Tumor.Diabetes Insipidus.Chiari.Pseudomeningocele

Tumor.Diabetes Insipidus.Chiari.Pseudomeningocele

From Natea Stanford

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My 1st surgery was a brain tumor removed from my pituitary gland February 3, 2016. The tumor caused me to become partially blind in my right eye, I now have hypothyroidism, a goiter and I developed diabetes insipidus. Diabetes insipidus is also a rare chronic illness. When you mention diabetes people automatically assume you mean sugar or type 1 and type 2 it's completely different. When I woke up from surgery I was thirsty like super crazy thirsty. I've been that way every since then. I can drink up to 20 liters of water/fluids a day and pass just as much urine. Imagine going to the bathroom sometimes every 10, 15, 20, 30 minutes during the day. Not to mention all night long too!- This has also put a tremendous strain on my mental health. I feel like I'm being tortured. I don't even want to leave my house I'm turning into an agoraphobic. The 2nd surgery is called a Chiari Malformation I had this surgery on November 8, 2017.  Most people aren't familiar with this condition either and neither was I. What happens is your brain slides down into the cavity where your spinal cord is. This causes so many symptoms including a headache that never really goes away. Since this last surgery I have not recovered well at all. I had a complication called an enlarging Pseudomeningocele which is spinal fluid leaking from the brain where the incision was for the Chiari decompression. I did have a spinal tap 6 months ago to relieve some of the pain and pressure, but I still suffer from terrible headaches. Plus all these symptoms: dizzy spells several times a day, fainting spells/blackouts, sore neck and back, blurred and double vision off an on, nausea, confusion, forgetting things while I'm talking about them, forgetting what I was doing, forgetting basic words at times its terrible, forgetting peoples names that I've known for years, forgetting important things, lets just say my memory is not up to par. My eyes be so strained from not sleeping from the insomnia that it also causes. Sometimes I cant even swallow my own saliva and there several other symptoms. I feel like I should have never got that surgery because I feel worse. Terrible! My whole left side be feeling like its suspended even when I'm laying down. I cant take to much more of this. I've literally had a headache since 2014 now that I really think about it. Imagine watching your own face change because a huge tumor is pushing on your optic nerve. My eye was literally bulging out. I kept saying I cant miss work. Now look at me I'm not built for manual labor  which I'm very much used to. Not to happy to say depression and isolation have stepped in, in its place. 

I'm a single mother and I haven't worked since my last surgery. I spent all my savings staying at home with my kids because I still don't feel well enough to work like I used too. I've worked my whole life and have always been independent, now I'm afraid I won't be able to get a decent job with all these medical problems. I'm mentally and physically in pain all the time. I just want to raise enough money so I can keep up with my doctors appointments, my court dates for the disability hearings, and moving expenses so I can move and be closer to my mother. I don't expect anything from my estranged family I'm just hoping they take the time out to read this. 

At this point I just want a secure home so I can continue to raise my daughter until she becomes a woman. I could also continue to work on myself as an Artist maybe with a small basement studio for me to embrace my many artistic talents! That's just a dream of mines since all I've done is work all the time.  I also hope this spreads awareness about how these rare conditions affect peoples everyday lives. 

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