tag:blogger.com,1999:blog-7348094510831364714.post6997229930923590540..comments2023-10-07T03:38:50.322-07:00Comments on tumor-ey side of me: hard to swallowTumor Haterhttp://www.blogger.com/profile/00885047709798763442noreply@blogger.comBlogger1125tag:blogger.com,1999:blog-7348094510831364714.post-50969153555693691102011-06-01T07:27:10.363-07:002011-06-01T07:27:10.363-07:00Hi there my name is Silvana and i live in the Unit...Hi there my name is Silvana and i live in the United Kingdom. I have been diagnosed with neaurofibromatosis for 25 years. Doctors still dont know which type I have as I have ailments of both type 1 and 2. I have undergone 2 brain operations, 2 neck operations, 1 spinal operation, 1 lower arm operation, a historectamy and 2 thorasic operations. I still have growing tumors which are reviewed every 6 months to 2 years depending on the severity of them. <br />I read your story in the bella magazine and it gives me hope that you can still get on with life also i think its good that this disease is spoken about as its not common in people.<br />I find it very hard to talk about it as there's noone i know that can fully understand and thats where i saw your story and thought i must get incontact.<br /> Some days are worse than others,from hardly being able to walk to sleepless nights as i cant lye on my back straight. Im going to see a professor next week in guys hospital london to get my full MRI body results where ill find out where all my tumors are and how many i have as well as what type i have.<br />I am also under a genetics team who use me as a dummy (if you like) to get to know this disease abit more.<br />Im on pregabalin 100mg a day to control my pain, i have to sit on a pressure coushin as without it i get shooting pains up my leg, buttock cheek and spine<br /> <br />Hope to hear from you soon<br /><br />Silvanatherocksghttps://www.blogger.com/profile/10292155111952792724noreply@blogger.com