distal pain following shunt setting change?

[lisajean]

Hey all,
Hannah has been having her new codman shunt setting changed in hopes of finding a "sweet spot" that reduces her pain a bit.
Well, five days after her last change (from 130 to 100) she began to suffer from right sided lower back pain. We figured UTI or kidney stones but after many scans (US, XRAY, CT) everything looks normal. There was however free fluid in that area. Not unusual to have free fluid but do you think that because there is more fluid draining it could cause pain?
Wondering in anyone has ever dealt with this??
Thanks,
Lisa

[1Lily]

Hi Lisa,
I do find that I get pain down there, whenever there are too many things going, or actually, not going...if my bladder and/or my bowel are full, like on a long drive or something, I will get pain down there that I have come to identify as "shunt pain", because I never had it before the shunt went in. So when things get crowded, I know it!
Hope this helps,
Lily

[lisajean]

Thanks Lily,
Hannahs bowel/bladder all look good according to scans/labs etc......
Will see NS on Monday.
Thanks for the input. Hope you are doing well!
Lisa

[DystoniaGal]

Lisa,
I had pain and was just beginning to form a pseudocyst. Her body may not be able to reasorb the CSF fast enough, hence the pooling in her abdomen. That is why I was converted to a VA shunt.

[Austinsmom]

Hi, Lisa
Sorry to see both of us here again with our kids going through shunt concerns, for Austin with his programmable it took many tries to find a "sweet spot" and that seemed to be at almost completely open after being close to closed when Austin first got the prog. shunt... Complacated...Hannah too I know {{Hugs}} wishing a quick find to this pain, Austin did not have pain in that area ever, that I can remember, but this last revision he had a clog in the mid to lower distal end. stopping up his 2nd shunt weird stuff I wish our kids the best, they sure deserve it
how about a shunt o gram, it told the NS alot on Austin, always questioning the process; yet for Austin it told them alot...
Wishing Hannah a healing white light to surround her, and hus to both of you.
Deborah

[CathyE]

Originally Posted by DystoniaGal

Lisa,
I had pain and was just beginning to form a pseudocyst. Her body may not be able to reasorb the CSF fast enough, hence the pooling in her abdomen. That is why I was converted to a VA shunt.

What kind of pain did you get? any stabbing pains?
(This ? is not regarding me)

[lisajean]

Well the verdict is in and it is not the shunt. Hannahs gallbladder is not working like it should (biliary dyskinesia) and the only "fix" is to take it out. So on 5/24 she will be having surgery to remove both her gallbladder and her appendix (a two-for-one....lol). At the same time the surgeon will look around to make sure everything else looks ok.
Sigh, surgery again. Hopefully this will help as she is in so much pain she can't leave the house and her diet consists of Pirate Booty (puffed corn snack) and frozen yogurt.
Will update you after her surgery. Thanks for all the ideas!
Lisa

[Brandon's Mom]

(((((Lisa and Hannah))))))

You will definately be in my thoughts and prayers as Hannah goes into surgery next week. I've had my appendix removed and Mike's had his gallbladder removed... just know that neither are a very easy recovery. Keep taking it REALLY slow afterwards.
I'll look for updates here and over at caringbridge.

Have her headaches gotten any better with the changes to the shunt setting yet?

[DystoniaGal]

Pirate Booty......yummy!!!!
Hope surgery goes well for Hannah

[DystoniaGal]

Originally Posted by CathyE

What kind of pain did you get? any stabbing pains?
(This ? is not regarding me)

yes, sharp stabbing pain