Meningitis...geez what's next? | Arthritis Information

 

I was a week and a half into recovery from my second back surgery when I woke up overnight in excruciating pain. I felt like someone had lit me on fire. Every joint hurt like I have never hurt before, and my head felt like it was going to explode. I took my temperature and had a low fever 100.7. I took a couple of pain pills and camped out by the toilet the rest of the night because I felt so nauseous. I spent the entire next day in bed sleeping, drinking a half a can of 7-up all day. By eight that night I was really out of it and my husband took me to urgent care and they referred me to emergency at the hospital. I had all the classic symptoms of meningitis so they took blood and ran a ct scan. Both of them turned out normal. By this time it was 3 a.m. and I just wanted to curl up and die. The doctor said based on the blood and ct scan being normal that she didn't expect to find meningitis and having a spinal tap was up to me. All I could think (through all of my fogginess) was that none of my blood tests ever show anything for my ra, so I wasn't comfortable not doing the spinal tap.

The tricky part was that I still had 10 staples in my back from my back surgery, and they were right where she needed to put the needle. She was pushing and prodding and poking on my back and my hips trying to find a way to go in around the surgical area. She went in at least 4 different times and couldn't find the spot. On the last attempt she announced that she was going to try one last time and if she didn't get it she wasn't going to be able to get the spinal fluid. Thankfully, just as those words came out of her mouth, she was able to get the right spot. I then had to lay there flat on my back for an hour waiting for the results. I was hurting so badly and I felt so sick, but at the same time since I was hurting so much I was completely antsy to the point of being almost panicky. When the doctor came back in she had this bemused look on her face and announced that she couldn't believe it but there was bacteria present in the spinal fluid and that I had bacterial meningitis!.

I spent the next 3 days in the hospital on iv antibiotics waiting for them to culture the bacteria to see what type it was. I was in isolation and everyone had to gown up and put on masks to be around me. The first day they did an MRI of my back. Still having pain and feeling very anxious the mri dude slid me into the tube and started the procedure. About halfway through I started to get very warm, and rather than checking on me in between tests, he just kept going one after the other. He didn't give me a call button so I could let him know I was too hot. So again I was overwhelmed with a sense of panic. He had to stop halfway through to inject the dye and when I got out he just looked at me and asked me what was wrong? I told him I was too hot and I was very achy and needed to take a break.   He asked me why I was achy??? OMG = I wanted to claw his face off. Gee, I don't know, why I'm achy. It couldn't be because I am recovering from 2 back surgeries within 2 1/2 weeks, RA, and meningitis could it? I was livid and I certainly didn't want to go back in the tube, but I knew I had to. I have had several mri's before and never once did I have a bad experience. So MRI dude injects the contrast dye and sends me back in, this time with the little button to let him know if I need something. UGH!

The MRI showed an abcess near the surgery site. This required aspiration. When they went into the spot where the absess was supposed to be, the doctor couldn't draw out any fluid. He said that the absess could actually be inflammation. Do ya think? I just had surgery... He proceeded to inject some saline into the spot and draw it back out so they can test it for bacteria. Did I mention that the needle was about 6 inches long?

I went home late Friday, which made me really happy since Saturday was my birthday. I met with an infectious disease doctor in Dallas and they set me up with IV medication which I will take for two weeks. I am on two different IV antibiotics which take about 1 1/2 hours to infuse twice a day. They inserted a pick line while I was in the hospital so that I can do the iv meds at home.

I am in complete shock that this has happened and just really don't know what to say? I haven't felt terrible since going to the er. By the next day I felt much better. Now that I'm home I don't feel quite as good and am spending most of my time laying around. I definitely do not feel well yet.

I have to say that I am a positive and optimistic person. I have accepted what has been dealt to me. I don't suffer with my ra nearly as badly as many here on the forum, so I consider myself lucky. But I think I have reached my limit. Enough is enough. I haven't driven my car more that 5 times in the last 6 weeks. My poor boys are coping alright, but I know this is wearing on them. My husband is a saint, but I know that this really scared him. And when I think about all of this I am just void of emotion. I just can't believe this is my life. Lately every time I feel like I am making progress I hit a road block that changes everything. I had just begun to feel like my meds were working and now I am off of everything except plaq for at least one month. It's already been 6 weeks since I had mtx and enbrel, so basically I will be back to square one by the time I start back up. My back is still a problem and if they figure out there is fluid there, then I will likely have another surgery to drain the fluid and clean it out. In spite of all of this I remain mostly calm and I try to just get through it. My problem is that I don't know how to approach the future into my recovery and management of my ra. So many things have gone wrong that I am scared to think about what could possibly happen next...so I try not to think about it at all. But for the first time I fear that I may not get better, and I realize how completely powerless I am.

Well that's enough of that. Thanks for listening...it's late so I think I will try and sleep (another think I struggle with). I hope this wasn't too depressing. It's nice to be able to try and sort things out here...OMG! What a horrible experience. Bless your heart; you have really been through more than one person should have to go through. Is the meningitis still contagous? (SP) Are your family members at risk? Were you exposed to it while in the hospital having the back surgery? Are they saying?

Despite everything you've been through you still sound like a very strong person.  You must be to get through what you just went through.  It sounds like you have a wonderful family!  How old are you boys?  I have two boys, they are very young, but they don't like to see mommy in pain.  I bet your boys are very proud of their mom. So sorry you've been so ill. You must be one tough cookie! Have confidence in your treatment. You WILL be better again!I will be praying for you and your family. Let us know how you are doing when you can of course. Get well soon!!What a nightmare!
Stay in there. You are one brave cookie.I will keep you in my most positive thoughts.

Wow. What a nightmare. I'm sorry you went through all that. Keep resting, it helps. I hope you feel better soon.   jeeze lousie.  it just sounds horrible. Oh man, total bummer. I"m so sorry you had to go through all that. And the MRI dude, does this guy really work in a hospital? He probably realized what a stupid remark that was after he said it.   You were wise to go in when you did. Bacterial meningitis is very serious. Things will get better. Eat good, drink lots of water, take your med and take care of yourself. You are on the mend. Wow...what a time you've had!  Praying that you'll have a speedy recovery without anymore road blocks!Good job getting the spinal tap.  Hate to think of how sick you'd have been if the menengitis would have been left to rage on......hope you recover (from everything) quickly. I am just a bit concerned about you being treated out patient. I would think something like this would be better treated in the hospital. Just really keep an eye on your self. It is most likely the decision of her insurance company since medical people don't seem to have much of a voice anymore. My hospital most likely would have kept her longer. But out patient is a viable option and probably a better one given the fact that she has an autoimmune disease. People often end up with other problems when they spend two much time in a hospital. The infusion company usually keeps a pretty good eye on patients as they are nurses and can oversee her care. Thanks for the well wishes everyone. They ruled out the most contagious meningitis which is meningicocal, so I am not contagious to my family or anyone else. They really believe that this is a resut of my back surgery. The dural tear, which ended up being the source of the spinal fluid leak, created a gateway for the bacteria to do their thing. I responded immediately to the antibiotics, so I felt a lot better while I was in the hospital. I am resting at home the same way I was at the hospital, but with the comfort of everything that keeps me from hurting, plus I am not woken up every two hours overnight to poke on me or take blood pressure. I meet with the infectious disease doctor on Thursday this week to take blood levels to see if I am progressing. I have an MRI set up this week also, I think, to revisit the supposed fluid issue. I made sure I wasn't going to the same place as where mri dude was. I am still seething from that experience. I am not sure if the doctor were forced to discharge me because of my insurance. My insurance is really good, so I am lucky there.

My boys are 12, 9, and 7, and they are wonderful. The 12 and the 9 are the same exact size so they look like twins. It's very funny because the 9 year-old definitely act like a 9 year-old which completely annoys the 12 year-old.

I can't remember if I've answered all questions, but I'll go back and check and edit if necessary. Thank you so much for offering words of care and concern. You all know what it's like to experience these challenges and it is very comforting to come here for support. So, thank you again! I'm so sorry you have to go thru this.  What an ordeal.  You should be feeling a little better each day.  My thoughts are with you and your family.  LindyYes I definitely would say you have had your share! Sorry you had such a bad experience. Hope the rest of your recovery is speedy and uneventful! Keep us posted!i hope you feel better soon.  i am so sorry you have had to go thru so much.  praying for a speedy recovery.  Glad you are feelling better. Glad you have your boys to keep you occupied and happy.oh my, graciesmom!!  what an ordeal!  [QUOTE=lorster]It is most likely the decision of her insurance company since medical people don't seem to have much of a voice anymore. My hospital most likely would have kept her longer. But out patient is a viable option and probably a better one given the fact that she has an autoimmune disease. People often end up with other problems when they spend two much time in a hospital. The infusion company usually keeps a pretty good eye on patients as they are nurses and can oversee her care. [/QUOTE]

Yep... lots more germs inside the hospital than on the outside.  I never stay in hospital a minute longer than needed... and I usually negotiate an "early release" with the docs.
Geez, Graciesmom, you have been through so much. I wish you a fast recovery and hope you get your pain under control and the meningitis. What a time you've had. I don't seem to out of the woods yet...tonight another raging headache with sudden onset. They are just so nauseating. No fever, but the headache is beyond words. We called the doctor and this is the cocktail he prescribed: 2 Tylenol, 50 mg. of Benedryl, and a protein shake??? I did it and felt better, whatever. I have decided that this is going to take awhile. And, even though I feel relatively good one day, the next can be right back to square one. I guess I will learn patience through all of this. At least that is something. Here's hoping for a headache free tomorrow. I am sorry you had to go thru all of that. You are much strong than I, because I would not have let them near me for the spinal tap or the 6 inch needle. Graciesmom.....I am sorry to read what you have been going through.