How one surgery turned to five surgeries

What was supposed to be one brain surgery has turned into five over the course of 6 years. This was all due to a bone/surgical infection. Here's a breakout of what was done each surgery:

Surgery #1: Everything went well after my first surgery on 7/11/07. After two weeks I was back in my neurosurgeon's office to have the staples removed, which is very typical. After removing a few staples I felt drainage and a not so pleasant odor. My incision was infected. 

Surgery #2: I had to be admitted back to the hospital the next day to remove the bone flap and get a picc line in my arm so I could be put on IV antibiotics for 6 weeks. I had no skull piece or plate to protect the opening in my head during this time. Similar to a large size baby's soft spot. I had to extremely cautious not to hit my head or do anything rigorous. I was given a helmet that I was suppose to wear while driving. It mostly stayed in the trunk of my car. 

Surgery #3 (December 2007):  Surgery to put the titanium mesh and bone cement to cover the hole in my skull.

*After this surgery I noticed that the ridge from the mesh/cement was pretty thick and I thought it would eventually pierce the skin. It did after about 2 years. It started as a tiny opening and eventually got bigger where you could see part of the titanium mesh. In August of 2013 I woke one morning and noticed fluid draining from the opening. It was clear, but had a slightly thicker consistency than water. I immediately made an appointment with my neurologist and new neurosurgeon. They thought it was cerebral-spinal fluid leaking out, but I wasn't having symptoms like headaches or dizziness. Because the titanium mesh had been exposed to air they knew there would be some type of infection that could continue to get worse. Therefore I would have to go through another two surgeries in order to fix this issue. 

Surgery #4 (October 2013): Remove titanium mesh and bone cement. Culture these to find out what bacteria was growing on them. Another picc line was inserted into my right arm and I was on IV antibiotics for 7 weeks. Similar to surgery #2 I had nothing to protect my skull opening and had to be very cautious not to hit my head or be in a place where my head could accidentally be hit (like large crowds).

*A specific CT scan was done post surgery to get the exact measurement of the hole in my skull. A custom plastic piece was going to be made to fit my skull that had the durability of bone and fit flush into my skull. 

Surgery #5 (December 2013): The new plastic piece was put in and I was on oral antibiotics for 10 days after surgery.

Recent update: After 3 1/2 weeks post surgery I feel pretty much back to normal with no head pains. My energy level is increasing and my appetite is normal. I make sure I do some type of exercise everyday to build my strength. Nothing too rigorous because I am supposed to not sweat, which could cause bacteria to grow around the incision. I focus mainly on walking, yoga and some light strength training. I still have to use baby shampoo everyday for the next 2 weeks or so. As promised I will get some updated pictures too!   

Post Surgery Update Part 2

To pick up where I left off.....

Monday night wasn't the greatest due to the pain and nausea. I think it was one of the worst from any of the surgeries I had before due to the fact it was done so late in the day. My body didn't have any energy and all I wanted to do was sleep. Which in the hospital isn't the easiest thing because you someone is always checking in on your vitals, medication, scans, case managers, neuro team, etc.

Okay....Back to to food! My stomach was able to tolerate some applesauce and apple juice at around 5am on Tuesday. And about 8am I was moved to a regular diet....woo hoo! I'm a pretty plain eater in general so I just had some wheat toast and strawberry yogurt. Even though I am not a yogurt fan I do recommend having at least one per day while on antbiotics to get the good bacteria back into your digestive tract. I usually take probiotics on a daily basis as well.

I had to keep my head wrapped for about 36 hours after surgery. I had some leakage on the bandage which was in the shape of a heart (see picture below). One of the nurse's pointed it out for me and took the picture. I know it might sound a little strange, but I believe it was a sign from above sending love and letting me know that everything was going to be okay. :-)

Bandage is now officially off and I'm resting at my mom's house. My pain has subsided a bit, so I'm down to pain meds every 8 hours now. I can definitely tell when I need them again because I get sharp, shooting jolts of pain in clusters. And I'm using a breathing device every other hour when I am awake to help my lung strength/capacity again. Sometimes too much of that can cause head pains.

I am also dealing with more nausea again, but luckily I have meds for that. I haven't had much of an appetite today, but I'm doing to try and eat a little more in the next few hours. Hopefully the nausea will stay away this time!

And the best news for last.....NO PICC LINE this time!!! :-)
 

Ready or not....

The day has finally come. Well, actually the day before surgery has finally come. I'm supposed to be at the hospital at 5pm today. Long story....but it's so I can get in first thing tomorrow morning. Not how I really wanted to spend the night before surgery, but gotta do what you gotta do. 

Am I nervous? A bit. I'm not really nervous for the actual surgery, but for all the prep. I dislike needles so getting the IV is a pain. Although they do numb you first it still isn't a pleasant experience. I don't know if they'll hook me up tonight or wait until tomorrow morning. I guess I'll find that out in a few hours. 

I'm also supposed to get another picc line. Ehhh. That is thing I am most dreading. 

Alright, a few more hours of freedom so I'm going to enjoy it! 

*Praying everything goes well*

Namaste!

About 48 hours after my picc line was removed I was able to do something I haven't done is over two months.....yoga! I was careful not to overexert myself, but really felt I needed some good stretching. And the bonus was I was able to put some body weight on my arms. I'm still following doctor's orders and not sweating either, although I did get warm. This morning I can already tell the jello-like feeling in my right arm has gone down a bit.

Another thing I've noticed is a few little sharp pains in my head where my incision was. I can't really tell if it's the nerves trying to reconnect or what. I know I am somewhat paranoid because I'm thinking "is it infected??" now that I'm off antibiotics. I'm sure I am fine, but the doctors get you so worked up about it. Anyhow, back the the sharp pains: It was pretty frequent last night, but has subsided. I'll see if it acts up again today. 

Picc Line Removal

My 7 week course of antibotics had come to a close, so I had my picc line removed last night by my home care nurse. It was a simple procedure, although I am not one to watch! I would say the hardest part of the whole thing was removing the adhesive bandages that go around it. After that was done she cleaned the area, told me to take a deep breath and then proceeded to pull out the line. Afterwards pressure had to be applied for a bit and then my arm was wrapped tightly with tape. I was able to remove that earlier this morning.

You need to be careful for the first 24 hours as your arm/vein heal. So basically it's the same precautions as when you have the picc line in.....no lifting anything heavier than a gallon of milk and or rigorious movements.

The most exciting thing was I didn't have to shower with my arm sleeve on this morning!

My arm still feels like jello since I haven't used it much. I'm going to start to slowly build some strength in it by doing some yoga and light lifting. Unfortunately I'll be getting another picc line after my next surgery in a little over a week, so I'm going to enjoy this time as much as possible!

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!

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!