ughhhh

I have a rare medical condition, 1:100,000 it basically mimics a brain tumour but no actual tumour. my body makes too much spinal fluid. It's causing my tons of issues headaches nonstop everyday, but the worst issue is my eyes there is too much fluid in my head it's putting tons of pressure on my eyes causing me to go blind. recently I've had two surgeries optic nerve fenestration which failed, and on wends I went for a stent which they were unable to place.... all that's left if I don't loose a lot of weight fast is a shunt. which have such a high fail rate. has anyone ever been "sped" through the surgery process? I don't want a shunt at all. but I only ever get two eyes... I'm scared I won't loose enough weight quick enough to save them. 

That's so scary. What centre have you been referred to? I guess I would see if your doctor could call and build a case for you. 

Hello,

I am new to this forum but I have been reading posts almost daily since about 6 months before my surgery Oct 27/15. There are so many inspirational people offering great words of wisdom.  I have the same rare condition as you. I managed it with medication which of course added to my weight and a spinal tap.  This surgery is well worth the wait. Use the waiting time to be in the best place mentally and prepare for success. I am happier than I have ever been. It's not just the weightloss. It's caring for myself with the same love and concern as I do for my daughter. It's reflecting on all that I have experienced good and bad, and the lessons I learned which have made me strong, insightful and compassionate. I am doing great physically as well. My highest weight at the start of my journey was 257 lbs and now I think I am 175 lbs. I try not to weigh in to often since success is beyond the scale. Last weekend I donated all of the clothes in my closet because everything was too big.  I went shopping and was overwhelmed with emotion when I fit into a size 12 (was 20 before).  

I understand your struggles very well and I wish you the best of luck on your journey!  :-) 

yes I know it's worth the wait, just my eye sight is very bad I don't want to go blind waiting to get enough weight off. a shunt is what will probably happen which really sucks. Im in a few medical groups on fb and most have had 5 revisions at least. this is just one reason I want to loose weight but is def a pressing issue