IAMA 19 year old girl who had brain surgery this week AMA!

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

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

Is there a plan C?

Nope, this is it

What year is it? Who is the current president?

1964, Lyndon B Johnson

Have you noticed any alterations of your consciousness or memory?

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.

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

Thank you! (:

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

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.

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

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.

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

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.

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?

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.

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

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!

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)?

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.

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.

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!

Where does the fluid go once it enters your abdomen?

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.

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

Of course!

What were your first symptoms?

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.

... 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.

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!

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

Some of us are more stubborn than others lol

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.

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.

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.

Why do your eyes turn red?

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

Hmmm... That seems odd

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

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.

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!

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

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

You sure it wasn't rocket science?

I have no idea, I was unconscious.

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?

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.

I hope everything works out for you!!

Thank you very much!

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

Hope you're feeling better.

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! (:

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.

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.

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.

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

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.

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)!

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.

How are you feeling?

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.

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

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.

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

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! ):

How do you fly then?

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.

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

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.

What's your favorite pizza topping?

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.

Did you survive?

It appears so!

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

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

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?

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.

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

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.

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

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.

What bra size do you wear?

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

SHAME!

No shame

Had time to reflect yet?

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

How are you doing today? Having a good day?

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.

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

That still sounds pretty shifty. Thank you!!!

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

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!!

Can you even?

I literally can't.

You can't what?

Even

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?

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.

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

Glad to hear you're getting better.:)

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!!

Where did you have the surgery ?

Texas

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?

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.

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.

Of course! And thank you! (:

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

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.

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

Absolutely!

Cool. Can I join you?

Of course. We just need a plan!

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

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?

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?

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!

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

Sounds good to me!

How did you feel immediately after the operation/surgery?

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.

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

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