Numb and Tingly …

Published by CDigsBrainstyle on September 7, 2022September 7, 2022

In 2021 I was working at a Global Manufacturer as a top salesman and on the side coaching others on relationships and finances. On the morning of April 17th, 2021 my life changed from a Symptomatic Hemorrhage stroke in my brainstem from a rare Cavernoma*. When I awoke my whole left side had a slight tingle to it. Being very naïve, my symptom research led me to believe I had food poising from a beer the night before. I had one beer and the tap noticeably poured very slow, leading me to belief it was clogged and had bacteria in the line. I had no thought of a stroke, but had my CCM disease in the far, far back of my mind. At 32 my wife and I found ourselves researching surgery, stroke, and healing timelines.

*“Cavernoma or Cavernous malformations are clusters of abnormal, tiny blood vessels and larger, stretched-out, thin-walled blood vessels filled with blood and located in the brain. They resemble mulberries and blood moves through them very slowly. The thin vessel walls can be leaky and may hemorrhage  allowing blood into the surrounding brain or tissue.”

I am no stranger to this disease, growing up with a mom who had around 27 brain procedures which included a shunt, shunt revisions, spinal taps, 2 cerebellum cavernoma removal surgeries, and multiple brainstem bleeds. She was left in a wheelchair for most of my childhood from 1996 till she left us in 2013 from natural causes. 

As we choose a surgeon we most certainly looked for a lot of experience with this extremely sensitive area. I’m a Godly man and was in prayer a lot asking for a sign and direction with this challenge. Our local surgeon suggested the Borrow Neurological Institute for surgery after a second MRI confirmed a second bleed with in the week. My wife Maria sent in for the second opinion that day. As we were waiting for the response Maria finds the folder I was looking for with our family’s Genetic Test results.

The most amazing part that gave me peace was the test was done at the Barrow Institute over 20 years ago! Talk about a sign when you ask for one. I hadn’t learned about the centers of excellence yet and just happened to stumbled onto one of the world renowned surgeons, Dr. Lawton, for Brainstem Cavernomas. God is so Good! 

With this surgery we not only removed the brainstem lesion, but a previous lesion that bleed in my cerebellum as well. I had the brainstem surgery in July of 2021 and it went very well. I did have some additional ailments from the cerebellum surgery, that I’m still working through. Coming out of the 10+ hour surgery I couldn’t pass a swallow test, resulting in a feeding tube to be placed directly into my stomach. I couldn’t walk normally from my ataxia, my balance was off, the coordination on my left side was compromised, and I had developed left side Peripheral Neuropathy (a numb and tingly feeling mixed with pain). I had double vision from a right eye palsy of the 6th cranial nerve and my left eye had nystagmus. I had/have loss of hearing in my right ear, developed a palsy on my right side of the face and my speech was slurred. Even with all those aliments I was positive, hopeful and ready to start the healing journey.

I knew about neuroplasticity from prior reading and am very confident about recovery and my body’s ability to heal itself. Now post surgery I’m still healing and making great progress everyday. It is hard, very hard some days, but I know God has my back through this season. I’m doubtful at times thinking I’m not worthy, that this season is a punishment for me or just down on myself. I’m working on it daily, meanwhile focusing on what I can control and know what is true; that I’m a child of God and his will is perfect and well pleasing. This mess will be used for good and recently I’m ok with where I am while I’m on the way to where God is taking me. 

I like to call this a waiting room for advanced patience! My wife Maria is an my angel during this season and it would be very very hard without her. My Grandma has also moved in and has cared for me so much with my healing so far. At this point I’m still doing 100+ minutes of therapy a day to build on that Neuroplastic healing. I meditate in the morning and evening with breathing awareness exercises and listen to positive talk. I’ve altered my diet to include all organic whole foods, wild caught fish, and very little dairy. Absolutely no preservatives, dyes, additives, emulsifiers, breads, grains, lectins or sugars. I have always had a strong belief that Hippocrates had it right “Let food be thy medicine and medicine be thy food.” I choose not to take medications for any pain or discomfort but instead approach it from a nature first perspective with natural healing.

I have read some medical literature to educate myself and to see the outcomes and statistics. It is estimated that about 8% of all strokes occur in the brain stem with a fatality rate of 61-75%. A symptomatic hemorrhage is the most serious complication of cavernous malformations especially in the brain stem and is the most common reason for surgery. Only about 25% of cavernous malformation patients have the genetic CCM mutation creating the lesions. This is what our family has, and the brainstem is shown to be the second most rare location a lesion can develop for this disease. When I learned these statistics I was overflowing with gratitude for my life. It’s so easy to get down on yourself as you’re healing, but I am constantly reminding myself that by the grace of God I’m alive! 

I wrote a poem recently to my wife and myself for encouragement; hopefully it will help you on what ever journey you may be currently facing.

Sorry I’m not there at times when you need me.

I’m currently grieving the old Corey and learning to accept this better new version.

It is a very hard transition, with lots of emotional ups and downs.

Everyday I get a little better and move towards my true happiness within.

Forward is forward no matter the speed.

I have faith that God is in control and this too shall pass.

I trust great things are coming.

It can be a slow recovery but I’m reminded that my path is difficult because my purpose is larger than I thought. I believe strongly that with God all things are possible!