Hello my loves :)
People often ask me "How did you find out?" or "How did you know?" Unfortunately, a lot of people with Cavernous Malformations do not know they have this time bomb in their head. It is very rare that it will create any problems, so most people will never find out. Some people even have dozens of them and they dont have any problems with them. Unfortunately, the ones that are in the brainstem are most likely to bleed. It happens to be the most difficult location and the ones that control the whole body. It can affect anything, and one simple drop of blood can be very disabling, even just the pressure of it against the brainstem without any bleeds. They are also often found by accident after a MRI after a incident, in these cases, since they are inactive, they are monitored. For me, it was after a seris of , symptoms developped. Sadly, it is often found too late after someone have a stroke, small or deadly, a aneurysm, after a sudden rupture, creating a brain hemorrage. To know more, read my page on the top "Cavernous Malformation"
How it all started,
As many of you know, it all started with my ears almost 3 years ago. I had a very bad ear infection that was diagnosed as bacterial when it was Fungal. Antibiotics given for a bacterial infection when its not will "feed" a fungal infection and that is what happened. I was given 2 different kind of antibiotics before I was sent to a ENT when it didnt take away the infection. By the time I saw him, the fungal infection had spread down my throat and "ate" away my eardrum. Do you remember the Chile minors amazing rescue? (yes it was in 2010, time fly uh) Well it was right at that time. I watched the entire rescued curled up in a ball crying at every single rescue because I was in so much pain but because the percocet was making me cry like a girl. Wait, I am a girl, but i dont cry, not like that!! It felt like I had zillions of bugs eating me inside the head but I remember telling myself how much worse it can be in life.
I was very dizzy and lost quite a bit of my hearing on that side. I found out later i lost 60%. After this was healed up, my eardrum never did. After seeing the ENT every 2 months for 6 months and no eardrum back, I was increasingly dizzy and had vertigo. He suggested we do a Tympanoplasty. It is basically a eardrum graft. In only 10% of case, it does not work. You guessed it, it didnt work. My poor ENT could of never guessed this was because my brain was bleeding in the Pons, the part of the brain that is crucial to our ears health. I saw him after a horrible ear infection, of course we all thought it was related, and it was in some ways, but the fact that the surgery didnt work was a mystery he couldnt explain.I had very disabling vertigo after the surgery, which I was not prepared for at the time and found very hard. I had been depressed on very little occasions in my life, but that was one of them. I decided to not attempt a second eardrum graft. It was so much pain and so disabling and I had no guarantee it would work the second time around. Not just that, but I mostly wanted to get on with my life. Ehh yea.. that took a little longer to happen. haha
I dealt with my new hearing loss, went back to work 2 weeks later and forgot about the whole thing :) I never stopped being dizzy. As a cleaning lady and on my feet, moving all day, some days were very, very hard. It was depressing at time to realize that this was now my "normal", and I never knew how I was going to feel when I woke up. I always been healthy and active and even when i was very sick, I did what I had to do and didnt complain. More than 6 months after my surgery, I was still very dizzy and thought "I dont have a eardrum there", that's why. My family never knew how hard it was for me to function normally, yet alone do the job I was doing.
My clients were so important to me. I loved them all dearly, and always enjoy working for them. I was so worried that my work would be affected by how sick I felt, and it was a phobia of mine to leave them unsatisfied! I pushed myself so hard, and always managed to finish, even when the room was spinning. The ENT sent me to have "Balance Therapy" after my eardrum still didnt close up and sent me to a specialist. Something was bothering him because i looked so healthy, the surgery should of worked. (he told me yesterday, not at the time) . The specialist sent me for a CT of the left side of my head, since it was the left side that was not working well. He wanted to make sure I didnt have an infection in that area, in the bones and surrounding area. He also mentionned "brain tumor", which I did not mention to my husband at the time because 1)if it was, I would tell him when its official and 2)Doctors talk a lot and give you all kind of scenario and It didnt even phase me that this could be it. When the CT scan results came back, it was clear. No infection, and no brain tumor :) My cavernous malformation was located on the right side of the brainstem, but even if both side would of been requested, only a MRI will show a cavernous malformation. So it came back as the sourse of the problem not being from the brain. So I was told that this was just it, I had bad ears, and I was satisfied with that. I could just continue what I had learned to do; Do my best feeling dizzy, and embrace my new life. I was happy.
In May or 2012, I started being dizzy a lot more, to the point of having to puke often (sorry for the info) I was just "car sick" all the time, without being in a car of course. Or you know when you feel like you have to puke but you cant? yea... I thought "ok is this really getting worse?? is that really all because of ONE loss eardrum, come on!" Even tho my hearing was becoming more and more odd and my own voice sounded to me like i was speaking thru a microphone all the time but I couldnt hear what people were saying unless they talked loud. If there are a slight mumbling, forget it too. I also noticed that my left side was very often tingly, for no reason at all. I always woke up with my foot and arm on the left side completely tingly and numb. "I am getting old" I thought (I was 33) Something else was really bothering me and I was too scared to think twice about it. My memory and the confusion that would overcome me out of the blue.
I was always a very organized person. I knew where things are, even if I put it away months ago. For example, I had about 10 houses to clean, and I knew when was the last time I cleaned what, in which house. I didnt need to keep any in my calendar because I knew who I was going to clean, what day, at what time, and I never got messed up even when it was every 3 weeks. It slowly began to change for me. I couldnt remember any of these things anymore and it was very bothersome for me. One day, I was on my way to a client, and as I arrived in his street, I couldnt remember which house was his... I became very disoriented and didnt even know how to get back on my tracks. In the mean time, I was becoming increasingly numb, but still not enough for me to really be certain something was wrong.
I was never someone that worries about myself. I rarely went to the Doctor, and I am pretty "tough". I dont like whinning, from others or myself, so I just deal with most sickness in complete acceptance and silence; I just get up and move on, be happy and smell the flowers. haha However, this was becoming different for me. It was becoming a lot harder to ignore. Anyway, one morning in May of 2012, I was to go clean one of my favorite client's home. She was disabled and needed me once a week, all day. It was very very hard for me, but I loved her, and just hoped that she still was happy with me despite the fact i was not as energetic that I was 2 years earlier, but I was still doing all my work. As soon as I woke up, I knew something was wrong with me. A lot worse than usual. I couldnt sit up to get out of bed without my head pushing me back, without everything around me moving with force. I managed to get out of bed, in tears, and told Jay I dont think I could work. He obviously didnt know how bad I was feeling.
I never talked about how bad I felt, so I cant hold it against anybody when they didnt look very supportive. Supportive doesnt apply when they dont even know how bad things are. They cant read your mind. I cried to the idea of calling of on my client, and walked the kids down the bus stop. On the way back, I knew for sure there was no way I could go to work. It was my biggest job, too. So I canceled. I also called my regular Doctor. He saw me once before, 3 years before that, for a UTI. haha I didnt remember him, he didnt remember me. However, I dont know what pushed him to send me for a MRI, but he did. On that day, he saved my life. The following days, I started feeling better but had new weird symptoms, but I still was able to work, even tho I often did so in tears. I love my people, what can I say! He told me we had to rule out MS. I went home and looked up MS symptoms. They were all there, except the ears problems. I will always remember that I was in Target when he called me for the results. He said "Mrs Klute, do you want to come in the office, or do you want me to tell you?" I was in a good mood. I already accepted that I had MS (I was pretty sure, because it runs in my family..) So I said he could tell me over the phone. I was pushing my cart around target, and he said "well you dont have MS, but you have a (medical terms I dont really remember)." I said with a very normal, good mood voice "so what is next?" he chuckled and said "well i am glad you are taking it so well, but...its a type of tumor, its benign but i will refer you to a great neurologist". I remember not being scared, not being surprised. I knew how bad I felt, so I knew I had "something". In the brain, I was not sure but he said "benign" so I knew at least it wouldnt spread. I was just relieved that I did have something, I was not crazy, and I could just get this thing fixed and have my life back! Well again I thought! haha
A few weeks later, I saw a well known neurologist. She is lovely and her attitude cracked me up. She came in her office as Jay and I were waiting, and without even saying Hi first, she came in and said, with her asian accent "You have a cavernoma and it needs to get out you got to get it out" hahaha She explained a bit what it was but didnt explain where it was. She said Its blood vessels that bleeds in the brain. She then asked me about my symptoms and would nod at every single one of them, almost excited that my symptoms matched my condition; she diagnosed it right and was happy about that. She then told me that I was having simple partial seizures. We talked and I told her I didnt know It was seizures, because I always thought there was only one kind, the kind you fall on the ground foaming to the mouth, yea.. sad I know... So that very unpleasant, paralysing, wave feeling on my left side that happened every 10 mins was seizures. Some days, it would only happen 4 times in the say. These were my good days. THe more seizures I had, the more numb I became and would limp etc. If I was 2-3 days with only a few every day, I would get better. It was a vicious cycle. I had a EEG and I had it one of those days I didnt one while I was there. haha But she could see on the scan that it was "abnormal". I was then refered to a neurosurgeon. I was to see him early July. In the mean time, I kept thinking that I would see this guy, and like the neurologist said "it will get it out". That meant brain surgery, but i didnt really think about it. I know people have brain surgery every day and do just fine. I just couldnt wait to feel better. I was worried about how I was going to keep cleaning and how long I would be "out" but I also knew that all of them cared about me and would understand.
In the mean time, things were getting worse. I was getting confused often and had "blanks". Complete blanks. It got so bad that I became afraid of driving my kids around because on a few occasion I thought to myself "wait, can I turn left on red?" That was quite terrifying to me and i thought "I shouldnt be driving". I had learned to manage my dizziness with balance therapy and did fine, but now I had this new whatever it was confusing me! I pulled over a few times because remembering all the rules overwhelmed me. I started asking Jay to drive the kids places and I didnt have anybody else's kids in my car. Summer of 2012 was spent with a lot of limping around, confusion, pain, memory loss, 24/7 tingling and a lot of invisible but painful seizures.
July came, and I saw the neurosurgeon. I expected to go in there, be told I needed brain surgery, or better yet that this was going to get better, go home and all would be good. Instead of that, it was a very quick, cold, non informative appointment. He said "you have a inoperable cavernous malformation in your brainstem" I dont quite remember the exact words after that, but he was basically telling me that i was going to become increasingly disabled until I die, or have a strokes or brain hemorrage was a very high possibilty to just go home and enjoy my family". I didnt panic, but I did cry a little. I didnt cry from what he told me as much of how he told me, if that make sense. I heard that he is a wonderful neurosurgeons at what he does know what to do, but bedside manners is not his strongest point. I dont expect having both. A great doctor to me is like Dr.House... a great doctor!!! a amazing doctor is a great doctor Plus good bedside manners. At the time tho, I didnt feel he was neither, simply because he was so vague, didnt want to spend anytime with us. I needed answers to explain to me what I had just learned! He gave us the impression that he didnt want to waste any minute with me since he couldnt help me. On our way out of his office, I saw his assistant cry. She is going to be a amazing Doctor ;)
I accept things quite quickly. I didnt go home and cry my heart out and laid in my bed into a ball. It is on our way home that I just decided to do my best to live each day and accept that I was being slowly disabled and who knows I could still live to see my grand kids, was not goint to have a stroke at 35 years old and who knew; They would just have to push granny in a wheelchair. I was thankful that I started having children when I was 19 years old because when I would be 50, my youngest would be 25. I at least going to live until I am 50 until I am too disabled to remember them, right?
So the summer went by pretty fast as usual, but one thing had changed.... I couldnt work anymore. It was so hard to call my clients, one by one, to tell them I could not work anymore. I just physically couldnt, and this was going to get worse. I felt they should know, and it was not fair to them at this point that every time I was in their home, I worried about finishing. I didnt want to have a stroke while working either. After I saw my neurologist again, because she said "come see me again in September when its out" haha She didnt seem surprised when I told her the neurosurgeon said it was inoperable. She told me to keep my heart rate low, as a rise in heart rate was dangerous for me. I already noticed anyway. I told her that I had to quit working and she said "ok that's good, take care of yourself." She also told me that at any time, I could have a stroke, and sometimes, they are mini strokes, warning strokes, a few days or weeks before a big one. I asked her how it felt like and she said "oh you will know" I said "but how" and she said again "Oh you will know, just go to ER right away" haha so hey I took her words for it.
I went home, and life went on. I spent several nights trying to find answers to answered questions, meet someone that had the same condition, same location and same symptoms. I didnt. I found a amazing support group called AVM survivors, but there i met mostly people with AVM, but still so close in symptoms and diagnostic that I felt home. I also quickly learned that it was so important to find a Surgeons that was familiar with the condition, and that started a totally different journey. Here is a video of me talking about them; Ben's Friends
Because I was not working anymore, not working out anymore, had more sleep, I improved. I still had quite a bit of seizures, but i started walking normal again and it looked like I was recovering from my harsh spring/summer. I saw a second neurosurgeon in October for a second opinion. By the time I saw him, i still had the symptoms, but they were "toned down". He also told me it was inoperable, but gave me so much more information than the first one. He even showed me where it was using a brain model and explained why it was not worth getting to. 95% chance of complete paralysis and a lot of deficits. Its the type of surgery you do when there are no other options. He also told me that I had bleeds. Two previous one. He told me to come back in 3 months, January, for a follow up MRI/Appointment. I got used to my left side being numb, was already used to the dizziness and went on with life but never forgetting that time bomb in my head. In the first week of January or 2013, I had a follow up MRI and saw the neurosurgeon. It was great news. It appears smaller, therefore not engulged with blood, and there was 1% chance that it would just "dry out" and the more time in between bleeds, the bigger the chance. He then said "but if it bleeds again, we will have to think about surgery". I thought this was odd, because he had told me 3 months earlier how devastating that surgery was, despite saving your "life". I had this feeling that he knew something I did not. Not even a day after that, I started having worse headaches than usual. I also had this stiffness in my neck and swallowing felt "weird". During that time, I sent my MRI to Dr.Spetzler and he called back with a grim choice for me to make. The best surgeon in the country, at the opposite end of the country, have never seen me in person, told me there were no good solutions, not one better than the other. He offered the surgery, listing me all the risk, including paralysis and blindness. I was shocked that it was a option. Or to just let nature decide. He couldnt or wouldnt tell me what was best. They were both the same risks. Except surgery now (to avoid a stroke or brain hemorrage at any time (between right now and 5 years, he said) ... surgery could plan as opposed to emegency surgery from a massive bleed. But I would deel with the deficits now. It was the most excruciating decision I ever had to make. Did I want to maybe enjoy 5 more years with my kids and risk crashing any day, or did I want to be handicap but live today.... I begged God to give me peace over this. He did in his way, and his perfect timing. You can read here, as many of you know the rest of the story now. Here: A serie of unfortunate events.
I was not going to tell you all this, but I realize that there are people out there that may be seeking answers and when i was looking for some, I couldnt find any, but maybe , some day, someone will find some answers thru this story.
I am blessed.