What to Expect When You're Expecting...Brain Surgery

Ever since having brain surgery I've wanted to compile a list of helpful tips to benefit anyone who is expecting to have brain surgery, or really any major surgery or extended hospital stay. Before I had my surgery I got a lot of advice from others who have had it by searching for blogs and forums on what to expect. I figured I should repay the favor and make a list of everything I needed in the hospital and at home. Please, if you know anyone that may need brain surgery, any major surgery, or an extended hospital stay print this off for them, or give them the link. I've divided it up into sections. So here it is! The brain surgery list:

Surgery & Hospital Stays

1. Two french braids: I owe this discovery to a blog I found. I had a suboccipital craniotomy, but I'm sure this could work for other types. For girls (or guys with long hair) wear your hair in two french braids. Keeps them from shaving more than they have to (because everything is out of the way and neat), plus it keeps your hair from getting too matted with blood and nasty. After surgery two braids or pig tails is the most comfortable way to wear your hair for a suboccipital craniotomy.

2. Expect a Halo: If you have the same surgery as me you will have a halo brace to keep you're head up during surgery. They leave nasty knots on your head.

3. Nausea: It's normal to be nauseous after brain surgery (or really a lot of surgeries). There are medications that can help so request them. Also if you're hungry request chicken or vegetable broth, crackers, jello, etc. Don't eat anything heavy.

4. Ear plugs: After surgery (and if you develop chronic pain or migraines) you will be super sensitive to sound and it will increase your pain. Ear plugs will be your new best friend.

5. Sleep Mask: You will also be sensitive to light and a sleep mask may help you rest more.

6. No TV/reading/etc.: Trust me. I tried to watch television after surgery and it made me sick. Sensory overload. Give your head a rest for a while. It just got cut into.

7. Ice pack: Request an ice pack. It's nice to have one rest on your forehead.

8. Say Yes to Cucumbers wipes: These are the best for long hospital stays. A great way to feel clean when you don't get many showers, or, like me, you only get bed baths.

9. Dry Shampoo: Another great tool to keep your hair from smelling like nasty sweat and hospital without having to take a shower. 

10. Sports Bras & Underwear: For long hospital stays you really only need underwear (hospital gowns), but if you're a lady and you insist on wearing a bra make it a sports bra a size up so it's comfortable. 

11. A cuddly stuffed animal: to keep you company of course!

12. Get up as much as you can: Walk as much as possible! It keeps your strength up, wards off constipation and clots, and is just overall good for your body. If you need help ask a nurse or a tech to walk you. 

13. Pain meds: Call for pain meds before it gets too intense. Outside of the hospital be careful not to take too many pain meds (I'll tell you why later).

16. Call don't fall: Always call a nurse for help, or have a friend or family member help you in and out of bed. 

Steroids

This section is for if you're prescribed steroids, and how to deal with the side effects.

1. Maybeline Cover Up Stick: A possible side effect of steroids is a rash. It looks like a ton of tiny little acne. It can be itchy and sometimes hurt, but don't pick at it or it will scar. It goes away pretty quickly after stopping steroids, but in the meantime the Maybeline cover up stick is the best cover up for it. 

2. Fans: Another common side effect is hot flashes. They are miserable and your best defense is as many fans possible pointing at you. As long as you can stay cool the flashes won't bother you.

3. Clothes 1-2 sizes up: Sorry, but weight gain also happens. I gained 20 lbs, some people gain more. Just be aware. The weight doesn't go away as easily as the acne, you'll have to get back into exercise and eating right once you are able. The reason weight gain is a possibility, is due to the massive cravings. You'll be hungry constantly and for food that isn't necessarily healthy. You can try to fight them, but they're pretty intense. You also retain a lot of water with steroids. 

4. Water: Dehydration is a bigger possibility with steroids. The hot flashes make you sweat a lot so you lose a lot of hydration that way. Keep drinking!

7. Antacid: Your doctor will probably prescribe you a prescription antacid, but keep some TUMs nearby. Steroids can cause acid reflux. Also stick to eating bland foods. Any amount of spice (even bell peppers) will make you reflux. 

8. Patience: There are a lot of nasty side effects with steroids and it can really get you down. Be patient and focus on getting better.

At Home & Recovery

1. Memory Aides: After brain surgery, and with certain medications, you'll notice some memory difficulties so you'll need a few tools to help you out. A) Notebook to write down instructions from doctors, schedules, etc. B) Pill organizer to help you remember when to take your medication.

2. Ear plugs & Sleep mask: for the same reason you need it in the hospital. 

3. Rest & Water: Sleep. Don't be ashamed if you need one or multiple naps a day. You had brain surgery, you need plenty of rest. And once again always drink water. You can never have enough water.

4. Walk: Whenever you can take a walk. Walking is good. It prevents muscle atrophy, bed sores, constipation, and blood clots. Walk when you can.

5. Ice pack & Heating pads: Ice packs for headaches and heating pads for muscle pain.

6. Be Koool Soft Gel Sheets: These are great in replace of an ice pack. They stick on your head and keep you cool. Originally intended for fever relief for children (although I heard they have a migraine one) it feels like you have an ice pack on your head without the mess. 

7. Melatonin: Sleep can be difficult sometimes so adding a melatonin supplement can be useful. Ask your doctor if it's ok for you to use. 

8. Miralax: Trust me on this. Surgery can cause constipation.

9. Try to ween off narcotics: As quickly as you can (without discomfort) try to ween yourself off the narcotics. If you take them for too long they can cause rebound headaches, which are extremely painful. 

10. Pillows: Pillows are great for positioning in bed, especially if you are spending a lot of time in bed. I always slept with a pillow under my knees and under my calves so my heels hung off. This can prevent skin break down on your heels.

11. More patience: Give yourself time to heal. Be patient. The term "Well it isn't brain surgery" does not only apply to the difficulty of performing the surgery, but also the difficulty of recovering from surgery. 

Doctor's Appointments

Some advice for your appointments and interactions with doctors.

1. Make lists: Keep track of symptoms, side effects, and concerns. Make timelines of events including medications. This will be helpful to guide your conversations.

2. Pay attention: Be aware of your body and notice your symptoms and side effects and changes.

3. Be an advocate: Stick up for yourself.

Incision Care

1. Itching: It will itch like crazy. To help with this dab your incision with a cold wet paper towel, or if your doctor is ok with it, put some neosporin on it. Watch out though, you don't have all of your feeling there and you can easily tear up your skin or pull hair out by scratching.

2. Nerve pain: When your nerves start regenerating you will feel some pain that feels like an intense electric shock. Light tapping on your head can help relieve this. The pain doesn't last long. 

3. Gauze: When you sleep, if you have an incision you have to lay on (like the back of your head), lay with some gauze under your incision. Keeps your pillow case and incision clean.

General things to look out for

1. Side effects/reactions to medication: Some medication can cause troublesome side effects. Another reason to pay attention to yourself. 

2. Dehydration: Another reason to drink drink drink. Some signs of dehydration I experienced are tachycardia (fast heart rate), shortness of breath, constipation, decreased urination, etc. 

3. New Pain: Another reason to pay attention. New pains can be signals of changes in your head or other problems. 

4. Ask your doctor: Ask your doctor what to look out for. When should you call for help?

Be patient, keep your spirits up. Brain surgery is tough. All major surgery, chronic pain, chronic illness is tough. Allow yourself to cry or feel down, but don't let it take you over. Everyone's recovery time is different. Don't get onto yourself if you don't recover as quickly as you had hoped. Seek others in the same situation as you. It helps to talk to people who have been through what you are going through. 

I really hope this helps someone someday!

My eyes! MY EYES!!

Ok I know, last time I made it seem like I would be updating on time. Well, it's hard to post when you are having trouble with your vision, and I'm a liar (no I'm not, or am I?). 

Also sorry if there are typos or grammar mistakes. I've been having difficulty with finding these. My attention to detail isn't so great right now. Also my attention to typing. I don't, however, mind if you tell me about them (in a nice way of course) so I can fix them. Now don't go crazy on me.

Anyway last time I mentioned I had a doctor's appointment with my surgeon coming up. I had that appointment and they told me basically they felt everything was good from their point of view, and I needed to be seen by an opthamologist (I was still having vision trouble), and I needed to follow up with my neurologists for my head pain. I broke down during this appointment, because I began to worry people were giving up on me, and they would eventually believe I was faking my blurry vision and pain. My neurosurgeon assured me this was not the case, but I still continued to cry from exhaustion with everything. I was having difficulty with my speech, memory, walking (I had experienced numerous falls that past week), I had gained 15+ pounds from steroids, and my vision and pain were not getting better. The nurse practitioner talked to me about my concerns and felt that most of these were side effects of medication. She suggested trying my Scopolomine patch again (a patch I had used for a while after surgery to help with nausea. I had been off it for a week or so once they had started me on the diuretic). She felt this would help my unsteady gait, and maybe some of the nausea from the vision issues (and it did). She got us set up to be seen with the neurologists and said she would see about getting me into the neuro-opthamologist I had seen my last hospitalization. 

That was a Thursday and by the following Sunday I felt my vision was getting worse. I was having trouble with close up vision, for example I had difficulty reading a menu at a restaurant and had to hold it further away. I experienced the same problem with my phone and computer. I wrote my nurse practitioner an email hoping this would mean she could get me a quick appointment. She wrote back Monday saying I needed to go to the ER. My mom and I debated going, because we were worried it would be just a bunch of needle sticks and no answers, but the nurse practitioner convinced us by saying this would help us get seen by an opthamologist. 

We arrived at the ER and they did numerous visual tests, mainly reading the eye chart from 20 feet away, which I was only experiencing minor difficulty with. I could see at 20/20, but things weren't clear. I tried to explain this and gave my examples, but it seemed to go no where. Doctors either weren't understanding me (due to my stumbling speech and word-finding difficulty) or they weren't listening. The neurologist said I seemed fine (even though her medical student was the only one that seemed to understand my problems), and the ER doctor said they were discharging me. She promised me that I would be seen by the neuro-opthamologist the next day.

On Tuesday I woke up and discovered I could not read anything close up. It was completely blurred. In order to make anything out I needed to hold everything at arm's length. I got a call from the neuro-opthamologist's resident, saying they didn't feel I needed to be seen. I told the resident that I did need to be seen, I could not read anything, and besides that my surgeon wanted me to be seen even before my vision got worse. I received other calls that day and felt like I was negotiating with them about whether I needed an appointment. Finally the ER doctor, from the night before, called to make sure I had gotten an appointment. She seemed upset about how they were treating me and told me she would do what she could to help. I appreciated this, especially because the night before she had told me that today was her day off. Finally I got an appointment for the next day.

This list I brought into my appointment

This next part is about how not to be a doctor, and how not to treat your patients.

My mom and I were worried about this appointment, because of how difficult it was to make them realize that I needed it. I went in and received a test of my peripheral vision by a nurse and waited to be seen by the neuro-opthamologist. He and a resident took me back into an exam room and did some basic tests (read the eye chart from far away and up close, follow my finger). He made a few remarks that took us by surprise. He laughed and said, "Why did you feel blurry vision was a reason to go to the ER?" I replied, "I was told to by my surgeon and his nurse practitioner." He laughed again and mentioned something about that not being an emergency. When he asked me to read the small chart to test up close vision I had to hold it at arm's length and squint. He told me this was all normal and to go home. 

I explained that I never had to read everything at arm's length, like an elderly person, and told him about how I discovered my mom's reading glasses were helping. He dismissed this and said I was fine. My mom interjected and told him that something was wrong and we needed help. I continued to give examples of my vision changes, and how I was nauseous all the time now from not being able to see. 

This is where things got bad. First he continued to say, "You can see just fine". I argued that I could not. Then he said "you know what, I think there is a bigger issue here." I asked what that was and he replied (and this is exactly what he said), "I think this is a psychiatric issue. For some reason you keep making up these issues. I think you have a fear of being independent." 

That's when we got up and left, after of course chastising him for being a neuro-opthamologist making a psychological diagnosis on a patient he barely knew. 

My mom and I were heart broken. We were both in tears from being humiliated and ridiculed by this doctor.  Luckily we were a short walk away from my surgeon's office, so we decided to go there. We found the nurse practitioner and broke down while telling her about the appointment. She apologized for this doctor and told us she would try and help anyway she could. She got me an appointment for an MRI to see if there was any underlying issues and told us to find out if we could see an optometrist, just for a basic work up. We left feeling much better.

A friend of our family, that lives in the Bay Area and had housed me during my internships and was housing my mom during all of this hospital business, mentioned they knew an optometrist. They called their friend and she said she could get me in the next day and wanted to help. This optometrist booked 2 hours for me, because she wanted to do every test she could to help me. 

We went to this appointment and I did a number of tests for my vision (pressure, periphery, eye charts, etc.). She took us to an exam room and asked me to give her a history of the problem. As I told her about the vision issues she looked over my chart and my current medications. She looked up at me and pointed to my neck. "How long have you been wearing that patch?" I told her I had been wearing it off and on after the surgery. She smiled. She explained that often times Scopolamine can cause your eyes to over dilate, which causes blurry vision (especially up close) and light sensitivity. She told me she bet that, along with medications I had just been recently taken off, had been causing my vision issues and that I should see if I could get off the patch and wait a few weeks for that to leave my system.  We could not believe the answer was that simple, and the neuro-opthamologist had missed something so obvious. She also mentioned her tests showed I needed bifocals, and my vision was normal, but for a 40 year-old. 

That night I removed the patch. within 4-5 days my vision drastically improved. I'm still having minor blurry vision, but at far distances, and the optometrist had mentioned my prescription needed to be updated (we are waiting to do this to make sure everything is settled medication wise).

I still went to the MRI appointment just in case, and as expected it came back with nothing on my vision issues. It did show a few lesions in the white matter of my frontal lobe, which my neurologists (whom I've seen recently) explained is related to my migraines. 

Neurology appointment! I got there all by myself by public transport. I was pretty proud of myself.

The appointment with my neurologists went well. I met with someone I hadn't seen before, but he knew my case well. He took me off one of my pain medications, because it was causing me rebound headaches (like my narcotics did). He explained this transition might be painful for a while and he was right. Fortunately my other medications are working better at controlling my pain and in the past week I've only experienced 2 headaches that were beyond my control. 

Everything seems to be looking up, finally! I feel like I am actually getting better now, and that we are on the right track, even with that awful neuro-opthamologist appointment.

I've also recently met a community of brain surgery patients/survivors/clients on Instagram and we have all been sharing our stories with each other, and sending each other encouraging words. This has changed my recovery significantly, because I feel like I found friends who understand my pain. I know people that are a few weeks out from surgery,and people over a year out. They have all different diagnoses, and are all different ages, but we all share brain surgery in common. What I found interesting is the other things we have in common. Most of us have been told we are faking some sort of symptom after our surgery, whether it's pain or blurry vision. We also all seem to be wanting the support and friendship of other who have had brain surgery. Brain surgery is a pretty lonely and emotional recovery. Even if you have great friends and family (which I do), you still feel a need to talk to people like you, and there aren't that many (especially close to your age). I'm glad that we all found each other, even if our only form of communication is filtered pictures and comments. It's nice to know that someone else out there is sharing my experience.

Two ER visits and a hospitalization...Oh My!

I know I know, another update? Yes! I'm trying to catch everyone up that way I can post more stuff right after it happens. Like for instance I have a doctor's appointment with my neurosurgeon tomorrow and I'd like to be able to post about it as soon as possible.

This post is about the two visits to the ER and the 24hr hospitalization that occurred after my 8 night and 9 day hospital stay.

As a side note I'd like to inform you that my head is "not all there" today. I just got back from Urgent Care, due to a sore throat and cough that they determined to be a virus, and my memory is shot. So bare with me.

The first ER visit happened on a Sunday. I was having terrible headaches and none of my medication would help. I had never experienced head pain like this before. On a scale of 1-10 I was at an 8 bordering on a 9. I was taking my pain medication every four hours, but nothing was relieving the headache. I was so medicated that day I was falling in my apartment, and slurring my words. I could barely keep my eyes open. But still, my pain remained an 8/10. 

We called the 24hr neurosurgery line at UCSF and they told us to come in. After a CT scan, some pain meds, and determining it was not due to increased pressure they sent me home. They gave me a prescription for stronger pain meds. That night I slept well, Monday I had a pretty good pain free day, and I slept well that night too.

Tuesday I woke up at 8:00am with a headache so severe I actually called it a 10/10. I never say 10, or hardly anything above 8, when they ask for my pain level, but this headache was definitely a 10. It was excruciating. I couldn't think, I couldn't open my eyes, and every sound (seriously EVERY sound) was painful. I was in so much pain, that while my mom left a message on the nurse practitioner's answering machine, I was packing my bags for the hospital. We headed to UCSF before the NP even called back (she said she was going to send us there anyway).

I was in so much pain my heart rate was 145. They gave me the traditional IV narcotic pain medicine, but I felt nothing. Immediately I was nauseous and dizzy, but I experienced absolutely no pain relief. Then the doctors gave me three different migraine medicines, and finally I felt the pain die down to a 5/10. At this point, though, I was completely out of it. Of course this is when the doctors decide to come in and interview me. I couldn't open my eyes I was so sedated.

They admitted me to the hospital. My nurses and techs recognized me, "Oh Alyssa! You're back? We just said bye to you!" They gave me more migraine medication and a couple sleep aides and I got some rest.

The next morning the decide to give me a roommate. Now, when you are experiencing the worst migraine you've ever experienced the last thing you want is to be sharing a room with a lady with poor hearing due to old age. Why? Because, everybody basically yells at her! And sound is now your enemy! They also turned on a lot of lights, and this headache I was having made every bit of light feel like a knife in my eye. I spent most of my time with earplugs stuffed in my ears, ice pack tied to my head, something wrapped around my eyes, my hands over my ears, and crying for everyone to be quiet and to turn the tv off. Television is hard to handle after brain surgery, even 5 weeks after brain surgery. It can be overstimulating, especially with headaches. (Also, this lady was actively bleeding...all over our shared toilet. Not her fault, but um, no! Not using that anymore...)

I looked beautiful at the hospital! Not creepy at all!

My neurologist came in and I broke down. "I'm dying! I'm miserable in this room! Please, I can't take it!" He looked at me and I knew he understood, and in a quiet voice he said "I know. This is the worst place for you. We're going to try and discharge you today."

He explained to me why my headaches were so vicious so far out of surgery. He said I had been on the narcotic pain medication too long. It's true. They expected my pain to be gone within 2 weeks, but because of the problems with my intercranial pressure and other complications, I had remained on them for almost 5 weeks now. He explained that some people get rebound migraines with narcotic pain medicines. He said these medicines numb the part of the brain that deals with pain, and once they start to wear off your brain has a tantrum and demands more. Eventually no matter how much narcotic pain medicine you throw at your brain, all you're going to get is migraines and nausea. The problem is these medications also make it difficult to switch immediately over to traditional pain medicines, or migraine medicines. So they are using Naproxen (or Aleve) to ween my brain off the other stuff and transition it to migraine medicine. They sent me home that day.

In other words pretty much all of my problems are caused by medications that are supposed to help me. Go figure.

Well now I'm taking the Naproxen and migraine medication regularly and I can tell a difference. The frequency of my headaches seems to be less, but I'm still having days where I experience 8/10 headaches (no 10/10 yet *knock on wood*). Also I still have the original pain from what I guess is the pressure??? I don't know. I have so many questions and I don't think they have the answers yet.

It's hard to have one of the world's best neurosurgeons look at you and say "I have no idea what's wrong with you." What's worse is I'm looking back at the days before surgery where I was JUST FINE! I don't think my doctors did something wrong, I know it's me. I react weird, I've always been odd medically, and I knew from the day we decided on surgery that I would be the one patient who would not have the normal recovery. 

One of the most frustrating things lately, has been that my memory, and really all of my problem solving, is just gone. It left. I have the cognition of a goldfish. The other night it took me 3-4 tries to remember to put the milk back in the fridge, and I ended up having Ethan do it. Just now I got my computer to write this post and I took off my glasses and set them on a table. My therapist friends probably all know about the three word test, where you ask your patient to remember three words and at the end of your visit you have them repeat it back to you. Yeah I fail that like every time now. I argued with my mom at a nail salon, because she handed the lady three twenties for her forty-three dollar manicure, until 10 minutes later when I realized that's perfectly reasonable. 

Also I walk like a drunk. I mean I am falling ALL over the place. It's kind of funny I admit, until I scrape up my knees and elbows on the carpet.

I hope we get answers tomorrow. I'm sick of feeling miserable, and I am sick of telling job recruiters that I still can't work yet.

Ugh...

Here's some extra pictures:

This is what steroids does to your face! DON'T DO STEROIDS! Unless it like saves your life or something... (by the way this stuff on my forehead is almost all gone!)

I got stickers at the neuro-opthamologist for being a good girl!

These are my emergency shots. I can only use them twice a week when I have a really bad headache. Unfortunately I react kind of weird to them (my neck, back, and shoulders start to hurt, my scalp feels all tingly, my heart races, and I freak out).

Left: Couple days after surgery. Right: 6 weeks after surgery.

Stanford doesn't matter

Let me explain the title. This post was supposed to talk about my hospitalization at Stanford. Well, I have been hospitalized so many times since, and had many trips to the ER, that this hospitalization seems so insignificant to me. However, I will give you a brief synopsis of that trip.

One day my mom brought me breakfast and I sat down to eat it. While I was eating I noticed I felt out of breath so I took my heart rate with my iphone (really great heart rate app by azumio that's free and very accurate, I compared it with the hospital machines). My heart rate was 150. I went and laid down, but could only get my heart rate down to 130-125ish so my mom called my neurosurgeon's nurse practitioner and she had us call 911 for an ambulance, because she thought I was experiencing a pulmonary embolism, or a blood clot in my lungs. The EMT's did a EKG in my apartment and then transported me to Stanford hospital. They placed an IV while in the ambulance and it was quite painless. Once at stanford I was put in a room with three other patients, the room had curtain dividers for privacy, and doctors saw me all night. At one point in the middle of the night we heard the ER nurses mention they had a patient, middle aged male, that was picked up off the side of the road. That middle aged male began to howl, growl, bark, scream, and bang on the walls. I was pretty sure I was in an episode of Untold Stories from the ER. They finally admitted me to the actual hospital from the emergency room around 4 or 5 in the morning, where they told me all they could figure out was I was severely dehydrated. After 8 bags of fluid and my heart rate returning to normal I was sent home. That was the worst hospital stay. I got no rest and felt terrible. Since then I've had two hospital stays, and three trips to the ER. This was March 5th-6th.

Me all hooked up at Stanford. I think this is the Instagram version...or I have jaundice. One of the two.

I know I have a lot of catching up to do. I've been neglecting this blog, because I've felt so terrible.

March 7th I had an appointment with my surgeon and they removed the sutures and stopped my steroids. 

Before

After

Ew I know that scab looks nasty. Well, anyway that was a Thursday and on Saturday my mom flew home to Oklahoma.

Monday I was home alone and in the afternoon I decided to microwave a snack. I took out what I wanted and realized "Hey, I can't read the directions". My vision had gone blurry. In a panic I called the nurse practitioner and she told me to start my steroids again. Yay. Tuesday morning she called and I informed her that my vision was the same. She told me to head to the UCSF ER.

In the ER I was told that the doctors were concerned the pressure in my head was elevated. I was seen by an opthamologist who said my optic disks looked slightly blurry, which meant the pressure in my head might be slightly elevated. They did a lumbar puncture, which was completely painless, and the results showed my pressure was slightly elevated but not enough to cause damage. They did a CT scan and an MRI and found no reason why the pressure in my head would rise. Technically my pressure was marginally within normal limits (it should be a 10-15 and mine read a 26...seems pretty high to me, but hey I'm not a doctor), but for some reason I was experiencing symptoms associated with hydrocephalus (the fancy term). I was experiencing blurry vision, nausea, dizziness, and pain. I should not have been experiencing the amount of head pain I was experiencing this far out of surgery.

Side note: When they were telling me they needed to do a lumbar puncture I explained my last one was extremely painful, so much so I almost passed out. My doctor seemed confused. I told them how they had my lie flat on my stomach on a table. My doctor freaked out. "Lie flat on your stomach!? Are you sure you got an LP!? That sounds terrible!" So apparently my first LP was done incorrectly....

I was admitted to the hospital pretty quickly. They decided to put a lumbar drain in me. A lumbar drain is a catheter inserted into your spine via a needle that drains the excess spinal fluid. Here's some pictures, nothing too heinous I promise.

That tiny white tube is in my spine! I'm sure you notice the many red dots. That's called a steroid rash. One of the many benefits of steroids. I have that all over my back, my chest, in my hair, and a bit on my forehead. It's awful. I hate steroids.

That white tube connects to these tubes, which were taped to my belly.

And finally, those tubes connect to this drain. Yes, that bag contains my cerebral spinal fluid. When the drain was on I could not change the head of my bed or get up without first calling for a nurse to clamp the drain off. If I were to do that without clamping it, I would get a spinal headache, which is a severe headache from the pressure in your CSF decreasing.

I had that lumbar drain for a about 3-4 days. Amazingly I felt great with that drain. I was hardly nauseous, my vision almost returned to normal (just slightly blurry), and the pain in my head was almost non existent. During the drain the only time I called for pain medicine was for my back, because having a lumbar puncture and a lumbar drain so close together in the exact same location really messes with the muscles in your back.

The only problem was I kept springing leaks. They would clamp the drain and I would get up to eat or use the restroom and my spinal fluid would start leaking from the hole in my back. Not good. This caused me to have severe spinal headaches a few times. After a while the leaks didn't cause me any trouble, but it's generally not good to have your back leak. They had to put a stitch in my back to close the hole tighter around the drain. I still leaked regardless.

The only thing that hurt from all of these procedures is the lidocaine! That needle feels like a knife slowly going into your spine. It's awful.

Before taking the drain out they clamp it off to see how you do. Within a day my vision was back to full blurry, my pain was back, and I was regularly needing nausea medicine.

Then they took the drain out anyway and stitched up my back. I ended up getting a horrible rash around the stitch and I'd show you a picture, but I'm pretty sure most of you would faint. It's not that bad...

The doctors were still undecided. They weren't completely sure if the pressure in my head was elevated or if it was just migraines or if it was something else. They needed to make a decision and be sure. If it was high pressure it could mean me getting another surgery for a permanent shunt.

They drill a hole in your head and insert a catheter into a ventricle. There is a small device connected to that catheter that regulates the shunt that is placed under the skin, which is connected to tubing that goes down through your neck into your abdomen. It basically removes excess fluid and puts it in your abdomen where your body absorbs it. 

I was having a really hard time effectively communicating to the doctors and I was starting to fear they didn't believe me. Ethan, my boyfriend, believed me and he knew I was struggling. After a frustrating visit with my neurosurgeon (frustrating because I couldn't get my point across), Ethan suggested he and I work together to type up a list of my symptoms and type up how they changed with the drain. He also suggested we type up a list of my concerns. He later added a timeline of events (including surgery, procedures, and medications and when these medications were added or stopped). I truly believe without this the doctors would still be confused. We gave this list to the neurologists working on me, my neurosurgeon, and my nurse practitioner.

I would have gone crazy during that hospitalization if it were not for him.

Finally, my doctors came to a conclusion. They decided this was all a reaction to my steroids. Sometimes certain people, when taken off steroids, will experience a rebound effect where the pressure in their head increases. Instead of going with the surgery they put me on a diuretic in hopes that that would help. They will reevaluate at an appointment next week. I'm a little worried, because my vision has not improved, but according to an opthamologist seen during another hospitalization my optic disks look completely normal and he thinks the pressure in my head is normal. I'm still confused...

After 8 nights, and 9 days I was finally sent home on a Wednesday. My mom had flown in Tuesday, because we were almost certain I was getting another surgery.

I wrote the nurses at UCSF a thank you card. I loved all of my nurses. They took great care of me even when I was uncontrollably sobbing from being so tired of the hospital and IV's. At this moment in time over the last 5 weeks or so I've had 13 IVs. After a while it gets hard to find veins and they become very painful. Not only were the UCSF nurses great for medical care they were all great emotional supports too and really helped me through this tough time.

During this hospitalization I learned a lot about what it means to be a patient. I have always been the one caring for the patient. I give bed baths, take people to the restroom, help them get dressed, and help them get stronger. This time I was the patient. I experienced my first bed bath during this hospitalization. It's embarrassing at first but once you get that warm wash cloth on you and you smell the clean soap, all that embarrassment goes away. I know what it's like to not ever want to get out of bed, and just have no motivation at all. With my drain, and with being labeled a fall risk due to my medication, I know what it's like to have to call for help every time you want to do something. I know what it's like to be walked to the restroom. I even know what it's like to cheat and not call for help and just get out of bed anyway, because it will only take a second and I'm sick of pushing that damn nurse's button and waiting! Now whenever I get to work as an OT I will be able to look at my patients and honestly say "I get it. I've been there."Telling myself that, "this will make me a better OT" is what got me through some of those really painful procedures.

And on that note, here are some extra pictures! Yay!

Ear plugs are essential when recovering from brain surgery.
Sound only makes the pain worse.

I got bored a lot.

Fall risk!

Ethan photoshopped in some extra signs. You
may have to zoom in to see them. 

I just had brain surgery...what's your excuse?

Hey everybody! I know it's been forever since I've written something, but I have been so exhausted and weak I couldn't even think of anything to write. This post is going to focus on the actual surgery and my first stay in the hospital (yes I've had two hospital visits, but I'll tell you about the second one some other time)

So I had my surgery February 20th. We had to be at the hospital at 6:30 in the morning and surgery was at 8 am.

Me waiting in the pre-op area

It was a six hour surgery! And two of those hours was spent prepping me. I had two IV's (one in my hand and one in my foot) an IV in my wrist that measured my blood pressure and a central line in my neck. They had to shave my hair (luckily I read online to wear your hair in double french braids, which meant they didn't have to shave more than they needed). They also had to screw my head into a halo, because I was sitting up during surgery. I was left with some pretty nasty goose eggs on my head from that.

The last thing I remember before succumbing to anesthesia was my surgeon waving to me and them strapping my legs to a table. The next thing was waking up in the neuro ICU nauseous and asking the nurses to put a wet towel over my eyes.

I was so sick that first night. They brought me dinner (spaghetti, who the hell wants to eat spaghetti after brain surgery) and I refused. I asked for jello and ginger ale, but I ended up throwing that up for the rest of the night.

I had the best nurses in the ICU. First I had Oliver who I confided in and told him my fear of waking up to the zombie apocalypse after surgery like in the Walking Dead. He understood, he watches the show. Then I had Alex who I asked non stop what time it was, because I was eager to see my parents and boyfriend and find out if I passed my boards. Then I had Merriam who made sure I was completely ready when they transferred me to the main hospital, and also informed me that my hiccups were a side effect of brain surgery (who knew!). They were all so kind and patient and I was really well cared for. I had great nurses in the main hospital, on the neuro unit, as well.

By the way on my second day in the ICU I found out I passed my OT boards! It was a great day...until they transferred me.

For some reason they put me in a shared room, and my roommate was AWFUL. She was an older lady who was extremely loud, had tons of visitors, had the loudest nurse ever, and had her TV constantly blaring. We had the nurse ask her to turn her TV down because I was extremely sensitive to sound, and it caused me extreme pain. She said, "No. I don't see how that benefits me. It's my last night in the hospital." Ugh. When my heart rate spiked to 120 they finally moved me to a private room and I was able to rest.

I was in the hospital for four days. They tried to send me home after three days, but I was terrified. My pain wasn't under control without IV meds, and my blood pressure had been 96/57 the night before. My nurse, William, advocated for me and they let me stay another night. William was awesome. You could tell he really cared and I appreciated everything he did for me.

They sent me home on a Sunday. I was miserable at home and in tears. I wanted so badly to go back to the hospital, because I was comfortable and felt safe there. I'm not unsafe at home, I just worry a lot.

I'm just gonna add on here a little note about the tumor. Most of this info we found out later, but I don't want to keep you worrying. So they got all of Timmy except a very miniscule portion that was attached to a major vein. My surgeon cauterized it so it's dead. I got the final pathology report on Thursday and it is benign! There are some confusing parts though. It is possible, although very very very unlikely, that down the road it could come back and it could come back malignant. My tumor is such a rare one there isn't much known. However, because of the extremely small chances there is no reason to worry about that. I will however have to get regular MRI's for at least five years.

Now for some pictures! Some of them are a bit gruesome so if you are squeamish, don't say I didn't warn you.

This is the first picture I took of myself the day after surgery. I look so pale!

This is what I looked like right after surgery. Got my towel over my eyes and my SCD's on my legs.

I think this was the day of surgery too. My mom got me that dog. I'm still sleeping with it.

That is the central line that was in my neck! Ahh!

Still looking so pale.

That dressing wasn't really doing its job.

Still to this day we have no idea what caused that red spot. I think they scraped my head while moving me.

My doggy

Trying to look nice.

Clumps of hair kept falling out.

We nicknamed that spot the strawberry.

Right before going home. That smile didn't last long.

Hardcore pigtails

Wanna see Timmy?

I realized I never posted the pictures of my original MRI. So here are a few snapshots of what Timmy looks like.

Timmy is that bright white spot with lines by it

Well there he is. I must say my drawing are quite accurate.

Alyssa

Doctor's Appointment

Today I had my first appointment with my new neurosurgeon, Dr. Andrew Parsa, at UCSF. First of all the office is BEAUTIFUL with an amazing view of the city (I know this has nothing to do with its ability to care for my brain, but it was a plus).

This was the entrance to the office. I did not know that I was going somewhere specifically for brain tumors. There were more people in the waiting room than I expected, which made me think "How often do brain tumors occur?" Well, apparently they aren't as rare of a diagnosis as I had thought.

This is the view from the waiting room. It's a great view of Golden Gate bridge and the city. 

The entire staff was super friendly and took their time to talk to me and make sure I was comfortable and had all of my questions answered. We especially liked the nurse practitioner who was thorough, knowledgeable, and friendly.

Anyway to the point. We met with my neurosurgeon and he had what I consider to be good news. So he said that he is pretty certain (90% sure) that the tumor I have is called a pineocytoma, which is a benign slowly growing tumor that can be cured by surgically removing it. Great news my doctor specializes in removing brain tumors and removes these types around 5-10 times a year. Now the doctor said there is a small chance (obviously 10%) that it is something else and there are two ways to find that out. First we are going to do a more in depth MRI the week before surgery to make sure it's still there, looks the same, and doesn't appear to be a cyst. Then after they remove it they will run tests to see if it is malignant and if it is we will figure out what to do from there. 

We are planning on having the surgery mid-late February. The surgery will consist of me sitting up (asleep) and the neurosurgeon removing part of my skull in the back of my head to access the third ventricle (or the fourth I can't remember) which will lead them to Timmy. 

ventricles

AND THEN THEY SHALL CUT HIM OUT WITH THE VENGEANCE OF A THOUSAND FIRES!!!

The neurosurgeon said I will be immediately transferred to the ICU and then after a night there I will spend around 3 nights in the hospital. The whole recovery time should be about a month total and after that I will be back to myself!

Which means....I may not have to wait as long to be an OT as I had previously thought! 

The neurosurgeon seemed really awesome and told me I need to make sure I de-stress and focus on preparing for my registration exam.

So good news? Yeah it's major surgery, but it's not months of radiation, possible radiation related side affects, and delaying my chance of my dream job. I'm calling it good news.

Alyssa