Not sure what to do

[DSF767]

So I have had some bad luck lately, In November of 2017 I was diagnosed with a benign brain tumor called an Acoustic Neuroma. I recently had it successfully removed on 1/24/18 and everything was seemly going well with my recovery. About 10 days post OP my incision started leaking so I went back to the hospital where it was determined that I had an infection. So I was rushed into a second brain surgery 2 hours after going to the ER and they took cultures and found bacteria growing . This was on 2/2/18 I was then in the hospital for another 7 days and discharged on 2/8/18 and sent home with a PICC line with IV antibiotics.

Now I was lucky I know I was because of my quick action I never actually got sick had no symptoms of bacterial Meningitis and all the nurses and staff were surprised I was up walking the halls watching TV using my laptop and had a great appetite.

However the Infectious Disease team at the hospital are treating like I did actually contract bacterial Meningitis because all the factors were there for someone to get it. I do get where they are coming from and I get they are playing it safe but I have really had enough at this point.

At first I was on 3 broad spectrum IV drugs (Vanco, Fygil, and something I cant remember then name of) and now at home I'm on Pill form Fygil and the IV drug ceftaroline though a PICC line.

When I was first told about this they had estimated that I would be on the IV drug 2 weeks from the date of my second brain surgery which would be tomorrow however when I was leaving the hospital they dropped a bomb on me and now have me on it 4 weeks from date of second surgery. So until the end of the month.

I am so fed up at this point my daughters first birthday is coming up soon and I really want to be able to enjoy it but I feel tethered to this PICC line and I kinda want to call the hospital to push to have this thing removed early so I can actually enjoy my daughters birthday.

Am I being dumb or off base here? I would be open for them to switch me to an oral pill form of ceftaroline to finish out treatment and I know they are only doing it because Meningitis is so serous but like I said I never even developed a fever and I am so done with all this after 2 brain surgeries I just want to feel normal again.

[misswinky34]

Hi

I sympathise with your situation, however having seen the effects first hand BM has Wether you fluked the symptoms or not are catastrophic especially given your history with the benign tumor. Did they do actual lumbers or just swabs? If they didn't do lumbers and it was a wound based Infection it might have been precautionary, if they did do lumbars then no two ways about it, you had BM however mild. You will need to take the IV course to its full end, because of the risk of the bacteria numbers multiplying again and you could be back to square 1. I can imagine your at the end of your tether right now as far as treatment goes, but your in the final hurdle, and when my son was being treated via a PICC line for the last five days when it looked like it was losing its efficiency they said they would do a daily inject ( like a normal shot) until the treatment ended. Is that a possibility? Where in your body is the picc line? My sons was in his ankle so couldn't really be off show because it was too bulky to cover up.

I know your fed up, of course you are. But trust me you will be even more so if you end up needing even more treatment. See the treatment to the end, one way or another, then you can put it behind you. 😃

When you mentioned about just wanting to feel normal again, please give yourself a bit of time, my son still gets post BM headaches 1 year on, and still tires quickly, so you will need to learn your own limitations a little bit. You've had 2 surgeries on top of that, so just don't expect too much too soon. 😃

Take care ❤️