pseudotumor cerebrii
 

Hello,
I am a full-time working Mom in North Carolina. I grew up in the Blue Ridge Mountains of Virgina.

I joined because my daughter, age 15, has been diagnosed with pseudotumor cerebrii for about a year. They installed a shunt last December (2 weeks in the hospital for pain meds mostly). The surgery went well but the low pressure headache was unbearable. Her pressure was over 400 and normal is close to 180. She was doing great until 2 weeks ago. All that we can figure is that going back to school full time was too much for her. Would love to meet some others goign through this that can talk to me and her.

:grouphug:

Hi Blueridge and WELCOME to Neurotalk!!!

I did a little search here and found a couple of postings about pseudotumor celebri.

http://neurotalk.psychcentral.com/showthread.php?t=35205&highlight=pseudotumor+cereb ri


http://neurotalk.psychcentral.com/showthread.php?t=39211&highlight=pseudotumor+cereb ri

Medline Plus...
http://www.nlm.nih.gov/medlineplus/ency/article/000351.htm#Definition


I'm not sure really where to direct you here... but please feel free to roam around and join in anywhere.

I look forward to seeing you around the boards!
:)
Abbie

thank you Abbey i was reading about it so i could find a link for Blueridge.

Blueridge Welcome to Neuro Talk, feel free to ask and answer questions anywhere on NT, you will find a lot of helpful and wonderful people here, Sorry to hear what your daughter is going through, and being a parent, I know that end of things too, hang in there, get info, learn about it, ask all the questions you need to, and again welcome to NT

Hi Blueridge and welcome to NeuroTalk! I have lots of family up in North Carolina. A beautiful state...wish I lived there!

I see Miss Abbie gave you some links to get you started. Please feel free to join in anywhere you feel comfortable. So glad you're here!

Hi Blueridge and Welcome to Neuro Talk.

I see you have already been given some links to check out. Roam around lots of rooms to peek in:)

http://img.photobucket.com/albums/v1...urpleheart.gif

Hello Blueridge and welcome to NeuroTalk. My own DD lives in NC, so Kelly is right; it's a beautiful state. Glad you found us, so please take a look around and make yourself comfy.

Hope you can find some info regarding your DD's condition.
http://dl7.glitter-graphics.net/pub/...v2gvjnf8k8.gif

Welcome blueridge...(((hugs))) for you and daughter.

Ptc
 

Dear Blueridge,

I am a mom of a teen with PTC. We've had a long road. About 1 1/2 years for a diagnosis, one year being ignored by a neuro, and now being treated for the disease in an agressive way at Children's Hosp in Oakland.

We have been dealing with this for 3 1/2 years. It's been horrible. My son missed most of middle school (home hospital tutor),and is being homeschooled for 9th grade because of it. Most normal activities are too much for him--light, sounds and even smells can make him worse. He's been on so many meds it concerns me that it's affected his growth.

He wakes up with a headache every day, and has been unresponsive to meds. He also has stomach issues that may or may not be related to this disease. He has frequent diarrhea and nausea, and for a long time would vomit at the drop of a hat.

He's had 7 spinal taps (LPs), including a temporary shunt put in to determine if a permanent shunt would help him. The temp shunt made him very ill and the "test" did not show his CSF pressure to read high. At that point the ns decided he didn't have PTC, so he took him off the Diamox. He then developed the one symptom he never had before--papilledema. (The docs at Children's never saw a child with PTC without papilledema before.) He had some vision loss over that two month time. It upset me very much. The neurosurgeon is still very hesitant to put in a shunt because they are so problematic, and he didn't do well with the temp.

He's a church camp right now, but when he gets home next week, he'll have three dr's appts to go to. One being a colonoscopy and endoscopy on Fri to make sure there isn't anything going on in there. He also goes to biofeedback once a week for pain. This summer we've had mostly 2 or more doc appts every week. It's been tough on him. So much running around.

The neurosurgeon and neurologist concurred recently that they are going to give him an LP every two to three weeks to try and permanently reduce his CSF pressure (ICP). This is to avoid a shunt. They said they have been successful with one other patient. The LPs come with risks, too, but my son really doesn't want a permanent shunt.

Anyway, if you'd like to send me a PM I'm okay with that. I hope and pray your daughter gets well--well enough to go to school and have a "normal" life. How's her vision? Any stomach issues? Bless her heart!

Please contact me. I've needed a support system, too!

Welcome

Give your daughter a BIIIIIIIIIIGGGGGGGG HUG for me. :hug:

and one for you too :hug:

We're here if you need us. :grouphug: