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Can a failed shunt be extended? Or can the lower end(valve to abs) be removed safely?

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Old 11-08-2015, 11:06 AM   #1
hatrickpatrick
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Default Can a failed shunt be extended? Or can the lower end(valve to abs) be removed safely?

Tiny bit of background, I'm 25, 6"2, have had hydrocephalus since my birth in 1989. First shunt put in in 1989, failed in 2006. They put a new shunt in on the opposite side of my head (which is much narrower and less obvious, shunt technology must have improved a lot in 17 years!) - but they left the old, defunct one from my infancy where it was. My neuro explained that he didn't feel comfortable messing with it since it was so deeply embedded, I've grown a lot since then etc. Fair enough.

Here's the problem though: I've been getting quite strong lately and building a lot of muscle around my pecs. This is causing no problems whatsoever with the new shunt, as it seems much more flexible and long than the original one - I can barely feel it even when lying on that side. However, the original shunt is a different story - It's very tight. If I lie on my side with the new shunt on the "down" side of my body, the natural squeezing together of my pecs puts an incredibly uncomfortable (not quite painful, but borderline) strain on the old shunt. It's exceedingly unpleasant and will of course only get worse if I continue bodybuilding, which is something I really, really enjoy (particularly as the shunt understandably prevents the playing of contact sports, so it's one major form of exercise I can still do!). I have already resolved not to take "you're just going to have to give it up" as an answer.

The way I see it, there are three potential options here.

1: Live with the discomfort and the ongoing worry that one day if my pecs get much bigger, the shunt will snap. Don't know what the consequences of this would be since it's blocked and defunct, but given that we don't know where the blockage is, that could easily lead to a CSF leak in my chest. Doesn't sound like a good thing.

2: Convince my neuro to remove the old shunt. I was thinking that even if it's too dangerous to remove the portion of it which goes from the brain to the valve, might it be possible just to remove the lower end (valve to abdomen) and close off the end of the valve so as it won't leak? Is this something that anyone has heard of, or had done themselves?

3: Extent the lower portion of the old shunt. Can this be done, and again has anyone here had it done? As in, take the section which goes into the abdomen and make it longer, such that expanding upper body muscles won't cause any stress and it will simply use up some of its spare length?

Any info at all would be appreciated.

I know many will probably tell me that I should just give up on the bodybuilding altogether, but for a wide variety of psychological reasons I really, really don't want to do this. I went to a school where rugby was the main sport played and to this day, the insecurity of having a very average body compared to the gym heads I hung out with is still a massive motivator for me. The bodybuilding gives me a confidence which I know I couldn't replace, so as I say I'll only give it up if someone tells me "it's either give up bodybuilding or face certain death in the next few years". It's that important to me, which I know might sound silly, but there it is

Any advice or insights?
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Old 11-27-2015, 12:34 PM   #2
Iforgotmypassword
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Originally Posted by hatrickpatrick View Post
Tiny bit of background, I'm 25, 6"2, have had hydrocephalus since my birth in 1989. First shunt put in in 1989, failed in 2006. They put a new shunt in on the opposite side of my head (which is much narrower and less obvious, shunt technology must have improved a lot in 17 years!) - but they left the old, defunct one from my infancy where it was. My neuro explained that he didn't feel comfortable messing with it since it was so deeply embedded, I've grown a lot since then etc. Fair enough.

Here's the problem though: I've been getting quite strong lately and building a lot of muscle around my pecs. This is causing no problems whatsoever with the new shunt, as it seems much more flexible and long than the original one - I can barely feel it even when lying on that side. However, the original shunt is a different story - It's very tight. If I lie on my side with the new shunt on the "down" side of my body, the natural squeezing together of my pecs puts an incredibly uncomfortable (not quite painful, but borderline) strain on the old shunt. It's exceedingly unpleasant and will of course only get worse if I continue bodybuilding, which is something I really, really enjoy (particularly as the shunt understandably prevents the playing of contact sports, so it's one major form of exercise I can still do!). I have already resolved not to take "you're just going to have to give it up" as an answer.

The way I see it, there are three potential options here.

1: Live with the discomfort and the ongoing worry that one day if my pecs get much bigger, the shunt will snap. Don't know what the consequences of this would be since it's blocked and defunct, but given that we don't know where the blockage is, that could easily lead to a CSF leak in my chest. Doesn't sound like a good thing.

2: Convince my neuro to remove the old shunt. I was thinking that even if it's too dangerous to remove the portion of it which goes from the brain to the valve, might it be possible just to remove the lower end (valve to abdomen) and close off the end of the valve so as it won't leak? Is this something that anyone has heard of, or had done themselves?

3: Extent the lower portion of the old shunt. Can this be done, and again has anyone here had it done? As in, take the section which goes into the abdomen and make it longer, such that expanding upper body muscles won't cause any stress and it will simply use up some of its spare length?

Any info at all would be appreciated.

I know many will probably tell me that I should just give up on the bodybuilding altogether, but for a wide variety of psychological reasons I really, really don't want to do this. I went to a school where rugby was the main sport played and to this day, the insecurity of having a very average body compared to the gym heads I hung out with is still a massive motivator for me. The bodybuilding gives me a confidence which I know I couldn't replace, so as I say I'll only give it up if someone tells me "it's either give up bodybuilding or face certain death in the next few years". It's that important to me, which I know might sound silly, but there it is

Any advice or insights?
I could understand where the doctors would be concerned about removing the first one. Imagine your baby finger in a cotton ball. Now take out the baby finger and put in your thumb. Once you remove your thumb, there is nothing there to replace it. The Doctors maybe concerned about infection. I'm 6 years older then you and 5 inches shorter. I was told they put enough tubing into a coil in my stomach that I would be able to grow and not have issues. With yours it's a different story.

When it comes to people telling you to quit something that you love, I wouldn't do it. I grew up with a parent who was concerned about everything I did. Yes, I am still concerned now but there are precautions one takes, wearing a helmet for example. Having a shunt isn't a death wish, we just have to do be a little more careful. We aren't going to live in a bubble because of this. We have the same chance of death as the next person. I drive a car, been on ATV's, I've even done luge on a 30 year old sled down an Olympic track. I was wearing a helmet. I ride a pedal bike(with a helmet). Next year I plan on getting a motorcycle. Basically all I am saying is don't be afraid. We only live once. Would you rather be doing something that you love or sitting on your *** because others said "you can't do it because you'll die." Well, everyone dies, at least you get to die doing something you love.
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Old 11-30-2015, 08:48 PM   #3
hatrickpatrick
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Originally Posted by Iforgotmypassword View Post
I could understand where the doctors would be concerned about removing the first one. Imagine your baby finger in a cotton ball. Now take out the baby finger and put in your thumb. Once you remove your thumb, there is nothing there to replace it. The Doctors maybe concerned about infection. I'm 6 years older then you and 5 inches shorter. I was told they put enough tubing into a coil in my stomach that I would be able to grow and not have issues. With yours it's a different story.

When it comes to people telling you to quit something that you love, I wouldn't do it. I grew up with a parent who was concerned about everything I did. Yes, I am still concerned now but there are precautions one takes, wearing a helmet for example. Having a shunt isn't a death wish, we just have to do be a little more careful. We aren't going to live in a bubble because of this. We have the same chance of death as the next person. I drive a car, been on ATV's, I've even done luge on a 30 year old sled down an Olympic track. I was wearing a helmet. I ride a pedal bike(with a helmet). Next year I plan on getting a motorcycle. Basically all I am saying is don't be afraid. We only live once. Would you rather be doing something that you love or sitting on your *** because others said "you can't do it because you'll die." Well, everyone dies, at least you get to die doing something you love.
Agree with everything here. That being said, the old shunt genuinely is starting to hurt, in that if I now run my finger across my chest, it grinds against my bones / muscles / whatever as my finger passes over it and is quite sore. I'm pretty sure you're not supposed to be constantly "aware" of the shunt sitting inside your body, so I'm just worried that if they can't extend it or move it around so that it's not so tight, I'll be faced with either letting my muscles shrink back down or else living with a lot of discomfort for the rest of my days :/ Not exactly a happy choice, especially since I never noticed or felt it inside me up until a few years ago when I started growing.

It's only at one particular area, just below the collar bone. There, the shunt visibly protrudes, pushing the skin out so that the outline of the shunt is very visible. It's this spot that gets very uncomfortable in various situations - carrying something and having to balance it against my chest, someone / a pet leaning their head against my chest, lying on one side of on my stomach, etc - the slightest bit of pressure against it brings on this ridiculously uncomfortable "grinding" feeling under the skin. With the new, narrower shunt on my right hand side, it's a completely different story - you can barely see it and you certainly can't feel where it is, either internally or by running a finger over the chest. Either it fits better or is embedded deeper inside - either way, if there was any way to make the old one feel like that by moving it or replacing a section of the tubing or anything like that, I'd do it in a heartbeat. Would happily go through the surgery and having to give up pretty much everything for the three months during recovery if it means no more discomfort.

Has anyone here experienced anything like I'm describing, and if so was there a solution? As I say, I took up bodybuilding when I was 18 and I got very serious about it only in the last 2-3 years - up until maybe one or two years ago I never had any issues like this so I feel there's definitely a correlation between my pecs getting bigger and the old shunt feeling more and more prominent.
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