Hydrocephalus, VP shunt

Anyone else here have a shunt, or hydrocephalus or know anyone who has had one?

I'm really looking for someone who might be able to give me some feedback...

I'm really scared at the moment. I've had exactly two shunts in my life (which is unheard of at 23!). One from about a week old to just under 2 years old, and I've been on this second one from that point to... well, I'll be 24 next month!

Unfortunately at about my age the shunt either malfunctions, or needs a revision or you wind up with an infection.

This is where I'm trying to find someone else who may understand...

I've been having weird physiological issues lately. They could theoretically be symptoms of any number of things - but since I'm paranoid and slightly a hypochondriac ... I think my shunt might be messing up on me.

I just really don't need the added stress of dealing with this right now! (Then again, if it is malfunctioning I'll need surgery which is stressful in itself!)

I'm sick of being "disabled" all the time. I'm trying to reach my neurosurgeon and he's freaking impossible to get ahold of. His receptionist is also horrible at returning phone calls. If it is my shunt and I wind up with brain damage because they gave me the run around when ALL I want is a CAT scan ... I'm going to be very, very, pissed.

In something totally unrelated to shunts and hydrocephalus, yours truly has an appt with a urologist next week. I hate doctors appts. I've been on too many antibiotics and unless the current round of them works properly... I'm thinking I'm working on a kidney infection. If pills don't work to cure it, I hear the other option is inpatient IV antibiotics. I hate needles and hospitals.

For a "stable disability" there are far too many issues. And pain, lots of freaking pain. (Which reminds me, I also need to see a chiropractor for my never ending neck/back pain. Sigh again)

Thanks for listening to me rant.

rant away

I listen

I have hydrocephalus and a VP shunt.
I have 12 revisions, but my last one was like 10 years ago

rant away... I know it's hard.
my PM box is always open if you need to talk to someone who truly understands.

... stay tuned...

I'll have an update, for better or for worse, later today.

UPDATE. MAY NOT BE PLEASANT FOR THOSE WHO DON'T LIKE TALK OF MEDICAL PROCEDURES AND NEEDLES.

So, yours truly went to the ER Tuesday morning. I didn't leave the hospital until 6pm tonight. I got admitted folks, and it was very scary and kinda traumatizing.

I had a(n):
-CT/CAT scan
-X-ray
-MRI
-Blood drawn
-Other tests done
-Fluid taken from my shunt (HURT A LOT)
and then today I had the most painful procedure *ever* called a shuntogram.

Good news: All came back negative (that's good)
Bad news: I wasted my time in hospital and got jabbed by needles ninetybillion times.

So, my headaches are not a result of a shunt problem. Which means no surgery needed for me, WHEEEEEEE!!

Glad to hear the shunt is working okay. Hope you find out soon why you are feeling poorly.

Owww!!!
I hate shuntograms and having fluid drawn!!!
Sorry you had to go through that.
Glad that all tests were negative thou.

Thank you both!

I'm just so incredibly glad to be out.

It's a bit scary though, for the shuntogram... the technician had NEVER seen my type of shunt before. And told me as such, great thanks for making me feel worried as hell.

THIS NEXT PART COULD GET A BIT GORY OR DISTURBING SO READ WITH CAUTION IF YOU DON'T LIKE DISCUSSION OF NEEDLES/MEDICAL STUFF.









Jabbed me ninety billion times to try to get the needle in with me screeching in pain. Finally called my neurosurgeon to do it, who got it in in the FIRST TIME. (For all those who don't know and can't imagine what I'm talking about ... imagine a needle, being inserted into the SIDE OF YOUR HEAD through your skin. Without numbing or any sort of pain relief, and then them moving it around to actually try to find the spot. And then imagine them sticking fluid through the needle like passing a rock under your skin and down your neck. PAINFUL CRAP)!

(Apparently my shunt was discontinued almost as long ago as I've had it... something like 20 years ago, and I got it 22 yrs ago!!)

thinking of you, Christina!

So. Haven't been able to sleep at night since getting discharged from the hospital. So basically a week ago today. I freak out and become a sobbing mess actually. On top of being unable to sleep in certain positions because either my shunt/head hurts, or I freak out since that's the way I had my head positioned for ninety billion procedures. I can sleep during the DAY but not at night. Which does pose a problem...

Talked to two counsellors and my psychiatrist. Having phantom pains, freaking out for no good reason. Jumpy. I keep imagining needles... it scares me.

I never knew that you could have "traumatic stress" without the PTSD label affixed (since one of the requirements of THAT diagnosis is symptoms lasting 6+ months. If this happens for that long, I'll go nutso).

So. I now want to go back to the neuroscience unit at the hospital and tell them that they're HORRIBLE because people should not be admitted for 48 hours and leave as emotionally messed up as I am. AND I DIDN'T EVEN HAVE SURGERY. I know I wasn't emotionally totally sound coming IN, but this is ridiculous.

:cries: :curls up in a ball:

But it is 2am, and I'm awake. Still. Going to try to tire myself out, maybe get to sleep before 3am if I'm lucky.

Oh, Christina, I hope something gives (not your shunt :-) and you can relax and sleep better without horrible images and worries. I had my one good ear "go" yesterday afternoon (wax impacted) and my doctor's appointment isn't until next Friday so I'm not having a good time not being able to hear as well as usual for me.

I have never had a good visit to a hospital, when my appendix burst and things went downhill from there for 5+ months, I still remember the 14 hours in the ER a couple days before I was admitted for a week, only a couple months after my surgery; neither of the visits helped anything! If I use to be afraid of hospitals before I'd been in one, I have much more information now and am more afraid than ever.

Got an appt with the neurosurgeon again in a month. Sad irony, I got the pills for my supposed migraine (posted in Health Support about that) and voila! The headaches have basically left WITHOUT me having to use even one pill.

I feel like a basketcase. I stayed awake until 5am yesterday and it's now 1:26am again and although I know I *should* sleep, I dont know if it will happen. I was given sleeping pills but I really dont want to use them unless absolutely needed, you know?

I never did like hospitals before this. A necessary evil in the case of my disability, then I worked in one in highschool (co-op) and then I was also volunteering on a youth forum at the hospital with other youth w/disabilities... but haven't been admitted overnight in YEARS.

I pray I never have to again. I'll go nuts if my shunt actually stops working anytime soon, I will not go through all that agony unless I'm freaking sure it actually IS my shunt!

Thanks Perna.