~*BIRTHDAY*~

Even though today is my birthday I want to focus on the people who have supported me throughout my surgeries and recovery. I could not have made it through the last 6 years without the continuous support and unconditional love from my family. I feel extremely blessed to have people in my life that will be there any day and anytime I need them.

To my friends and co-workers that are always there to help out when I need a hand. Or make me laugh when all I feel like doing is cry. I will be forever grateful.

And my love....words cannot express how thankful I am to have such a supportive person in my life this past year. You are truly a blessing.

Lastly my birthday wish....to have a healthy and happy year. Not just for me, but for all the people that have been there for me this past one.

My seizure experiences

There are many different types of seizures one can have. I've had 3 since my original surgery in 2007. The first one I had was before I was put on any type of medication. This one was called a "Grand Mal" seizure, which is the "biggest" and "most dramatic" a person can experience. Unfortunately I was sleeping when it happened, so I cannot recall details although I was able to pinpoint what I had due to the effects:

Grand Mal Seizure:
1. Unconsciousness (3+ minutes)
2. Stiffening and jerking of the muscles every 30-60 seconds.
3. Tongue biting
4. Loss of bladder control
5. Pupil dilation
5. Deep sleep after seizure (additional 6+ hours)

Afterward my body had felt like I had just run a marathon because every muscle so extremely sore and I was so physically exhausted.

My second grand mal seizure occurred in my sleep as well. I didn't have as much soreness is my muscles and the tongue biting wasn't as severe.

The third, and most recent, seizure happened in December 2012. And even though it wasn't a "grand mal" it was the most terrifying to date. This was mainly because I was conscious for the entire episode. I was on the treadmill doing interval running and my vision started to get a bit distorted. Normally when this occurs I get a migraine, but I also had a strange feeling in my head that was very different from what I have felt before. I immediately got off the treadmill and collapsed on my side. My arm was jerking and I had no control of it. I was also unable to speak to try and get help. Luckily my father heard the treadmill running with no one on it and came to see what was wrong. Shortly after I was taken to the emergency room where I had a CT scan and nothing showed up abnormal. Although by the time the took the scan it was about 4-5 post seizure. We believe this was either a myclonic or atonic episode.

Today I continue to do what I can to prevent another seizure from happening:
Take meds on time
Get enough sleep
Limit alcohol
Limit stress (easier said than done) 
Not physically overworking (i.e. exercise)

I do recommend always carrying your seizure meds on you just in case. And also make sure the people are are around the most (friends, co-workers, family, etc.) know your situation and your hospital preference.

Seizures after brain surgery

One the most important things I wanted to write about was seizures after brain surgery. This is mainly because I really wasn't made aware of them until I had my first one. They briefly mentioned the risk, but gave me no additional details on what to avoid.

Below are 3 triggers that cause seizures after brain surgery:

1. ALCOHOL: One of the biggest triggers for seizures after brain surgery. You can still drink, but my neurologist recommended only having ONE. I've pushed this to 2 drinks, maybe 3 on a weekend. Although this is usually over a good span of time, 3-4 hours. And I always drink water with it. I also recommend limiting the number of days you drink per week as well to no more than 2 or 3.

2. SLEEP: There's a direct link between the amount of sleep you get and seizures. Try to get  7-8 hours each night.

3. STRESS: There are two types of stress that will trigger a seizure: physical and emotional. If you regularly workout or have a manual labor-type job it is essential you do not push yourself too hard. And if you're going through a stressful situation (job, family, etc) that also comes into play.  

Please note these are not the only triggers of seizures. Talk to you doctor for more information and what you can do to avoid them. Once you do experience a seizure you will be put on seizure medication (most likely for life). Even if you are put on medication you can still have additional seizures, therefore it is essential be aware of the triggers listed above.

Just another maniac monday.....

I had my weekly visit from my home nurse early this morning. Her visits normally last about 90 minutes to 2 hours depending upon how my picc line is cooperating. I'm still having trouble with one of my ports, so she administered cathflow to help. It's basically drano for a picc line. Although you can only use it twice per port. Not quite sure why. Anyhow, she did use the cathflow on the wrong port this morning. Oopsies. Well at least that one is fully working!

Okay, back to my visit......She was able to get my 4 tubes of blood, which they use to test all sorts of levels: vancomycin, red blood cell, white blood cell, etc. And then she took all my vitals and changed my dressing on my picc line. That part isn't fun because it's like having to pull off one BIG band-aid. I know, I know....after all I have been through I am complaining about THAT!

Migraine Update: They seem to come on about every other day now. I brought this up to my ID doctor at my Friday appointment. As expected it is one of the side effects of Vancomycin that I'm just going to have to deal with. I'm sure my liver isn't happy about the amount of advil I have take in order to get rid of it. I really have no choice though. I'll be so happy to get off this stuff. It's caused a lot more issues these last 14 days than ever! I've had to put on additional meds to help my body deal with the vanco. Crazy huh? Plus I know it's pretty hard on my veins too.

Once I am off this I am going to celebrate with a really good bottle of wine!! Hey now....I have to look forward to something! The only strong stuff I get now is 6 hours a day of IV antibiotics. Yippee.....

Compromising

The importance of compromising is something I learned at a young age. Although I have to admit my stubbornness does kick in during compromising every now and then. It certainly did today at a very unlikely the place......my neurosurgeon's office.

The topic....scheduling my next surgery.

Here's a little back story: The last surgery was in mid October to remove a faulty piece of bone cement and titanium mesh. Because the titanium mesh had pierced the skin, which exposed it to air for some time, there was natural infection. Two types were identified in the hospital: general staph and another one with a very long name! Nothing aggressively developed, but I was still put on a picc line so I could be treated with IV antibiotics for 6 weeks before the next procedure.

The argument:
1. Neurosurgeon: Take me off the antibiotics for 2 weeks to see if anything develops. If not, than have second surgery. Continue with another week of IV antibiotics.

2. Patient View (ME!): Have the surgery after the 6 week course of antiobiotics is completed. Stay on IV antibiotics for additional week or two after surgery.

The Issues:
1. Neurosurgeon: By taking the 2 weeks off he will know for sure if there is infection by the way the wound looks. Also risk infection of picc line by keeping it in an additional 2 weeks and without use for 2 weeks.

2. Patient (ME..again): I feel it's better to have 6 weeks of continuous IV antibiotics, have the next surgery and proceed with another 2 weeks of IV antibiotics afterward. It also takes out the risk of having the picc line getting infected.  

 I also am taking into account FMLA and my 12 week work absence, as well as recovery. I will have more time to recover by having it done my way. If I have it on the neurosurgeon's timeline I'm running into crazy hospital time (Xmas/New Years) and also running this process into 2014. *Sigh*

I'm willing to compromise on the time, but 2 weeks is too long for the many reasons I listed above. I have a follow up with my ID doctor tomorrow, so fingers crossed he's TEAM NATALIE!

Vancomycin

My post today wasn't going to be on vancomycin, but considering it's caused me 3 migraines in the last week I felt it was a given!

If you've ever had a migraine you know it excruciating they can be. Not only does your head throb in pain, but you usually have sensitivity to light and sound. I've been locked in my bedroom many times trying to get rid of them as a early teenager. Back then I was only given tylenol which did absolutely nothing. I discovered ibuprofen in my late teens and that seemed to do the trick. A few caveats....I had to catch it within the first few minutes when I get the "visual cues"....meaning I start to see distortion in my vision. And second is that I have to take a prescription amount worth of it too, which is generally around 800 milligrams. So I guess I'm semi-lucky I don't need prescription medications for migraines.

Okay, back to the vanco....

I'm pretty much on one of the highest doses (intravenously) possible, which is 2gm twice a day. Like most IV antibiotics they didn't start me out on this dosage. It was increased every 5-6 days. I've been on the 2gm/2x day dose for about 2 weeks and that's when the majority of this issues have started. I recently search for "vancomycin and migraines" online and it seems like a few other people have had this problem. Although it doesn't seem to be one of the man side effects. I'm supposed to be on this for about another 3 weeks, so I'm not quite sure what they are going to do. Lower the dosage? Say deal with it? Who knows. Luckily I'm scheduled to see my doctor tomorrow and Friday so I should have an idea of how long to expect this.

I'll follow up after my appointments. #fingerscrossed

Home Care



 



It can be overwhelming when you receive your first set of supplies from home care. The first shipment will be the largest since they are getting everything setup for you and your home care nurse. Here are a few the staple items you can expect to receive:

 

1. Alcohol wipes: These are used to clean your picc line before and after medication.

 

2. Flush syringes: Composed of 10ML saline that you will use to flush your picc line before and after your medication. Expect to receive A LOT of these!

 

3. Dressing Tray Change: Your home care nurse will change your picc line dressing once per week. In this kit where will be a face mask, vinyl gloves, polylined drape, chloraprep swab sticks (to disinfect around the line), dressing sponges, new picc line dressing, tape and a date label. (The nurse will write down the date which he/she changed your dressing)

 

4. Heparin: Your picc line ports can become "semi-clogged" making it hard to receive medication and/or take blood. The heparin helps to unblock any issues with your line(s). A 5ML syringe is used (yellow colored). (Cathflo can also be used, but nurse must order it from supplier).

 

5. Precision Guide Needle: To draw blood from other arm.

 

6. Ports/Extenders: The port(s) on your picc line will be changed weekly, as well as the extender. Extenders are great for those who want or are able to administer the medication themselves.  

 

7. Hazardous Materials Bin: This is used for the nurse to dispose of any needles or syringes during your care.

 

 

 

 

 

Getting a Picc Line

The surgery to remove the bone flap was relatively a piece of cake compared to the brain surgery I had just went through two weeks prior. It took less than 90 minutes and no one had to wake me up in the middle of it.

I spent the next 2 days in the hospital so they could get blood work and find out what type of infection I had. It can take up to 5 days to see what would grow on the culture, but mine was determined within 24 hours. It wasn't anything they hadn't seen before, so that was some good news!

Before I could be released they had to insert a picc line in my arm so I would be able to take IV antibiotics from home. The only good part about having a picc line is that is serves two functions: 1.) Receiving IV antibiotics 2. )It can also be used to draw blood. Each hospital has a dedicated "Picc Team" which usually consists of 2 people. These people are specifically trained to this. Now I'd like to tell you that it's "not that bad".....but I'd be totally lying! After having this done twice I would recommend taking pain medication (like percocet or whatever they have you on) about 30 minutes prior to this. Not really for the pain portion, but it really helps to relax you and make you sleepy. It was by accident that I discovered this. The nurse had just given me my meds and then the Picc Team arrived not too long after.

Overall the whole thing takes about 45 minutes. There is a decent amount of prep. Everything has to be sterilized because they are inserting a small tube in your arm that will stay in there up for a decent period of time.  They almost always choose the arm that you write because you'll keep the arm moving. Both times for me it was the inside part of my right arm.

So now here comes the "not so fun" part. They raise your hospital bed up to about chest height and pull disposable covers over your chest and face. You'll have to turn and look in the opposite direction....which I would recommend anyhow! The team uses an ultrasound device to find the vein that they will use (usually large with no blockage). Before they start they will disinfect the arm area 3 times. You will be given a local anesthetic (stick and burn) in one or two areas. You still will feeling sensation while the line is going in. Try and stay relaxed and keep breathing. Once the picc line is in they will attach the ports (1 or 2) that the meds will go into (and blood can be taken from). And a sealed covered will be placed over the area. They will flush the line or lines (if you have 2 ports) to make sure they are working properly.  After that a chest x-ray will be taken to make sure the picc line is inserted correctly (which is actually done right in the room).

Once the doctor approves the placement you're ready to go.....and extremely thankful the process is over!

Bone Infection?

Two weeks after my surgery I had a follow up appointment with my neurologist. I was so excited to get my staples out and finally be able to wash my hair! He removed the wrap from my head and had just started to take a few staples out when I felt something dripping on my neck. He immediately said "Hold on. I'll be right back." I had a feeling that this was not good news. In the meantime my mom and I were trying to figure out what the liquid was that I felt on my neck. It was brown and didn't smell the greatest. A few minutes later my neurologist came back in and said he had just paged the neurosurgeon because it was clear I had an infection. I thought okay....infection. They're going to give me some antibotics and it will clear up. I can deal with that. My neurosurgeon walked in and looked at the back of my head. Yep....infected. He said:  "I have good news and bad news. The good news is that we can treat your infection through IV antibiotics for a couple of weeks. The bad news is that we're going to have to admit you tomorrow for surgery to remove the bone flap due to the infection."

I just went through 6+ hours of brain surgery and now I was going back into surgery. Yikes. And there was more bad news....it was a two surgery process. First to remove the bone flap, insert a picc line and be on IV antibiotics for 4-6 weeks. I would have to let the area heal without anything protecting the open part of my skull (the size of half dollar). And second surgery would be at the beginning of December to put in titanium mesh and bone cement.

Three surgeries in 6 months and I didn't have a choice. It had to be done.

We left the doctors office and called my father and a few close friends to fill them in on the news. Back to the hospital in morning!

Recovery: Round #1

Recovering from brain surgery wasn't that easy. Not just because you have pain from the surgical area, but you're also dealing with inflammation and building your body back up. For this they usually put you on steroids. Most of the time you'll see side effects from taking these. For me it was sweating. I was always warm and uncomfortable unless the a/c was on and I had a fan blowing. Another downside to the steroid was that I wasn't able to be put on antibiotics to prevent infection from the surgery. And of course I was back on percocet for pain, which always made me sleeping. Every time I took them I would crash for about 2 hours, which is actually good for you. The BEST thing you can do after brain surgery is sleep. That is when your body can heal....so sleep as much as you can!

You'll also notice that the opposite side of your body will be a bit numb. For my surgery they went in on the left side of my head and my right side had the numbness. This is due to nerves being inflamed and it is completely normal. I had some issues walking and even writing, since I'm right-handed. I remember telling my doctor that I felt like my hand was on backwards! Trust me.... it will get better! Like me, you might always have some numbness years after surgery. Luckily mine doesn't really interfere with my everyday life. The numbness may be worse on one day. Just be cognisant of long lasting changes.

I recommend reading my blog about "Surgery Tips" if you haven't already. These steps helped me in during the recovery process.

Keep the area around your surgical site CLEAN! And most importantly do not keep it wrapped up for more than a week! You are more prone to infection (which is what happened to me. I'll discuss this in a later posting). To keep it clean you need to let it be exposed to air. Pull your hair away from it was much as possible. And within a week or so you should be able to starting gently washing it with baby shampoo on a daily basis. DO NOT clean the site with rubbing alcohol, hydrogen peroxide or dry shampoo.

About 10-14 days you should have a follow up with your neurosurgeon or neurologist to remove staples or sutures.

My Surgery Tips

I wanted to put together a few of the tips for patients that will be going through brain surgery or other major surgeries. I've been through 8 or so myself and currently recovering from one now, so I hope these help:

1. HYDRATE: Increase your intake of water 2-3 days prior to surgery date. This will help cleanse your system and help prep your body for anesthesia, pain killers, antibiotics, etc.

2. TAKE PROBIOTICS: I've been on these for years and I've noticed a huge different in my overall digestive health and immunity. I recommend if you aren't taking one now to get on them at least prior and after surgery. The antibiotics that patients are put on after surgery are usually strong and will kill any good bacteria in your gut. Probiotics help put back the good bacteria which aid in digestion, which also becomes important if you're on pain killers since they cause constipation. Which will lead me to my third point....

3. STOOL SOFTENERS/HERBAL LAXATIVES: Most doctors will prescribe a stool softener after surgery, but most of the time those don't do too much. I still feel it's a good idea to take them, but also combine with a herbal laxative (like Swiss Kriss) every other day until you're back to normal. This takes about a week.

4. WALK (If Allowed): They encourage movement while you're in the hospital so you don't get blood clots. This is important to do at home as well. If you have a treadmill start walking a little bit and build up to a decent pace, but don't push yourself. If you don't have a treadmill you can go to YouTube and pull up "walking exercises" that you can do in your own home.

5. MULTI-VITAMINS: During the first few days of recovery you'll probably be sleeping a lot and not eating too much. Therefore it's essential to take a good multi-vitamin (like GNC brand) to ensure you're getting all your nutrients.

6. CLEANSING WIPES: These are great to have on hand both in the hospital and while at home. They especially come in handy when you can't shower/bathe.

7. WASHABLE HEADBANDS: I found these helpful to use if you have long hair and are unable to wash it for a few days. It allows you to keep the hair out of your face. And you don't have to worry about germs because they're washable. I bought 3 myself on Amazon prior to surgery.

8. PICC LINE (If you have one): I'm on my second picc line and take a shower is a huge chore because you cannot get the picc line wet. The hospitals will usually give you a arm guard, but if you have an extender on your picc line this won't do it. Most doctors/nurses tell you to use saran wraps and tape and yes, that does help repel moisture. But sometimes you don't have someone always around to help wrap your arm. So I found a thing called "ShowerSOC" on Amazon and they are great! They come in two sizes and take about 10 seconds to put on. They come in a pack or 7 or 25 and are disposable. I get about few uses out of each one.

Have another tip? Please share!

Surgery Day 7.11.07

My surgery day had final arrived. As usual I had to be at the hospital around 4 or 5am with the actual surgery to begin around 8 or so. The prep for brain surgery takes a bit longer than a more standard procedure. This is mostly due to the fact that they have to shave parts of your head and attach probes to monitor brain activity. Of course this was something that was NOT mentioned prior. Therefore I had tears running down my cheeks as the nurse took a bic razor and shaved different parts of my head. I was determined to keep as much hair as possible! (Side note....this was the same time that Britney Spears had shaved her head, so I kept reminding the doctors and nurses to NOT go "Britney Spears" on me!)

After getting the IV all hooked up I waited for almost what seemed like 40 minutes before I was taken to the OR. I wasn't given any medication to make me more relaxed because there were additional probes and equipment they needed to hook up. Plus I had to be moved onto a special operating table. They notified me that they would inserting a catheter and a breathing tube. The breathing tube would be removed before I would be woken up in the middle of surgery so I could talk to the speech therapist.

*Note that most surgeries do insert a breathing tube, but because of the length of brain surgery (6+ hours) you can expect your throat to be sore and scratchy for the next day or two.

I do recall a few things when I was awoken in the middle of the procedure. The speech therapist kept calling my name and repeated her name to make sure I was aware of who she was. I was lying on my left side and she was pretty close to my face. I didn't notice anyone else in the room. Before she could say anything else I do recall mentioning that I was quite thirsty and would like a diet coke. I heard laughter from the others in the room. She proceeded to ask me the questions which we had gone over before. They also make you make faces and move your mouth and tongue. Again, this was a bit hard to do because your mouth is extremely dry. I'm not quite sure how long they kept me awake, but the overall surgery lasted about 6 1/2 hours.

Next thing I knew I was in the ICU (since they don't take you to the regular recovery area).

Prep time!

A few weeks before the surgery my neurosurgeon mentioned that TV One was looking for a candidate who would do pre and post interviews, as well as filming my actual surgery. Really? Me? Before I could even answer his question or even ask more questions my mother quickly jumped in and responded "NO." That was it. Although it would have been interesting to look back on it and have that documented for generations, I was DEFINITELY not in the emotional state to go through talking to a camera crew on multiple occasions. I guess this varies on the person, but I wanted control with what was being put out there. Not some third party.
Okay...now it was prep time. There was to do before surgery....EKG, blood work in case I needed a transfusion, meetings with a speech therapist. That's right...I was going to be only in "twilight" and not fully knocked out so I would be able to talk, which is common. Of course they wanted to stick to subjects that were neutral and wouldn't cause any emotional response. Makes sense.

One thing that I wish they had offered was patient support. You can talk to a nurse or doctor about expectations and outcome, but I wanted to talk to someone who had been through what I was going to go through. I wanted the REAL story. I did some online research, but I was scared to do too much and find something I really didn't want to see. Basically I was going into this whole thing blind and only had a casual idea of how things would turn out.

Ready or not....I had to go through it.

What's that on my MRI?

When you think of going to the doctor for a check-up you think the common things they check for: weight, temperature, and blood pressure. They look in your ears, nose and throat...maybe even check reflexes. And then in the case they can't find something wrong they revert to....the dreaded blood test!! (And yes, I dislike needles if you couldn't gather from my previous sentence).

 My case started off pretty similar, but my symptoms were not and had the doctor a bit puzzled. What were they you ask? Sweating. The strange part of it was my sweating was on one side of my body and not the other. Now if I was engaging in any type of physical activity I would sweat normally. If I was just sitting in a warm room and I would start to perspire....only on one side. Yep, I know it's very strange. Anyhow the doctor referred me to a neurologist who could do further testing to see what was causing this and if there was any treatment.

My first visit to the neurologist was very standard. We went over the same information and tests my regular physician did, but there was one additional part....a MRI. I was a bit nervous to be stuck in a tube where I couldn't move for 45 minutes and then on top of that have dye injected in the middle of the scan.....but I made it through! Now to wait until the radiologist read my scan and reviewed it with my neurologist. A few days later I finally received the call....."Overall everything looks standard and we don't see anything that would cause the perspiration issues." Dang. A dead end, but the words that followed that would change my life forever: "We do see a small blimp on your scan that looks like an enlarged blood vessel. We don't want you to worry, but we recommend following up with additional MRI scans every year or two just to keep an eye on it."

All that was back in 2002. Around the end of 2004 I would have another MRI scan from a different doctor (since I had moved from Cincinnati to Columbus). I have to admit I wasn't a big fan of his and when I got my second scan he basically just repeated everything I was told in 2002. To me that basically meant everything was fine. I went about the next three years like a normal mid-20 year old female and hardly thought about it until March 2007. I can't remember exactly what triggered it, but I went to my new doctor and filled her in on the details and how I was supposed to have follow up MRIs ever couple of years. I had my previous scans to show her and without hesitation the next thing I knew I was being sent to have an MRI with contrast. As usual I was more worried about the injection of the contrast rather than what they scan would show. A couple days later I was sitting in my cube at work and my cell phone rang. It was my doctor, not a nurse....my doctor. She shared the radiologists results. That small blimp that was presumed to be an enlarged blood vessel had doubled in size. Although it was still small (pea sized) the fact there was growth and it was around the area that controlled my motor function was extremely worrisome. As tears rolled down my cheeks the only question I asked was "What happens now?". Being very calm she replied "I'm referring you to the James Cancer Hospital. I'm going to have a nurse call and get an appointment setup for you."

Two questions came to mind: 1.) Could I have brain cancer? 2.) Was I going to die?