. They did a craniectomy to wash out the infection and put a drain to get rid of accumulated fluid. He does not appear to have any brain damage and so far only suffers from expressive aphasia and high blood pressure. But it am still terrified, we do not know how long he will be in the ICU. His BP was around 165/56, but was lowered with three meds to 140. I am scared that if they don't get it down he could have a stroke. The doctors at this hospital seem to have done everything thing right so far, the certainly have saved his life this far. Is high BP normal at this stage? He's never had it before. As it's only been a week I am so happy at his progress but still so scared of the what ifs, all the emergency situations flood my brain once I leave the hospital. These stories of recovery are nice to read and hope everyone the best.

[Hidden]

Hi from Reno, Nevada.

I hope I don't sound fatalistic, but be prepared for strangeness once your wife passes this crisis stage. Right now you're concentrating on basic survival techniques; with improvement comes awareness of sensory distortions. Lights, sounds, tastes, smells-I think we've all experienced and continue to experience profound disturbances.

An important thing to remember is that meningitis recovery is a process. It's not like the flu or a cold. Words matter: "She's recovering from meningitis," not "she had meningitis."

I had a mastoidectomy last week to prevent recurrences of BM, and coming out of anesthesia felt like coming out of BM and VME-confusing and terrifying. But I knew how to use my phone, something that was beyond me during the meningitis hospitalizations. Progress! Relief! Victory!

It gets better.