Most people celebrate the new year January 1st. The new year is an opportunity to begin anew and to move forward and accomplish dreams or tasks you have set your sights on. Well, I am 20 days late by most standards, but for me my new year begins January 20. January 20, 2011 I had brain surgery. A surgery which changed my life.
A doctor recognized the "Invisible" condition that I had and was willing to help me. By that time, I was becoming debilitated with headaches that were constant and daily. Even the strongest narcotics did not touch them. The chronic pain in my body was constant and felt as though I had run a marathon even though I had not been able to run since November of 2010. I had to be careful how I would walk down stairs because if I led with my right leg there was a good chance I would fall down them. If the ground was uneven or if I had walked too much my right leg would often catch any bit of ground that was in its way. At work I would be carrying things in my right hand and all of a sudden, for seemingly no reason, I would drop it. I will never forget the first time it happened. I had just finished emptying a patients urine bag. I was carrying the container of urine with my right hand when it just released and the entire container of urine spread across the floor.
My memory, which has always been one for remembering things in great detail, began to fail me. I would put something down one second and the next I could not remember where I had put it. I would look at people I knew for years and I absolutely could not remember there names. My roommate and others around me would watch me searching for things frantically because I was so forgetful. My frustration grew and I found myself becoming angry at my forgetfulness.
Even my internal organs were beginning to be affected. It came to the point where the doctors were evaluating whether I should begin straight cathing myself in order to release the urine in my bladder. I had lost the sensation to go and I had a difficult time starting. Some times for weeks on end I could not eat because I was so nauseous and for no apparent reason. I began to have my eye sight affected and for a few years I had been losing my hearing for no apparent reason.
I went from being active and running marathons to barely getting through work each day. I would come home and either go to sleep or rest in the lazy boy chair. I had no energy and I no longer wanted to feel the pain that consumed me. Only those closest to me did I let my guard down. Many people would say that I "appeared" normal. But I mostly found myself staying home and attempting to hide my true symptoms. I was tired of hearing people say, "you seem fine!" That is like saying to someone with cancer, "you don't look sick!" Not always do people wear there symptoms on their sleeves, and not always are the symptoms obvious.
I was born with two rare conditions. Chiari Malformation which is a herniation of the Cerebellar tonsils (part of the brain) into the spinal canal. And Ehlors Danlos Syndrome a rare connective tissue disorder that affects everything from the skin inward to the heart. Both of these conditions are not well known by many doctors and so many times they would say what I was feeling was psychological. Often people with Chiari go misdiagnosed for 10 to 20 years if they are ever truly diagnosed. The herniation causes many problems but 2 of them are the fact that the Cerebral spinal fluid cannot flow freely through the brain and spinal areas and thus causing the headaches from pooling of the fluid in the brain. The other problem is that the herniation puts pressure on the nerves running through the area which affects every part of your body, hence the seemingly random symptoms.
When I went to the neurologist, she said to me, "I believe your symptoms are real, I can see in my neurological tests there is a problem, but your symptoms seem to be scattered and not focused so it is tough for me to pin point what is causing them." We both had Multiple sclerosis at the forefront of our minds, as many of my symptoms mimicked that. However, when they did the MRI I had no plaque on the brain, the tale tale sign of M.S., but I did have a 3-4mm herniation of the brain (It later grew to 5mm and when the surgeon finally did surgery he said it was even more than that). That was when we clued into the Chiari. She and I both felt very confident that was the cause of my symptoms and therefore we moved forward to a surgeon. I knew the ONLY possible cure was surgery and so I told my family that that was what I was going to have to do. Little did I know that I would go to so many of the best Neurosurgeons in the world and have them tell me that I was crazy to think the herniation was the cause of my problem. They all said it was M.S. When I would tell them I didn't have the plaque they said, yeah but you have the symptoms. It took me more than a year to finally find a doctor that understood Chiari. My first appointment was more than 6 hours long and was super detailed. He answered any question I had and was so thorough I walked out of there with my head spinning but finally feeling like someone understood me.
Every Neurosurgeon I spoke with about the Chiari Institute told me they were "hacks", and to be careful because all they want to do is surgery. Yet when I asked them what solutions they had for me they honestly could not give me an answer. I finally had to begin to look at the statistics, which showed they had the lowest complication rate, and the highest success rate in the country. I chose them over another neurosurgeon even though it potentially could cost me 50-100,000 even with insurance (By God's grace it ended up being minimal cost compared to what we expected).
January 20, 2011 I went in for surgery unknowing what the outcome would be. At best I may completely improve or I could even get worse. For me I had come to the point that I was worsening so quickly that I would rather try to fix it and hopefully get better than not do anything at all which was already hopeless. They shaved the back of my head from top to bottom and from side to side. The had two incisions that formed a T. They opened the back of my skull and shaved part of my first vertebrae in order to access the brain and spinal area. They had to open the dura and they used a special procedure that most doctors don't do (but is part of there high success rate) in which they cause the cerebellar tonsils to pull back up into the skull. They then close the dura and the skull with patches leaving the space larger than it was to begin with.
When I woke up, I was my usual combative self. I don't seem to handle anesthesia very well :-). I woke up in my room and had wires connected everywhere to me. No one was with me but I knew my mom, friend Carmen, and my brother were supposed to be there. I yelled out for the nurse and she came in saying she was trying to contact them. For some reason the only number I could remember was Sean's. She called him and he said he was 15 min away. I had a clock directly in front of me and I began counting down the minutes. 15 min came and went and I was yelling for them to come in again. By time they all arrived, I was firing everyone of them. I was so confused and uncomfortable. I remember saying once I calmed down, "my head is so clear, I can see. Look I can read that sign." My brother kept telling me to not get ahead of myself. But even though I had just had major surgery and the pain was intense. I could feel a difference both in my head and in my body. There was a clarity that I can't explain. It was like I had been in a fog all those years and the fog had just lifted.
They say it takes a year to see the full results and also to see if the surgery may potentially relapse. Today is exactly one year. They had no idea how much improvement I would have. They knew the headaches would go away but as far as all the problems from the nerves being pinched, that was uncertain because no one knew if they were permanently damaged. I can tell you today that not only are the headaches gone, but my sight and my hearing have improved, and all but the muscle pain has gone away. I have gained control of my right side which was one of the least likely to return.
So for many, they celebrate the New Year January 1st. For me my new year began January 20, 2011. I was given the chance at life again with less pain and less problems. I believe that God has a purpose in everything. He had a purpose in moving me to NJ, 40 min away from the only Chiari Institute in the world. He had a purpose in having me purchase disability insurance before I was diagnosed (When it seem to make no sense). He had a purpose in me dealing with the pain and difficult symptoms...now I can relate to my patients in a way many people can't. He had a purpose in me having Chiari and finding such significant healing. Now I desire to help others understand the condition, specifically doctors, so that others don't have to suffer. Many believe that many of the patients who are diagnosed with M.S. (with scans that show no plaque on the brain) actually have Chiari. The earlier people are diagnosed, the more likely the surgery will heal them. I have shared a few times on this blog my experience with Chiari and I have been contacted by people who I don't even know who have dealt with similar experience but have not found treatment. Last time I met with Dr. Bolognese he said to me, "I hope you can share your story of healing so that others can benefit from it. I can tell the medical community all day long that things need to change in diagnosing these patients, but the person they will listen to is you."
I don't know what this looks like moving forward, but I know that it is part of my mission in life. God allowed me this struggle and has given me a platform to speak from. I only hope that as each new year, January 20th, comes and goes that I will make a difference in some small way in how chiari is looked at and treated.
My lesson I learned from God this past year is He never gives us more than we can handle, and in His word He promises never to leave or forsake us. The lesson I am beginning to learn this new year is that those who seek Him with all of their heart will find Him. He is not hidden but we won't find Him passively. He wants a real relationship with us, and it is up to us to to take His hand and walk forward.
