Hello Dr Newton!

It's not everyday you receive a direct call from your neurologist! And today was that day.....

I had been recently talking to his nurse about when to schedule my yearly MRI scan. They wanted to see me this year and my last scan was after my December 2013 surgery. As many know after one or two surgeries your pockets are pretty empty. My goal was to schedule my scan in early 2015, but the nurse wanted to just double check with the doctor. Mainly this was due to the fact that I was suppose to have a follow up with him after surgery, but I cancelled it. I had all my surgery follow ups with my neurosurgeon, so why pay a $60 co-pay to be told the exact same thing.....right?!?!

Anyhow, back to the phone call......

Apparently they are doing a new study on certain brain tumors/cysts. As Dr Newton mentioned to me on the phone how very, very, very rare mine was. (I am sure my BP went up a bit when he said that) So rare that they wanted to go back and get all my pre-operative scans from different facilities. He asked if I personally had any of these. Hmmm......that was a big fat NO. I don't know many people that have copies of there MRI/CT scans. X-rays....maybe. I called my primary doctor and got all the info of where my scans (pre-op) were done. Now the rest is up to them......

I guess by the time I go back in early 2015 I will have an idea if my case was used! Too bad I can't get royalties out this!! Darn.....

"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".  

Medication....zzzzz

A few months ago I was at a party and I was chatting away with a friend that I've known for about a year now. I believe we were discussing alcohol....what we like and what we don't, etc. To my surprise she mentioned that she had epilepsy and was on a combination of seizure medication and had to restrict her drinking, like me.  I had NO clue and was surprise she was pretty open about it. But again if something where to happen if she's out and about you would want people to know what was going on and what to do. Anyhow...back to her meds! She goes between Dilantin and Keppra. I'm not sure why they doctor has her switch because normally you don't want to fluctuate between meds and/or doses. I myself have been on Keppra since 2007. I was briefly on Dilantin after my initial surgery, but they didn't want me to stay on it for some reason. I know it's an older medication and one that people with more serious seizures tend to take. One of the things people tend to bring up when you're on the same medication is "What are your side effects??" With seizure medications there seems to be more noticeable ones. Doctors always say your body will get use to it with time and they usually go away. Well, they are not always right. Especially in the case of seizure meds! Two of the biggest side effects are tiredness/low energy and vivid dreams. And my friend and I experience both and they really never go away. The vivid dreams subsided a bit, but they still affect me. The worst one is the low energy and that I struggle with every day. Sigh. There's really not enough caffeine in the world that will change that either. I can only assume it will get worse with age. Hopefully by that time there might be some newer type of medication that won't have that side effect. Fingers crossed for the future!

Please share what your experiences have been with seizure medication!

Side Effects

One of the scariest things about any brain surgery is the side effects you face following it. My tumor/cyst was close to area in the brain that effects motor function. I noticed that I do have issues with speech which pretty much occur on a daily basis. Most people I know say they don't really recognize it, but I certainly do. I occasionally get numbness in my right leg/foot, but overall that's very minor.  

I came across this news story about a 12 year old girl in Texas that had a benign brain tumor removed and it damaged part of her hypothalamus in the process. As a side effect she now suffers from uncontrollable hunger. Cincinnati Children's Hospital will be performing the gastric bypass surgery. More information can be found the link below. Although I feel this will help in the short term I don't know if it's the right long term solution. 

http://abcnews.go.com/Health/texas-girl-12-hungry-gastric-bypass/story?id=22992991

Why I am getting sick more often?

In the last 25 years (that feels weird to say) I seem to average about 1 bad cold per year. It pretty standard and usual hits me around Fall/Winter. The typical cold and flu season. In the last 2.5 years I have noticed that it's about 2 or 3 a year. As we speak I am about 2 days into a cold, which would make it my 4th in the last 12 months. What the heck is going on?? Of course I turn to Google and do a typical search:

"Why am I more  getting sick more often?"
"Are you more susceptible to getting sick when you get older?"
"Do surgeries make you more susceptible to getting sick?"

Okay.....you get the picture!


I get the standard links to what causes people to get sick:
1. Lack of a nutritional diet (not a factor)
2. Dehydration (no during the week...maybe somewhat on weekends)
3. Sleep deprivation (Somewhat, especially during the week)
4. Germ contact (yes....but I wash my hands and use sanitizer like it's my second job)
5. Immune disorders (oh lordy I hope not!)
6. Stress (Yes....constant)

Even though I do have a couple of "yes" answers it really something that isn't new. At least in the last 10 years. I do think my work environment plans a roll. Mainly because the number of smokers here that constantly go in and out all day. I've noticed that my co-workers are more sick than where I have been in the past. Therefore I don't think my susceptibility has changed or is a result from multiple surgeries. I guess my germaphobe ways will just continue.....

Sorry Troy!

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!

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.

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!!! :-)
 

Post Surgery Update

I'm keeping this short since I'm having some nausea, but surgery went well.

I was admitted Sunday at 5pm, but didn't have surgery until 5pm on Monday. I was very thirsty and hungry to say the least. The total surgery time about about an hour an a half. I made it back to my hospital room around 7:45pm and felt like crap!  I do remember being in recovery and the nurse asked me how my pain was and I responded "High...like I just got hit hard in the head with a baseball bat." Overall the pain meds didn't completely take away the pain, but the helped about 70%.

Okay...not feeling good, so I'll finish later.

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.

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!

~*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.