Ok so at the end of part one I was at the Dr office and they made me an appointment for the Neurologist the following day. At this time I was living in Waukon, IA and the neurologist was in Lacrosse, WI about an hours drive and I had never driven to or in Lacrosse. I am from a town of 2500 people and no stop lights to do anything we have to drive to bigger towns but Lacrosse is quite bigger with interstates and all kinds of stuff so I was nervous. I was dating an asshole to put it nicely at the time who knew my vision was off and knew everything I was dealing with and he couldn't be bothered to take me. So off I drove to Lacrosse I went to see the neurologist who said he thought I had Pseudotumor cerebri and I would need an MRI and a spinal tap. The MRI didn't bother me but the spinal tap I told him I was scared so he set up the appointment for a spinal tap with a ultrasound tech so they would know exactly where to place the needle for less pain and no mishaps like hitting a bone. Also set up my appointment for an MRI They were like 2 weeks out so I had 2 weeks of waiting to see what was going on. I also set up appointment with an opthamologist to look into my eyes.
I went to see the eye doctor a week later when I could get in. He looked at my eyes and ordered a bunch of tests and photos of the inside of my eyes and wanted to see the MRI as well. So over the next week I did all the tests and photos and had the MRI and finally the dreaded spinal tap. I was so scared for that in the movies you see really bad pain and everyone i talked to said they had heard it was horrible. So I was very nervous but I have to say I didn't feel anything really just a little discomfort after putting the needle in and extracting the fluid. I would say the annoying part was laying around the next 3 days they recommend staying off your feet and that is right you do get a pretty bad back ache if you sit up too much or walk to much.
I guess I should also mention that while all of this was happening I was trying to figure out how I was going to pay for all of this because I had no insurance and not a great job. While i was having the pictures of my eyes taken that technician was really nice and talking to me and she let me know of a program they had where you could apply to maybe get a discount. And after we were done she took me over to see the lady. So I began the process of filling out all the necessary paperwork and submitting it for review. Hoping I would get a little help with the bills.
It was now time to go back and see neurologist and eye doctor which was same day. The neurologist looked at MRI and spinal tap results and I just kept telling myself I don't wanna know if there is a tumor and I didn't not want him to say that in front of my parents. My mother had been battling her brain tumors and cancer for 9 years at that point and seeing everything she had gone through and how it changed her I had already decided if it was a tumor I was going to do nothing. He told me the spinal tap showed nothing abnormal in my spinal fluid levels and the MRI only showed small areas of extra spinal fluid nothing significant so he didn't know what was causing my issues. He said I would be able to go to the Mayo clinic and they might be able to tell me something more. I was thinking this was all a huge waste of money but I still had to see the eye doctor so off to that appointment. I saw him he looked over everything and said he didn't know what caused it but i definitely had papilledema in my eyes and something caused so much pressure in my head that it actually flattened the backs of my eyeballs. At the time I was seeing him now my eyeballs were just starting to go back rounded so I had little folds in them which was causing my vision issues and should correct itself. He also said to go to Mayo Clinic and see if they could figure anything out.
I called Mayo they told me they would need insurance and copay or for me to put down $1400 cash before I could make an appointment. I did not have that money and my parents also couldn't afford that. I did ask them that since all I needed was to see the doctor there I already had my tests and they were very recent and I was coming from a clinic that is associated with Mayo so its already in there files how much to just see the doctor? $500 down payment is what i was told and if they had to do anything more I would have to pay first before they would do it. I talked with my parents and they agreed to pay it if I wanted to go. Of course I wanted to go I wanted to know what this was how to prevent it. So made the appointment went off to the Mayo clinic paid them the cash and saw the special specialist is what i call her she was an opthamologic neurologist, lol i cant even say that fast. Anyway we went in and saw her she told me everything the 2 others told me and said she had no idea what it was or what caused it. She said they would be able to run a bunch of tests with no guarantee or I could just watch for symptoms and come back.
Well isn't this great I have gone through a ton of tests and went all the way to the Mayo clinic and they tell me no clue. No one knows anything as to what is wrong with me. At this time I am still working but I am still so light headed I have to lean up against the counter to do anything. It gets harder and harder to work. Also this is when the bills start coming in and its thousand and thousands of dollars. I did fill out paperwork for financial help but hadn't heard back from them. I had no idea what I was going to do.....I was also trying to save to move to Holland. I finally received a letter from the financial department of the hospital and they granted me financial help in the amount of the whole thing. I have never been so happy in my life it was all paid for! A huge thing I didn't have to worry about.
That's all for this one I think in the next one I will continue with my job, still not getting better, the nastiest boss ever and my personal life happenings so stay tuned.......
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