You know I started thinking that some people have no idea exactly what I’ve been through. Sure you all know I had a brain tumor but here’s what has made me the person I am today. I look back now and think to myself, how could anyone live through this and then I think, because I am a survivor…It’s what I do.
This post is extremely long, but it is in answer to all of the people who wanted to know about my brain surgery and what happened afterwards, so I don’t have to keep explaining it ~ I hope you will take the time to read it all!! I am sorry about all the swearing but anyone that knows me knows that I swear A LOT.
Here is the story of me and my hospital hell…..
So, my name is Nan and to know me is to love me, or maybe not, but at least I start to grow on you after a while. For those of you that don’t know anything about me, I have recently joined the scorned wives club. You know the one, where the husband of 21 years decides to up and leave you for another woman yeah, that one. Anyway, I’m surviving, over it or whatever you want to call it and here I am, so this is me ~ take me or leave me. To understand anything about me, you would have to know about my past, but because that is so drawn out, I will go back almost 3 years…..
February of 2007, shortly after my 40th birthday a freak accident landed me at the emergency room getting poked and prodded. I really didn’t want to go, I felt like it was stupid to have to go to the hospital for a little fall, but my husband insisted. That in itself was strange, because he was the one always telling me to suck it up and not be such a baby whenever I got hurt.
After my husband dragged me kicking and screaming to the hospital, I finally gave in and got checked out. So far so good, just about everything was looking good. Of course I was sprained all over my body, but nothing that wouldn’t heal right? Well, they just wanted to check one more area, my head and neck. I wasn’t clear if I had hit my head when I fell (it happened so fast), so they did a routine CAT scan just to be safe.
When the ER doctor came back with my tests he seemed very positive and I asked when they planned to give me the boot. He asked where my husband was and I told him he was out smoking a cigarette and started to wonder why he was asking me that. I gave him a look and he said “well, everything looks good, BUT we found a little something in your brain we are concerned about.”
I felt the blood drain from my body and was ready to pass out; I couldn’t breathe or think for that matter. He wanted to know if I wanted to wait for my husband to talk about it and through my tears and my uncontrollable shaking I think I indicated yes. When Chuck came in, he could clearly see there was something wrong and I looked towards the doctor. The doctor told us that I had a brain tumor 4cm x 2cm, which he said was relatively small and that it would be a minor surgery. He said there just happened to be a great neurosurgeon on call that night and I could speak with him. That is when I met what has to be the most brilliant doctor on the face of the planet, the one who saved my life.
So I was lying in the ER freaking out when this neurosurgeon, Raymond Tien comes in and speaks with me. He seems pretty confident about my prognosis and sat there telling me all kinds of stuff that sounded like Greek to me at that time. Everything was swimming around inside my head and I felt like my head would explode any second. He had asked me a few simple questions like if I had been having any symptoms, which as far as I had known I hadn’t. I mean I had that flu that EVERYONE had that caused dizziness and headaches, mine just lasted a little longer. He told me I had what was called a meningioma, which in the scheme of things is pretty good if you have to have a brain tumor (yeah, like anything is good).
He said I would need surgery as soon as possible due to the size of the tumor. I thought to myself, “but the other guy just said it was small for a brain tumor what’s up with that?” I was all scheduled for my surgery for a week later ~ march 7th 2007. Now all I had to do was go home and face my kids and try and explain to them what was going on. If any of you are parents, you will know that is one of the hardest things to tell your kids, just because there is a possibility of death. We did all we could to convince them to keep faith that God would see us through this. Unfortunately, this was an area I was lacking in. As hard as I tried to have the faith I needed in God to see me though this, I just questioned his divine reasoning and at the same time I struggled with the fact that I had a lot of things in my past that I had to answer for and that maybe it was time to do that.
When everything finally sunk in, I mean God; I had a fucking BRAIN TUMOR!!! Why me? I mean, most people get a big party for their 40th birthday, I get a brain tumor? That just didn’t seem fair at all. I somehow managed to convince my kids that I knew that I would be alright and that they did not need to worry. I was worried though, terrified in fact. Terrified that this was my punishment for all the years of careless living and taking everything and everyone for granted.
My surgery ended up having to be rescheduled for another week until the 14th and I was admitted the night before. The first thing they had to do was the embolism. Oh my god. I don’t even know how to describe it; I want to throw up right now just remembering how awful it was. An embolism is where they have to put a small bead in the blood vessel feeding the tumor. Well guess how they have to do it? Let me tell you….They first cut into your femoral artery in your thigh and shove this thing up all the way up until they hit the carotid artery and keep going all the way up to the brain. They do this without pain medication!!!!!! It took six people to hold me down and afterwards, I seriously wanted to rip someone’s throat out, it hurt that bad. If you have ever had a root canal, think of it as a giant root canal, but much worse and longer without pain medicine.
After that was done, they tried to give me morphine or something to stop the pain and calm me down, but my veins kept collapsing at least in 17 places from IVs so they decided they had to put this freaky thing directly into my heart called a PIC line (one of three over the next few months) which was just another fun time for me, I mean I just love needles and getting poked and prodded more than words can describe. Another thing they get to thread up through a main artery to your heart basically, so that you can get your meds. It works a lot better than your basic IV.
The good news is that my surgery went really well, but it turned out that my tumor was MUCH larger than expected. It was so big that the hole that was made in my head had to be enlarged to get it out. I have a hole in my head about a 1.5″ x 1.5″ maybe larger. I haven’t really taken the time to measure it.
Well my first surgery went really well, better than expected. I was actually up and moving around like I had nothing wrong with me after about three weeks, which I guess is pretty remarkable under the circumstances. Things were going great until about my fifth week out of the hospital. It was actually the fifth week to the day that I woke up feeling really sick and when I went to get out of bed, I kind of lost my balance. I knew something wasn’t right. When I went to look in the mirror my face was starting to swell up again and I had this thing on my head where my original incision had been. It was about the size of a golf ball.
My first reaction was to call my surgeon and find out what the hell was wrong with me and of course he was in surgery all day so I got stuck with one of his interns. She told me it was very common to have brain fluid seep from the incision site and that it was nothing to worry about. Even though I protested, telling her it looked infected, I had a fever and wanted to come in to check it out, she told me there was nothing to worry about. So I went back to bed, feeling horrible and hoping it would just go away like she said it would. After all she went to medical school for 8 years, I was just a housewife, what did I know?
The next day when I woke up, the mass on my head had tripled in size. I was convinced that something was terribly wrong, because I had the same symptoms and so naturally I called to speak to my doctor again. Of course I got in touch with his intern and she told me the same thing as before. At this point I got really angry, and flipped out asking her if she had even bothered to talk to the doctor about this at all. With the silence on the other end of the line, I knew the answer to the question. She said that she didn’t think it was necessary because it was more than likely just fluid leaking and nothing to worry about. That night I had a massive seizure and had to be transported by ambulance to the hospital. On the way to the hospital I apparently had several more seizures. When they got me there, they put me on an anti seizure medication and admitted me overnight, all the while ignoring the thing on my head!
The next day when I was released my husband questioned why they did nothing about the thing on my head and once again he was told that it was probably nothing. If I had a fever they might have taken it seriously, but the problem was because I don’t run a normal temperature, (mine is about 97.1) and only had a temp of 98.6, which generally means I am pretty sick, the hospital staff did not think that I was. I tried explaining this to them, but once again they didn’t listen.
For the next two days I could not get out of bed, my face began to swell up and I got sicker and sicker. When I did get up one time to try and take a shower I passed out and my husband rushed me to the ER. When we got to the ER the doctor basically looked me over and told me the same thing that everyone else had said. At that point, my husband completely came unglued and refused to leave the hospital until they checked to see what that mass was. The doctor reluctantly said he could relieve the pressure and take some of the fluid out just to prove to me that it was nothing. When he put the hypodermic needle in and began to draw out whatever was in my head, I will never forget the expression on his face. I thought he might throw up and I was about to when I caught a glimpse of what they took out. It was the most vile substance I have ever seen in my entire life.
They decided to send the substance to the lab to determine what it might be and five hours later as I waited in the ER for an answer, they decided to admit me because they still had NO idea what they had taken from my head. All they knew is that I needed emergency surgery the next day to get it out or I would die, because my infection was that bad, you know, the one that no one thought I should worry about. Had I not come in and insisted that they check this out further, I would more than likely have died that night at home.
The next day I had the surgery to clean out the incision site and was admitted to the hospital. Unfortunately, because of this infection I now have complications from brain surgery that I had not had before. The next part of this is all about my seven weeks of hospital hell, because even though you would think it could not possibly get worse than this, it did, it got a lot worse.
I have to mention a few lighter moments, which probably don’t really matter to anyone but me. This has to do with my hair. Anyone that knows me knows that I LOVE my hair(I am almost obsessed with it). I have taken what seems like forever to grow it out and it is thick and beautiful, so when my neurosurgeon was able to do my first surgery and miraculously not have to cut one strand, I was amazed and enthusiastic, to say the least.
When it came time to have the other surgery, I begged that they leave my hair intact, but if they had to, please cut it all off, so I would not look like a complete freak. Of course they did not do that, so I looked like a complete freak, a little like Cyndi Lauper with about 40 staples in my head. Kind of a Cyndi Lauper meets Frankenstein sort of thing, not a pretty site. Just another thing to add to my series of unfortunate events.
Okay, so now on to the really scary stuff. After my surgery I was informed of a few things. First I found out that they could not put the part of my skull back in my head, that was there before or anything else, because they still had not determined what caused my infection. They had told me that because they did not know if it was an allergic reaction or an infection, they chose not to put anything back in there! So now I have a huge hole in my head, which I have to this day. Of course you can’t see it, only I know it is there, but it is still creepy. I now have a soft spot similar to what babies have when they are born on my right temporal lobe and will have that forever because my surgeon has informed me he does not want to do another surgery in fear I may not survive because my body has just been through too much.
When I was finally released from ICU and taken to my private room, I kept noticing that wherever my head was lying seemed to be getting wet. I could barely lift my head and was so drugged up on morphine and demerol, I couldn’t really tell anyone. After a few days, I was able to sort of sit up and I noticed the bandage on my head was soaking wet and so I knew I hadn’t been hallucinating. I called for the doctor and it turned out that my head was leaking brain fluid. They said that this was not a big deal, but by now I was not really trusting of what anyone said, considering they almost let me die, due to their negligence. They brought in someone to give me stitches on top of my staples, boy that was sooo much fun; let me tell you, it fucking hurt like HELL.
Thinking that this would be enough to stop the leakage, they said give it time to heal up and close, and bandaged me up. Of course once again they were wrong. They told me that there was only one other thing that they could do at this point. I was starting to get scared so I was willing to do just about anything. They told me that they would have to put a spinal tap into my back and drain off the fluid from my brain that way. I was completely confused, but at this point I was willing to try anything. They never mentioned that they would have to do any of this without pain medicine once again. I mean what the hell is their deal; do they get this sick pleasure out of fucking torturing me?? I swear they totally get off on it.
Well, they basically tapped me like a keg of beer with this thing and I had this giant bag attached to my back to collect all of the fluid that was supposed to be in my brain. At no point did anyone tell me it was going to feel like someone was hitting my head with a sledge hammer every second of every day and that I was going to throw up every time I moved or that I could not stand without fainting due to the pain. The thing about this is that I was required to eat, move and do normal stuff after surgery, so it was quite impossible to even try to do these things under the circumstances. They finally collected 750ml of brain fluid and if any of you know how much that is, it is A LOT, it looked like about the equivalent to a two liter bottle of pop or more when they took it away to do whatever they did with it but I don’t really know. Well, if you think it can’t get worse, guess again!
After my head finally healed, we noticed that I was covered with hives from head to toe, I had them everywhere. I even had them down my throat and up my nose. I guess I had been in so much pain before I hadn’t noticed them. I itched so bad I wanted to die, so they brought in the top infectious disease specialist in Oregon. Well he was a complete pompous ass and would not even come near me, like he was gonna catch something. I was so pissed, I could have screamed, but I wanted to know what the hell was wrong, so I just sat back and took his bullshit. At one point my husband Chuck tried to talk to him about the fact that he had found information online about one of the drugs they put me on causing these very reactions. The doctor looked at him and said, “until you go to medical school and practice medicine as long as I have, I don’t really want your opinion” now usually I would have told him to fuck himself and the horse he rode in on, but I really did need to find out what was wrong, so I bit my tongue and took it.
They changed my IV antibiotics three times, which by the way are the strongest antibiotics that are made, insisting it must be an allergic reaction to them and I stayed in the hospital for seven weeks never getting any better before they finally decided to let me go home, all the while still not knowing what I was allergic to. My insurance just would not pay for anymore time in the hospital, so it was home with home health care and home IV. Thank god that when Chuck’s dad was dying from leukemia, he was responsible for all of his IV stuff, so he was able to take care of me. I had a nurse that came in once a week to check out my IV site and make sure everything was alright, and when she noticed I was still covered with hives, she called the specialist and asked what he intended to do about it. When he seemed indifferent to the whole thing, she called my surgeon and told him Chuck’s suspicion that my seizure meds were causing the problems and that he had mentioned it weeks earlier. I found out later that the Dr. Fawcett actually suggested that they put me on another antibiotic, which I guess can kill your whole immune system or keep any other antibiotic from ever working again because of all of the different ones I had over a short period of time. We are still not certain if I can take antibiotics yet, we are cautiously hopeful that my immune system wasn’t damaged beyond repair due to the switching back and forth of antibiotics.
At that point we were told to stop taking the Dilantin, because my bipolar meds are also seizure meds so they would keep me safe until I saw another neurologist. Guess what? Chuck was right from the start. It was the Dilantin all along and I would have not been miserable all that time, had some jackass with a PhD just listened to a guy with a GED that was just looking out for his wife.
Well, I wish I could say that I walked away from all of this with unscathed, but I didn’t. It has been a long struggle and I am still fighting my way back after all this time. I am not the person I was, the woman with the 148 IQ and the quick wit. I guess you could say I was a bona-fide “word nerd”, had an uncanny ability to remember every bit of trivia that no one ever cared about, but I knew it anyway! I also had this really strange musical ability to know every song title, artist, lyrics, year or approx time it was made, if someone would call me up and play me a song or ask me about part to of a song. Now I can’t do any of that, not that any of it was good for much, but it still pisses me off that I am damaged now and I didn’t have to be. I am only because people would not listen to me and didn’t want to take the time to do their job. I could have died and all it would have taken is five minutes for someone to see that something was terribly wrong, but I guess it is history and really not worth dwelling on now (yeah this is me not dwelling). I still have memory problems and may not ever be able to go back to work, but it is a far cry from what I was going through. I couldn’t remember what day it was for a long time and had a real problem with my short term memory. I still have to see a therapist 2 times a month just to deal with all of this. It is a constant struggle to keep my life in order, but I work really hard at it and I am making it work, sort of. So that’s everything you never wanted to know about what happened to me and why I could live without ever seeing the inside of another hospital again!
Love, peace and happiness to you and yours ~ Nan
Oh yeah, there were a couple of important things to my hospital stay, which I forgot to mention. My husband told me the doctor had to sit him down told my him to prepare my children for my death. He said apparently I was so sick that I was not expected to live, they could not figure out what the infection/allergy was best guess it was either some really bad strain of staff infection which normally does not kill you with a dose of MRSA on top of it, which does kill you. I still to this day don’t think they ever found out what the hell they took out of my head but it was really gross, I can tell you that. I could never find anything in my medical records that made anything sound all that serious but to tell the truth I DID feel like I was near death plenty of times and slipping in and out of consciousness so I trust my gut over someone covering their asses on paper. Personally, I think that they accidentally left something in me during the last surgery before they closed me up and it got infected, but no one is ever going to admit to that. I just know whatever caused all of it was no fun an wasn’t my fault nor did it have to happen or escalate to that point. If you learn anything from this story, take control of your self medically speaking. Follow your instincts and know that your doctor or their “helper” no matter how much school they have had are not always right. Do what is right for you, NOT what is convenient for your doctor!
*Just a side note since all of this happened: I had my third brain surgery to FINALLY put a piece of high tech resin material in my head to fill the hole in my head. I had more complications and my brain was pushing through the hole in my head giving me unbearable migraines for almost a month before the surgery.
The other is the medicine that I was on that the specialist would not take me off of for over 7 weeks has a class action lawsuit filed against it for the reason that I had which in some cases causes death. I was lucky enough to be taken off that particular seizure medicine before my symptoms got as bad as the majority of most of the people involved in the lawsuit.