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!   

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!