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Mar 24, 2017 · Diagnosis and Treatment of Chiari Malformation Spurs Nikki Prins to Reach Out to Others

Nikki I am so thankful that Mayo clinic sent me your link. I also had to have 3 surgeries. My 1st was for the initial repair and the bovine patch was used. The day I went in to have my staples removed I started leaking while I was in the waiting room. So I was wheeled in over to the hospital for the 2nd surgery. Then 6 weeks later another leak. So then surgery # 3. That was 3 in a matter of 4 months. I must admit that many of my symptoms have subsided since surgery and others have lessened in severity. At the time of my surgeries a shunt was not needed I was told. Well as time goes in I am suffering from severe headaches and other symptoms from severe inmer cranial pressure. At times spinal fluid will drain from my nose or ear. I kniw that is not normal. I also have severe vomiting with it. The headache is close to when the doctor had to insert a drain in my back after my 1st surgery becauae the 1 he put in during surgery was nit draining correctly. Anyway as soon as he punctured my spinal column I got severely ill immediately. So if anyone has ever indured a similar headache from an experience with the spinal area may understand. Thats the best way I can explain how it feels when my pressure headaches occur. Now not every one is that severe, but even the severe ones are almost intolerable. So I was wondering if anyone may have an opinion on where to go to have this address. I can out it off much longer because I have no quality of life. I have Lupus on topnof the Chiari. I went to UT here in Knoxville and I feel I nees to check out better options. Also does it souls like I may need a shunt or some other possible surgery to help with this? Sorry if I “babbled” on and for writing a novel. I am just excited to know I am not alone. Also agian thank you Nikki for sharing your story. Your my hero girl!

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