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1804 Miles To Nowhere

Much to my dismay and despair the trip to Pittsburgh for my second brain surgery did not go as planned. The neurosurgeon did not read my medical records prior to my arrival, as I had thought he had, due to the quote of success of the surgery being 60% according to his nurse. As my sweet friend who accompanied me and I learned belatedly, the nurse did not consult with the neurosurgeon prior to giving me this estimation. After a full day of testing on September 30 I met him and was told I was not a candidate for the surgery to cut my nervous intermedius after all. My rare disorder of Geniculate Neuralgia is apparently even more rare as it is Atypical Geniculate Neuralgia. My symptoms do not match the symptoms of the few other rare folks that have this terrible disorder. My dear friend and I traveled over 1800 miles to be told numerous reasons the surgery would not work well for my pain, but the neurosurgeon did say he would complete the brain surgery if I insisted, with only a 20% success rate compared to the 60% that I was originally told. Twenty percent is not high enough to have anyone cut nerves in your brain, no matter how skilled the neurosurgeon, and doing it at my insistence would mean I would be screwed and he would be free from any consequences should the surgery not go well or even increase my pain.

The 60% chance of success of this surgery was enough to do everything possible to get to Pittsburgh to get the surgery completed. My husband and I set up a GoFundMe fundraiser, to which an amazing number of people donated. We sold many things on eBay, worked odd jobs and borrowed from family, because the chance of a successful surgery and an end to this horrid pain was worth it. I am so grateful to everyone who made the trip possible, but I am also very sad to write and not be able to share stories of healing and an end to this horrible, life altering pain.

While in Pittsburgh I heard from another woman who shares my disorder of Geniculate Neuralgia. She too went through the same process recently with the same hospital. She was given an amazingly high possible success rate for the same brain surgery I was scheduled to have, and when she arrived she too learned that the neurosurgeon had never reviewed her medical history prior to her arrival, so the estimate of a successful surgery was not based on the neurosurgeon’s opinion given her pain and symptoms, but rather an inflated number that served to make anyone with this type of terrible, constant pain willing to jump through hoops, beg for money and sell as many of their possessions as possible to pay to get there.

I understand the neurosurgeon needed to review all of my information prior to deciding whether to perform this surgery, but he had all of my information on which he based his decision to not perform the surgery months prior to my arrival. The reasons he gave me for not doing the surgery unless I insisted were all in a file which his nurse had for several months before my arrival last week. His decision was not based on any information from the testing which was done that day – if so I could understand the necessity for my presence before being told that the chance of success for surgery was much less than I was originally told. It is hard to not be angry that I begged for money and was given so many amazing donations for a trip that would not have been made had the neurosurgeon simply reviewed my medical history and MRI before having me come to Pittsburgh. It is hard to accurately describe the loss of hope this trip and lack of a promised successful surgery have caused. I dared to hope, something I told myself I would not do after my first failed brain surgery, that this surgery would be the answer and would ease some of my pain.

Being told a second time in less than a year and a half that my pain is permanent was devastating. I could not contain the overwhelming sense of helplessness and hopelessness I felt and continue to feel when I was told the pain is here to stay. I was overcome with such panic and complete defeat that this journey to get this surgery done was for nothing. So many amazing friends, family and strangers donated to make it possible for my friend ( who  took time off from work that I could not nearly make up for in coffee and some spending money) and I to get to Pittsburgh and then home. I promised my children when I came home I would finally be on my way to healing and being a functioning, cooking, creating, library visiting, back to normal mama. It broke my heart to learn this was not going to be the case.

The one last possible option to explore came from the hospital’s long-time pain management physician, who agreed to see me on the day I should have been getting my brain surgery. He suggested I find a neurosurgeon who can implant a pain pump in my neck, which would require at least a 4 day hospital stay as the medication levels are adjusted until the pump provides at least a 50% pain reduction. Thankfully, at least at first glance to the website for the manufacturer of the pain pumps, there are two surgeons in my hometown that perform this operation, and several more in our state’s capitol about a 2 hour drive away. I need to find one or two doctors that can implant the pump, and also be in charge of refilling it. I have no idea why none of the many specialists I have seen in the past three and a half years have suggested this, but I am grateful that I have some option to pursue.

I am so happy to be back home with my husband and girls! I do not like flying at all, and I’m glad I do not have to experience a plane as it goes through turbulence any time soon. My sweetest friend is flying back home, and and my girls, who are madly in love with their aunt and I miss her so much already. She kept my spirits up when all I could do was weep when I was told the surgery was not going to happen. She dragged my butt out of bed to go drink coffee and see some of the trees change color- a unique experience for people like me who have spent most of my life in the desert.  She also pushed me in a wheelchair for at least ten miles, considering the maze that is UPMC and the airports we flew from that were so large they had shuttles running between all the terminals. I owe her so much for her help and support. She managed to keep me from having many panic attacks she and made sure that all of my questions for the doctors were answered. I felt so horrible – physically and emotionally ill – over the large amount of money donated to my fundraiser, money given to me by family to cover the travel expenses and the many odd jobs my husband and I did to earn enough to make the trip possible, only to be refused the surgery that was to end much of my wretched pain for nothing. I love you, my dearest friend, for not only  getting me through the immense disappointment of not getting the surgery that was to have lessened my pain. asking all the right questions to the nurses and doctors when I was weeping too much to think clearly and for helping distract me from my pain and homesickness. Though the trip did not  turn out as planned, I am so glad we had some time to spend together.

Also, thank you to Grandma Sandy who came to stay with my family while I was away and kept my girls entertained with trips to the zoo and museums. I’m sorry I missed you this time. Thanks to my family for your emotional and financial support.

I’m so glad to be home with my family. I have never been away from them so long before- it was really hard. I’m sure they would be glad if I came back and would be healed from this pain soon, but they’re so used to me being in constant pain, that it’s just part of who I am for now. I don’t like it, and I hope I can find a way to lessen the pain, but I’m thankful for my incredibly patient, compassionate family who love me even when I am immobilized by pain and I am frustrated by the limitations this disorder puts on my ability and desire to be a more active mama and wife. Thanks to my extended family and friends for all of your help during this really trying time. I love you all! Neuro_law2


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