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Mon, Jun. 15th, 2009, 12:52 pm
fairyprinces: (no subject)

I know that it's not right to have a pity party about this but sue me it's about to happen so if you don't want to read it, just skip right on over this entry. I have spent the past 23 years of my life being the sick child in my family. I mean I have good weeks, even months but most of my life I have had to be careful because everything makes me sick or can lead to it. Today was just one of those days when I wanted to scream from the roof tops how much I hate HYDROCEPHALUS!! I wish I could just be normal for a minute. For god sake I can't even sneeze without getting a headache, that is about crazy. It was one damn sneeze and I have offically been suffering for 2 hours now. I took my medicine and all I want to do is take a nap. I hate hydrpcephulas and headaches. Ok rant over.

Tue, May. 26th, 2009, 01:02 pm
violet_tigress1: Curious

I was just wondering... does anyone else here had swallowing problems? My dysphagia is unrelated to Hydrocephalus. I was just wondering if it was possible for Hydrocephalus to affect swallowing.

Seems like I never even heard much about dysphagia until 5 or 6 years ago, and there aren't many resources aimed at the people who actually have it, as opposed to caretakers and therapists.

Even here on LJ, where there's a community for just about everything else, there wasn't much. I finally just created dysphagia_sucks.

Wed, Apr. 15th, 2009, 12:34 pm
mandylicious: VA shunt question

Quick question about my relatively new VA shunt: I've noticed that sometimes when I lift a heavy object (say, my extra-large cat) I get a twinge in my chest long the shunt track that feels a bit like a pulled muscle. It never hurts, exactly, it just surprises me, and it always goes away within a few minutes. I called my new neurosurgeon to ask about it and he made it sound like that wasn't common, but that it also isn't anything to worry about. Just wondering if any of you with VA shunts get that tweaky feeling in your chest sometimes, and if so whether your doctors have advised you to do anything about it. Thanks! Hope everyone's feeling good.

Mon, Apr. 13th, 2009, 09:47 pm
nightshade1972: The Dream

I had The Dream again Saturday night.

In this dream, I've just had a major seizure, I was unconscious for a while, then I wake up enough to realize I'm being wheeled into the OR for a shunt revision.  That's terrifying enough in itself.

What the lay person probably doesn't know is that anesthesia isn't just one drug, but a cocktail.  First they give you something to make you drowsy, so you're already falling asleep, in effect, before they've wheeled you in for the actual surgery.  Then they give you a paralytic agent.  This drug immobilizes you so that you can't turn or move or thrash around while they're trying to operate on you.  When they do that, the diaphragm muscle is paralyzed, so they have to put you on a respirator.  Then they give you the painkiller/final dose of anesthetic, and this is when you actually fall asleep and they can start the surgery.

In the dream (I suppose it would be more accurate to call it a nightmare), the paralytic agent works, so I can't breathe on my own and I can't talk, but the painkiller/sedative doesn't, so I'm wide awake and I can feel everything they do.  The actual *brain* surgery isn't so baad, since there are no pain receptors in the brain, but feeling the doctors yanking the tubing out of either my heart or my abdomen (right now I have a VA shunt, I've had VP shunts in the past) gives me the heebiejeebies just thinking about it, and in the dream they're actually *doing* it.  And I can feel every slice of the knife and every yank of the tubing.  And there isn't a thing I can do about it, since I can't move and I can't talk.

I usually wake up from the dream right about the time the doctors realize I'm still awake.  But they don't realize this until after the procedure is finished and they're stitching me up.  And I wake up from the dream because my heart is pounding and there are tears in my eyes.  And I can clearly remember the dream, which just makes me more upset.

I'm actually pretty calm writing about this now.  But I had to tell somebody.  The fact I'm still thinking about it just stresses me out more.  I think I had the dream this time because hubby went out of town early Saturday morning, so I spent most of the weekend alone.  I have a terrible time getting to sleep when he's not here.  But he doesn't need to know that.  He has to travel for his job.  And I'm not gonna make it harder for him to leave by telling him about this dream.  But like I said, I had to tell somebody.

Tue, Apr. 7th, 2009, 11:31 pm
nightshade1972: Neurologist visit

Saw the neurologist today.  No drama (whew), he actually took me seriously about the dizzy spells and how I choose to head them off.  He thinks the difficulty I've been having with the generic Keppra has less to do with any binding agent watering down the drug, and more to do with the fact that there might actually be slightly *more* Keppra in each pill.  He also agreed that I should take the Lyrica 50 mg tid instead of 75 mg bid.  So, all in all, a productive visit.

Thu, Feb. 26th, 2009, 04:56 pm
nightshade1972: Tap...tap...this thing on?


I know I tend to be a rather opinionated, "in your face" kinda person. 

I've been checking back here periodically to see if anyone's done anything since my last post, and it looks like a ghost town in here :-).  I hope everybody's healthy and happy.  I hope none of the "usual suspects" have had any significant medical crises.  I know sopaltenbass is okay, since we communicae on a fairly regular basis.

What I'm getting at is, A, have I made this community so distasteful, because of my personality, that nobody wants to post here anymore? B, are the usual posters okay?

If it's A, I heartily apologize.  If it's B, I'm very sorry, and I hope this community picks up again soon!

Fri, Dec. 5th, 2008, 07:59 pm
nightshade1972: Opthalmologist Visit


In the interest of not having to repeat this another half dozen times, I saw the eye doc today.  Here's what he had to say.

I saw Dr. Price today.  He's the original guy my neurologist, Dr. Gaffney, referred me to.  Dr. Price, in turn, had referred me to a second opthalmologist, Dr. Coats.  After  a couple of visits, Dr. Coats advised that I should continue my care through Dr. Price.

So anyway.  For about the last six months I've had what they call a prismatic film over the back of my right eyeglass lens, which Dr. Coats prescribed.  I also wear progressive bifocals.  Not only has the film started to come unstuck from my right lens, but apparently the film's significantly weaker than it should be.  Apparently the strength I have is a 6, and Dr. Price thinks I need an 18.  Additionally, he wants me to have an identical film placed on the back of my left lens as well.  I can keep the same eyeglasses, I just need new, stronger film for both lenses.

Now, I know they think they're doing me some sort of favor by letting me "try out" the film, instead of having me get an entirely new pair of glasses with permanent prismatic lenses.  Dr. Price and Dr. Coats both tell me that the prismatic lenses would be significantly thicker (i e "coke bottle" lenses) than standard eyeglass lenses.  Dr. Price also seems to think I should have surgery to correct the strabismus (drifting) in both eyes.  Then he thinks I should have laser surgery to correct the nearsightedness/astigmatism.  He also agrees with Dr. Coats that I'm no longer a candidate for contact lenses. 

What they don't seem to grasp is that my insurance benefits for the year are about to run out.  After Jan 1 the whole "satisfy the deductible" thing starts all over again.  A, I can't afford surgery.  B, I *could* afford to get new glasses, now, because EyeMasters (where I got this pair) is having their 50 percent off sale right now.  I have a six month old script for a different eyeglasses prescription than what I'm currently wearing, precisely because I couldn't afford to get it filled at the time Dr. Coats wrote the script.  And apparently the film really is meant to be a simply temporary, "try it out" measure; Dr. Price's associate wasn't surprised when she saw that the film on my right lens is literally peeling off.  So, if they tell me, say, two months from now that I really should either have the surgery or get the permanent lenses, I won't be able to do either, most likely, because we won't have satisfied the deductible for the year yet.


Sat, Nov. 22nd, 2008, 08:10 pm
violet_tigress1: Question for the ladies

I have kind of a strange problem. My bra keeps poking me. It took me ages to realize that my shunt tube passes right under the underwire of my bra. Does anyone else have that problem? It's strange that i only hurts sometimes. Besides not wearing underwire, does anyone have any ideas?

Tue, Nov. 11th, 2008, 12:31 pm
violet_tigress1: Ventricles "unslit?"

I meant to post about this right after I found out, but somehow I just didn't. A few weeks ago, I had my regular follow up MRI. It was my first after getting the magnetic shunt, and I had an appointment with my neurosurgeon right afterwards.

He noticed something a little strange. All through my shunt failure and the two years afterward, I had slit ventricles. They never changed. After my MRI, he noticed that they'd gotten a little bigger, and wasn't sure what to make of it... whether it was a good thing or not. I seem to be doing pretty well, though, so maybe it is...?

Mon, Oct. 27th, 2008, 05:15 pm
sarakadynsmama: Hello I'm new

My name is Sara, I'm from Lincoln Park, Michigan. At the age of 19 i found out I was pregnant. I was sooo happy!!! At 22 weeks gestation I went in for my formal ultrasound. I found out the next day that my son had hydrocephalus. They told me his ventriles were only measureing slightly larger than normal. Within a month, they had gotten much bigger and they diagnoised him with Severe congenital hydrocephalus. They told me he wouldn't make it and to consider termination. Which wasnt an option for me. So they said he may not make it if he is born. Well the day he was born happened sooo fast. I went in 3 days before and they couldnt find a fluid pocket becuase his head was so large. Well,  the day of my cesection came and i was scared!  He was born, he cried and he survived. 10 hours later he was givin his first shunt and he survived. My son is 15 months old. His only delay is gross motor skills. He is talking, smiling laughing and just amazing little guy. He has a siezure disorder too and is on 3 medications to control that, also he has a hole in his heart (VSD) and a cyst on his left kidney.  Kadyn has had 9 surgeries....4 revisions and 5 would be EVD rotations or replacement. (my son has pulled his evd out once)

He is doing great! I love him more than anything in the world!!!

My beaitiful sonCollapse )

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