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In early 2001, we moved to upstate, NY. There was a long delay in my treatment due to the move. I obviously had to change doctors, but it's not as easy as it sounds. I had to see primary care first, then get a referral to a Rheumatologist. After about 2 months, I finally saw one and was immediately referred to a Nephrologist and put back on chemotherapy once a month. When my numbers showed no improvement, the chemo was done every 3 weeks, and I was on 40 to 60mg of prednisone a day. Our first year in NY, I was hospitalized several times due to various things. Needing pulse therapy for the kidney function, strange pains in my legs and abdomen that made it impossible to walk...these pains weren't figured out until around 2003, more on that later though.
It seemed like I was always getting tested and scanned for something, but nothing was ever found. It was very frustrating to feel so much pain and not see anything causing it. You really start to wonder if you're causing it yourself, and you wonder if the docs even believe you anymore.
Then the headaches started. Tylenol didn't cut it, Percocet and other strong pain killers didn't do a thing for them...they were BAD. I would throw up, go blind at times, and the pain seemed worse depending on my position, sitting or standing. After several months of this, I went in for a regularly scheduled eye exam, just a yearly thing. They stared for a while, called other docs into the room, took pics of the back of my eye...then I heard them throwing around the word tumor...TUMOR?! Turns out it wasn't a tumor, it was a condition called pseudotumor cerebri. Basically the pressure in my spinal fluid was way too high causing the headaches and pushing on my optic nerve. I was scheduled for my first spinal tap. Ugh...I'm not going to lie to you, they STINK!!!!! I have had 6 of them, and they will have to club me and knock me out to get another one. See, I'm a big girl, so it wasn't figured out that the problem was the needle in the standard spinal tap kit wasn't long enough until about an hour and a half of stabbing. I also had a doc doing the first one who was very confident but didn't have the skill to back it up. There were several other docs asking if she wanted them to try and her response was "I know what I'm doing!" Patients...if you're ever in this position, DEMAND that someone else try. You're the one feeling that needle! |
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At first, I was put on a medication to lower the pressure in the spinal fluid...I can't seem to recall what this med was called, but I do remember that it made soda taste like it had been sitting in the sun after someone had peed in it. YECK! This med didn't work, so after more spinal taps to relieve pressure, they decided that I needed a lumboperitoneal shunt. It's a tube that is directly into my spine and drains excess fluid into my abdomen. Worked great for about 6 months, then I got the headaches again, and noticed a large lump on the side where the shunt tube was. The docs totally blew off the lump, but wanted x rays and some nuclear med tests to see how the shunt was draining. Turns out it was cracked and kinked and all the fluid was collecting in a baseball sized LUMP on my side. I had to have my second back surgery to correct it in summer of 2003, and it's been working fine so far.
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