One of my worst fears is getting cancer and not being able to care for my son the way I need to. I know I have family that would help, but it is not the same. This week I came as close to my worst fear as I could without it actually being my worst fear.
For the past 2 weeks I have been dealing with neck pain, blinding head aches, flashes of light in my vision, dizziness, and confusion. On Monday I finally decided to go to Urgent Care and have it checked out. I chose Urgent Care because it takes weeks to get in to see my primary care Dr. I got there about 8am and was seen by the Dr. After talking to the Dr and her doing a few simple test, checking my reflexes, pushing around my neck, and checking my eyes she sat down to talk to me. She said it sounds just like a migraine but she was not comfortable treating it as such. Simply for the reasons that my vision got blurry when she checked my eyes and my neck did not hurt when she pushed on it but I was complaining about neck pain. So she told me to go straight to the ER. I was not comfortable with that and had every intention on going home, but the next thing I knew was that I was walking into the ER.
I had to wait about an hour before a Dr came into my room, but it seemed that what I was telling them was a bit of a cause for concern. Right after the Dr walked out of the room I was getting blood drawn. That was not fun. My veins like to collapse now so they had to stick me 5 times before they found a vein that would hold. As soon as the blood draw was done I was being wheeled off to get a CT scan. I had never had one done before so I was not sure what to expect at all. Those machines are so loud. The noise and the spinning was making my head hurt so bad I just wanted the test to be over as soon as it started. Within 20 minutes of being back in my room the Dr was back with another Dr and they started prepping me for a lumbar puncture. I wanted to chicken out of the lumbar puncture so bad, but I have had an epidural and a spinal done for both of my c-sections so I didn't think this would be much different. It was completely different. I had to lay in the fetal position and arch my back, not easy when you are over weight with big boobs. I felt the needle go in with the numbing medication, that part was easy. After a minute or so they stick the bigger needle in. I feel pressure on my spin and a little pain on my left hip but the needle wouldn't get into place. So they pulled the needle out and tried again. It still wasn't working. They tried once or twice more but it finally took on the last time. I knew they hit where they wanted to because the pressure got a bit stronger. I had to lay in the arched back fetal position for about 5 minutes. There was so much fluid around my spine. The Dr. said he drained more fluid from me than he would normally be comfortable with but I had so much fluid around my spine.
After the lumbar puncture the pressure in my head eased up so much it felt so amazing! For the first time in 2 weeks it did not feel like my head was going to explode. The Dr told me that I had pseudotumor cerebri. All I heard was the word tumor. I had no clue what he meant or what pseudotumor cerebri was, but he said it happens more young women around my age. As soon as I got home I handed my dad the paperwork they sent me home with and we started looking up my condition and the medication they prescribed me. Pseudotumor Cerebri could basically be broken down as being every symptom of a brain tumor without there actually being a brain tumor. (link to follow)
Psuedotumor Cerebri
Yesterday I was finally able to pick up the prescription for the pharmacy, Diamox, and I was so happy. Finally something besides pain killers to help me out. I had gotten it too late in the day to get both doses in so I took one then waited until I woke up this morning to take the second dose. About 2 hours after taking my dose this morning I started to notice that my finger tips felt really weird, almost like a tingle. So After dropping my son off at school I came home and looked up side effects for my type of medication. Right there at the top of the page I see where it lists the serious side effects and that if you experience any of them to stop taking the medication immediately and contact your Dr. Well in that list I saw "tingling or tremors of hands and feet" so I called and left a voicemail for the nurses at my Dr and headed out to my follow up appointment with my eye doctor. As I am waiting to see my Optometrist my primary care Drs office calls back. I explain what is going on and tell them I have a follow up with them the following day. They tell me to stop taking the medication and if the symptoms get worse to go straight to the ER. Thankfully the tingling went away after another 2 hours or so.
Diamox Side Effects
My eye Dr did the follow up and after hearing that I have pseudotumor cerebri he says that when I saw him last week he was suspicion that the pseudotumor cerebri might have been my issue but he was not positive. Now knowing that, yes I do have it, he said my eye issues fit perfectly with the vision problems caused by the disease. He also said the pressure behind my eyes was not enough to cause him any concern but to keep him in the loop with all my upcoming Dr appointments. Tomorrow I have my follow up with my primary Dr and next month I see a neurologist. Lets hope this gets taken care of. It can be treated, but there is no promise that it will never come back.
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