Help Me Get To Dr. Linskey- TJW
Four years ago I was diagnosed with Trigeminal Neuralgia on the right side of my face. This disease affects the 5th cranial nerve which sends pain signals to the brain. It divides into 3 branches of the face. I have it in all 3 branches. This disease is documented as the worst pain known to mankind. I went through 3 brain surgeries with Neurosurgeons in Louisville and all 3 did not have good outcomes. My last surgery ended in the most dreaded outcome, anesthesia dolorosa. An outcome that make my life a day by day or minute to minute life. I live in horrific chronic pain on a daily basis with the right side of my face. The right side of my face, mouth and part of my head are numb AND it feels like it’s all burning 24/7. All of my teeth feel as though they are being pulled out over and over. I still get the shocks of TN in my temple and ear and tongue and eye. It never stops. Moving my face is painful. I had to get a permanent feeding tube because chewing and swallowing is so painful. I had to completely stop working. I have no comfort zones because of my face. It changed my life forever and my family’s life. And now, last October, the symptoms of trigeminal neuralgia began on the left side of my face. This is called bilateral TN. With the right side of my face, there is no end to my suffering. There are no more surgical options and I am maxed out on medications that do very little. And for my left side, there is HOPE. His name is Dr. Linskey. He is THE neurosurgeon to go to for TN. He is also in Orange, CA. I am in Louisville, KY. I do know that he is in network with my insurance company which is an enormous Godwink. However, there are travel expenses to get there and back for the consultation and accommodations. And then if he agrees that he will take me on to do the MVD (craniotomy to place padding in between the nerve and whatever is compressing it), I will have to return again for surgery and a longer period of time. My mother-in-law will be my support companion. I feel like I’ve been given so many Godwinks to put me on this path to Dr. Linskey. And I know in my heart that amidst the anxiety, physical and emotional and mental fears and hurts, and financial strains- there is hope. There is faith beyond how things ended with the right side of my face. There is faith in this man who has dedicated so much of himself and his talent to people who suffer so greatly with TN to offer them relief and hope. I just need help making it all happen. It is so very hard to ask for help AND YET, here I am doing so. It is with the support and encouragement of a beautiful tribe I have that I ask for help to get me to Dr. Linskey. A man who has the gift of healing hands. Thank you in advance. I love you. I love me. I love us. #Joywarrior
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It’s getting closer. My mother-in-love and I leave for CA in 9 days! I am all over the place with my feelings. I am so very full of hope. It’s like God keeps showing off in the way that things are falling into place. And I keep looking up to Him saying, “You got me...again. Thank you.”
All of my feelings are swirling and twirling. And my pain is forever on a giant pedestal above them all. I am not sleeping much. My face and head are screaming. I look ahead knowing Dr. Linskey will work his magic to relieve me of two of these beasts. There is an abundance of gratitude in that. AND I know that I will still have the anesthesia dolorosa along with my trigeminal 1 & 2 along with the pain of a recovery from major brain surgery. I am so strong AND I am weak. I keep tell my self over and over, “I do not know the outcome and I am at peace.” I laugh at my self AND I embrace this. It’s always, all ways this dance and tug-o-war of AND/BOTH.
Josh and the kids have many feelings too. I have said all along that I have the lasting traumatic injuries but we were all in a car crash together. The last surgery changed all of our lives. It hurt us AND again, taught us more about resiliency. Together, we just keep going.
I exist in pain. I live every time I choose Joy. This surgery won’t take all of my pain. This I know. Yet Dr. Linskey CAN and IS going to take two of these 4 beasts on my right side away from me. I am leaving in 9 days! I am having surgery May 3rd. Grace upon grace upon grace.
All of my feelings are swirling and twirling. And my pain is forever on a giant pedestal above them all. I am not sleeping much. My face and head are screaming. I look ahead knowing Dr. Linskey will work his magic to relieve me of two of these beasts. There is an abundance of gratitude in that. AND I know that I will still have the anesthesia dolorosa along with my trigeminal 1 & 2 along with the pain of a recovery from major brain surgery. I am so strong AND I am weak. I keep tell my self over and over, “I do not know the outcome and I am at peace.” I laugh at my self AND I embrace this. It’s always, all ways this dance and tug-o-war of AND/BOTH.
Josh and the kids have many feelings too. I have said all along that I have the lasting traumatic injuries but we were all in a car crash together. The last surgery changed all of our lives. It hurt us AND again, taught us more about resiliency. Together, we just keep going.
I exist in pain. I live every time I choose Joy. This surgery won’t take all of my pain. This I know. Yet Dr. Linskey CAN and IS going to take two of these 4 beasts on my right side away from me. I am leaving in 9 days! I am having surgery May 3rd. Grace upon grace upon grace.
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