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Old 09-24-2014, 01:02 PM #1
breen0810 breen0810 is offline
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breen0810 breen0810 is offline
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Default Extreme Headache

Alright so a little back story. I was born with hydro and had a vp shunt placed at 5 days old. I am now 24yrs old. I had my very first revision done 6 years ago this october. When my shunt failed the last time it started in July of that year with a bad headache for a week. I went to my dr n they said it all looked normal no change what so ever. Finally headaches went away then in Oct of the same year I started having issues peeing (tmi sry) I immediately went to er. I was also pregnant so they refused to do a ct and sent me home. Well 3 days later i was in a coma and being rushed into surgery from a failed shunt.

Fast forward: In June I was in the hospital with a very bad headache and vomiting. My CT once again looked fine. I stayed over night in the hospital then sent home. Well here we are almost Oct. and my headache and vomiting is back full force. I can barely function it hurts so bad. I got up this am after being up all night with it and took some excedrin migraine. I've been resting and its not going anywhere. I have had some issues peeing here n there the last cpl months and also some swelling issues in my fingers and feet.

I was told by dr a way to tell if shunt is failing is to push on the pump and if it is still mooshy than everything is fine. We also have had some weather change to cooler weather in the last 2 days. I always just get so nervous since the last malfunction I had almost killed me and my son. I do not have insurance so my dr won't see me if I go in has to at the er. I dunno what to do I don't want to rush to the er and it be nothing. Anybody know if this could be a malfunction issue?
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Old 09-25-2014, 03:26 AM #2
Merl1n Merl1n is offline
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Merl1n Merl1n is offline
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Quote:
Originally Posted by breen0810 View Post
Alright so a little back story. I was born with hydro and had a vp shunt placed at 5 days old. I am now 24yrs old. I had my very first revision done 6 years ago this october. When my shunt failed the last time it started in July of that year with a bad headache for a week. I went to my dr n they said it all looked normal no change what so ever. Finally headaches went away then in Oct of the same year I started having issues peeing (tmi sry) I immediately went to er. I was also pregnant so they refused to do a ct and sent me home. Well 3 days later i was in a coma and being rushed into surgery from a failed shunt.

Fast forward: In June I was in the hospital with a very bad headache and vomiting. My CT once again looked fine. I stayed over night in the hospital then sent home. Well here we are almost Oct. and my headache and vomiting is back full force. I can barely function it hurts so bad. I got up this am after being up all night with it and took some excedrin migraine. I've been resting and its not going anywhere. I have had some issues peeing here n there the last cpl months and also some swelling issues in my fingers and feet.

I was told by dr a way to tell if shunt is failing is to push on the pump and if it is still mooshy than everything is fine. We also have had some weather change to cooler weather in the last 2 days. I always just get so nervous since the last malfunction I had almost killed me and my son. I do not have insurance so my dr won't see me if I go in has to at the er. I dunno what to do I don't want to rush to the er and it be nothing. Anybody know if this could be a malfunction issue?
Hey Breen,
Mooshy? hmmm interesting word but anyway, if as you say its 'mooshy' that will show that the valve is working, but that is all, only the valve. I recently had a shunt fracture below the valve, but the valve was still working. I had surgery and a new shunt was inserted, but then not enough fluid was being retained, the valve was still 'mooshy' but after 5-6 full pumps of the valve it did not return to its original position. There was no fluid for the valve reservoir to refill, causing slit ventricle syndrome, and after a bad night of vomiting, sweating and awful shakes I was operated on again.

A scan of the whole shunt train from brain to peritoneal will show any fracture in the system. Some dr's only have the brain scanned by CT or MRI, where an additional ultrasound of the abdomen will show what maybe occurring further down. The only way they knew mine had fractured was because the distal tube was laying curled up in the bottom my belly. This showed up on the ultra sound.

I totally understand you don't want to rush to the ER if not needed, but in all honesty, what if it is needed? When do you go? Once you've collapsed, it's a bit late by that point.

My advice, if you are concerned, get it checked. If it is all clear, at least then you'll know those symptoms aren't too much of a concern for the next time they occur.
Hope it helps
Merl1n
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Old 09-25-2014, 09:13 AM #3
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Old 09-25-2014, 08:55 PM #4
MegAlfOCon MegAlfOCon is offline
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Quote:
Originally Posted by breen0810 View Post
Alright so a little back story. I was born with hydro and had a vp shunt placed at 5 days old. I am now 24yrs old. I had my very first revision done 6 years ago this october. When my shunt failed the last time it started in July of that year with a bad headache for a week. I went to my dr n they said it all looked normal no change what so ever. Finally headaches went away then in Oct of the same year I started having issues peeing (tmi sry) I immediately went to er. I was also pregnant so they refused to do a ct and sent me home. Well 3 days later i was in a coma and being rushed into surgery from a failed shunt.

Fast forward: In June I was in the hospital with a very bad headache and vomiting. My CT once again looked fine. I stayed over night in the hospital then sent home. Well here we are almost Oct. and my headache and vomiting is back full force. I can barely function it hurts so bad. I got up this am after being up all night with it and took some excedrin migraine. I've been resting and its not going anywhere. I have had some issues peeing here n there the last cpl months and also some swelling issues in my fingers and feet.

I was told by dr a way to tell if shunt is failing is to push on the pump and if it is still mooshy than everything is fine. We also have had some weather change to cooler weather in the last 2 days. I always just get so nervous since the last malfunction I had almost killed me and my son. I do not have insurance so my dr won't see me if I go in has to at the er. I dunno what to do I don't want to rush to the er and it be nothing. Anybody know if this could be a malfunction issue?

As an almost 40 (but not yet =P) year old advanced practice nurse with a shunt since I was 6 months old, I will tell you there are ALOT of doctors who are clueless about shunts and hydrocephalus. My neurosurgeon (who is one of the 5 doctors I trust enough to treat me) told me at my last appointment that a shunt is anagolous to a garbage disposal, sometimes they get clogged for a few days then something happens to unclog it and it works fine. He also told me that he believed that I am a human barometer but there is no way for science to confirm that right now. We are not that sophisticted. I don't have time to go into my medical history (but I have put it in other posts if you want to look it up) but I've had alot of both positive and negative experiences with the healthcare systeem

The point I'm trying to make is that you know your body so if something isn't right then get it checked out. If the healthcare provider tells you not to worry, please ask them for more specifics about why you shouldn't be worried because this is a deviation from what is normal and really listen to what they have to say. If it doesn't make sense or they blow you off, ask to speak to someone else. If you are worried about money, ask to see a social worker who should be able to connect you with resources to help.

Good luck
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