No one can tell me exactly when he showed up or how long he’s been there, this unwanted guest in my head- a rock, a tumor, or as we sometimes refer to him in more endearing terms “Toomy”. But here is the story of how they found him…
In May 2012, I started experiencing random headaches which would come on very quickly and often last only a few seconds. It could be first thing when I woke up, while running errands with the girls, or other times it was a completely random occurrence. Head position, activity, weather, stress or any other external stimulus could not be found to trigger these headaches. They normally started in the back of my head (at the base of my neck) then quickly rotated around to my sinuses. At first I didn’t think anything of it, but then they started to happen more regularly (multiple times a week instead of just once or twice). The only other strange symptom I was having was I could no longer lay on my stomach with my hands propped on my chin without feeling incredibly nauseous and aware a headache was coming. Now the headaches were weird, but as far as the stomach thing -maybe that was just because I am getting older and less flexible (that’s what I told myself anyways )
Eventually, I informed my primary care doctor at Gainesville Family Practice as to what was going on. I also noticed that sometimes I felt as if there was fluid in my ears. The primary care doctor treated me for allergies, and then when that didn’t help referred me to an ENT specialist, Dr. Lim. The ENT doctor was very thorough and concerned because I had symptoms like a sinus infection but there was no sign of fluid in my ears or in my sinuses. After an X-ray of my sinus cavity, he concluded that my sinuses were healthy and the source must be from somewhere else. He encouraged me to keep looking and to keep him updated. I think it was the middle of June by now.
Right before visiting Dr. Lim, I had been rubbing my neck during a headache and realized that my neck seemed to be a trigger point for the headaches. There was lots of tension in my neck, but then again I do have 4 children. Through further self diagnosis (every mom and her doctor instincts) I noticed that if added heat to my neck the headaches intensified, but cold took them away. After this discovery Rob and I started discussing whether or not I had done something to my neck. During these discussions, we recalled a time on our trip to Alabama in May when, in pure blonde fashion, I slammed the trunk of the mini van on my head while unloading something at a rest area. We thought nothing of this at the time because of course I got a headache – but we proceeded to have a very nice vacation. This recent discovery redirected our medical journey to include a trip to Prince William Orthopaedics and Dr. Jossan.
I owe alot to Dr. Jossan. He is a very confident, very thorough doctor who considered all the angles, symptoms, and battled insurance for me in order to research the neck as a source of these headaches.
My insurance required that I first go through physical therapy. At first physical therapy seemed to help, who doesn’t like a good back massage, stretching exercises, etc. But the headaches always came back, and after my 4th therapy session came back with a vengeance.
It was Labor Day weekend and 48 hours after my therapy session, I woke up with the worst headache I’d had to this point- nauseous and stayed in bed all day. Nothing made the pain better. The next day it was almost as if I was hung over and could feel the looming headache. That night while watching t.v. I experienced my first problems with my vision. My eyes just weren’t focusing right.
I called Dr. Jossan first thing Tuesday morning, told him I was not returning to therapy, and that we had to do something different. After a tear-filled visit with him in his office, he battled insurance again for me and got an MRI of my neck approved and referred me to a neurologist (he was not convinced the neck would explain it all). The MRI showed 2 herniated/bulging disks in my neck. Good news, there was a cause! I wasn’t just crazy. Knowing how much pain I had been in and for how long, Dr. Jossan sent me striaght downstairs to the spine care specialist, Dr. Saladin who within less than 48 hours got me started on steroid injections for my neck. This office moved faster than any office I’ve ever experienced, genuinely cared about my pain, and provided me with almost immediate relief. It was a much awaited joy and blessing from God! After over 4 months of feeling like I must just be losing my mind, we had something with which to work.
This is where the story should end, but as you and I both know it doesn’t. The vision issues continued from Labor Day and seemed to be getting worse. My eyes were crossing on a very regular basis in the evenings, double vision is just what I became to expect about 9 pm. I was also still experiencing some sensations of fluid in my right ear. This is where, thanks to Dr. Jossan’s earlier referral, Dr. Kroeger picked up the search. Even after the diagnosis of the disks in my neck, Dr. Kroeger was convinced that there was still something else going on… perhaps hitting my head in May damaged something in the brain that would explain the vision/hearing issues.
I owe alot to Dr. Kroeger. I almost cried this morning just thinking about her. (there will be more posts about her in the future, as she continues to be a support with phone calls checking in on me, and allowing my oldest daughter to ask her questions- Dr. Kroeger truly has been an answer to prayer!) She fought for me when I didn’t know there was something to fight. She was patient and understanding of my strange explanations of things, and didn’t make me feel like I was going crazy. Dr. Kroeger genuinely showed concern, and was a complete advocate for me when I didn’t even know I needed one. She ordered an MRI of my head (which after the MRI of my neck with conclusive results) got denied by my insurance. Instead of letting this stick, she argued with insurance and got a CT scan of my head approved for Oct. 15. The appointment was at 8 am and by 10:30 am we received the phone call from her office. The unwanted guest has been identified…
After more than 6 months of medical appointments, 5 different doctors, and multiple medications and tests, the unwanted guest was identified. I have a brain tumor. I’m sure “Toomy” has been there long before May, but if I had not slammed the car on my head we may not have found him before real damage had been done. The last six months have been frustrating, painful, and almost convinced me I was crazy, but today we are praising God for slamming the car door on my head, for placing doctors in my path who are thorough and don’t give up on their patients, and for showing us the Unwanted Guest, so that we can start the process of eviction… God is good!
Stay tuned for the eviction process… more doctors, more tears, but also so many more blessings… Permanent eviction scheduled for Nov. 9!
Update: If you’re interested in what the first 24 hours after finding the tumor was like in more detail, please read the post “The First 24 Hours.“