Perhaps some of you have gone through or are currently going through what I am, and would love to share my unfortunate series of events, and hope maybe some others can share theirs and give me some positivity or some ideas on what to expect from here.
If you’d like to read my first post, it’s here:
http://www.chiarisupport.org/forum/topics/i-would-just-like-to-share-my-experiences-and-journey-with-my?commentId=5129359%3AComment%3A359601&xg_source=msg_com_forum
So after my surgery, I spent 3 nights in the hospital- would’ve been two had I’d been ready, but I spent my second day throwing up all day so I couldn’t be discharged until that stopped.
So finally I went home May 3rd.
By May 8th I started noticing a little dampness at my incision area and called my NS’s office to speak with the nurse. She told me to leave my bandages off and watch for drainage, if I notice any to go to the ER immediately, it could be a leak.
By the 10th I did have to go to the ER, the fluid was coming out so much and fast it was running down my back. The ER doctor said he couldn’t be sure if it was a leak, so called a colleague of my NS and he said he needed to see me immediately because clear liquid shouldn’t be coming out like that and he wanted me admitted.
Well I was at the same branch of hospital that did my surgery- St. Vincent’s- but the one that I went to by my house doesn’t deal in neurology or anything of the like, so I had to have my mother drive me an hour to the one where I initially went for my first surgery. They admitted me through ER so they wouldn’t have to wait on approval from insurance that way.
They told me I had a very interesting CSF leak case, for I had no headache, and that’s almost unheard of, but they still continued to give me medications because I was still in a lot of pain from my first surgery.
They told me I was scheduled for surgery the Next day for a repair, and I was terrified. I mean, the initial pain from the first surgery for the first few days was so excruciating and I was terrified to go through that again. I had atleast finally gotten to where I could walk around and hold my head up at home somewhat decently.
So needless to say I had an insane panic attack in the OR holding room (the fact that they had to move my IV (don’t remember why) and she blew the second one didn’t help) so they had to give me something to calm me down as soon as I signed all the papers.
So, after waking up from that, naturally I was in a lot pain, but once I finally got settled in my room and stuff the pain wasn’t nearly as bad as the first time (don’t get me wrong, still hurt like hell, but not the same) and I think it was because my incision hadn’t really actually started to heal yet, so he didn’t have to cut through anything that time.
So I finally thought it was over, I was good to go, could start healing and get my life going again, right? Nope. Not even close.
I spent two nights in the hospital that time, and my first night home I slept like baby back in my own bed. Best sleep I’d had since before surgery.
Then the second day I felt pretty good- was up and moving on my own. Then bed time came and that’s when the real hell started.
I laid down with my boyfriend about 10pm for bed and woke up around midnight screaming because my head hurt. And I mean SCREAMING. I woke everyone up in the house.
I thought the Chiari Headaches I had before surgery were the worst headaches I could’ve imagined. I never thought there could be something worse. So I knew I needed to go to the ER- something was seriously wrong.
Moving was impossible. And I knew we’d have to take the hour drive to the ER that’ll see and treat me. After some coaxing from my mom and help getting out of bed, down the stairs and two the car- which took a very long time, every move was agony, and made me scream in pain- we were on our way.
They immediately put me in a room to.start me on pain relievers And quickly came to the conclusion I had contracted meningitis.
We sat in the ER for twelve hours waiting for them to get me a room- I slept through pretty much all Of it since they had me on so much mmedication. then once I had finally got settled in the room, they immediately started me on antibiotics and scheduled me for a spinal tap Since it was the only way to Be sure it was meningitis.but again, of course, I was a weird case, and the radiologist could tell immediately from the cloudiness of my spinal fluid (I guess its supposed to be as clear as water) that I have meningitis, but as for the cultures to figure out exactly what kind, nothing grew.
So I had been here a week being treated for this, and then wouldn’t you know It, I started noticing more fluid coming from my incision.
Simply wonderful. So I called my NS’s office to tell them, and I knew they could come look at it since I’m in the hospital where their office is.
Well they had already decided on surgery before seeing it, but my NS’s LPN came to look and informed me I was scheduled for surgery first thing the next morning.
I had a breakdown. At this point, how much more can one person take. This would make surgery number 3, plus a horrible spinal infection on top of it all in under a month? I feel like the hospital has become my new home.
Luckily, I was being put under general anesthesia again, and he wasn’t opening me again for another repair; he did a lumbar drain, to help reduce Intracranial pressure and remove extra fluid, but it is also helping to monitor any spinal fluid color to watch my infection, which eliminates the need for another spinal tap thankfully. This drain is being left in for 5 days active, and two days clamped off to see if the incision leaks again- if so, I’ll be going In for a permanent shunt which should ultimately relieve any future headaches.
So, we’ll see about that in a few days.
I’ve been here in the hospital for 8 days now, 6 more to go, then I can finally go home, assuming I don’t need the shunt. But was told if I did I be able to be released the next day.
The most depressing part of it all was I was to be discharged the day I ended up having to have surgery instead.
I also had to get a picc line IV the day before my drain surgery. That’s not something I’d really ever ask for again.
I didn’t need it for the operation, but like I said I was supoosed to be going home the next day, and was being discharged with a home care team. I was to be on antibiotics for two weeks at home and needed the special IV for that.
But in the week I’d been here I’d been stuck 8 different times for IVs leading to 3 vein blow outs, and when the last IV gave me a problem where it needed to come out, I was done. I couldn’t handle being stuck for IVs anymore- they hurt. I have a panic attack everytime I need a new one.
I don’t even know why the last one needed to come out. It had just been put in my wrist the night before because the one on my elbow started bleeding, but when I got out of the shower that day, the nurse went to hook me all back up and flush it, and the saline felt like she shot alcohol through my vein. So I obviously couldn’t keep it.
THe Picc Line is more stable, wont come out, or get misaligned or anything- runs from between my elbow up towards my collar bone into the opening of a heart valve. It goes on the underside of the arm.
It took about 30-45 minutes. She used an ultrasound to find a large enough vein, and numbed my arm with that novacaine stuff as she went. She had to push a dialator through the vein first to get it open far enough, and though I didn’t feel pain, I felt pressure. I did feel pain when it popped into the valve opening. Then she removed the dialator and inserted the catheter. Though the process sucked, it’s much more convenient and I can move my arm freely.
I’m still in a lot of pain today, my back is especially sore, and my meningitis pain is expected to last a while.
My healthcare team called in a neurologist to speak with me more on the meningitis and on other pain options to add to what I’m taking to help with the headaches and inflammation since there’s sooo much right now. We decided on steroids along with my antibiotic cocktail and narcotic pain relievers- which some days work great, other days hardly help.
When I saw her was the very beginning of my infection coming on, and I had been having an incredibly stiff neck, couldn’t move my head, and my eyes hurt. Oh my god, how my eyes hurt. Any light was unbearable, I couldn’t even open them unless I had to. She brought up all those symptoms so see if I was feeling them and told her she got them to a T, which clarified meningitis for her even more.
She told me it takes about 3 months to finally start becoming back to normal and the pain to be gone. A very long road ahead.
I Just wanted to post this so someanyone looking to have the surgery, have een told they’re a candidate or that they need it (not to scare anyone, just want to be as real and honest as possible) to have an idea of what else could go wrong, and that there’s the chance for so many other things to happen… which I’d hate to know of anyone else going through this.
>Personally my NS never once mentioned before surgery that meningitis was a possible risk- not that it necessarily would’ve changed my mind, I’d already made the decision, but you’d still think that’s something important to bring up, its a very serious infection.
Just please, PLEASE, do all of the research you can. don’t let this deter you from having it done and getting healthy and getting a normal life back. My whole situation is more of a rarE And unfortunate series of events (at least that’s what they tell me Here), its very unlikely to happen To you. Normally the main concern is just the CSF leak.
But I would like to hear feedback froM anyone else who else has gone through this, or some of this, and how you were able to cope.
Thank you all for your time!
