Made it a year so far!

Hello everyone. I feel like it’s my birthday! I’ve made it a year so far when everyone thought I wouldn’t survive. It’s been real hard. Had to have all my teeth pulled after the hospital broke all them when they intrabated me. I am finally getting used to these dentures though and I am starting to eat again. On the 12 of this month I am having my eye muscle surgery. Hopefully they will be able to take away this double vision I now have and I will be able to shed these big glasses I have to wear now. I hope it works and I don’t go through all that for nothing. I went on u tube and watched it and it looks painful. They put dissolving stitches in your eye! They said they have to move my muscle over 2.5 cm. after I woke up from the 4 month coma they put me in a nursing home. The woman that was in there didn’t want anyone in her room so she pushed me out of the bed and then I got double vision. It’s been one thing after another. I feel like I am being rebuilt! My entire left side has puns and needles all the time. My face is numb. I walk like I’m 300 years old now! But I made it a whole year so far. I am scared about this eye surgery but I am hopeful. They said it might help my walking since balance has slot to do with it. Keep your fingers crossed! A little hope won’t hurt. Hope everyone here has a peaceful evening. God bless.

God bless you, it sounds like you have had more than your fair share of issues. I hope you keep on improving.

Debbie, Congrats on the year! And all the improving, you must be an extremely strong person. Keep it up!

Well I hAd my eye surgery And it worked! I don’t see double no more so I don’t have to weR these prism glasses anymore. Now I have to give it time for my eye to heal. I wish the rest of me would get better. I hate being like this. Totally useless! One thing at a time though.

Congratulations on reaching this milestone! Good on you for hanging in there. There must have been some rough days. Thank you for sharing you story. Your are giving me inspiration and hope for my husband as he recovers.

I am thrilled to read that your eye surgery was a success! Hopefully, every new day will bring improvement.

A long and winding road it is, but sure and happy to be on this journey with you! I just celebrated my 1 year life day too, complete with cake and flowers! Happy life day to you too!

It’s so good not to have to wear those thick and heavy glasses no more. It is like a miracle! I made dinner by myself also! It wAs only a cheeseburger hamburger helper but I did it! Such little things mean so much! I hope I am able to cook a turkey for thanksgiving. I’m just so glad thAt I am still able to have a thanksgiving. My father in law is coming for thanksgiving but none of my family is coming. Not one of my brothers or sisters have come to visit me. My sister died of a brain tumor while I was in the coma and I didn’t get to go to her funeral. That really bothers me. I was so close to her and now she is gone. I would have went if I could. I found out my dad didn’t even go to her funeral. He can drive 500 miles to get donuts but said he can’t drive to her funeral. I will never forgive him for that. I talk to her all the time and ask her to help me but I doubt she hears me. I am so dizzy all the time. They said its this hydrocephalus. I need to research this to find out how to beat it. Does anyone else have this? I need to be able to walk again and be able to do things. This just sitting here all day is driving me crazy! There is much I want to do but it is so hard to just walk across the room. I hate being like this.

Hey Debbie,

Celebrate ALL those 'little' things, because for us those little things are HUGE!!! As for your family issues I think we all have our own versions of family issues. I know for my own mother she has difficulty with guilt and self blame regarding my situation, but none of it is her fault. All of my other family seem rather blasé about it all. I have learnt not to take their judgement on-board. I have to manage all of this for me, not them. As for the hydrocephalus, this is something I have lots of information about. Basically speaking hydrocephalus is "water on the brain". It is not actually water but a substance known as Cerebral Spinal Fluid (CSF). This fluid surrounds the brain and spinal cord. It cushions the brain within the skull and allows for waste to be removed from the brain via the flow of fluid. The fluid is produced within the subarachnoid space by the choroid plexus and drains through the ventricular cisterns, down thru the aqueduct (small tube) within the spinal cord. There is a bit of a debate as to how the body uses and absorbs the CSF. Some think it is absorbed by the brain and spinal cord, some think its not absorbed by the brain at all and it all drains out of the skull via the spinal cord. Either way 'usually' the fluid is used or absorbed by the body.

With hydrocephalus this does not occur and the fluid (or water) stays within the skull, causing 'water on the brain' or hydrocephalus. The problem being there can be a number of causes and thus a number of ways to manage it. From the information I have, there are 4 primary forms of hydrocephalus. Communicating, non communicating, ex-vacuo and Normal Pressure Hydrocephalus (NPH).

Here is a shortcut to a fact sheet that will explain it much better than I can.

As for the 'dizzy's', aren't they just BLOODY AWFUL!!! If I'm laying and go to sit up WOOO dizzys If I'm sitting and go to stand up WOOO. BAD dizzys, at times falling over. I am almost 3 years post my last incident and still these head rushes are constant. I now have a shunt with an adjustable valve and even in adjusting the valve pressure, the head rushes have not abated. And for me the head rushes cause an instant increase of chronic bad headaches, like my eyes are going to explode from my skull. Chronic.

I have been my own worst enemy at times. I want to be right, and I want it right now!! I tried to push myself harder, in my mind, to build stamina so I could get back to work, back to my 'old' life. BUT In pushing myself I've done more harm than good. I didn't listen to my body that was telling me to stop and rest, but instead I pushed myself. Only to pay, in pain, for it later and possibly doing myself some longer term damage. I still have not returned to work and have now been advised that I probably never will. And that drives me a little bit more than just 'crazy'. This is a VERY slowly, slowly process and I am SLOWLY learning that.