Back in the swing of things

I'm 36 days post-op and couldn't feel better. I actually feel like my "normal" self again. The "sparks" or "zaps" I used to get around my incision have subsided. Although I did experience one or two over the weekend, but that was during the consumption of some alcohol. I am note sure if that really had anything to do with it. As usual I am still careful not to drink too much or workout too hard. I'm doing everything pretty much on a gradual basis. 

I do have a confession. I had my hair cut and highlighted a week ago, despite my neurosurgeon's warning. I've been through this before and technically waiting 4 weeks is pretty standard. Plus they use foils so the color never really is on your scalp. And of course my incision area wasn't highlighted. My stylist was also very careful with making sure there was little to no heat on my head. Result......no issues!

I'm scheduled for a follow up at the end of the month, but I might push that appointment back just a little :)

On a completely different side note I have a request. If you've been reading my posts you know the last year has had it's good share of ups and downs. And right now a certain person in my life was hit with another "down" yesterday. I ask for prayers and good thoughts that things will turn around and this person will gain strength and get through this. And hopefully come out better than before. Thank you!

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!   

Last day of home care

Today I was officially discharged from home care! Woo hoo! Although I loved my home care nurse I was definitely ready to be done. This was probably the easiest visit because I didn't have a picc line, so there was no dressing to change. We just did vitals and she looked at my incision to make sure it looked okay. She did notice that the swelling had gone down, skin was not red at all, and that my stitches were looser.... which means I'm healing pretty well. As I mentioned to her that after the 5th time my head is pretty used to it and knows what to do!

Later next week I have an appointment with my neurosurgeon to get my stitches removed. Which I am soooo ready for since they have started to itch a bit. Plus I really want my hair cut and highlight within the next couple of weeks, so can't have stitches for that!

Lastly I've been cleared by my surgeon to start working from home starting on Monday. Not that I really want to, but I could use the money since the medical bills are starting to roll in. *Lovely*

Shower....STAT!

I just finished my first shower since surgery on Monday and it was glorious to say the least! I've been able to take baths, but not wash my hair since before the surgery. I don't know what the concoction they put on my head, but it was like trying to get out cement. Similar to last time I am only allowed to use baby shampoo because of the non-irritation factor. Although I do use conditioner on my ends to help with all the knots and loose hair that was shaved. It was pretty obvious that I had a lot less hair from the surgery in October. I do have a lot of hair in general, but I'll have to wait to see how it looks when it dries. Again....no heat (like blowdryers) on the head for awhile.

Attached are my post op head pictures from October (surgery #4) and the most recent December one (surgery #5). They put the plastic piece in my head which you can kind of slighty make out in the picture. The area is still swollen, but that should go down within the next week.

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!

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!

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.