Arnold Chiari Malformation

Many of you have asked about my mom, her surgery and how she is doing. Thank you so much for your caring thoughts, prayers and sincere concern. My mom wanted to share her story in hopes that it could help someone else. You see, for several months, we had no idea what was causing her terrible symptoms. She was in and out of the hospital many times, doctors either didn’t have answers or they told her that she needed to be evaluated for psychological problems and labeled her “depressed” and “crazy”. Some doctors even thought she acted like she was a drug addict. We saw so many doctors who just didn’t care and didn’t help. It was quite disheartening.

Finally, she was diagnosed with Arnold Chiari Malformation. Simply put, the lower part of her brain had fallen below her skull. With that, the amount of pressure on the brain and brain stem can cause some very severe symptoms and there are no medications that can remove that pain. There is no definitive answers as to why her brain is lower than it should be.

Sometimes, with a chiari malformation, surgery is needed to take pressure off of the brain and brain stem. My mom had some neurosurgeons tell her that she wasn’t a good candidate for surgery and some say she was. So, she tried many conservative treatments first (specialized chiropractic care, massage therapy, nerve blocks, cranio-sacral therapy and more). None of these treatments gave her any relief, so she decided to schedule surgery. This surgery is gruesome and terrible. Basically, the neurosurgeon removes the bottom portion of the skull as well as the first bone in the neck. This removes the pressure on the brain and brain stem. The surgery is dangerous and there is no guarantee that it will take the pain and symptoms away. Many repeat the surgery later in life. The recovery following surgery is long and hard.

Mom decided to get the surgery done because she was losing her life. She cried every day and night with terrible head pain, which the strongest pain meds couldn’t take away. She described her pain as if someone was jamming a knife into the back of her skull over and over again. She was constantly throwing up because her pain was so intense. She had mumbled speech, weak arms and legs, some days she couldn’t walk or if she tried she would fall. She had terrible ringing in her ears, and her eye sight darkened. There were days where she couldn’t swallow, so she rarely ate and if she did it was a smoothie or mashed potatoes. She had trouble breathing. She slept day and night, or tried to. The list goes on and on and the longer she suffered, the worse her symptoms became.

So, Monday, July 14th she had surgery. Everything went well. She spent 4 days in the hospital and now she is home! Her pain has significantly decreased AND she is only taking a quarter of the pain medicine now compared to before surgery. She can already speak clearer, she has more strength in her arms and legs. Her eye sight improved and the ringing in her ears is less. She doesn’t have any problems swallowing. She is making GREAT progress.

She has a long road of recovery ahead. Like I said, the surgery is gruesome. Many muscles were cut and it will take a long time to heal. They also removed a portion of the brain tonsils. This is close to the area that regulates nausea. So she can expect to be nauseous for possibly months. She will never be able to play football or wrestle (don't think she will mind) and always have a 10 pound weight restriction for lifting.

Lastly, my mom, and our entire family, are so thankful for each and every person who said a prayer, wished us well, gave support, sent flowers, wrote a Facebook comment, etc. She has felt very loved and cared about which is so important for healing.

The hospital was great and the doctors and nurses were the BEST! What a difference it makes to have great nurses who care. Lastly, I’ll leave you with a few quotes that were written throughout the hospital that spoke to me:

“The quality of one’s life depends on nothing but the mind.”

“Those who have health, have hope. And those who have hope, have everything.”