25 August 2008

Pseudotumor cerebri

That is Kiereney's diagnosis.

Basically either a)she is making too much spinal fluid and her cerebral spinal fluid pressure is elevated and b) her body is not absorbing efficiently the spinal fluid she is making. So we have headaches and Vitamin A makes it worse(no more carrots that she loves). They call it pseudo tumor(false tumor) because the increased spinal fluid pressure on the brain makes the brain think it has a tumor.

The neurologist put her on a med called Diamox 500 mg twice a day and will recheck her in 6 weeks. She will stay on this med for a year or two and they will wean her off and see what the headaches do. It takes 7 days for the med to kick in.

If this does not work, our other two options are to have weekly spinal taps to reduce the fluid level or to have a shunt put in her lower back with a pressure dial on it that the surgeon will set to 16 and when it goes over 16, the shunt will open and drain the fluid into the abdomen until the pressure gets back down to 16.

After getting the spinal tap results and reading about the condition online, she is a textbook case.

Anyway, it feels good to have a name for the monster that has been invading our lives since April.

Roger is healing and can now wear a lace up shoe for 3 hours a day.

All in all, we got answers and I can deal with that.

Thanks for all your prayers, good thoughts and caring. It makes/made a difference.


Debbie said...

So glad that Kiereney finally has a diagnosis. Always nice to know what is causing the problems. I have heard of that Pseudotumor cerebri before. I pray her meds make the pain go away and she will be herself once again. Pain is no fun, and to be so young with it, makes it even worse.

I am also glad for Roger. Now tell him to not over do it and let it continue to heal.

Now Ness, take care of YOU!! Everyone else is taken care of now, so focus on yourself. I know that's hard. I have the same problem sometimes, but think how they and me need you to be OK, so take care of Ness!!

I hope that your week goes good. You are in my daily thoughts and prayers.

God Bless~

Wonderful World of Weiners said...

Thank God it's something they can treat. I will still be praying for her as she works her way through this new path.


Steph said...


I'm so glad that they have finally have given a name to the issue that Kiereney has been dealing with. I know that at least around here the not knowing WHAT is wrong is 10 times worse that dealing with the actual illness. It can be so scary and your mind just starts going places it has no business going. From someone who has been there, I'm so happy that at least that part is over for you. I hope that this medicine will help her quicker than expected.

I'm also glad to hear that Roger is on the mend.

Now Ness, it is time for you to relax and take care of YOU!!! Not to mention that you have to have a big supply of spoons and maybe a couple of golden ladles for your trip down here. I don't want to miss out on a chance to get meet you face to face.


Catty Ax Lady said...

Oh thank goodness Kiereney can now get some relief!!! I've not heard of Diamox...I'm going to have to look it up when I go back to work tomorrow. And thank the good Lord that Roger, too, is on his way to mending.

And now, my dear, check your spoon count, as I'm sure you're in the negative, and rest as much as you can to get it back up!! If you're coming over to help me sew, you'll need spoons!

Alice said...

Knowing is half the battle. Thank goodness you now know what she has and treatment options. Glad Roger is better with the shoe.

And glad all is well in your house. :)

Tonjia said...

hmmmm ok. Thank goodness you now have an answer. I am keeping fingers crossed that the Diamox helps, she has been through too much already.

prayers all around for NO headaches in the future!

and yay for Roger, progress is good!

Tracy said...

I am sure you are relieved to finally know what is going on with your daughter-Praying she starts to feel better soon-she has been a trooper through all of this waiting and not knowing.
Take care of yourself!

dlyn said...

Glad she has a diagnosis Ness - praying that the meds will give her lasting relief.

Reddirt Woman said...

Knowing what is going on makes things so much easier. Without a diagnosis you are fighting the unknown and it seems to come at you from all directions, but with a diagnosis, you all can focus and direct your energy into dealing with that one thing. I'm thankful for you and Kiereney that it is treatable. Also the good news about Roger. Now for you, I'd send you one of my spoons if I could, but you need to make yourself take care of you, too.


jojo said...

So glad that you've finally gotten some answers. Not knowing is so frustrating and if you are like me, I tend to let my mind wander to the worst case scenario. I hope the meds work and she will be back to her usual self soon.
Now for Roger...keep on taking things slowly so they can heal correctly. You don't want to have to go through this again and again...i'm just sayin'...i've been there!
Ness, my sweetie, you have held everyone together and now it's time for you to take care of yourself. Let's get that spoon count back up before the next round ;)

Laura ~Peach~ said...

well geezzzz what a darn diagnosis... I am so glad they have one finally and hopefully a plan to make things better for her. Good news for Roger too, now Roger dont over do it :)
Hope you have a wonderful week!
Love n hugs LAura

Debra W said...

I am so glad that Kiereney finally got a diagnosis. Somehow it makes it easier to handle when we have a name that goes with the condition. I pray that the treatment works well and that she is able to resume her normal life now.