Hydrocephalus Support Group

I tried to put "What's your scaries hydrocephalus experience" in the topic line, but there wasn't enough room. Anyways, this is a surgical terror story.

In one of my near hundred of surgeries, they had found a pseudo-cyst(basically a pocket of fluid that doesn't get absorbed) at the tip of my shunt in my paritaneal(think that's how you spell it, basically my abdomin) cavity. The only option to remedy the situation was to go in and move the shunt to a different location in my abdomin. Instead of using regular annesthesia, they used only local and a drug that is supposed to leave you conscious, but you don't realize it, so you can talk to the doctors. It's like every second you forget about the moment before, kinda weird, I know. Anyways, they didn't give me enough because the nurse didn't feel comfortable giving me such a high dose, even though the surgeon requested it. Anyways, it never worked. I was awake from the moment they started the incision until right before they closed me up. I kept begging for them to just put me out, but they wouldn't. I was young then, so I was crying then, but they wanted me to stay still so they could do the procedure, kinda hard when you feel them reaching around in your abdominal cavity! They mentioned they wantedd to take the shunt partly out and place it somewhere else, but I pleaded with them not to do it. So they didn't.

Ironically, and fitting, the surgeon's name, is Dr Payne.... I know it wasn't his fault, it was that btch of a nurse. Had he not been a Dr that had performed several surgeries on both my parents bad backs(herniated disks), and several surgeries on me, I probably woulda sued, but you usually don't sue the Dr's you like. Being in the financial situation we were in, we REALLY could have used the money(still could, both me and my mom are disabled, she has MS and a really bad back), but we're not that kind of people. Needing doctors the way we do, we don't need to go alienating our selves from them to where they're afraid to treat us.

Oh yeah, one time, there was this gay(male) nurse that kept wanting to give me sponge baths

Not that I have anything against gays, my best friends brother is gay, we were friends growing up, but I draw the line when they want to bathe me...

Anyways, that's my horror story, anyone else have a really bad experience surgically or otherwise?

Post edited by: HydroPioneer, at: 06/14/2009 04:57 AM

Hi FishinMike,

You are right that must have been scary. How old were you at the time? Can you explain in more detail what it was like to feel all those sensations inside your body and noggin. I thank you for sharing your story with us. I guess mine would have to be when I was verey young maybe about 7 or so and I was operated on and released the very same day due to a nurses shortage due to a strike. They allowed my parents to take me home since they had so much experience in the world of hydrocephalus since my birth. They said I would be better watched at home and if anything arised just call emergency. I am guessing everything went alright as I would not probably be here answering your question.lol

Thank's for sharing again. Ron(HydroPioneer)

FishinMike , Wow yeah i think he just wanted to get his jollies there . I mean come on . anyhow actually my hospital stay was not for my hydro that was scary though it was for the brain aneurysms. I did not have a lof of hospitals stays for that just lots of rehab trying to learn how to balance and walk .

Post edited by: grafxbydiane, at: 06/14/2009 08:02 AM

I was in my mid teens at the time, so it wasn't easy to get me crying, but it was a horrible situatin and I was so afraid that I think anyone in my place would have had a hard time not crying(I wasn't sobbing, I was just sort of hyperventilating and had teers filling my eyes) or atleast being shared shtless. There was a movie about this subject with Jessica Alba in it, I remember cause she's such a hottie. I believe it was called "Awake." Given the extensive amount of surgeries I've had and the number of years I had steady spiking ICP(inercranial pressure)(sometimes up to 10x the norm I believe, they had me on an EVD[external ventricular drain, basically they drill a hole in your skull, using the nedicine that was used for the above surgery and put a tube in your brain to measure the pressure in real time] luckily they gave me almost enough of it to keep me semiconscious to here I only remember them drilling the hole in my head, it was like I was awake, but still asleep,I don't remember any visual, but I remember the grinding feeling of the bit drilling through the bone), my memory really sucks. It's gotten better since I was younger, but it still has a way to go. When I was younger i couldn't remember simple lists, or anything like thatexcept for the stuff that had been beaten into my brain prior to the surgeries.

As far as the sensations go, I don't know if it's something you can descibe. It was more of a pressure feeling, as you don't have nerve endings inside your body, atleast I don't think you do(I couldn't feel any pain inside. All I could feel was pressure and the pain from the incision as it was only a local anesthetic. It felt like they were stretching the hole from the incision as they were moving everything around in search of my shunt. The incision is about 3" long, verticle and right in the middle of my stomach. They eventually gave up and had put me through that for nothing.

I don't think he enjoyed putting me through that, but the nurse wouldn't let him give me enough medicine, she thought it would be "overkill." She's lucky I didn't sue her butt. I probaly should have atleast put in a complaint, but I was young at the time, like I said, in my early to mid teens and didn't really know about it and was going through my own ordeal with the hydrocephalus and related conditions(pseudo tumor cerebri, or idiopathic intercranial hypertension as it's known now days.)

I was lucky in the fact that I lost consciousness right before they stitched me up... Glad I was saved that horror....

Post edited by: FishinMike, at: 06/15/2009 01:04 AM

Post edited by: HydroPioneer, at: 06/15/2009 10:36 AM

I think the worst experience I've had really isn't THAT bad..

I was in the OR, waiting for the drugs to kick in, all the Dr's are around... and the OR nurse (she was so nice) but anyways, all of the sudden my hand started to feel like it was burning because of the medicine.

Oh waiit! I just remembered.. the day after the surgery (which left me with 3 incisions: head, neck & abdomen) a nurse comes in and says: "you've been booked for a shunt series"

So we go down and the radiologist says to me "sweetie, can you turn your head a bit more?" (ergo making me pull my neck more) then she says "hun, a little more, can you turn your whole body for me?" (uhmm abdomen?)

by the end of it i was crying, and the nurse had to help me get up from the table.

Yes MusicGirl,

I can recall x-rays having to be taken and having to stretch my arms beyond my limbs around the that cold slab they place in the machine and then they tell you place your neck on top of it and then they proceed to raise it 8 feet. lol Oh yeah I can recall those days.

Thanks for sharing with us.

MusicGirl, I've had a ton of those x-rays. It as though they think you're a contortionist or something.

About the burning, I remember once when they had an IV in my hand or wrist, can't remember, being put under for surgery they started the annesthesia and it started burning so bad that at the time it almost made me cry

Worst experience I had was during a laparoscopy prior to finding out I was pregnant. (My hydro was not dx'ed yet.) They had found a "growth" on an ovary (or so they thought) and needed to scope to check that I didn't have an ectopic pregnancy (which I didn't -- baby was fine). Because no one knew that surgery would be scheduled, I was eating lunch when the surgeon and anesthesiologist walked in and decided to do surgery right away. They took away my lunch and started prepping me for surgery within an hour.

First, the anesthesiologist made me swallow the tubes (something I thought was routinely done AFTER you were knocked out). Then I could hear them talking. "Is she out yet?" "Yes, she's out. You can begin." I tried to scream or move and somehow signal them that I was still awake, but then at that moment of terror, I went out.

Then, when the anesthesiologist was pulling the tubes from my throat after surgery, I vomited and nearly choked to death on my lunch. Thankfully, he was able to suction it out in time. It was a HORRIFYING experience!

When I related this experience to other doctors/surgeons they were quite shocked! They had never heard of inserting tubes while someone was awake and asking the patient to swallow them.

That was my worst experience. Glad it was never repeated!

~Mary

Wow! that was some experience thanks for sharing it with us.Ron

KwiteKontrarie. yes especially after you had food to do surgery what!!!!!