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Thursday, September 18, 2014

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.....

Tuesday, August 19, 2014

"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".  

Thursday, May 1, 2014


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!

Sunday, March 23, 2014

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.

Tuesday, January 28, 2014

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?" 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!

Tuesday, January 21, 2014

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. 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!

Thursday, January 9, 2014

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!