It's been so long since I posted and I decided it's time to update all of you that follow my blog! I had two tests on my bladder August 10th and I met with my urologist in Rochester, Dr. Douglas Husmann, the next day. These were not tests I was looking forward to! I was surprisingly much more nervous to have these two tests performed than I was to have major back surgery! I suppose you can chalk that up to all the time I had to mentally prepare myself for a spinal fusion, and the lack of time I had to wrap my head around the idea that there might be something wrong with my bladder.
The first test was a VCUG, or a urinary x-ray. Going into this test my stomach was in knots and I thought I would pee myself from nerves (no pun intended). The technician who did my test was more than awesome! He had a great attitude and was sorta goofy but it helped lighten the mood. The first thing they did was get x-rays of my bladder and kidneys, which by now x-rays are something of regular occurrence in my life so that was the easiest part of the day! After that they took me into a small room and put me on a weird table and we waited for what seemed like hours for the female catheter team to come. Once they were there technician and his intern left the room. The nurse Jess stayed to let me squeeze her fingers!
Just a warning, but I'm not going to hold back on anything in the next few paragraphs so if you are extremely squeamish I would advise you to hire someone else to read the rest for you and then have them tell you what happened in less grotesque terms.
The nurse had to tell me several times to relax my legs, but come on! If there was a stranger with a catheter telling you to relax I doubt you would!! I didn't have to hold Jess's hand but I did let out a few whimpers. Having a catheter in is the weirdest feeling! I suppose having any foreign object in your body is weird feeling though. Once that was in they drained my bladder and let the guys come back into the room. The technician was shocked I wasn't crying at this point (apparently most women cry when catheters are inserted?) and decided to congratulate me by getting down on his knees and making rock on signs and calling me a 'superstar'.
After this the test went pretty well! They filled my bladder as full as it could go with sterile water and dye. I was supposed to tell them when I got the urge to pee like I've never had to pee before. Or in the technician's words, "when it was time to stop the bus and pee in the corn field". He said he would probably push me even after I said it a couple times, just because they were watching my bladder fill with water on a monitor so he could see when it was actually as full as it could possibly be.
I was trying to be brave and they decided on their own they would stop filling me up. Apparently my toes were curled and one of my legs was twitching so they knew I was pretty uncomfortable. They then took out the catheter, but I had to hold all the water and dye in me at the same time. The table was then turned upright so I was standing and they put a weird bag in between my legs. Scott, the technician, compared it to a female urinal. I was then told to pee, but let them know when I started and when I ended and they took x-rays all the while.
Scott also told me that 50% of people miss the bag when they start going and he said to just keep going if I missed. A sheet was laid on the ground, and all it was was water and dye anyways. I didn't miss, and once that was done I was pretty much done with that test. What was supposed to take about an hour and a half only took me about 40 minutes. Keep in mind I was in the adult urology department, not the childrens. So I was feeling pretty good at this moment. Scott told me that they usually waited at least ten minutes for most women to start peeing into the bag. Not because anything is wrong with them physically but because women are told a) they can't pee while standing b) they shouldn't pee in front of others and c) they should never pee in front of men! I was so darn uncomfortable that I really didn't care about any of the above!
Since the first test went so swimmingly I was feeling great going into the second test (which was a urodynamic study)! I was very let down when it got going though. During this test I was to sit in a chair that had the middle missing, and I had two catheters put in. One in my urethra and one that could either go in my butt or my baby making hole. Needless to say it was put in the second option. After that the technician attached electrodes to my butt (to measure the pelvic muscle activity). The catheter going to my bladder was bigger than the one during the VCUG, so it was very uncomfortable to say the least. At one point it even fell out and had to be put in a little more forcefully. This hurt very badly and everyone in the room was aware that I wasn't too happy. Once it was in again, she filled my bladder with water and I was told to tell her when 1) I had the first sensation that I had to urinate 2) when I had to pee so bad I would stop watching TV to go to the bathroom 3) when I had to pee very bad 4) when I had to pee so bad that I would stop at a gas station that I was next to even if I was only 3 blocks from home. When I would stop to tell her these she would ask me to cough at certain times and squeeze my butt muscles as hard as I could.
This all went well until I was done and had to try to pee through the catheter. This hurt so bad she took it out and let me pee on my own, which hurt even then. On the bright side though, I got to watch TV while she did the test! After this I was on my way home to relax! Or at least try to relax since I still had to wait for the results...
The next day we were up bright and early since my appointment was at 8 and we had to drive there! Once we got there, we didn't wait very long at all before we were called back. I was a bundle of nerves and I think my parents caught onto that very quickly. Unfortunately they did discover I have some nerve damage when they did the second test. To try to make this as easy to understand as possible, here's what I understood: The nerves in my brain are kinda like a stoplight. My bladder has sphincters and their job is to hold my pee inside and keep it from coming out when it's no supposed to. There are nerves that go from my spinal cord to my bladder, from my spinal cord to the sphincters, and there are nerves that go from my bladder to the sphincters.
What the machine picked up is that when I coughed the "stoplight" in my brain flicked from red to green, and it should have stayed red the whole time. What this means is there is some damage. I really can't remember exactly what the doctor said but I think he said the damage is on the nerves that go from the sphincters to my spinal cord. I'm not positive on this, but I know for sure there is noticeable damage. Thankfully, the damage isn't affecting any of my functioning so if I hadn't had the tests I never would have know about the damage. Unfortunately, if my spine keeps rubbing up against my spinal cord this damage could get worse. The urologist said that having scoliosis surgery could stabilize the damage which is a good thing! Either way if I have surgery in December, I have to go back in a year for the same two bladder tests, and again in three years to have another ultrasound on my kidney where they found the cysts.
I'm hoping that I will actually be able to have surgery this December on the 29th. I'll find out for sure on the 28th when I go up for another MRI and meet with the neurologist and orthopedic surgeon. It's amazing how all of these doctors have been communicating together just to make sure I'm going to be healthy and they're doing the best thing possible for me. Being in this limbo with surgery in the future, I'm not sure how to prepare myself. I was so ready to have it last time that I don't want to be crushed if it's canceled again in December but I'm praying for the best! I know God has a plan somewhere for me in this mess!
