[xKayode]

So I've had this shunt since birth, 18 years. It's only been revised once when the tube for one broke. The pains been going on for pretty much all of those 18 years, and it really only hurts when I touch the part of my head where the shunt is located.

Why is that? Could someone explain?

Also, is there a way to get like the pain to stop?


And my last question: What's the chance of getting a shunt removed and actually performing well in life?

[MegAlfOCon]

Originally Posted by xKayode

So I've had this shunt since birth, 18 years. It's only been revised once when the tube for one broke. The pains been going on for pretty much all of those 18 years, and it really only hurts when I touch the part of my head where the shunt is located.

Why is that? Could someone explain?
I can't explain it but I had the same issue until I was about 18 and wound up having a revision right after graduating high school after we realized that the catheter had detached from the valve. They wound up leaving in my old catheter because I had grown up around it (previous revision had been at age 4) so it is still there. I mentioned all of that because I wonder if the shunt pain is connected to growth, i.e. as the body grows up around the shunt there is some pulling or something. In my case, it caused a detachment but that may not be your case.

Also, is there a way to get like the pain to stop?
no clue. I do get periodic pain around where my old catheter used to be down through my neck but it is pretty rare these days.

And my last question: What's the chance of getting a shunt removed and actually performing well in life?

I was told by several doctors that they would never remove it "just in case" I still need it. As I mentioned in a previous post, I question how often people truly grow out of being shunt dependent but if everything works correctly, there is no need to follow up so we may never know.

[Merl1n]

Originally Posted by xKayode

So I've had this shunt since birth, 18 years. It's only been revised once when the tube for one broke. The pains been going on for pretty much all of those 18 years, and it really only hurts when I touch the part of my head where the shunt is located.

Why is that? Could someone explain?

Also, is there a way to get like the pain to stop?


And my last question: What's the chance of getting a shunt removed and actually performing well in life?

Hi there Kay,
I am not a Dr, so I'll state that bit first.
But the brain itself has no pain receptors, it processes pain but does not feel the sensation of pain. So when you say it hurts are you meaning the surface of your scalp or deeper? I have recently had a shunt revision, where they have cut the scalp and stapled it back together it is very sensitive around the wound and around the valve. I am still to find a fool proof way to stop the pain short of medication, which knocks me so bad I need a bed.
Now for your last question. This year I have required 3 surgeries and things still ain't good. The dr's are talking about more which I'm not happy about . But, when they started they were unsure what the story was with what was going on within my head. They thought I may be 'Shunt independent' meaning that the shunt could be removed. They drilled a hole in my forehead and placed a pressure gauge in the hole. I was told it would be there for 3 days. The first night things went bad and I was rushed to theatre the next morning. I was told the pressures should be between 6-12, mine where 80-90, seems I was not a candidate for being 'Shunt independent'. They removed the gauge and replaced the shunt.
The pain I now have is severe headaches and intense eye pain, which the dr's tell me they cant do much about Just keep taking painkillers.
Now these have been my experiences in regard to your questions. And I hope they assist you. Unfortuneately the story goes on and I have no control over where it goes from here and to put it mildly I'm dreading it.

Merl1n

[darren2175]

Originally Posted by xKayode

So I've had this shunt since birth, 18 years. It's only been revised once when the tube for one broke. The pains been going on for pretty much all of those 18 years, and it really only hurts when I touch the part of my head where the shunt is located.

Why is that? Could someone explain?

Also, is there a way to get like the pain to stop?


And my last question: What's the chance of getting a shunt removed and actually performing well in life?

The original shunt I had from birth until I was 26 was sometimes sore to touch, I eventually found the reason for this was that the shunt had actually disconnected. I'm not saying this is the reason for the pain you are having but it of course it could be.

It was suggested to me before one of my surgeries that they were going to see if I could be free of the shunt, but after doing ICP monitoring and then testing the shunt itself for drip during the surgery they determined that I was shunt dependent and would always be.

A neurosurgeon would need to be really sure you were able to live without a shunt, if they took it out and pressure spiked it could be dangerous. I guess you will only know true answers to your questions by talking with an expert.

Good luck and I hope you get sorted.

[DeFreeze]

I wondered about the possibility of not needing mine, since I had gone 30 years without a revision. Then I needed one. The resident NS said she had never seen ventricles that full and asked "WTH took you so long to get in here?" as she dialed transportation to take me to a community hospital (since I can't get insurance.)