Life Changing Nerve Surgery

A letter from my daughter...

Hi, I’m Kristin. Some of you know me and have followed my journey. Some might not know me at all. And to everyone, it means the world to me for you to read my story. I’ll try to keep it short, which is extremely hard when so much has happened. But it goes like this…I woke up one day in the middle of January 2023 with a headache that never went away. It has now been two years and almost four months that I have lived with pain in my head every single day. It can range from a 3 on the silly emoji pain chart all the way up to a 10 – or what sometimes feels even greater. I have had headaches in my life before that were helped with a little extra Aleve and a good sleep. But when this happened, it was different. Like most people that have a health issue, they start with their PCP and when she realized she could not help my pain, she sent me to a neurologist. Fast forward through an extremely rough year with two different neurologists who incessantly pushed migraine diagnoses on me even when I explained that I did not have a single other symptom of any type of migraine other than pain. The pain always emanated from one spot in particular above my right eye below the brow bone level. I cried in their offices, I just wanted them to listen, to try to understand. I pleaded for help, for relief. I was met with disconcern, arrogance, and had every migraine and pain medication thrown at me known to man. Who knows what these pills did to my body, but they certainly did not help my pain. I was in the ER in the beginning about 6 or 7 times to the point where the trauma nurse knew who I was and was the first person that I felt truly had some sympathy for me. But the ER could not help me either. They drugged me with “migraine cocktails” and I was pulled into a room one of my final trips there and told by a nurse practitioner that I needed a 2nd opinion, pain management, and then sent me to a makeshift treatment area in the ER lobby where they dosed me with both morphine and fentanyl, then kicked me out the door. This medication made me loopy as hell but did nothing for my pain. I stopped going to the ER because I realized they could not or would not help me. My local neurologists gave up on me as well. During my last appointment with one of them, he threw a few more prescriptions at me and said he was referring me to the Mayo Clinic in Jacksonville. He said they might not take me, but he would send my notes. That was that. I was ready to give up.

After my first visit to the Mayo Clinic, the neurologist I saw who specialized in headache issues listened to every concern, everything I’d been through, and he was more knowledgeable about every nerve, muscle, piece of tissue, and so much more inside your head than one could imagine. I felt hope for the first time in a year. Fast forward again to today because I know I’m already doing the long-winded storytelling I normally do. After many 6-hour drives in the car to get to Jacksonville, several appointments and portal messages, eliminating different diagnoses including (FINALLY!) migraines, we discovered that I was most likely suffering from a compressed nerve in my head. It made complete sense why no typical pain medication would work for me. Nerve pain or neuropathic pain differs from other pain types in how it interacts with the brain. It involves damaged nerve fibers sending incorrect signals leading to abnormal central sensitization and potentially creating chronic pain. Plain and simple, a Tylenol was likened to a Skittle in my body. After attempting new med regimens, steroid & lidocaine nerve blocks, and other treatments, my neurologist determined that the best hope for possible permanent relief would be nerve decompression surgery. I was ready for it. So ready. I spoke with the plastic surgeon who would perform the surgery, it was scheduled, and it was time to go. Until my insurance denied it. Prior authorization – denied. Internal appeal – denied. Peer to peer conversation between the surgeon and the medical director at Florida Blue – denied. I have hundreds of medical records and documents from world renowned doctors rubber stamping that this surgery is a medical necessity for me and still denied. I was sent a good faith self-pay estimate for $75,000 to be paid up-front to have the surgery. My heart sank and I felt more hopeless than I have ever felt in my entire life. The fact that I might live with this pain forever was absolutely devastating.

So, I’ll get to the point here somewhere. Two years+ of pain in my head every single day has been so exhausting. I spend most of my days struggling through a full 8+ hours of work then I come home and lie down with an ice pack on my head for the rest of the night until I can sleep. I am taking a max dose of a nerve medication that is now failing. I am terrified that I am going to have to go on disability at 40 years old. I finally feel like I have a career and I work so, SO hard through the pain every day to try and not lose the security and sense of purpose I struggled for years to achieve. I have missed so many important events and milestones with family and friends. I feel massive guilt every time I have to send another “I can’t make it, I’m not feeling well” text. I cry a lot. But that makes the pain worse. I gained 30 pounds from a medication that I cannot shave off because exercising makes my head throb. I can’t stay in the sun for too long because the heat and brightness make my head throb. My friends have given up on inviting me to places because I probably won’t make it because whatever I do might make my head throb. I feel like I must treat my head with kid gloves because even speaking too loudly or lying down a certain way might cause my head to throb. I cannot go on like this.

I went into full force mode working on an external appeal earlier this year for the $75,000 surgery. Calling attorneys. Calling Congressmen. Doing anything I could to fight this. It took several months to get my next appointment with my Mayo Clinic neurologist and he was not surprised at the insane amount of money the hospital was asking for. He immediately gave me the names of two out of-state surgeons who have been doing nerve decompressions in the head and other parts of the body for 20+ years. One of them wrote one of the first studies on this type of surgery and was a big part of standardizing parts of the procedure. Dr. Ducic of the Washington Pain Institute gave me an immediate tele-visit and determined I would be the perfect candidate. He said that not only was my main supraorbital nerve likely compressed, but also two other important nerves in the area – the supratrochlear and infratrochlear. He explained that when he went in for the decompression, he would not only dig out a tunnel of muscle, tissue, bone, whatever is hindering the nerve or nerves, but if it seemed more complex, he would excise the nerves completely. Basically cutting off the fibers at the ends to stop pain signals from those nerves from being sent to the brain. The max cost would be $20,000 – no more. And his success rate for patients post-surgery is 85-90% pain-free. I waited on edge for an appointment, and I am now scheduled to have my nerve decompression surgery on May 19th. It feels like it’s all happening so quickly at this point. My boyfriend and I will be traveling to Virginia and I am having this surgery no matter what. I want my life back. I want to have fun. I want to enjoy every single second of every single thing that I took for granted before being in pain.

Dr. Ducic’s clinic takes the CareCredit card. I was able to apply for it and they will pay the clinic up front. But I will have $20,000 to pay back. I hate to even put this out there. I have never asked for a dime from anyone in my life. I have had a job since I was 15 years old, 3 jobs through college, and have worked full time ever since. I have always done what I’ve had to do for myself, and I am very proud of that. But sometimes, you need to ask for help. And here it is. Being put in this financial situation will make our lives much more difficult right at a time when my boyfriend and I were finally getting on our feet. The payments will be enormous, and we’ll eat ramen every night if we have to. I could never thank anyone enough for giving, but every single penny would help. I also accept healthy and healing thoughts as I know times are tough and people do not have extra money just growing on trees. I am not going to say I am not scared of the financial burden. Or that I am not scared of the surgery itself, the pain of recovery, not knowing the outcome. When you’ve had pain for so long, it’s hard to imagine being without it. But it is a very real possibility now and it’s happening. Thank you for your time and for considering helping me fund this surgery.

Love and light to you all,

Kristin ❤️