I know a lot of people know bits and pieces of what's been going on the last few days through facebook and texts but I wanted to get an update up here because we've lost track of who knows what and this way we don't have to keep repeating ourselves. So hopefully this will get everybody up to speed. We really appreciate everybody's concern and feel loved by all of our friends and family and sorry if we haven't gotten back to you yet. It's just been a little crazy!
I went in for my procedures on Wednesday. Unfortunately my spinal fluid stopped flowing about a quarter of the way through and they had to do a second lumbar puncture a little lower on my spine. The doctors were really nice and professional and they tried to make the experience as comfortable for me as possible, but it's never good to be lying on your belly on a table with a needle in your back and hear doctors whisper things like I don't know... and maybe we should we try... and what if we did this? and other phrases of this nature back and forth. I knew something wasn't right but didn't know what exactly was going on and at one point I started bawling and had to collect myself before the full on hyperventilating began...which I did, because I didn't think it would be a good idea to hyperventilate with a needle in my back. Luckily the second puncture was more successful and they were able to get the rest of the fluid they needed. Overall the procedure wasn't too terribly painful. It was a lot of pressure and then there were moments where I felt electrical-like shocks shoot down my spine to my tailbone, and feeling the fluid drawing out was uncomfortable. I think it was definitely more of an emotional trauma more than anything. It took longer than normal since they had to puncture twice -- probably about an hour versus 20 minutes.
The MRI was next. Since you are supposed to lie flat for 5 hours after the spinal tap, they moved my appointment up so I wouldn't have to wait until 3:30. The technician told me it would be about a 30-40 minute scan. I was doing okay until my headache started. All of the beeps and hums and knocks made it a little worse and it felt like my head was vibrating. But I think the worst part was my frame of mind. It felt like I had been in there FOREVER. I started getting worked up and a little claustrophobic and was really close to pushing the panic button but I knew I would have to start over if I moved. FINALLY it was over. I asked how long it had been and no wonder I was starting to lose my mind because I was in there for AN HOUR AND A HALF.
Things just went downhill from there. I got to the car and couldn't even open my eyes because my head was throbbing so badly. My mom had to pull over so I could vomit. And that's pretty much how the next 48 hours went...excruciating pain if I moved my head and vomiting that came no matter what I did. I could get a little relief if I was lying completely flat and didn't turn my head but since I was so nauseated I would have to sit up to vomit and then it felt like a sledgehammer to the skull. Rick finally took me in to the ER Thursday night because I was in such bad shape and was getting really dehydrated. I only remember bits and pieces by this point because I was drifting in and out of consciousness. He had to carry me into the hospital because I couldn't stand and when they put me on the stretcher I remember my legs shaking violently and I couldn't stop them. I thought I was having a seizure...it was the strangest sensation and has never happened to me before. I don't remember much about this point but he said that I was mixing up words and not making sense when I tried to talk. After pumping me full of fluids and morphine and zofran and who knows what else, my pain was finally tolerable again. They admitted me and tried to keep my pain in control until I could get in Friday morning to have a blood patch procedure.
Basically what had happened was the puncture wounds in my spine were allowing my spinal fluid to leak out and the lower pressure was what was causing the intense pain in my back and head. I think they told me that roughly 1 in 20 patients who get a spinal tap will encounter a spinal headache but most go away within 24 hours without intervention. For the unlucky rest (that would be me), an epidural blood patch can be done where another needle is placed in your spine and your own blood is injected into your spinal column to clot the holes where the fluid is leaking...essentially making a "patch."
So Friday morning I was back on the table. It was a terrible experience because being on my belly was extremely painful for my head and it took an hour. This procedure was a lot more painful than the first as well. They had a hard time finding the right location to inject the epidural and had to bring in the specialist (I guess I have a very complicated spine??). And then they injected my blood and told me to let them know when I "could no longer tolerate the pressure." So that was fun.
The blood patch works in 98% of patients. Most experience immediate relief and then the rest have relief within an hour. I was not in either of those categories, unfortunately. I spent the next 12 hours in even more pain than before. Back pain, abdominal pain, head pain, nausea, you name it. I seriously thought I was dying...I didn't know from what (West Nile, encephalitis, insert any disorder that causes a painful death), but I was sure from something. Luckily, I'm not a doctor and my melodramatic diagnosis of impending death was not accurate. :) I was finally able to drift off to sleep and when I woke up I felt a little bit better. And by morning I was able to keep food down and sit up and holy cow, get up to use the restroom!!!!! (btw, my mom totally gets the Awesome Momma Award for emptying my bedpan and rubbing my head and taking way better care of me than the nurses)
I was discharged yesterday around lunch time and have been resting. They told me not to lift or cough or do anything that could cause the blood clot to come dislodged. It's been hard not to pick up my babies but I'm definitely listening to the doctors' orders because I am NOT going through any of that again! I still have a backache and headache but it's nothing compared to how I was feeling a couple of days ago. I think one of the most frustrating things about all of this is I still don't have any answers. I just want to know what in the heck is going on with me. I meet with the infectious disease doctor Tuesday so hopefully he will have some of my test results. Until then I am just SO extremely grateful to be feeling better...I told Rick I will never be in a bad mood again because I will never again take for granted good health. To which we both got a good laugh about (the no bad mood part). In fact he's already started coining the phrase so did you lose your sense of humor with all of that spinal fluid?? Gotta love him! :)
Thank you all for your continued prayers. I will keep you posted.