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Forum: Child Neurology 12-25-2010, 03:45 AM
Replies: 4
Views: 983
Posted By DystoniaGal
I dont have an ITB pump, but I am on oral...

I dont have an ITB pump, but I am on oral baclofen for my dystonia and I have been on baclofen for over 20 years now. Sounds like there may be a kink in the tubing if the spasms are intermittent.
Forum: Child Neurology 10-03-2010, 10:53 PM
Replies: 11
Views: 1,101
Posted By DystoniaGal
Could it be Vancomycin?

Could it be Vancomycin?
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 08-29-2010, 01:12 AM
Replies: 5
Views: 1,046
Posted By DystoniaGal
Yes I have had 2 sets of cluster surgeries. My...

Yes I have had 2 sets of cluster surgeries. My last set was in 2008 i had 3 surgeries within the span of 7 weeks.
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 05-22-2010, 04:38 PM
Replies: 13
Views: 1,161
Posted By DystoniaGal
yes, sharp stabbing pain

yes, sharp stabbing pain
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 05-22-2010, 04:37 PM
Replies: 13
Views: 1,161
Posted By DystoniaGal
Pirate Booty......yummy!!!! Hope surgery goes...

Pirate Booty......yummy!!!!
Hope surgery goes well for Hannah
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 05-04-2010, 06:57 PM
Replies: 13
Views: 1,161
Posted By DystoniaGal
Lisa, I had pain and was just beginning to form...

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.
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 04-25-2010, 03:37 PM
Replies: 3
Views: 460
Posted By DystoniaGal
Deborah Havent been here in a long time, but as...

Deborah
Havent been here in a long time, but as long as Austin is a full-time student you should be able to keep him on your insurance until age 23 or older in some states. I dont recall how old he...
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 11-15-2009, 10:29 AM
Replies: 5
Views: 784
Posted By DystoniaGal
Lily Havent been here in a while. You sound...

Lily
Havent been here in a while. You sound like you might be overdraining. I sleep on an incline to help with the overdraining. Do you have an anti-siphon?
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 09-14-2009, 07:58 PM
Replies: 13
Views: 1,603
Posted By DystoniaGal
Was it Emily that had issues with the 4th vent???

Was it Emily that had issues with the 4th vent???
Forum: Child Neurology 08-24-2009, 04:33 PM
Replies: 21
Views: 1,389
Posted By DystoniaGal
Please tell me that you are not driving.

Please tell me that you are not driving.
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 08-24-2009, 04:31 PM
Replies: 13
Views: 872
Posted By DystoniaGal
I am so glad to see that your NS is acknowldging...

I am so glad to see that your NS is acknowldging the seriousness in this matter. Hopefully you'll get fixed up and good to go in no time.
Suzie
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 08-23-2009, 09:35 PM
Replies: 5
Views: 509
Posted By DystoniaGal
wonder whatever happened with nina and nikki?

wonder whatever happened with nina and nikki?
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 08-23-2009, 09:24 PM
Replies: 2
Views: 382
Posted By DystoniaGal
Thumbs up so far so good

well 3 days out from surgery and no headaches. *knock on wood* *all crossables crossed*

i have to sleep on an incline, for how long, who knows. but at this point i am willing to do anything to...
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 08-18-2009, 10:50 PM
Replies: 8
Views: 780
Posted By DystoniaGal
surgeons theory, i am very pressure sensitive....

surgeons theory, i am very pressure sensitive. slightest increase i get sick, slightest decrease i get sick. if i am still overdraining on the programmable, not sure what we will do then. but the...
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 08-18-2009, 05:59 PM
Replies: 1
Views: 672
Posted By DystoniaGal
News from Lisa Jean/Hannah

Not sure if many of you follow Hannah on Caringbridge. Hannah's sister Kati has just been dx with some sort of mitochondrial disorder and most likely Hannah has it as well since they both have the...
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 08-18-2009, 05:56 PM
Replies: 8
Views: 780
Posted By DystoniaGal
Headed back to the OR on Thursday

I'm overdraining tremendously on this OSV II so I have decided to have a Codman put and start at 200 and go from there, with an anti-siphon as well. Hopefully this will help and I can get my life...
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 08-18-2009, 05:54 PM
Replies: 6
Views: 681
Posted By DystoniaGal
hmm interesting.

hmm interesting.
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 08-16-2009, 07:02 PM
Replies: 6
Views: 681
Posted By DystoniaGal
Which part of your skull is your shunt inserted at?

I am trying to figure out of the insertion point of the catheter can impact the drainage of CSF?
Input welcomed.
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 08-16-2009, 12:01 AM
Replies: 11
Views: 812
Posted By DystoniaGal
With you having a VA shunt, I would think the...

With you having a VA shunt, I would think the docs would be more aggressive since you could go septic very easily. I know that the medical system in England has the channels you have to go through...
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 08-15-2009, 11:52 PM
Replies: 6
Views: 1,909
Posted By DystoniaGal
Before you go all the way up to CC, why not try...

Before you go all the way up to CC, why not try getting a consult at Shands at UF here in Gainesville. Fantastic group of NS, been with them for 6 years and have seen most of them in one capacity or...
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 08-14-2009, 04:59 PM
Replies: 3
Views: 412
Posted By DystoniaGal
My NS's nurse called me this morning giving me...

My NS's nurse called me this morning giving me two options. Wait it out and see how my brain adjusts or go back to a programmable. At this point, I am opting for the programmable to at least get me...
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 08-13-2009, 08:50 AM
Replies: 3
Views: 412
Posted By DystoniaGal
Marcie/Jon's Mom

I had the OSVII placed 7/9 and had a proximal revision on 8/5. I am definitely overdraining. I have a burr hole from my fenestration a few years ago. WHen I start to overdrain, the hole gets sunken...
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 08-12-2009, 11:22 PM
Replies: 16
Views: 1,212
Posted By DystoniaGal
Sent you a PM Denese.

Sent you a PM Denese.
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 08-12-2009, 11:20 PM
Replies: 6
Views: 552
Posted By DystoniaGal
Well today started off really well, no headache...

Well today started off really well, no headache and well after lunch things went downhill fast. I am overdraining and I am miserable. I promised my NS I would give this 2 weeks for my brain to settle...
Forum: Hydrocephalus (in memory of Braindrain aka Gina) 08-11-2009, 06:30 PM
Replies: 16
Views: 1,212
Posted By DystoniaGal
Wow a blast from the past. Thought about you guys...

Wow a blast from the past. Thought about you guys when I was sitting in the NS waiting room. They have moved down to the first floor. I am now trying a new valve, OSV Smart Valve II. This was Dr P...
Showing results 1 to 25 of 393

 

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