Comments on: Tapped

By: Nola

Nola — Sat, 10 Oct 2009 20:51:30 +0000

Finally able to catch up a bit. Sounds dreadful. And hopeful, but with a lot of dread.

Hang on to the HOPE part and you will find the diagnosis AND the treatment.

Still and all, dreadful

By: Anne

Anne — Thu, 08 Oct 2009 06:14:32 +0000

Outstanding! So.very.happy. that you have been validated – FINALLY! Katie, you rock!

By: Jo

Jo — Wed, 07 Oct 2009 16:58:25 +0000

Validation is a beautiful thing isn’t it? My son was having unresponsive episodes and we went to doctor after doctor to no avail. Had a sleep study done and turned out he had apnea. Very scary in a small infant.

GOOD FOR YOU being the squeaky wheel on this one. I can understand the frustration and the sense of relief when someone finally says you are not crazy.

Hope the rest of this journey for you is as easy as it was for us. Baby boy doing great. I know you will too.

By: Becs

Becs — Wed, 07 Oct 2009 15:50:23 +0000

Oh my gosh!!!! I am so happy for you!!! Finally some hope!

By: sstephen

sstephen — Wed, 07 Oct 2009 10:30:25 +0000

YEAH! You sound tons better.

By: A Lurker

A Lurker — Wed, 07 Oct 2009 04:31:22 +0000

Katie,
Good news about the low pressure measurement.
I must say though, I’m appalled you had to endure 5 sticks !!
You might ask about having your LP done under fluroscopy when you go for
CT myelogram/RN cisternography. Removes the guesswork and makes the procedure painless. Also, in the event your leak is not easily ruled in or out, Dr. Wouter Schievink at Cedars Sinai in LA is the “go to” guy for finding (and fixing) csf leaks. He even attempts and often manages to fix the ones he can’t find.
All the best
A Lurker

By: Kristel

Kristel — Wed, 07 Oct 2009 04:13:32 +0000

I am over the moon excited for you! Hooray for hope! Hooray for reason! Hooray for sweet, sweet vindication! I am SO proud of you! And for as much pain as your and given how scary the ordeal was (and what a trooper you were!) in you sound wonderfully optimistic and that is just fantastic! I really think this is going to have a good outcome for you. I really do.

And way to go McSlappy- because all doctors need to have a ‘Mc’ nickmname, as per Grey’s Anatomy- for being a knight in shining armor and to your mom for being mom-tastic… and for the cookies!

By: Sarah @scunning

Sarah @scunning — Wed, 07 Oct 2009 03:58:02 +0000

I’m so glad that they found a possible diagnosis. That puts you that much closer to some relief.
Now, take it easy and don’t stress for a couple days. Don’t let Dr. Slappy drive you to crazy either.

By: Sue G

Sue G — Wed, 07 Oct 2009 03:05:05 +0000

Ah, your story brought back such pleasant memories for me. The night before my nephrectomy, I had to have an embolization to kill the kidney. They needed to put in an epideural for the surgeries. After a resident and a fellow each tried for two and a half hours to get a needle in my spine, I asked for an attending. First attempt: IN.

As for you, young lady, congratulations on finding out what we already know…you are NOT crazy, you do need help, and you are finally getting it.

Prayers answered.

By: Diana

Diana — Wed, 07 Oct 2009 02:47:24 +0000

So glad to hear it’s over and you’re doing okay… sorry you had a rough time though!

But as someone who has been there before… I was always told when I was dealing with the pseudotumor pre-shunt (and learned in school) that normal ICP is 5-15 mmHg so I’m not sure how that works into your equation… But thought I would throw that out there.

Anyway, hope you aren’t in too much pain and things start looking up with school!