"Perfect" Health?

Gosh! It's been awhile since I've had a recent blog entry. I guess that's a good thing if you think about it. Nothing has really gone wrong and I haven't had any accidents...or surgeries for that matter! I still get little spurts/shock in my head and tingling on my right arm and leg/foot. I'm trying to keep my stress levels down, but who am I kidding. High stress is my norm.....unfortunately. 

We did have a health/wellness clinic at work today. They do all the typical things.....take vitals, measure height/weight and stick your finger to do simplistic blood work. As usual my total cholesterol is awesome (156 mg/dL). I have a lot of the good cholesterol (HDL: 77) and below normal of the bad (LDL). My blood pressure is perfect and my BMI is totally normal. The nurse says to me "You're the poster child of perfect health"....hmm, isn't that ironic?!? On paper my health is "perfect", yet they can't tell my hair is still growing back after my 5th head surgery. They can't see the large scar on my knee from the melanoma I had removed back in 2010 or the scar on my neck from my lymph node that was removed in 2001. 

Of course I didn't mention any of those things to the nurse. I just embraced the fact that to her I had "perfect health".  

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!   

Sutures out

My sutures were removed last Thursday and needless to say I was very happy! My surgeon was impressed at the way my incision was healing and lack of any complications. Occasionally I get a few light, sharp pains, but they are pretty few and far between now. I still have restrictions on what I can do... like working out, coloring/cutting hair, etc. 

My surgeon is pretty stubborn so I basically take what he says and cut it in half (or less)! For instance he wants me to wait until May to get my hair highlighted....basically 6 month post surgery. That's a joke. I've been through this before and even other neuro teams in hospitals say 3-4 weeks. I refrained from telling him I booked an appointment for next Tuesday. Yeah....I'm stubborn too!

My hair is continuing to grow at a pretty decent rate. I'm hoping to have an updated picture for my next post! Stay tuned! 

Goodbye 2013!

I had a feeling this year was going to be rough when I started having some major car problems on New Years Day. I couldn't have predicted the roller-coaster this year has been. I've had a lot of major "downs" this year with family and health issues, which I tend to focus on. I also remind myself that I've had some pretty good "ups" as well, including getting engaged to a guy who has seen me at my best as well as at my complete worst and is there for me no matter what. I couldn't have made it through 2013 without him. And successfully recovering from two surgeries.  

It will be interesting to see what 2014 may bring. It's pretty much a guarantee that there will be more highs and more lows, but I just ask for 3 things for myself and the people closest to me: Good Health; Happiness; Love 

Here's to 2014!

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.

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*

Getting ready for surgery #5

After weeks of trying to get my surgery moved up it has been officially confirmed that my last surgery will be next Monday. Which is when it was originally scheduled for.....*sigh*. I had a feeling that would be the case. I'm still waiting on the time, but I assume since I had booked it weeks ago it will be early in the morning. 

For this they will be putting in a plastic piece that was made to fit exactly the size of the hole in my skull. They had 2 made so I wonder if I can take the other one home....hey, I paid for it! At least I won't have to worry about any ridges with this piece unlike the bone cement and titanium mesh from before. 

This recovery should be a lot easier since I will only have to be on IV antibiotics for one weeks after surgery instead of 6 to 7 weeks. I know my skin might take a little longer to heal this time because it is the 5th time it's been cut open. 

I'm more anxious than nervous about the surgery. I'll be praying that everything goes well and I have an easy recovery.

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?