This is incredibly long guys and for that I apologize (there's a bit of humor thrown in there though). But, please read through it, and tell me if anyone's ever had any experiences like this, or heard of anything like this..or knows of any options other than diamox (my phone keeps autocorrecting that to diamonds. Um, thanks iPhone, I wish!) or shunts? I've had 9 shunt surgeries in 9 months.  

Anyway. Please try your best to make it through this whole post. It's a lot, I know. But I really really need some advice or insight!

I was diagnosed with with PTC back in December 2010, and had my first shunt (VP shunt) placed back in June 2011 (after 6 months of failed diamox). I guess I wasn't a real "textbook" case in the sense of the word (never been overweight, never been on birth control, never been on high doses of vitamins, never consumed too much aspartame..things like that), and apparently I'm still not textbook. My shunt worked wonders for almost 5 years to the day. Then this last Memorial Day weekend, it failed. It totally over drained, completely collapsed my ventricle and I had to have emergency surgery to remove it. The new surgeon (my old surgeon and I butt heads on too many issues so I was no longer under his care) suggested we just pull the whole shunt system, start fresh and do an LP shunt. Sounds great to me. First mistake on my part. He wound up having to do a laminectomy (which to this day I'm still having back trouble from) because they couldn't feed the catheter through my back to my belly without it. 

That failed within days. I had had golf ball sized lump on my belly and a softball sized lump on the side of my back. Both very clearly fluid building up. So, had a revision. He said the catheter was "completely clogged with blood" - something he had never seen. Well, lumps never went away so about a week later has surgery #3 to pull that shunt system completely. This time he suggested we try a VA shunt. The whole idea of it made me a little nervous but I want with it, because hey - he's the surgeon. He is one is the absolute BEST on Long Island and if he thinks that's going to get me back to a normal life..awesome. Let's do it. 

Surgery #4: VA shunt goes in. They also admit me to ICU for 5 days with an external icp probe to measure my pressures (not a bolt, much much tinier than that) and I actually end up feeling kind of okay for the first time in awhile. Not great, but okay! However, something just felt "off". I kept telling my body was just healing, now I know it was my bodies way of screaming at me "WAKE UP LADY SH*T IS ABOUT TO HIT THE FAN" 

I actually felt so good though we were able to go away camping for a a few nights with our best friends in August. It finally felt like I was getting my life back. Wrong. 

The night we came home from camping. I started passing out. So back to the ER we went (much to my resistence. But after passing out at home 3 times, apparently you lose the right to refuse lol) they admitted me, did every test under the sun (MRI, Ct scan, 48 hour EEG, lumbar puncture- really. Everything. Except a cardiac workup. Duh. (And I had a VA shunt) My surgeon finally said "maybe there's such a slow leak in your spinal dura from the laminectomy we did (2 months ago at this point). Let's do a blood patch, if I can find a radiologist to do it, because it's contraindicated after a lami, and we'll see if that helps. Um. Doesn't sound plausible but I'm down for anything at this point. Did the blood patch. Then they think "hhheeeey maaaaaybe..we should look at her heart since the shunt is in the right atrium (*and since she's been screaming that from the rooftops since she got here* obviously that was added because I hope that's what was said behind their closed doors)

and would you look at that.  The catheter in my heart was a little* (*waaaaaay) too far down and everytime my heart a was beating, it was literally hitting the inside of my heart cavity. 

Surgery #5 they go back in and pull the shunt tubing back a teensy bit so it's not trying to cause a vagal response every time my heart beats (that sounds like an awful 80s song) . and while they're in there, they open up my head incision again, just to make sure the shunt system itself looks fine. (Keep this mind. It's important for surgery number 6). 

Go home. Again. FEEL PRETTY GOOD. For a fairly long stretch again. I didn't see the inside of a hospital from September until the end of November. I was actually getting ready to be cleared to return to work (I work as a registered nurse) and living somewhat normally.

November comes. One morning I wake up with. THE. WORST. HEADACHE. OF. MY. LIFE. At 3am.  Like, had to basically just punch my wife awake because I couldn't even speak (oh, did I mention I'm a lesbian? Surprise!). I couldn't even move enough to walk to the car, so she had to carry me (aw, how romantic, right?. Except I was vomiting all over her) 

She pulls the wife card and says "listen. I'm not taking you back to **** (hospital name redacted because i dont want them getting like angry letters or anything). I can take you to Columbia Pres, or NYU. You decide." Since I couldn't speak, she decided on NYU since she's also a nurse within that system and then could come see me on lunch breaks and stuff (ok now you can "awww")

they see me almost immediately in the ER. And the first thing they notice? The wound in the back of my head that the previous surgeon decided to "just open up and check" has completely dehisced  (for those non medical geeks out there, it just basically means a surgical wound reopens on its own after healing) and part of the shunt was exposed. in my case, there wasn't actually enough tissue back there to properly close the wound. So it just opened back up after. And then everyone missed it lol but then they needed to find the cause of my headache. Did some tests. Turns out the shunt system in my head was just completely broken and useless. So back we go to the OR. This time with a new neurosurgeon, and a plastic surgeon to fix the hole in my head (guys. This was totally not the first way i thought I'd be having plastic surgery. I was convinced it'd be my boobs. I'm just saying.) 

Surgery #6 he takes the whole shunt system out, puts a new shunt in (VP this time) and adds as a fancy shmancy shunt-assistant (don't ask me what it does because I really don't know. I just know it feels like a row of marbles behind my ear), plastics closes up my head, and I wake up with the same old boobs. Damnit. I finally think I'm good as new. Just you know, without my new boobs lol

Surgery #7 and #8 actually happened on the same day.  Again. Bad headache (beginning to sound like the story of my life. It'll probably be the title of my memoir) get in touch with my surgeon he says go to ER. I say..I'll give it a few days, it's thanksgiving! I've got things to do, turkeys to eat and too much wine to drink. Like an idiot. lol finally get dragged to the hospital the Sunday after thanksgiving (and for the record, I looked like a total psychopathic basketcase who looked like she hadn't showered in like a week and hadn't stopped crying for god knows how long, because 2 days before this we had to put my puppy down. aaaaand. Now I'm crying again) so they all pretty much see me coming and everyone tries to look busy because they know I'm a nurse- and we nurses, are absolutely, notoriously the WORST PATIENTS EVER. So to every healthcare professional who has ever tried to take care of me, I publically apologize. Finally someone sees me, neuro team comes and they order a shunt-o-gram. They didn't think it was too comical when I laughed at that name of the test and told them it sounds like a game on the price is right.  They're so dry! 

They do the shunt-o-gram and the catheter in my belly was completely clogged. Couldn't even get the dye halfway down it. Sooooooooo I start crying on the table when I see the whole neuro team come in and start looking at the screen, because you know that's about to be a bad day. Tell me I'll be going back into the OR and since the catheter clogged so quickly it would probably just happen again. So they recommended another VA shunt. I reminded them of the passing out and they promised (I made him swear on his shunt-o-gram machine, which actually made him laugh) that they'd make it short enough it wouldn't cause me to pass out. So I go to the OR. Uneventful surgery. Go to post op. Go up to the neuro floor. Where I FINALLY get a portable chest X-ray done (should have been done in the OR or in PACU but the machine was unavailable). 

They made the catheter short enough to not make me pass out alright. But it was so short it actually popped out of the space it should have been in, and was coiled in my damn neck. 

So. Back to the OR I go. For surgery #8. Only within a few hours of coming out of it, to replace the catheter. 

That was November. I felt really really good until like.. a week and a half ago. I went back to work, we booked a vacation (we leave Thursday. Yaaaaay us), life was finally really good again. 

Was referred to a regular neurologist since I didn't have one on my team, and she happens to be a headache specialist. Which is exactly what I need. Since they've gone in and mucked around so much in my head I have pretty constant headaches. Went to see her, but during the day, had a worse headache than usual (*the follow up to my memoir) but hey! I could deal! She just gave me a whole arsenal of medicine to help combat them! NONE of which are narcotics which made m even HAPPIER because I hate those damn things. (Did you know most hospitals stopped giving IV tylenol? That was like my go to drug when I was in the hospital. Keep your morphine, keep your dilaudid, give me my IV Acetaminophen! Apparently it's almost $2000 a dose. So hospitals would rather push the hard stuff. Again, sorry to all nurses and doctors, that I have to basically make you beg me to take narcotics for pain relief. I just really hate that high loopy feeling!)

I'm digressing. Head gets worse. Wife insists we go back to the ER. I finally conceded. At this point as soon as I was in the door they immediately know to order a CT of the head and a shunt series. So that's literally done within minutes. Then some new guy I've never seen before walks in and goes "the catheter twisted in your neck and needs to be replaced because it's preventing the csf from flowing freely. I'll be taking you to the OR within the next 20 minutes because we have an open room" Uh 1. Who are you? 2 where is MY surgeon? 

Before he introduced himself and told me his name he literally said to me "I'm the pediatric shunt master" I almost requested a new surgeon. But I didn't I just said "pediatric? Oh that's sweet. But I'm not peds, i'm 31. Soooo.." to which he said anyone well versed in shunts can do them on anyone of any age. Then he told  his name. (BED SIDE MANNERS PEOPLE. ITS A REAL THING!! That'll definitely be noted on my press ganey survey.)  And MY surgeon was on vacation. Of course. 

So. Surgery number 9 was just last week. Shunt catheter replaced by the pediatric shunt master. Feeling pretty good. But afraid to get my hopes up. Still going away though. So fingers crossed I don't have to post an update from a hospital overseas. - see above. Advice? Similar experiences? any ideas for alternative therapies?