Jalees Battle

Many of you know me as an upbeat, active, hardworking and positive person, who cares deeply for family, loves hanging out with my friends and loves life! In 2020 my health took a turn for the worst.

 

As time went on, the pain began to get worse. My neck had begun to hurt, and like most people, I thought I had pulled a muscle as many of us have, and the pain would subside. I decided to try physical therapy to relieve the pressure and pain; sadly, that didn’t solve it. My mother and I had decided it was time to see a doctor. In the following weeks, I received an x-ray and MRI as ordered, and this is when I found out and diagnosed with Chiari Malformation, Type 1, and a possible tethered cord, just one week after my 20th birthday. I didn’t know what to think or do. I was terrified.

 

For those of you who don’t know what these are, here are the clinical definitions: Chiari Malformation, Type 1- occurs when the section of the skull containing a part of the brain (cerebellum) is too small or is deformed, thus putting pressure on and crowding the brain. The lower part of the cerebellum (tonsils) is displaced into the upper spinal canal. Goal: to stop the progression of changes in the anatomy of the brain and spinal canal, as well as ease or stabilize symptoms. Treatment: surgery called posterior fossa decompression, the surgeon removes a small section of bone in the back of the skull, relieving pressure by giving the brain more room. In many cases, the covering of the brain, called the dura mater, may be opened. Also, a patch may be sewn in place to enlarge the covering and provide more room for the brain. This patch may be an artificial material, or it could be tissue harvested from another part of the body. When successful, surgery can reduce pressure on the cerebellum and spinal cord and restore the normal flow of spinal fluid.

 

 

 

Tethered cord syndrome: is a rare neurological condition in which the spinal cord is attached (tethered) to the surrounding tissues of the spine. This prevents the spinal cord from moving to keep up with the lengthening of the spine as it grows. The result may be nerve damage and severe pain. Treatment: the procedure involves making a small incision in the back. Through a series of steps, the neurosurgeon carefully cuts the band of tissue that has attached to the spinal cord to release it. As far as my tethered cord is concerned, I won’t know anything until after my Chiari surgery. I will have to go back in and see if my tethered cord is affecting me and whether or not I have any more pain. This will decide if I need to be operated on again.

 

At the time (2020), when I was first diagnosed, we were referred to Coastal Neurology in Anchorage, which for those who do not know how far away that is, it’s a 500-mile trip total there and back. We met with the surgeon and discussed how many people live with this pain and how some people don’t even know they have Chiari Malformation. We also looked into my options for this type of brain surgery, and after careful consideration, I decided to try and live with the condition as my symptoms at the time were minimal. As 2021 rolled around, severe neck pain and headaches were getting so excruciating that it would cause me physical illness and nausea, and it would just wipe me out. I would have to ask a family member nightly and sometimes twice a day to massage my neck to relieve the pain and pressure enough to get a decent night’s rest. This was when my battle began. Symptoms began getting more severe. My ears began to ring, and my balance and coordination were affected so much that, at times, I felt as if I would lose my footing, and I would have to sit down until my body felt stable enough to get up and walk again. Dizziness was the next symptom to rear its ugly head, then numbness in my arms moved in. My most recent symptom is occasionally I have trouble swallowing. It feels as if something is blocking my throat. At times, I have multiple symptoms simultaneously, and it feels as if my body is attacking me and breaking me down.

 

This condition affects not just me as a person, but it affects my job, family, and social life. There are days that I have to call in for work or cannot do something as minor as going to get groceries because the simplest thing like looking up at a street light or lifting an object can cause a surging pain to shoot up my spine and throughout my head. Picking up heavy things, goofing off with my sisters, playing with my little brother, and running (as I dearly loved to do), are no longer possible. Exercise in general or anything that applies G-force to my neck is simply out of the question.

It is now 2022, and in the last month I have had another MRI, two consultations and another visit to my surgeon in Anchorage. On this last trip, we attained a surgery date that is fast approaching. I have three weeks, and I’m in surgery. In these last few months my emotions and stress levels have been a rollercoaster ride. I have been overwhelmed with emotions ranging from happy, sad, scared, distressed, apprehensive, eager and oddly enough, comfort. My nerves are amped up, but the support I have from my family and close friends has made it bearable. I know my family has been right there with me in these emotions, and I am so grateful to have them. I am also thankful that I do not have to travel out of state for my surgery. This is all very bittersweet.

 

I am looking forward to a pain-free life with no limitations after this procedure! I am so excited that I will be able to throw my little brother up into the air again and hear his infectious giggle, and be able to play baseball and volleyball with my sisters this summer! To start my life and reach my goals, that this condition has kept me from.

 

This Go Fund Me is to help my family financially with the expenses that will quickly accrue by staying in Anchorage away from home while I am in the hospital for my surgery and the days of recovery and observation that will follow. My family has been through so much, and this is my way of helping them, help me. I humbly ask you all to please help and give what you can to meet my goal for their stay and travel. The amount I tallied will cover gas there and back; the four days stay in Anchorage, and meals. As of now, I am allowed one visitor per day due to Covid-19, so nobody is allowed to remain in the hospital with me. Please help and give what you can so my family can be with me.

 

My mother will try and keep this updated all the way through my surgery and recovery. Prayers, prayer flags, candle lighting or anything else that you can do to keep spirits high and positive thoughts flowing will be appreciated. Thank you, and God Bless!

 

-Jalee