BrainTalk Communities 10/2006-8/2011 Archives  

Go Back   BrainTalk Communities 10/2006-8/2011 Archives > Specific Neurological Conditions (A - L) > Hydrocephalus (in memory of Braindrain aka Gina)

Reply
 
Thread Tools Display Modes
  #1  
Old 04-29-2010, 10:48 PM
lisajean lisajean is offline
Distinguished Community Member
 
Join Date: Oct 2006
Posts: 196
Default distal pain following shunt setting change?

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
__________________
Mom to Hannah: post brain tumor, stroke, hydrocephalus, autonomic dysfunction, fibromyalgia, raynauds syndrome, gastropariesis, Celiac disease, intractable pain .
WAY too much for a 21 year old to deal with.
Reply With Quote
  #2  
Old 04-30-2010, 06:05 PM
1Lily 1Lily is offline
Distinguished Community Member
 
Join Date: Oct 2007
Location: California
Posts: 1,062
Default

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
Reply With Quote
  #3  
Old 05-01-2010, 12:01 AM
lisajean lisajean is offline
Distinguished Community Member
 
Join Date: Oct 2006
Posts: 196
Default

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
__________________
Mom to Hannah: post brain tumor, stroke, hydrocephalus, autonomic dysfunction, fibromyalgia, raynauds syndrome, gastropariesis, Celiac disease, intractable pain .
WAY too much for a 21 year old to deal with.
Reply With Quote
  #4  
Old 05-04-2010, 06:57 PM
DystoniaGal DystoniaGal is offline
Distinguished Community Member
 
Join Date: Oct 2006
Location: Gainesville, FL
Posts: 396
Default

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.
__________________
DYT1 positive dytonia . Dx 1989.
Deep Brain Stimuation at Shands at UF in 2003.
Hydrocephalus dx in 1/2004 due to an infection and resolved as of 4/4/08. Hydrocephalus returned and shunted 7/9/09 with OSV II,revised 8/5/09. So many CT scans I should
GLOW
Reply With Quote
  #5  
Old 05-04-2010, 08:27 PM
Austinsmom Austinsmom is offline
Distinguished Community Member
 
Join Date: Oct 2006
Posts: 434
Post

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
Reply With Quote
  #6  
Old 05-15-2010, 07:29 PM
CathyE CathyE is offline
Distinguished Community Member
 
Join Date: Oct 2006
Location: Toronto Canada
Posts: 983
Default

Quote:
Originally Posted by DystoniaGal View Post
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)
Reply With Quote
  #7  
Old 05-16-2010, 10:52 PM
lisajean lisajean is offline
Distinguished Community Member
 
Join Date: Oct 2006
Posts: 196
Default

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
__________________
Mom to Hannah: post brain tumor, stroke, hydrocephalus, autonomic dysfunction, fibromyalgia, raynauds syndrome, gastropariesis, Celiac disease, intractable pain .
WAY too much for a 21 year old to deal with.
Reply With Quote
  #8  
Old 05-17-2010, 07:02 PM
Brandon's Mom Brandon's Mom is offline
Distinguished Community Member
 
Join Date: Oct 2006
Location: Phoenix, Arizona
Posts: 331
Default

(((((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?
__________________
Joy- hearing impaired and chronically ill due to ACM, mother to Brandon (10-25-87) vision impairment, CP, Hydro w/ VP shunt, MR, ADHD & has had a Hemispherectomy for seizures, Brittany (10-25-87) Hydro w/LP shunt, allergies, asthma, & learning disability, and Andrew (4-18-91) healthy & gifted

"Dream as if You'll Live Forever, Live as if You'll Die Today"
Reply With Quote
  #9  
Old 05-22-2010, 04:37 PM
DystoniaGal DystoniaGal is offline
Distinguished Community Member
 
Join Date: Oct 2006
Location: Gainesville, FL
Posts: 396
Default

Pirate Booty......yummy!!!!
Hope surgery goes well for Hannah
__________________
DYT1 positive dytonia . Dx 1989.
Deep Brain Stimuation at Shands at UF in 2003.
Hydrocephalus dx in 1/2004 due to an infection and resolved as of 4/4/08. Hydrocephalus returned and shunted 7/9/09 with OSV II,revised 8/5/09. So many CT scans I should
GLOW
Reply With Quote
  #10  
Old 05-22-2010, 04:38 PM
DystoniaGal DystoniaGal is offline
Distinguished Community Member
 
Join Date: Oct 2006
Location: Gainesville, FL
Posts: 396
Default

Quote:
Originally Posted by CathyE View Post
What kind of pain did you get? any stabbing pains?
(This ? is not regarding me)
yes, sharp stabbing pain
__________________
DYT1 positive dytonia . Dx 1989.
Deep Brain Stimuation at Shands at UF in 2003.
Hydrocephalus dx in 1/2004 due to an infection and resolved as of 4/4/08. Hydrocephalus returned and shunted 7/9/09 with OSV II,revised 8/5/09. So many CT scans I should
GLOW
Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Effects of setting change saralee Hydrocephalus (in memory of Braindrain aka Gina) 3 10-18-2009 04:39 PM
? about getting a setting change CathyE Hydrocephalus (in memory of Braindrain aka Gina) 4 05-12-2009 10:01 PM
low heart rate? and my setting change!!! CathyE Hydrocephalus (in memory of Braindrain aka Gina) 1 03-28-2008 05:33 PM
shunt setting smitty Hydrocephalus (in memory of Braindrain aka Gina) 2 03-03-2008 07:19 PM
my setting change got cancelled CathyE Hydrocephalus (in memory of Braindrain aka Gina) 0 03-04-2007 12:46 PM


All times are GMT -4. The time now is 07:40 AM.


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2021, Jelsoft Enterprises Ltd.
BrainTalk Communities Incorporated