An update on Shianna, now 10 years old |
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What a difference!! Here's what Shianna's mom says: After Shianna's surgery she remained on Tegretol 200mg twice daily for about 9 months because she was not 100% pain free. Although she was significantly better, she still experienced occasional episodes which she described as "twinges". As her "twinges" became fewer and further apart she was slowly weaned off of her Tegretol. It has now been over a year since Shianna's surgery and she is finally medication free. She continues to experience TN pain but they are very infrequent, sometimes months apart and more mild in intensity. She is a normal 10 year old girl enjoying life; playing volleyball and basketball for her school. MVD gave her back her life. Please know that there is hope! |
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Shianna and Family below |
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Shianna, 9 years old |
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Shianna was 8 years old when she was first diagnosed with TN. It all began on December 17 after cheerleading practice when suddenly she was wild eyed and screaming in pain as she felt sharp stabbing pain in the right side of her face. The pain seemed to come in waves, calming down only to strike again, on and off for hours. She said that it felt like someone was stabbing her in the face with a knife or like she was being shocked over and over again. Little did we know that this was going to be a pattern of episodes that within 3 months would occur daily and sometimes 2-3 times a day. We began to notice that her pain was triggered by cold foods or drinks, chewing, brushing her teeth and even cold wind on her face. Sometimes it occurred for no apparent reason; it could even wake her from a deep sleep. Shianna began to learn to avoid her “trigger foods” and to chew only on the left side of her mouth. |
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She was often unable to attend school. If pain was not triggered by brushing her teeth or by cold wind when she walked into the school building, then it was sure to strike hard at lunch time or recess. It became a rare occasion to make it through a whole day of school. We knew that we had to do something to help her because her anticipation of the pain was almost as bad as the pain itself. Awaking in the morning, she worried that it would soon strike. Before long, she didn’t want to go to school at all. She worried about who would be available to pick her up if she needed to go home or if she could make it through a field trip. Countless times her lunch box was untouched because she wanted to avoid the pain. The embarrassment of having the pain and crying in front of her peers was enormous. Working as a nurse in an outpatient surgery center, I had access to physicians who were able to accurately diagnose Shianna within weeks from her first episode of TN. I had never heard of TN before this but after much research, I knew her diagnosis was correct. I spent countless hours on the internet searching for information on TN. I knew that my husband, Scott, and I had to educate ourselves in order to become her advocate because most Physicians and Dentists are not knowledgeable about this horrific disorder. We knew that we did not want to be sent on the wild goose chase of unnecessary tests and referrals to “rule out” when we already had the answer. We knew that we needed to go straight to the Pediatric Neurosurgeon. But to get to him, we had to see the Pediatric Neurologist first. However, convincing the neurologist remained a difficult task. After all, in his 30 years of practice, he had never seen TN in a child and seemed convinced that in time her episodes would take on the symptoms of migraines. I knew without a doubt that he was wrong and he most certainly was. Initially put on Tegretol, the drug of choice for TN, Shianna could not tolerate the side effects nor did it reduce the frequency or strength of her episodes. The second drug of choice was Neurontin. Again, she did not receive any relief. Very desperate to end her pain, Scott, and I knew that her only hope was microvascular decompression (MVD). Shianna had surgery on April 27, 2006 on the right trigeminal nerve at Children’s Memorial in Chicago. Despite 2 normal MRIs, Dr. DiPatri and Dr. Getch discovered a vein and an artery that were wrapped around the trigeminal nerve and were confident that this was the cause of her excruciating facial pain. Shianna’s recovery went very well and the staff at Children’s was outstanding. Currently, Shianna is on Tegretol 200mg twice daily. Although Shianna is not 100% pain free, we are hopeful that her occasional “twinges” will soon disappear forever. We do know that so far, the MVD surgery has given back her life. She is back to flip flopping on the tumbling team and is also enjoying jazz. Please know that there is hope! Sincerely, Michelle, Shianna's mother |
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