Idiopathic Intra-Whatta??
In October 2016 I was diagnosed with a new medical condition.
It is called Idiopathic Intracranial Hypertension. Basically it means that my body makes too much spinal fluid, and it can't drain it properly, or fast enough. It mimics many symptoms of a brain tumor, without actually having a brain tumor. (Crazy, right?)
To get diagnosed I had to have a spinal tap. Not fun. Well, let me back up. First I had to have an MRI, because with my Neurofibromatosis I had to have an MRI, because I could have actually had a brain tumor. When my doctor saw that everything was stable, she took in all of my symptoms, and ordered the spinal tap. It was definitely one of the scariest tests I've had done. They laid my down on a table, belly down and took an X-ray of my spine. After doing that they marked the spot they would stick the needle into. They numbed me with some sort of numbing agent, and then in went the needle, let me tell you that was painful. After sticking the needle in they had to put the tube in, so that they could read my pressure, and drain some of the fluid.
They immediately saw my pressure was high, and had to drain a ton of fluid. The whole procedure did not take too long, but it was extremely uncomfortable, and scary for me.
After draining fluid it is extremely important to be laying down for the rest of they day, so they sent me to a post-op room to lay down before going home. When I go home it was more laying down, and resting. My back was very sore for the next few days.
When I was in post-op my neurologist called and confirmed the diagnosis. I had two immediate feelings. I was relived, because I had gotten answers to why I was feeling so crappy for a few months. The other feeling was complete, and utter fear of what was to come from this.
The first step was to put me on a medication called Diamox, which is a very potent drug. Unfortunately, I had an allergic reaction to it, and had to stop taking it. This allergic reaction confirmed the original thought, that I will not be able to take most of the medication they would usually prescribe for this condition. So, because of that, I had to go on a less effective medication. I've been on it for about 2 months, and to be honest, it's not really doing much for me.
The future is unknown for me. I have no idea where this condition will lead. It is possible I will have to get some sort of surgery done, and that is super scary to me, but for know I'm trusting God to carry me through this. I am relying on people that I care about to not give up on me. I rest on the hard days, and do whatever I can to help myself. My biggest job is to take care of myself, and it's not easy. I deal with a lot of guilt, and shame, but sometimes you do what you gotta do.
So basically the past few years, I have been dealing with chronic pain, and it has intensified over the past couple months. I do plan on writing a blog post about living with chronic pain soon. So, keep your eyes peeled for that.
Much love, and God bless.
-Morgan
It is called Idiopathic Intracranial Hypertension. Basically it means that my body makes too much spinal fluid, and it can't drain it properly, or fast enough. It mimics many symptoms of a brain tumor, without actually having a brain tumor. (Crazy, right?)
To get diagnosed I had to have a spinal tap. Not fun. Well, let me back up. First I had to have an MRI, because with my Neurofibromatosis I had to have an MRI, because I could have actually had a brain tumor. When my doctor saw that everything was stable, she took in all of my symptoms, and ordered the spinal tap. It was definitely one of the scariest tests I've had done. They laid my down on a table, belly down and took an X-ray of my spine. After doing that they marked the spot they would stick the needle into. They numbed me with some sort of numbing agent, and then in went the needle, let me tell you that was painful. After sticking the needle in they had to put the tube in, so that they could read my pressure, and drain some of the fluid.
They immediately saw my pressure was high, and had to drain a ton of fluid. The whole procedure did not take too long, but it was extremely uncomfortable, and scary for me.
After draining fluid it is extremely important to be laying down for the rest of they day, so they sent me to a post-op room to lay down before going home. When I go home it was more laying down, and resting. My back was very sore for the next few days.
When I was in post-op my neurologist called and confirmed the diagnosis. I had two immediate feelings. I was relived, because I had gotten answers to why I was feeling so crappy for a few months. The other feeling was complete, and utter fear of what was to come from this.
The first step was to put me on a medication called Diamox, which is a very potent drug. Unfortunately, I had an allergic reaction to it, and had to stop taking it. This allergic reaction confirmed the original thought, that I will not be able to take most of the medication they would usually prescribe for this condition. So, because of that, I had to go on a less effective medication. I've been on it for about 2 months, and to be honest, it's not really doing much for me.
The future is unknown for me. I have no idea where this condition will lead. It is possible I will have to get some sort of surgery done, and that is super scary to me, but for know I'm trusting God to carry me through this. I am relying on people that I care about to not give up on me. I rest on the hard days, and do whatever I can to help myself. My biggest job is to take care of myself, and it's not easy. I deal with a lot of guilt, and shame, but sometimes you do what you gotta do.
So basically the past few years, I have been dealing with chronic pain, and it has intensified over the past couple months. I do plan on writing a blog post about living with chronic pain soon. So, keep your eyes peeled for that.
Much love, and God bless.
-Morgan
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