The second surgery a few weeks later was The tunneling and battery pack placement however...well that made me cry. A lot. I don't tell people this to discourage them. Because if it works for you I promise you the pain will fade. (and they give you plenty of pain meds to get you through the worst of it) The batteries are SO much worse because they have to rip your muscle. The actual incision is only about the size of a penny but they rip the rest because they need it to scar. The scar tissue is what keeps your battery in its place. At the time of my surgeries they thought the best place would be to implant in the hypothalamus, they now think however they should be placed in the globus pallidus. (A.K.A GPI) I had the first of my complications start about a week after I got out of ICU. I spent almost a week in ICU because I don't handle IV fluids well they make me terribly sick.
Anyway, when I got out my left battery had dropped into my breast. It was causing the worst pain I had ever had in my life. Every breath I took felt like I was being ripped open. I couldn't lay down because it felt like I couldn't breathe. I had to go back in so they could sew a pocket around my battery. Then in 2007 I had a lead break on the right side that had to be replaced. They aren't sure why it had broke but I am pretty sure its because I had been violently ill the weekend before and all the vomiting was just too much pressure, as the wires on that side of my head sometimes felt like they were pulling too tight from the start. In 2008 I had a battery die and had to go in for a replacement. A tiny tiny piece of gauze was caught in my stitching and became a infection.. So I spent another 5 days in the ICU a few weeks after that replacement.
Up until this point I had shown some improvement, not so much with the Myoclonus, but with the dystonia. I didn't have as much pulling and spasming of my muscles. It wasn't really the results I was hoping for but I was never sorry I had gotten it. I would have wondered my entire life had I not. In 2010 the fevers started. I would have fevers and rashes that would come and go I started getting so sick to my stomach I was dropping weight and I knew something was wrong. They kept telling me it wasn't anything to worry about. Until one night I went to the Emergency room. I had had migraines for about 6 months when one night it was so bad I couldn't take it anymore. The ER ran test and admitted me because my white blood cell count was 3x what it should have been. They quarantined me and brought in infectious disease. They didn't know they even consulted with the CDC. Someone suggest an allergy test.
So a week in they were taping me up with all kinds of materials and pumping me full of benadryl. Large doses of benadryl make the myoclonus worse. I was MISERABLE. Turned out though I showed an allergy to silicone. Silicone coats everything the DBS is made out of. They took me in for surgery and took out the batteries first. They wanted to see if taking out the largest component would be enough to calm my bodies rejection of the material down. I was sent home and things got a little better for a while. But then the migraines started again. And I ended up getting lumps under my armpits. Antibiotics didn't take care of them so they went int for another surgery in 2011 and biopsied the largest of the lumps on my right side.
They were fibrous masses that showed signs of staff infection and silicone material. My body was still breaking down and rejecting the leads and wires. So a few months after this surgery I had another to remove the rest of the DBS. I cried a lot those few weeks before and after. Some out of happiness that now the fevers and sickness would stop. Some out of depression that my best hope for relief was the one thing my body would absolutely not allow. 2011 Was a hard year for me. It was a time when things got worse for a while after the last surgery I was having migraines still because the dystonia was acting up so much. The muscles behind my hears would pull so tight i would just have ringing in my ears. I was in College and I had managed to keep up with my classes. I was also working still..but after the last surgery I was out for too much time. The job I had at the time I couldn't be in the office with open wounds. MRSA was a problem in the office. I would eventually quit that job, I couldn't be at the office enough to be effective and the stress level on my body was too much. So I thought I would just continue on with school but even that had become a struggle from 2010 -2011.
I was only 24 credits from my associates when I quit school. Things they don't tell you because they aren't as common but my memory changed after brain surgery. A LOT. I have HUGE gaps in my long term memories. People tell me things that have happened and I almost just have to believe they did because I just don't know. My short term memory is also not as great.. I struggle a lot with it and also trying to put sentences together. Sometimes I have sequence problems.. I am not sure what order things have happened in past events. Numbers were never my thing.. But math became IMPOSSIBLE. I would study with tutors for HOURS before test and still fail miserably.
MY frustration grew and I reached the limits of my patients. My myclonus was out of control. By the time i would get to class I would be exhausted from all the involuntary movements and the weight of my book bags. I sadly.. was done. This was just one part of my life though. I wanted to study the brain and be a physiologist. I had dreams.. But those dreams needed to change. They had to adapt just as I had to with the new things that were going on with my brain and body. In 2012 I started not meeting as many of my neurological markers that I should have. I Had started working part time and remember so well the day my Neuro told me It was too much stress. That it needed to end. He said and I quote "What is happening to your body is the equivalent of someone being in a car accident EVERY week"
The jerking of the myoclonus was pulling my muscles into spasm while the dystonia was twisting them into knots. I Continued to work I little longer I REFUSED to give in...but the migraines started again and I was missing too much work between them or just having too many involuntary movements to be able to safely drive. I had been on disability from 2005 till 2012 with stipulations that I could work. 2012 was the last time I worked. I was sad to lose that independence. My body thanked me however. I started sleeping better and the movements slowed down. I was thankful and so were my muscles. Things would change though.. But this is where I will end this today until the morning.
One last thing I think is of importance to take note in though.. While a large Majority of patients are people with dystonia affecting only one or two parts of their body. I have also the rarer of the types that affects my entire body. Mostly my trunk, arms, neck and head. But really bad days will include my legs also. This makes treatment hard because they cannot focus on one muscle group.
.
No comments:
Post a Comment