Help Me Get To Dr. Linskey- TJW

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Story
Updates 7

Created February 2, 2018

Rosemary Cary

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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Update 7

Posted by Rosemary Cary

9 days ago

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.

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Update 5

Posted by Rosemary Cary

1 month ago

In exactly one week my mother-in-love and I will leave for CA to meet Dr. Linskey. I am very nercited (nervous and excited). I am actually feeling ALL the feels. And then I go some days feeling completely numb and detached. I’m back and forth and in great pain all the while.
There is so much going on between now and then. Moments of joy and great pain and more joy along with my pain and so on. Life always, all ways, keeps happening. I could say no and yet, I choose to keep showing up for all of it because I don’t want to miss a moment.
My son makes out his schedule for his freshman year of high school tonight. My baby will be in high school next year. This is a huge moment. We keep building the foundation for him and he gets closer and closer to stepping off of it. Bittersweet. Mostly sweet.
On Thursday I go to the dentist. This is all hell for a person with my neuralgias. It’s a nightmare to think of anyone touching my face at all AND going into my mouth with tools, etc. I am exposed to many triggers of my pains & my nerves gets really pissed off in the during & the after. And in “the during” of it my mother-in-love is with me. She loves me through. And I am with a dentist and her staff who know my condition and show up for me with great kindness & love.
And then on Friday, JOY interrupts again. My mother-in-love and I host a slumber party for my daughter who is turning the big 10. DOUBLE DIGITS!!! We are starting with a trampoline place, then pizza and cupcakes! And to my mother-in-love’s for presents. And the 6 girls do their things. My daughter has been counting down for weeks! Her joy is so very contagious
And Saturday is her actual Birthday. Celebrations all day! My baby turns double digits. I can’t believe it. Right before my eyes she just keeps growing in all the ways. She’s a tween and my baby all at once. And/Both. Like Joy/Pain.
Sunday we have soul food at church and fill our spirits. Breathe in and breathe out. Take a moment to rest. A day to rest with great pain.
AND THEN WE PACK! Ohmyhell, the packing. How do we and what will we?? The easy answer is to pack all that I own. Thirty outfits for three days. You know, just in case. What do I wear for my first impression with Dr. Linskey? My mother-in-love will know. She always knows. That’s part of loving me through. She always says she doesn’t have words when it comes to my pain. And yet. And yet, she always, all ways, knows just what to do.
Please keep us in your prayers. And my kids. And my hubby and father-in-love who will take over while I am away. Prayers are so very powerful.
Thank you for being with us each step of the way.

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Update 4

Posted by Rosemary Cary

1 month ago

The time to go meet Dr. Linskey. Twenty-one days to go. I go minute to minute, hour by hour, day by day. Many moments of joy continue to fill my life. Monday night my kids and I celebrated my mother-in-love’s birthday which was great joy. Pain was forever present and yet...so was joy.
Yesterday, I had a root canal. A most dreaded event for someone with my neuralgias. The bounce back is hard. I still look forward AND my right now is hard.

What I most want to share right now is that last night we shared with our kids (Carter and Scarlett- 14 and 9) that I have this opportunity to meet with Dr. Linskey. I had been planting seeds of his skill and handy work and sharing stories of his successes with other TN warriors. They couldn’t believe it. My kids exploded with excitement. First thinking we’d all be going to CA. I had to explain it wasn’t that kind of trip. We all wished so.
As I explained the process and time frame of 3 days away the first trip, they were okay-ish. And then I explained the time frame of 16-20 days away when I go back for surgery. My daughter melted down. My son got defensive about her tears because he wants me to find relief. My daughter feels the same and yet she also wants me here. She was ok once we reminded her of face-time and texting and play dates and so on.

It is always so important to remember that although I am the one with the injury, we were all traumatized by what did this to me. We are all in this together. The long stay afterwards is to be close so the doctor can monitor me and if I need something he can help. I will be in ICU 3 days if all goes well. And have a 2 week follow up while there.

The surgery I will be having is called a MVD- microvascular depression. It’s a craniotomy. A major brain surgery. I am putting my self in the best hands and I cannot say enough how very grateful I am to all of you for helping me get there. For every donation. For every prayer. For every word of encouragement and support. I am overwhelmed with gratitude. For my tribe and friends and family and Jody and all of the people she sent my way...it is so good to be loved. Thank you.

My kids were overwhelmed to see this site. To see how people have shown up for us. For their Mom. They thank you too. We all need continued prayers. My mother-in-love included. I couldn’t do any of this without her.

Keep choosing joy. Choose it. Feel it. Spread it. The side effects are the best ripple I have to offer. I love you. I love me. I love us.