Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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JazzyO 07/14/2009

well things have been going better since my LP shunt (programmable) and I see my NS to get it adjusted again on Friday.

Here is my problem, I keep thinking that something will happen or that the adjustment won't work. I hate that I think like that and was wondering since I had 4 surgeries in 8 months plus dealing with one thing after another (like for the past 5 months where on an average I could only stay up out of bed for 2-3 hours per day from the over shunting) that I am just used to feeling so crappy. Am I normal or am I really messed up? I swear I should be a case study, lol.

deleted_user 07/14/2009

Jazzy - I would say that, especially given everything you've been through, your feelings are perfectly normal! Heck I find myself feeling the same way at times and I don't have the history that you have. I've just read so many horror stories about problems with shunts that I find myself thinking the worst at times. Feeling so much better these days almost seems too good to be true! Nevertheless, if the shunt seems to be working well then you should try not to worry - hopefully they've finally got it right this time!

deleted_user 07/14/2009

Of course you feel like that. Anyone would! I'll be praying that your fear is totally ungrounded and that you get good results from the NS appt. You deserve a break!

JazzyO 07/14/2009

thank you KSMama and Autumn, I didn't want to post about it since it seemed so silly, but decided to and now I feel much better after you both posted me! You truly are angels, thanks you for your support, GB, Jazzy

Monkeymom3 07/14/2009

There is nothing weird about what you are experiencing. Given everything that you have been through I think it is perfectly normal to be nervous that "the other shoe is going to drop" (so to speak).

I just couldn't be happier for you that things are going well. As for me, I am absolutely terrified of getting a shunt due to all the horrible things I have heard about them. So, any good news you guys have to put out there about shunts is welcome. (Not that I'm being told I need to go into the OR anytime soon.)

So, anyhoo...you may be weird, but not because of this...LOL!

Love ya,

MM3

JazzyO 07/15/2009

I'm rofl MM3!

Thank you dear heart, I know it is so scary to think of getting a shunt but after going through hell and back (yes, it does have a revolving door) it is worth it now that I have the programable LP shunt (knock on wood) with a NS who seems to know what he is doing (again, knock on wood). Of course, if something happens I could def. be singing a diff. tune, lol.

You always make me feel that no matter what, I can vent here and all will be fine, plus you truly put a smile on my face. You are an awesome woman and it makes me so upset that you (we, all of us) have to suffer from this crazy disease.

I am getting better and need to focus on that and not worry about if something happens....how is your back doing? I hope it is better.

Rest and take care of yourself, you are very precious! Mluv back to you, Jazzy

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