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Hydrocephalus: every summer shoulder pain, backache and headache

Posted by mlzeid @mlzeid, Jul 1, 2017

My daughter has hydrocephalus and every summer for the past 3 years she has developed the above mentioned symptoms. The past two summers she has had surgery and the problem has resolved. Is it a coincidence that this is happening to her in the summer? Could it be connected to the hot weather?

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jul 1, 2017

Hello @mlzeid,

I'm tagging @cynaburst @rosesareredmylove2016 @ejlouboutin16 @predictable @markella to bring them into this discussion with their insights.
I also found some information about the effect weather may have on shunts; here are links to several articles:

Never neglect the atmospheric pressure effect on a brain with a skull defect http://bit.ly/2uwVxbD
The Day-to-Day of Headaches and Hydrocephalus http://bit.ly/2szO7Dr

REPLY
2 replies
Martin Jensen, Volunteer Mentor | @predictable | Jul 2, 2017
In reply to @kanaazpereira "Hello @mlzeid, I'm tagging @cynaburst @rosesareredmylove2016 @ejlouboutin16 @predictable @markella to bring them into this discussion with..." + (show)
@kanaazpereira

Hello @mlzeid,

I'm tagging @cynaburst @rosesareredmylove2016 @ejlouboutin16 @predictable @markella to bring them into this discussion with their insights.
I also found some information about the effect weather may have on shunts; here are links to several articles:

Never neglect the atmospheric pressure effect on a brain with a skull defect http://bit.ly/2uwVxbD
The Day-to-Day of Headaches and Hydrocephalus http://bit.ly/2szO7Dr

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Thanks @kanaazpererira for bringing atmospheric pressure into this discussion, compliments of the National Institutes of Health. Weather in the summer features much wider swings in atmospheric pressure than in other seasons; hot high pressure under clear skies alternates with below-normal pressure in severe thunderstorms. Also giving us a link to the Hydrocephalus Association web site is especially helpful to me, because I have no personal experience with this condition or its symptoms; my knowledge comes from a friend who has been adapting to life with normal-pressure hydrocephalus for the past two years, with some success. She had a shunt installed to siphon the extra fluid from within her skull, and it's been a big help. Now, her condition is so normalized in her relationship with me and her many other friends that we haven't talked about it for months -- except to inquire generally about how things are going and whether there is anything we can do for her. Currently, her answer is "No thanks. I'm fine." @mlzeid, are you free to share with us more information about your daughter's surgery and what she does to address her symptoms now?

REPLY
mlzeid | @mlzeid | Jul 3, 2017
In reply to @kanaazpereira "Hello @mlzeid, I'm tagging @cynaburst @rosesareredmylove2016 @ejlouboutin16 @predictable @markella to bring them into this discussion with..." + (show)
@kanaazpereira

Hello @mlzeid,

I'm tagging @cynaburst @rosesareredmylove2016 @ejlouboutin16 @predictable @markella to bring them into this discussion with their insights.
I also found some information about the effect weather may have on shunts; here are links to several articles:

Never neglect the atmospheric pressure effect on a brain with a skull defect http://bit.ly/2uwVxbD
The Day-to-Day of Headaches and Hydrocephalus http://bit.ly/2szO7Dr

Jump to this post

Is it possible to counteract atmospheric pressure by changing the programmable valve setting? Can anyone suggest a way to alleviate the pain? Opioids etc don't work.

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