I underwent my posterior fossa brain decompression surgery in January of 2009. Aside from being inducted into the zipperhead club, named for the zipper like scar that starts at the top of my skull and runs all the way down to the top of my neck, the surgery did little to resolve my debilitating neurological symptoms and I was still in substantial daily pain. I was spending most of my days lying flat on my back on multiple ice packs. I rarely left the house.
About three years after my surgery, the pain got significantly worse. I knew something was wrong and after much insistence my neurologist ordered an MRI of my brain. The findings were devastating to me. My brain had once again herniated. I felt like I was stuck in a nightmare.
I was referred to a neurosurgeon in Birmingham, AL. After he looked at my films, he confirmed that my brain had herniated again, but this time it had herniated not because my skull was too small, but because during my first surgery they had taken out too much of my skull and now the hole was too big. The medical term for this is cerebellar slump. It is considered to be a result of a botched surgery.
So now what? There was no way on this earth I would undergo brain surgery again unless my condition became life threatening, which at this juncture it is not. Since the hole is too big, I was still getting a good flow of spinal fluid. However, I was suffering from all the pain and neurological problems that go along with having a herniated brain.
The neurosurgeon told me about some outpatient procedures that might be able to help. The procedures he recommended were facet and occipital nerve pain blocks. The procedure is done by a special anesthesiologist that often works at a pain management center. During the procedure, a combination of nerve numbing medication is injected into several groups of nerves that can be causing severe pain to a specific organ or body region.
I got a referral to a good pain management center where I live in Huntsville, AL and met with the anesthesiologist. He was unsure if the blocks would provide any significant pain relief, but was willing to try. I underwent my first pain block in the spring of 2012. What a difference they have made!
They definitely improved the quality of my life. Instead of spending almost the whole day in bed, I am now able to get up for several hours only having to rest and ice 4-5 times a day. I can sit up for a few hours without feeling like my head is going to explode or my eardrums are going to rupture. They have also greatly helped with the swelling in the back of my neck and help me not to feel like something is constantly pushing against my esophagus.
Since I have made it a personal decision not to take narcotic pain meds unless absolutely necessary, the pain blocks have been a great alternative and I feel a better one as they last me about four months. For those of you considering having this procedure done here are a few tips I recommend.
- Make sure you research the doctor you choose and make sure he or she has an understanding of what chiari is and takes appropriate safety precautions.
- A good doctor will require you to have a current brain MRI before even thinking of scheduling you for a pain block.
- Please allow yourself about a week to recover from the pain block before expecting to feel any relief. This surprised me and at first I regretted having the block done. However, the relief I get from the procedure far outweighs that week of discomfort.
- Make sure you do not overdo it once you begin to feel better. You still need to take your normal precautions and ice regularly. The blocks are to help manage the pain and will not cure the chiari. You can still inflict harm to yourself by doing things you are not supposed to be doing.
- Be prepared for some trial and error as your doctor works with you to find where the injections benefit you the most. For me, I get the best results with having the blocks done as high up towards the back of my head as the doctor can safely get to.
I have had so many of you asking me about the procedure so I wanted to write up a quick post to briefly explain what it is and how it has helped me. Please feel free to leave a comment or question. I am only sharing my personal experience with the facet/occipital nerve block procedures and you would need to discuss the procedurse with your doctor to determine if this is something that might benefit you.
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