I have Pseudotumor Cerebri. It is a condition which mimics a brain tumor due to the build up of spinal fluid that increases pressure in the spinal column. Fluid is pushed into the cranium and against the brain and optic nerves. I have been trying medications for a year and using spinal taps to decrease the intracranial pressure. But earlier this month, in one week I had three spinal taps. The hospital decided at that point that what we were doing wasn't working. I was on the verge of going blind in my left eye, and I was in excruciating pain.

On Tuesday I had a Programable Ventriculoperitoneal Shunt put in. It will drain the fluid from the ventricles in my brain into my abdomen. This will (hopefully) take away all the pressure and pain for a long time!

I've named the shunt Drano Malfoy because I can't resist terrible puns, and I love Harry Potter.

Proof: Me in ICU- http://i.imgur.com/6KGzbyR.jpg My gross head- http://i.imgur.com/Vi3Q5sA.jpg

Comments: 141 • Responses: 62  • Date: 

NYCBluesFan19 karma

Is this going to let you read my mind? What am I thinking about right now?

shakeadoo449555 karma

I really hope not. People on the Internet are weird. I don't want to know what you're thinking lol

talon16710 karma

Is there a plan C?

shakeadoo44959 karma

Nope, this is it

i5555559 karma

What year is it? Who is the current president?

shakeadoo449542 karma

1964, Lyndon B Johnson

Impal0r8 karma

Have you noticed any alterations of your consciousness or memory?

shakeadoo449517 karma

Due to the condition in general I have. The surgery actually gave me almost instantaneous relief from all the pressure. The only pain I've had is surgical pain. I haven't had any changes in consciousness or memory since the surgery that isn't related to the pain medication.

Impal0r6 karma

Cool, that's good to hear. Get well soon.

shakeadoo44955 karma

Thank you! (:

mozerdozer7 karma

Where does the fluid go once it enters your abdomen?

shakeadoo44957 karma

It's absorbed into the blood stream and then passed out of the body. Spinal fluid is like 98% water. It should be absorbing into the blood stream through the veins in my head, but for some reason that isn't happening, which is why the shunt is there. Shunts can divert fluid into the heart as well, but those aren't as common.

EtherealDreamer7 karma

Has nemo been doing a good job being brave for you?

shakeadoo44956 karma

Of course!

bigfoot134427 karma

How long is the recovery time? Also, why is the bandage on one side of your head (pic1) and the incision on the other side (pic2)?

shakeadoo449511 karma

The recovery time is between 2 and 8 weeks depending on the person. I'm feeling much better.

It must just be the camera flipping the image or something. i didn't notice that. I can upload more gross battle scar pictures for proof if I need to.

bigfoot134424 karma

I assumed it was a camera thing but just thought I would get it clarified anyway.

I'm very surprised by that recovery time. I assumed it would be much longer. For no other reason than its brain surgery though I guess.

Edit: also, I hope you have a quick and painless recovery. And that it successfully does what it should for you.

shakeadoo44955 karma

I thought it would take a lot longer. But it's only been a few days and I'm already out of the hospital, able to shower, and walking around. Mostly there's just a lot of soreness along where they ran the tube, and obviously the staples in my head.

Thank you! I appreciate it!

BIGDIQTAKER7 karma

Before surgery and going through Pseudotumor Cerebri, would you ever hear fizzing or air bubbles traveling through your spine and brain?

I've been hearing fizzing or small air bubbles shooting up from what I can only guess is my spine to into my brain ever since I could remember. It usually only lasts for a second or so, sometimes longer. I've always wondered why I'm hearing this and no one can really tell me or hear them because it only lasts for about a second

shakeadoo44954 karma

I personally didn't have that, but symptoms of this disease can be extremely different from one person to another because it's all about how the pressure effects you personally and how sensitive you are. My only auditory symptoms were ringing, pounding in time with my heartbeat, and just being overly sensitive to sounds.

BIGDIQTAKER3 karma

Thanks for replying, I hear ringing in my ears quite frequently but I just thought it goes along with getting older (I am 29). Also pretty recently I am starting to notice my left eye lid is twitching a lot on its own for no reason and just the other day my left as a whole felt like it was bulging as a whole which was pretty weird and new. I'm not tired and not doing anything different so I'm really clueless as to why this is happened. Does any of this sound familiar in your experience?

Can you elaborate "pounding in time with my heartbeat" part? Does that have to do with the ringing?

It's really cool to hear about the shunt, seems like such a simple solution done in a very cool way with modern technology, I hope to hear you have great results because of it

shakeadoo44955 karma

I have a lot of different kinds of eye pain. My main symptom was thunderclap head aches that made me think my eyes were going to fall out. The pounding is similar to the ringing. It's called tinnitus if you wanted to look it up. It's not dangerous in itself, just annoying. I'm definitely not the person to be seeking medical advice from (I'm on a ridiculous amount of pain killers right now lol.) but if you're concerned you really should see a doctor, a neurologist might be able to give some insite. Neurological issues shouldn't be taken lightly. I waited months to go to the doctor while I was still experiencing minor symptoms because I was scared, but still somehow thought there was no way anything serious could happen to me at my age. Thank you!! It is really cool. It has risks, but I really think it was worth it.

BIGDIQTAKER2 karma

What are the risks if you don't mind me asking

I've always wanted a shunt, but usually for bad gas, sorry if that's over sharing

shakeadoo44952 karma

It's a bit of a list so I hope you don't mind me copy and pasting. Risks include:

Blood clot or bleeding in the brain

Brain swelling

Hole in the intestines (bowel perforation), which can occur later after surgery

Leakage of CSF fluid under the skin

Infection of the shunt, brain, or in the abdomen

Damage to brain tissue

Seizures

The shunt may stop working. If this happens, fluid will begin to build up in the brain again. The shunt may need to be repositioned.

BIGDIQTAKER2 karma

That's a lot to consider, did the people you were talking to mention these were probably small to very small risks?

Or rather I mean the likelihood of these risks happening were low?

shakeadoo44953 karma

Every person is different. I personally, have a pretty high risk of infection. We are doing every thing we can to combat that obviously, but it can happen easily. And I have known several people who have had several of the things on that list happen. It's just not a procedure without risk. But after getting three spinal taps in one week I knew I couldn't continue on like that, and this was really the only other option.

BIGDIQTAKER3 karma

Even though I don't know you, I'm glad to hear you're actively producing solutions to your problem. I haven't been as brave and have been avoiding the doctor myself for a while, but maybe now I'll finally go talk to one.

Thanks so much for taking the time to do this and answering questions, I look forward to hear you're doing great and hopefully when this is over you can manage to get some rest

shakeadoo44951 karma

Thank you very much! The doctors really aren't as scary as they sound. It will be alright, and more likely than not it's a minor problem. You should definitely go!

banksied6 karma

What were your first symptoms?

shakeadoo449516 karma

My first symptom was thunderclap headaches. But when they happened my vision my vision would flip upside down. The first one was in September of 2013. I didn't go to the doctor until January because a I was too scared to. Things progressed very quickly after that.

GiantSpaceWhale15 karma

... Your vision flipped upside down? Can I politely say: What the hell? That would scare me so much. Why and how can that even happen? Sorry, that's just crazy.

Wishing you the best recovery.

shakeadoo449515 karma

I know! It was really crazy. The first time it happened there was almost a month until it happened again. But then it started happening almost daily. So for a little bit I thought it was just a freak thing that I didn't need to be concerned about. My family and boyfriend were all really concerned about that, especially with me driving. It hasn't happened in the few days that I've had the shunt so fingers crossed that it won't again!

Thank you!

webwulf3 karma

It took me about 5 days to see a doc after a friend told me to go.

shakeadoo44952 karma

Some of us are more stubborn than others lol

webwulf3 karma

The headaches I got were very sudden and would drop me to the floor. I thought I was being stubborn for waiting that long. It was a week from the onset of symptoms to surgery. I had a colloid cyst that had gotten quite large.

shakeadoo44952 karma

My progession onset was slow compared to that. It has been over a year since diagnosis to surgery. I'm sorry to hear about your experience. That sounds terrible. People who only get the occasional headache can't comprehend what this sort of head pain is like.

webwulf2 karma

It was blinding pain. And it took about a year for the headaches (although much lesser scale of pain) to subside after surgery. Now I just get them occasionally. The only way I can really tell them apart from a normal headache now is that my eyes will turn red.

shakeadoo44952 karma

Why do your eyes turn red?

webwulf2 karma

I really don't know. I mentioned it to my doctor at the time, and he didn't seem too concerned by it.

shakeadoo44952 karma

Hmmm... That seems odd

BrannistheMannis5 karma

Are you in college or do you have any plans for going to? If so what do/will you major in?

shakeadoo44958 karma

I was in college majoring in Social Work. I have decided to take off this fall semester and go back in the spring. I need time to recover without having to worry about making all the financial arrangements for school.

Seamus_OReilly4 karma

You sure it wasn't rocket science?

shakeadoo44955 karma

I have no idea, I was unconscious.

HonestFlames4 karma

How are you after the op?

Have you notice any difficulty with language? My cousin had a similar hedgehog and he purpled out just paper!

shakeadoo44957 karma

I'm doing as well as can be expected right now.

I haven't purpled out just paper since my hedgehog.

Donnaguska3 karma

Will you have to have any follow-up procedures? What's the prognosis at this point?

Hope you're feeling better.

shakeadoo44955 karma

Hopefully the only follow up at this point will be to remove the stitches and staples. There may also be a follow up to adjust the setting on the shunt to control how much fluid is draining, but that isn't a procedure. They just use magnets, which blows my mind. There is a risk of the tubing getting infected or tangling, or the shunt could just fail in general in which case I would have to get a revision. Hopefully that won't happen! Some people have their stunts for 15-20 years without any problems.

Thank you! (:

koen_C3 karma

If they control the shunts with magnets, is there a chance for the settings to change when you're in an area with strong magnetic fields? Like when you pass through airport security.

shakeadoo44952 karma

Yes. I get a special card that I show to airport security and they use just wants and avoid my head. I also have to avoid breaking bad style shananagins.

shakeadoo44953 karma

It's to early to really know big picture what the prognosis is. If the shunt does its job correctly than I will be perfectly normal for years to come. But like I said in the other comment, there are potential complications, but that's true with every surgery.

coolkids53 karma

What's your favorite pizza topping?

shakeadoo44953 karma

That's the hardest question I've been asked so far. Probably sausage. With extra cheese. Like a lot of extra cheese. I'm out of control.

bigkodack3 karma

Hey, i don't know how much this is going to help, but I recently went blind in my right eye (my retina detached). After two surgeries, I'm still blind. But being blind in one eye isn't all to bed. As for a question, can anything be done to make this experience easier for you?

shakeadoo44951 karma

I'm so sorry to hear that. The part of point of doing all this is to try to avoid even partial vision loss. The experience is getting easier. It hasn't been as bad as a lot of people have it.

bigkodack2 karma

I hope everything works out for you!!

shakeadoo44951 karma

Thank you very much!

letitgoelsa3 karma

Did you survive?

shakeadoo44958 karma

It appears so!

adrianmeza10203 karma

On a scale to 1 to 10, how attractive was your doctor ?

shakeadoo44953 karma

Like a 7. Above average, but he was old. Kind of a silver fox.

RusselBrandsDick3 karma

How will this affect you in the long-term? Will this be something that will impact your potential family? (PS I think you are incredibly brave and my hat goes off to you)!

shakeadoo44953 karma

Well this will keep me from being in constant pain, trying numerous medicate that all have bad side effects, repeated spinal taps, and potentially from going blind. So it has a lot of great impacts if it works correctly. I don't know about my potential family, but I think it will be good for them? It's good for the family I have now financially and if it works right it will end a lot of stress. And thank you very much.

_Dead_Orbit3 karma

How are you feeling?

shakeadoo44952 karma

I feel alright. Mostly sore and sleepy. Still some surgical pain. I think it's draining a little bit too much, but that can be adjusted.

_Dead_Orbit2 karma

That's great that your feeling better! And drainage sucks my bandages were disgusting after my surgery.

shakeadoo44952 karma

Oh I didn't mean the incisions, I mean the shunt. The lump on my head behind the incision is the vavle. They can change the amount it drains to control how much spinal fluid I have. They just stuck a special magnet up to my head and change the setting. It's crazy. Magnets are magic.

_Dead_Orbit2 karma

Wow that's crazy I didn't know magnets could do that!

shakeadoo44954 karma

Me either! But now I have to stay away from large magnets or it will mess with my shunt settings. No MRIs, airport body scanners, or Breaking Bad style shenanigans! ):

BeerPowered2 karma

How do you fly then?

shakeadoo44952 karma

I get a special card that says that I have a shunt and they use wants avoiding my head instead of the full body scanner. Some places have newer scanners that can handle medical equipment.

yourdeadcat3 karma

Were you on hormonal birth control and/or overweight when you were diagnosed?

shakeadoo44951 karma

I had previously been in birth control, but not one linked to the onset of this condition (as far as I know). I was a little bit overweight, but they don't believe that was what caused it to onset. I took accutane which is basically large amounts of a vitamin A derivative. My mother also has it and they think that was a factor, even though it isn't normally genetic.

Sambro3333 karma

Were you awake? If so, what did the surgery feel like?

shakeadoo44958 karma

Oh my gosh!!! I can't even imagine being awake for something like that! They were drilling into my skull. Oh gosh. Awful. I had three anesthesiologists that made sure I was unconscious the whole time.

phyrexio3 karma

Which HP movie do you think is the best adaptation? The worst? Why?

shakeadoo44952 karma

I love them all. I just hate the splitting into two movies! I get that they wanted to milk a little bit more money from them, but it drug them both out and put in that fucking break!! The Goblet of fire was probably my favorite. The maze was amazing.

No_sexy_times_for_me3 karma

What bra size do you wear?

shakeadoo44953 karma

You'll have to find the account I use to post to GW to know the answer to that.

No_sexy_times_for_me0 karma

SHAME!

shakeadoo44952 karma

No shame

KosstAmojan3 karma

Neurosurgeon here, hope your symptoms improve and that you're doing well in recovery. Its too bad you didnt have surgery at my hospital, we would have put in the shunt in the back, and the bump from the shunt valve wouldn't be as obvious. Of course, since you're a girl it doesnt make as much a difference.

Where'd you have the surgery done, and by whom?

shakeadoo44951 karma

Thank you very much! I think they wanted to put it in the back, but there was a problem with my ventricles being too compressed to enter there or something? I'm not sure. I'm not a nuerosurgon lol. But like you said since I'm a girl it doesn't really matter. They didn't shave off all that much. It's pretty easy to cover now even though there hasn't been any hair growth yet.

I had it done in Texas. I would rather not give any more information than that.

the_crafter13 karma

Serious question; how many five year olds could you take in a fight?

shakeadoo44952 karma

Right now? None. They are about the height of my stomach incisions. One head but and I would be down for the count. And I'm on waaay too much pain medication.

I'm glad someone is asking the important questions.

flgflg10s2 karma

What was your initial reaction to hearing about the condition you have?

Glad to hear you're getting better.:)

shakeadoo44952 karma

Well this is going to sound weird, but I was so relieved. I had gone months without a diagnosis and in lots of pain. Just waiting to find out what was wrong. They were testing me for MS and I was terrified. My mother has this condition as well, but it isn't normally genetic and mine is much more severe than hers. It was a relief to find out that even though it's painful and has challenges it isn't as bad as MS, cancer, or tons of other possibilities. And thank you!!

Sabal2 karma

What did it feel like in your brain when you actually had all that fluid inside? And can such a condition be detected by brain MRI?

shakeadoo44952 karma

It felt like someone had my head in a vice grip and was busybodies tightening it a little bit every day. It felt like I wanted to literally gouge out my eyes with a spoon because then at least they couldn't hurt anymore.

There are small signs that can be picked up on an MRI, but usually they can't diagnose it that way. On a CT scan they can see how full your ventricles are so that gives them an idea, but most doctor's don't know what to look for. It is usually diagnosed with a spinal tap to see the opening pressure. Then treated with medication, "therapeutic" spinal taps, and shunts.

TheQueen-Persephone2 karma

What were the risks involved in the surgery you under went? How did you prepare yourself for the surgery? What were your last thoughts prior to the anaesthesia taking over your consciousness?

shakeadoo44953 karma

It's kind of a long list so I hope you don't mind me copy and pasting. Risks of ventriculoperitoneal shunt placement are:

Blood clot or bleeding in the brain.

Brain swelling.

Hole in the intestines (bowel perforation), which can occur later after surgery.

Leakage of CSF fluid under the skin.

Infection of the shunt, brain, or in the abdomen.

Damage to brain tissue.

Seizures.

I prepared myself by eating a lot of ice cream cake and crying like every 45 minutes. I had two weeks from being let go from the hospital to my actual surgery date so I had two weeks of very irrational and neurotic behavior.

They start drugging you before they take you back and fully put you under. All I really remember was thinking how cold it was, how many people there were, and just bawling.

TheQueen-Persephone1 karma

Thank you for taking your time to answer my questions. shakeadoo4495, I wish you a very swift recovery and free of complications. All the best.

shakeadoo44952 karma

Of course! And thank you! (:

Sitin2 karma

Had time to reflect yet?

shakeadoo44951 karma

Not really. I'm not sure I really want to yet. But that's what pain meds are great for!

typical_cracker2 karma

Can you even?

shakeadoo44952 karma

I literally can't.

typical_cracker1 karma

You can't what?

shakeadoo44953 karma

Even

SolomonGroester2 karma

How do you feel? hope all is well during recovery!

shakeadoo44951 karma

I feel pretty rough today. Last night was difficult. But I suppose I am doing as well as can be expected being only a few days out of the hospital after brain surgery. And thank you!!

Sickmonkey32 karma

How are you doing today? Having a good day?

shakeadoo44952 karma

Today is not so good. I started vomiting last night for no apparent reason and ever incision on my body ( there are 4) feels like it's going to rip apart. But I'm taking it easy today and hopefully it'll be fine.

Sickmonkey31 karma

I was hospitalized for a spleen puncture once, but this seems to suck a lot more. Hope you get better soon.

shakeadoo44951 karma

That still sounds pretty shifty. Thank you!!!

Anablue2 karma

Where did you have the surgery ?

shakeadoo44953 karma

Texas

_CitationX1 karma

How did you feel after you woke up after the anesthetic, and do you know roughly how long the operation took? Hope you're better soon :P

shakeadoo44952 karma

I was really disoriented. I woke up in ICU so there were cords and sensors all over me and tons of staff moving in and out. And since I was in the neuro unit they were asking me if knew where I was and then shining flashlights in my eyes. It was very confusing. And my head hurt so badly (go figure) I could feel the exact spot where they drilled into my skull. And I could feel the tube running down my head and neck. I couldn't move my head at all for the first day. The surgery only took about two hours. It's a surprisingly short surgery.

CapitalA11 karma

How did you feel immediately after the operation/surgery?

shakeadoo44952 karma

Disoriented. I woke up in the ICU so there were sensors and wires all over me. It was kind of scary. And like I had been hit by a truck. And I could feel the exact spot where they drilled into my skull. I could also feel where they ran the tube and it hurt so badly. I couldn't move my head at all for the first day.

CapitalA11 karma

That does sound horrible, I hope you're feeling better now!

shakeadoo44952 karma

The first day was really rough, but I'm doing much better now. Thank you!!

OrcSoldat1 karma

Now that you've had brain surgery, are you ready to take over the world?

shakeadoo44951 karma

Absolutely!

OrcSoldat1 karma

Cool. Can I join you?

shakeadoo44951 karma

Of course. We just need a plan!

OrcSoldat1 karma

Let's start with our neighborhoods. Then we can upgrade to taking over the town. Then the city. Then the United States etc etc.

shakeadoo44951 karma

Sounds good. What will we use for the take over? We need a stick and a carrot. What is the plan once we have taken over? What do we want?

OrcSoldat1 karma

What will we use? Sticks and carrots. What do we want? World domination for some reason. What's the plan when we take over? What do you think of reigning down kittens from the sky onto the public? Or create a giant marshmellow man?

shakeadoo44951 karma

Hahaha alright. Sounds solid. But I'm allergic to cats, so instead of raining kittens it should be puppies. Or other baby animals. Like ducklings. Or baby sloths!

OrcSoldat2 karma

How about all of them? Puppies, ducklings, baby sloths, maybe launch a hippo from time to time?

shakeadoo44951 karma

Sounds good to me!