Chiari Malformation/unequal pupils/surgery

Posted , 4 users are following.

So, recently I got diagnosed with chairi 1 after looking for a tumor/anyeursm and I’m having surgery in a week. I’m terrified beyond measures but I’m curious about some things. Basically, in high school I had migraines, went away. But Now I’m 20  the past 2 years I’ve been a miserable person and I’m not who I use to be. Ear pain, sharp sounds I had tubes put in, got worse. Breathing issues, had deviated septum surgery, still bad. Bladder spasms/control issues, had surgery, still bad. Tachycardia out of no where. Severe nausea at least 3x a week. Personality changes, my memory is SO bad the past year, My legs feel so weak, I’m always exhausted, my eyes don’t focus (I have Duane Syndrome in my L eye) my legs and hands fall asleep easily. Just so many things, but I was curious because I’ve had unequal pupils for 10 months, responsive to light, and fluncuate, my syndrome in my eye doesn’t cause this and they say they don’t think chairi is causing this? Has anyone with Chiari experienced unequal pupils too? Also, I keep panicking and really need encouragement that I’m makig the right choice. I am only 20 and want a wonderful quality of life, to have a family, workout, finish nursing school, but I’m so scared and I’m tired of dealing with doctors, but now we’ve finally found the true cause and I just need hope/courage. 

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6 Replies

  • Posted

    Hi kelsey,where are you having surgery and when,which surgeon is doing the op and what procedure is he going to do,take care sweetie 
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  • Posted

    Oh sweetheart. I can totally relate to needing a bit of encouragement. I am in hospital as we speak recovering from the surgery and feeling great given the operation was only 4 days ago. In my opinion while you're young and in reasonably good health you're best having the operation the doctor has recommended as your recovery is  going to be shorter and smoother. The chiari, if left untreated, can go on and cause further issues like syringomyelia (Syrinx) which mine has caused and if I didn't have the operation it would likely worsen over time causing severe muscle weakness in arms and legs and damaging the spinal cord so I figured I was best to do it sooner rather than later. You're stronger than you realise and think about how much better you'll feel afterwards!!! 

    My advice is to ask your surgeon as many questions as you need to feel well informed and confident about the whole process. If you need a second opionion then do that too. 

    Hope this helps 😂

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  • Posted

    The sooner you have done it the better, you will get your quality of Life back..good luck to it, 2 months after ope might b e a bit tough but after that you will be laughing......
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