Just in a moment it began….it started as a little bit of pressure, a little nerve fire above my forehead… then it came, a rush of pain, a hot, fast moving spiral of extreme pain, rolling around in my head, then the build up of nausea, don’t move, please don’t throw up…..having a fused neck from C4-C7, the last thing you want to do is throw up…Sitting as still as I can, I waited…..not moving, almost screaming…..but who would hear me, no one is here……still waiting for the pain to subside, can I drive? No, it will pass. Slowly the swirling of pain is slowing down, almost stopping, until it haunts, right in the back of my head……right where the atrophy is sitting on my cerebellum….. I look at the clock, although it seemed as if hours had passed, only minutes until I am back to my normal, my normal….
All the symptoms and illnesses that I have started 7/13/2012, when I stopped taking birth control pills, I started with pain all over for no reason. After numerous trips to the doctor and blood tests for everything they could think of I was sent to numerous different specialty doctors to help me. One of the first trips was for an MRI of my neck which resulted in a fusion of C5-6-7, another visit ruled out Rheumatoid arthritis but gave me fibromyalgia and osteoarthritis, after returning to work from surgery I had skin cancer on my chest that had to be removed surgically, I was fired shortly after from Oaklawn, I had been their senior accountant for 6 years.
Since I was still having pain in my back I was referred to the pain clinic to help manage the pain. I did this until it no longer helped with the pain. My hands were both aching and swollen that a trip for a nerve conduction and electromyographic study found that I had carpal tunnel in both hands but because I get keloid scars I cannot have surgery.
I found another job after drawing unemployment for a few months. I worked for a company that went out of business in a year but was able to go to work for the CPA that I met at that job in a remote office, by myself. At first it was great but as soon as we moved to a different location, the staff was now 4 people and the stress was more that I could handle, I found a local job doing accounts receivable, should have been an easy job but after 4 months my neck had me in so much pain that I had an MRI done only to find out that it had collapsed, I needed to have another surgery and then after returning to work I was fired for failure to meet employer’s standards, they said everything that I touched was wrong and I did not know what I was doing.
Lucky me I found another remote job as a software consultant, while working here I had massive pain in my back that turned out to be cysts, I took a 2 week leave, when I came back I was written up for poor work quality and 3 weeks later I was fired from this position also for failure to meet the employer’s standards, not knowing accounting procedures, and not managing my time.
After I was fired this time I realized that I was no longer going to be able to work and applied for disability. The reason I determined this was because I was having difficulty sitting at my desk working, I have severe back and neck pain, my legs fall asleep unless I change positions frequently, my hands are in constant pain while trying to type and my hands and arms start tingling within a few minutes of having my arms extended out. My brain isn’t hitting on all cylinders any more, I have been an accountant for 35 years, now I have been fired from 2 jobs within a 6-month period because I don’t know what I’m doing.
The pain that I experience every day and what it does to my ability to think, concentrate, and focus along with the medications that I take to keep the pain tolerable has made it where I cannot think straight, stay focused, concentrate, nor sit or stand for more than a few minutes at a time, even walking straight has become a challenge for me. I can just scratch my leg and my arms and hand are tingling and my leg feels like is has water running down it.
Recently I started having brain pains in the back of my head, per my husband I am walking sideways and running into walls, I also stumble while walking. After going to my primary doctor, I was examined my an APRN who checked my walking, turning and walking again and leg strength. After consulting my PCP, MRI’s were ordered for my lumbar, cervical and brain. With the results of these MRI’s I was diagnosed with a collection of pressure-related atrophy on the left posterior fossa centered on the left cerebellum, an arachnoid cyst. I was referred to a Neurosurgeon and a Neurologist, the surgeon confirmed that I had an arachnoid cyst and said to let him know if the symptoms worsened and continue to see pain management, the Neurologist prescribed a medication to help with the headaches, he also checked my walking and strength and confirmed the gait disturbance and loss of strength, and then he ordered an MRI of Thoracic with contrast.
The medications that I take cause me to have poor memory retention and make it extremely difficult to complete tasks on my own. I forget mid sentence what I was trying to do or say. I have started slurring my words and not making sense recently, not sure if that is because of the medications or just another symptom. I get extremely dizzy walking around, I have a hard time standing on my own without leaning or holding on to something. I cannot sit in a regular chair with my legs hanging over an edge of a chair, my legs will fall asleep within a few minutes. I cannot crouch down or lean over and pick up things off of the floor without assistance getting back up. I have a weakened back, legs and my hands are in terrible shape between the arthritis and carpal tunnel, they are not strong enough to pull me up. Since all of this started in 2012 I have gained 60 pounds, my PCP and I tried prescription diet pills, I took them for a couple of months, but they were not helping much and were very expensive.
My usual sleep pattern is 9-10 hours at night and a 1-2 hour nap every day, sometimes, if I wake up in pain, a bad pain day, I get up and take meds, turn on heating pad in my recliner and either go back to sleep or stay in the recliner on the heat for an hour or so. There is always a pain day when we are having bad weather, other than that there is no real reason for the pain days, they just happen when they do. Even on a normal day I have roughly 2-hour spans for accomplishing anything before I have to lay down or recline I should say. My back pain makes it extremely painful to lay down. It can take me up at least 20 minutes every night to get into a comfortable position using pillows to prop my neck up laying on my right side before I can go to sleep. My neck always feels like it is resting on a pin, it gets weak throughout the day, by around 3 in the afternoon I am ready to rest my head and will fall asleep almost immediately after getting comfortable in my recliner laying on a heating pad.
My only hope is that I can find the right combination of medications to keep my pain from completely consuming my life and to always look forward to a pain free day. My doctors and I will continue to monitor the progression of the Osteoarthritis, Fibromyalgia and Degenerative Disc Disease as there is no way to stop the progression only ways to maintain the pain, as for the brain cyst, we will keep watching it in hopes that is stays in the spot it is and doesn’t grow any bigger than it is so I am still able to get around for as long as I can.