Quote:
Originally Posted by floridahydrowoman
Hi Jadiee-X,
Thanks for your kind reply. I am glad to know that you were visiting. And I wish one day I can visit Europe and of course UK.
Going back to your reply, I currently have dreadful headaches, and they are getting worse. I got a previous infections, a spinal meningitis and it was horrendous, but I am still going and moving on. Then, I was diagnosed with this Hydrocephalus problem.
I was hoping after the previous surgeries and even after the meningities that everything was going to stop there, but it was not like that.
I have always being a strong woman, but for some reason, I guess the last experience, I have became a full of worries one.
It is my understanding that if I go for the VP Shunt, I will always have to have it inside of me, and probably have it removed, replaced, etc. Therefore, in and out, in and out of hospitals and Operations Rooms.
I would like to know if you don't mind, if you have it replaced, what kind of problems it caused to you and if after the surgery were you able to perform
a normal life, meaning, go back to school, or work, walking, thinking, etc.
I am blessed to have been able to find this website and other people with the same kind of issues or very similar. It feels like, no matter how much I speak with friends or family, they don't get what I feel, and how much I worry for. To deal with a new scenario completely.
Thanks again and I hope you feel much better and take care of yourself.
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Its great to know you are fulls of beans, and very strong willed.
If im totally honest with you, over the past year, im had 10 revisions with my shunt. I have an arachnoid cyst, which isnt quite hydrocephalus, my fluid collection is on the outside of the brain pushing in on the brain rather than inside the brain pushing out.
I was always a very sporty student, a dream to become a pe teacher and continue playing football/soccer all my life as its something i loved doing.
The first of my problems wnet unnoticed until a routine check up looking at the back of my eyes for any signs of pressure came back positive, therefore i needed ICP monitoring, that resulted in me going downhill that night, leading to my first revision in 12 great years!!
A week later, my distal tubing moved out of place prompting for reinsertion in theatre, and again the same thing happened the next day, resulting in more surgery distally.
After that op i had severe abdominal pains, which came down to fluid build up in my tummy which meant a couple of biopsy like procedures to take sample of fluid under local anesthetic, these pains continued up until late february, where my surgeons converted my VP to a VA shunt, so the distal end went into my heart.
In june, the shunt malfunctioned and got blocked distally. So was taken out and the shunt removed altogether. I was given an external shunt, a few days later i had a craniotomy and fenestration to make me go shuntless for good.
3 weeks later, my fenestration failed and i was given an external shunt once more, then 6 days later the shunt was made internalised into my heart again.
I had a very small wound infection following that operation, but it was sorted.
It now leads to now, i now have my life back on track once more, i hope for it to stay this way. My head isnt quite ready for me to be running around chasing after balls yet though. When im well, im very well. But when that shunt malfunctions, and that pressure rises on my brain, i cant take the pain.
Im no longer scared of my shunt malfunctioning, the time i fear, is when it happens, not for the fright of surgery, but simply the pain my head bears leading upto surgery.
If you are scared of having a shunt inserted, can you not ask if an ETV option is available. This is a one time operation performed, a fenestration of your ventricle, meaning that the fluid can flow out into the natural pathways without the need of the shunt. This is similar as the the procedure i had done, my unfortunately my pathways made through my arachnoid cyst closed up.
All the problems my shunt has caused, I would never go without it given the chance again. When its behaving i dont know i have any problems with my head.
Good luck
