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Chiari Malformation type1, Addison's Disease, Steroid-induced diabetes
Brain & Nervous System | Last Active: Dec 24, 2016 | Replies (14)Comment receiving replies
I have had many symptoms of chiari most of my life but just became aware of it in just the last few months of what was causing many of my issues. I had an mri that showed a 10mm "beak like" and a 6mm. I waited for three months to see a neurologist who was rude and dismissive. Now I am in the process of another referral to hopefully someone that has seen and dealt with this before. I too have become a different woman than I used to be. I used to have my grandson for week long stays, now I can barely handle a weekend. I miss a lot of work. I am explosive angry sometimes and have little to no patience anymore. I have lost friends over it and family is too distant to really care. I have terrible memory now, headaches, back aches, my whole body hurts sometimes. Incontinence, irritable bowel, my heart, tingling in my fingers, numbness in my toes. Gagging when I try to swallow to the point that I have to "work" the fluid down. Ears ringing,dizziness. I hate what it is doing but surgery scares me I think even more. Depression is part of this crazy chiari train we are on. I keep telling myself I am worth more this pain, I am not going to let it break me. Good luck. It really is nice to have someone to talk to.
Replies to "I have had many symptoms of chiari most of my life but just became aware of..."
I honestly don't know about Addison's, but I do know about the pain you are going threw. I went to a surgeon, and he helped me a great deal. I only made one mistake and I should have listened to my wife, and that was getting a shunt put in,, then two weeks later I had pain, and lots of it, some of the symptoms made me want to crawl in a ball and give up. The hospitals thought the same thing, (Pain Medicine) which I turned down each and every time I went. Then of course two weeks later I was admitted in Pittsburgh for two weeks and they couldn't find anything wrong and they sent me home, 3 days at home was very bad and I was admitted back to Pitts where I had to get the shunt removed cause it got infected. (So I won't go threw that again) The doctor put me on water pills called, {Acetazolamide}. Its working with the spinal fluid pressure, so I don't have the headaches anymore like I used to.
I still have the numbness on my left side, and left chest pain, but the ruled out my heart and they will not check if I have a ripped muscle. Please don't give up, you can always contact me, and I will help you as much as I can, also if you want my doctors name and address, ask and I will gladly give you his name.
Hang in there, don't give up, there is help....and I will try my best to help you.
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Everything that you said is true all the symptoms except even with Addison's it makes me even more tired because I have to take steroids to just have energy to get through. This horrible the pain is horrible and I don't think anybody understands my endocrinologist but he knows anything really about either one to be honest my rheumatologist she is excellent and she's trying to find me a surgeon that will actually work on me because my tonsils are at 9.5 and it's flattening my spinal cord up It is pushing against myspinal cord my C5 and C6 it which makes my hands have no feeling but I still have tremors, I have lumps are I always have pain I feel like something is pulling down my shoulders at all times I wake up with headaches ringing in my ears I cannot get rid of..life is miserable living like this.. some days I think it would be better to just to end it I don't want my kids to see me go crazy I'm totally losing my memory I had blurred vision like it's horrible very horrible and I hate it I cry all the time I'm on medication for depression but it's not helping I see you psychiatrist I don't think it's helping.. I don't feel like anybody that I go to understand what it is but honestly don't know but emergency room where they seem to think that I'm just seeking pain medicine or something but I'm not I'm really hurt and Im even Dx with chronic pain syndrome chronic pain also but I don't take any . I don't want medication it's gonna mess with my head right now my head is so messed with it I don't even know what to do