[floridahydrowoman]

Hello everybody. I am so glad that I found this wonderful website. I was diagnosed recently with mild hydrocephalus. Few months ago, after a transphenoidal surgery to remove a tumor, things got complicated with a CSF Leak, then with a spinal meningities. After almost a month in the hospital I was released. Headached never went away, neither the CSF leak. I decided to look for second opinions which provided me with the news that due the the meningities contracted earlier, I had hydrocephalus. One Neuro Surgeon didn't care too much about it and propossed to see me in 6 months. The other neuro surgeon suggested me to get a Shunt. A neurologist that I also saw, confirm the mild hydrocephalus.
My question to all of you is if I should go for the Shunt Surgery or not. I have read many reports and data about the surgery, the complications, but if I don't do it, what can happen? If any of you had the surgery, would you be better now without doing it? I am confused and very concerned. Thanks for your time.

[Hockey]

Welcome to NT!

I don't know a lot about your condition, but I know that there are lots of people here who can help you.

If you haven't already found it, the link for hydrocephalus is
http://neurotalk.psychcentral.com/forum14.html

Cheers

[floridahydrowoman]

Hi Hockey,

Thanks for your kind answer and the link. What kind of problem do you have with hydrocephalus?
Take Care.

[jadiee-x]

Hi Floridahydrowoman

I strongly suggest you do get a shunt.
I have one myself, and Ive had mine since I was a toddler.

Having being told you have hydrocephalus, without the surgery for a shunt, you should expect some dreadful headaches as pressure rises more and more.
A shunt is there to prevent the pressure rises, of course they do come with complications, like blockage and infection.
If your shunt was to block, then i assume you would be in the position you are in now. If there were an infection, thats something new, and should there be a big infection, it can leave you in a nasty way.

If your pressure inside your head was to continue to rise, you could be damaging your brain, just of of it as two balloons being pumped up inside your brain, the more they get pumped up the more pressure on the inside of the brain. The shunt will give the fluid a pathway to drain away and relieve any build up.

Just for your information :P, I came back from Florida this morning, and back to the miserable UK

[bgus1969]

Go for the shunt because it won't get better by itself. I know one of the top neurosurgeons in tampa. He's the best he will give u the right advice he removed my cyst and shunted me

[floridahydrowoman]

Originally Posted by jadiee-x

Hi Floridahydrowoman

I strongly suggest you do get a shunt.
I have one myself, and Ive had mine since I was a toddler.

Having being told you have hydrocephalus, without the surgery for a shunt, you should expect some dreadful headaches as pressure rises more and more.
A shunt is there to prevent the pressure rises, of course they do come with complications, like blockage and infection.
If your shunt was to block, then i assume you would be in the position you are in now. If there were an infection, thats something new, and should there be a big infection, it can leave you in a nasty way.

If your pressure inside your head was to continue to rise, you could be damaging your brain, just of of it as two balloons being pumped up inside your brain, the more they get pumped up the more pressure on the inside of the brain. The shunt will give the fluid a pathway to drain away and relieve any build up.

Just for your information :P, I came back from Florida this morning, and back to the miserable UK

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.

[floridahydrowoman]

Originally Posted by bgus1969

Go for the shunt because it won't get better by itself. I know one of the top neurosurgeons in tampa. He's the best he will give u the right advice he removed my cyst and shunted me

Hi Bgus1969,

Thanks for your reply and for your opinion. I wonder how long ago did you get the shunt. Was it a VP Shunt? I truly hope that you are feeling better, without pain and getting back to your life, if not the same, maybe even better. I live in South Florida. Did you get your surgery done in Tampa? I wonder what would I feel once I have the shunt inside in my body, like neck, stomach area, etc. Feedback? : )
Again, thanks for your kind reply.

[jadiee-x]

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.

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

[jadiee-x]

and regarding feeling the shunt inside you. You cant, well atleast i dont

[floridahydrowoman]

Dear Jadiee-X,

I only can say WOW. I am very impressed with your story and with the strenght in you. It makes me realize that I am not alone. That other people have suffered and still suffer. It is like a sub-culture of good people that are facing all these problems day by day. A lot of our dreams maybe are broken, for now or forever, but you know what ? We can have other dreams. I am also an ex-soccer/football player, but that was a while ago and sports oriented. Sometimes, even walk from the couch to the other room is a struggle because I am experiencing strong leg pains, as well as the headaches, and problems with stability.
I will not lie to you. I am afraid and concern of all my symptoms and the outcome, and the future with this new illness, but I strongly believe in support. And not only receiving it but giving it. My knowledge at this point is very limited related to my problem, but please remember, as well as everybody else in this wonderful and caring blog that I am also here for all of you. Many hugs. God bless you now and forever.