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05/01/2010 06:59 AM

The do's and don'ts of a programmable shunt

mobilmom791
Posts: 3
New Member

My son just received a programmable shunt. I have ALOT to learn, please help me figure this new shunt out. Any words of wisdom????
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05/01/2010 09:32 AM
tiek72707
Posts: 30
Member

I've had a programmable shunt since November 2009. I've had a shunt for about 3 yrs now because of a pineal tumor that is blocking my third ventricle drainage route for csf.

The 1st rule my neuro surgeon told me for the strata valve was to see my local ns within 4 hrs of an mri because a programmable shunt has a magnet in it to adjust the valve for drainage and an mri can change the setting. (I need to have an mri every 3-4 months to make sure the cancer is not back)

The 2nd rule I learned from a couple of members of this website is that a prog shunt is very sensitive to barometric pressure. I had noticed I would get pressure headaches behind my eyes and my double vision would get worse when storms form and after they're gone. So if your son gets a horrible headache pay attention to the weather to make sure you don't think the shunt is malfunctioning and rush him to the ER. My head doesn't feel better until 12-24 hrs after a storm has passed.

The third I learned from traveling from Reno NV to my ns in SF is that elevation changes the pressure in my head. My dr has told me that it shouldn't affect me but I always get a bad headache going from 4400 ft to about 8000, and then down to sea level. Once I am back home it usually takes about 2 days for the pressure to go back to normal.

Another thing would be sure you and your son know what pressure his shunt is set at all times so if there is an emergency you or your son can tell the doctors the type of valve and the setting. For example for me the valve is strata and the setting is 1.0.

Shunts are not perfect devices so you may want to keep a journal of how your son feels from day to day so you can be certain if he needs a revision. Ct and mri scans don't always show the ns what he needs to see. A slight change in icp can show no change in ventricle size, but can have a huge effect on your sons headaches, vision, balance, etc.

Don't be afraid to ask your son's doctor questions and do some research of your own because each person has different experiences.

My wife and I have learned a lot in the past 3 yrs. I of the biggest was that doctors are just people too like you and me no matter how many letters they have behind their name. We learned with my 1st icu stay that doctors will use medical terms that you might understand and that sometimes they don't have all the answers. Before my 1st revision my neurologist was determined I was having migraines and prescribed me every migraine medication there was and none of the helped and most had some bad side effects. It turned out that the tube that went into my brain had become clogged with protein just a year after I got my 1st shunt.

Good luck and stay strong. Having a shunt is not ideal but it keeps me alive.

Take care,

Nick


05/01/2010 03:23 PM
mobilmom791
Posts: 3
New Member

Thank you so much for the info. My son's other shunt (he was shunted at 14hrs. old, he has congential hydrocephalus - his last revision was when he was 6 months old and he will be 13 this month) was not programmable. As I mentioned before we have not had a revision since he was 6 months old so even though we have had a shunt for a long time, we are "new" to revisions.

How long did it take you to not feel "rough" after the revision? His surgery was 4/28/10, he had a total shunt failure. Any and all info you are willing to share will be greatly appreciated!

Thank you and God Bless!

Lorri

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