I thought that I would give an update on my journey toward seeing if I have Pseudo Tumor Cerebri.
Quick back story....I was one of the lucky ones who, after having the Mirena inserted, I lost most of my vision in my right eye (within the first couple of months). I went from great vision to legally blind in that eye (20/80 vision) virtually overnight. Anyway, after seeing the connection between Mirena and Pseudo Tumor Cerebri, I thought that I'd better make sure that wasn't something that I was dealing with (since it can back you go permanently blind if not treated).
After researching it, it seemed like I needed to see a specialist called a Neuro-Opthamologist to accurately diagnose it. I also read that it was diagnosed via MRI and spinal tap results (Quick description: Pseudo Tumor Cerebri is when there is too much cerebral spinal fluid in your head, and it can crush the optic nerve from behind, causing blindness). I wasn't looking forward to a lumbar puncture, but I was willing to go there to find out.
After contacting a neuro-opthamologist, I learned that I had to have my Opthamologist send my information to him to be "accepted". I set up an appointment with her so that I could explain what I was trying to do.
At my Opthamology appointment, I was told that she firmly believed that I would be wasting my time getting checked for this...for two reasons: Number one, I was showing no signs of Optic Neuritis (a swelling of the optic nerve), and I was showing no signs of Papilledema (not sure if that spelling is correct). That is, I thnk, when there are signs of too much space behind the eye, etc. She said that, if a person has PTC, they almost always show signs in one of those two areas.
So....that is as far as I got. In her opinion, I don't show any signs of having it, and she says that, with the extent of vision loss that I experienced, I would if that is what caused it.
I guess I am at the point where I just have to accept the blindness in that eye and move on with my life and making the adjustments necessary to live with it. I'm sick of the glasses--mainly because every time I take them off, I literally become nauseous due to the extreme difference between both eyes--they start fighting one another, and it makes me dizzy and sick to my stomach. I don't' have the money for Lasik surgery (nor do I know if I even qualify for it....I don't see the point in doing to the consultation to see if I qualify when I know that I can't even pay for it. So, on Wednesday, I am going to be fitted for contact lenses so that I have something in my eyes all day to keep my eyes "equal". Hopefully, that will help....and I'm hoping that--one day--I will be able to do the Lasik surgery on that right eye so that I can see again from it. Fingers crossed.
As frustrating as this is, I am at 17 months post removal, and--overall--I am doing so much better that I am beyond grateful. I think about where I was a year ago, and it still makes me cringe. I remember praying that it wasn't going to be my last Christmas with my family and wondering how I was going to have that conversation with my husband....what we were going to do to plan for the worst-case scenario of mom no longer being in the picture (because I would either be gone or so mentally gone that I couldn't function). Remembering that, I will accept the blindness in that eye as something frustrating and unfair...but something as as "hiccup" in my otherwise much healthier and happier life. What else can you do, right? Dust yourself off and move forward....we know that all too well, don't we?
I hope that explains my latest process clearly enough. I am still praying for all of you, and keep fighting.....I can tell you that I still feel myself getting better and better as each month passes. It's been hard (I've never taken so many supplements in my life! Ha ha), and it has been frustrating, but it is moving in the right direction....and I choose to focus on that.
My love to you all.
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