I think a mistake that many people diagnosed with Chiari often make, is hoping and believing one surgery will fix everything. For some that is true. That is what I thought would be the case with me. I went from having so much pain all the time, to a drastic relief right after surgery, I didn't think it was possible that anything else could go wrong. Ha-I was quite mistaken.
Some things in January ended up causing a rise in intracranial pressure around my brain. One thing I will say-you DON'T want any fluctuation with any of your hormones after surgery haha. It can trigger that swelling. So January-March I could feel it getting worse in my head. Not only that, but because of all the swelling, it was bringing back some of my old symptoms. I was getting tingling/numbness down both of my arms pretty consistently. I went back to Dr. Rosner to see what was wrong, and when he saw me he knew it was getting bad. His words to me were, "You look like you have been beat to death." Doesn't he know exactly how to get to a girl's heart? haha But he also knew by the fact that I had gone to see him at all meant I was hurting really bad. I am an awful person about admitting my symptoms and being honest with how I am physically feeling. My typical answer when anyone would ask, would always be "I am fine," or "its going to be ok." I don't like feeling bad (who the heck does) and definitely don't like telling other people how badly I am feeling. Second thing I will say-with this I have learned you need to be upfront and honest about EXACTLY how you are feeling. Little things truly can make a difference.
But he did a few scans and saw that the pressure was getting worse, wanted me to come back in 2 weeks (after trying 2 new medications during that time) for some more tests. He also explained different options, such as a shunt (he didn't think that would solve my problem), a laminectomy (he didn't want to do this one), and then explained my artery was still pressing into my brainstem. He said we would talk more in two weeks.
I started taking the medications, and felt no relief, just more exhaustion. One had a diuretic in it (so I had to go to the bathroom ALL the time-I felt like one of those bladder control commercials haha), and the other one made me so sleepy all the time. My body decided it had had enough of the pressure, and if I wasn't going to listen to it, it was going to make me. A Thursday night I was out with some surgeons I work with and while walking on the sidewalk my legs gave out. This hadn't happened since before the first surgery, and the feeling comes on unexpected. I am walking and the next thing I know I can't feel my legs and I am on the ground. I didn't tell anyone this happened...The next day I was at work (physical therapy-rehab) and my right arm started having muscle spasms. Next thing I knew-I couldn't move it and it just hung limp by my side.
That night I talked with Dr. Rosner and he told me to double the steroid dose and call in the morning. That afternoon I was being admitted into the ER in Hendersonville. Dr. Rosner put me on bed rest, ordered far too many blood tests, and said I would have more tests and exams the next morning. For three days they did extensive blood work and MRI scans on my brain/cervical spine. He then said he needed to go in and operate. He felt the best chance I had to get better, and especially recover the use of my arm (it was still not working), was to go in and open up my spinal canal so that my spinal cord had more room and the pressure (extra fluid that had built up) could drain out. That Tuesday he performed a C2-C7 laminectomy. I was in the hospital for 7 days for this one and in a whole lot more pain.
It has now been three and a half weeks since surgery and the pain has still not gone away. He said it could be 6 weeks to a couple months of this pain. Not an idea that excites me. My arm use has returned, but I am continuing to have the tingling/numbness and even some pain down my arms. The pressure is not better yet...He will not be able to tell just how successful this one is for a few more weeks. I see him at the end of the month. Oh yea :) One thing he said is that I have to understand this is a lifetime problem. I could be fine forever, or I could only be fine for a little while before I have to have something else done. However, even with that in mind, I would happily do it all over again. Those of you that have Chiari and understand the intense pain, understand why I would do it over even if it was only for a few months of relief. Obviously, we hope it lasts longer than that since the first surgery was $30,000 and the second one was $18,000 and those bills will be coming for a while haha.
But this is a serious problem, and far too few surgeons truly understand what they are doing. You have to find a specialist who will believe you and your symptoms and won't either attempt to medicate you forever, or do the surgery and do a terrible job.
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