293 Days Later

293 days ago, my life changed. I didn't know what to expect and was afraid to think about what was to come. I know I’ve had my ups and downs, but the past 293 days has made up for downs that I’ve had in the past 6 years. Health wise, I can't say I’m better than ever, but it sure beats where I was on February 24th, 2011. Now, aside from the occasional headache and muscle spasms in my neck (due to the incision), I’m feeling pretty good. Below is the picture from when the bandages were removed and a picture from today of how the wound is healing.

Now I have the next 289 days to look forward to. In 289 days, I will marry my best friend. (guy friend obviously girls! J) It’s funny how things come around. I’ve lived in the same area most of my life and so has he. We went to middle school together where we rarely spoke but I always noticed him. Well ok, I may have stalked him with Lena a few times. He and I had totally different lives, friends, etc. so that didn’t make for a friendship to blossom. After middle school, there was the occasional wave when he would be in the neighborhood, but other than that, nothing. At some point (enter suppressed memories) I introduced him to my BFF Shannon. They became friends during a time that Shannon and I briefly grew apart.

At some point I moved to Oklahoma, got my heart broken, move home, had a baby, got engaged, had a baby (I know bad trend already), got my heart broken and had to learn all over how to stand on my own two feet while holding 2 beautiful baby boys. During the move, Shannon made a comment to me, “let’s call Jackie! He lives right down the street!” and Angela agreed. I, naturally, protested calling the boy that I remembered as the odd man out. As usual, Angie didn’t listen and called him anyway. He came by and helped move some furniture (THANK ALL OF YOU AGAIN WHO HELPED!!) and went on his way.

In January, when this blog came about, Jackie and I started to IM, facebook and text one another. Aside from our casual chit chat, I was so involved with heartache and my new found head problems; there wasn’t time for much else. Two days before surgery, I got a lunch invite from Jackie and who can pass up Italian pie?

After surgery, I was very focused on getting well and back on my feet. 4 ½ weeks after surgery, I was back at work and able to play with the kids. While I got tired pretty easily, it was better than sitting around doing nothing. While life returned to “normal”, I enjoyed an increasing number of movie and date nights with Jackie.

We left for a week long cruise and we came back as the future Mr. and Mrs. Jackie Johnson Jr. and life has never been better.

I didn’t know that you can have a relationship with someone that didn’t include the word misery.

I didn’t know that you could have fun staying at home and making fajitas while the kids run in circles and that the cherry on top of the night could be watching Little Shop of Horrors.

I didn’t know that there was someone that could and would love me for who I am, but there he is.

Here’s to what turned out to be an amazing year! CHEERS!

It's been a while

As most of you know I had decompression surgery on the 24^th of February. I was in the hospital for 5 days. The first day was a BREEZE but that was naturally due to the morphine pump. It didn’t help that the ICU was full so I was actually in the recovery area for 2 days. This was pretty awesome because my nurse was literally next to my bed the entire time. When the doctor said that it was ok for me to be moved to a room I was a little nervous because I had had someone there 24/7 at my bed side.

So in comes the transportation team. This part was one of the worst parts of the journey at the hospital. As the two GIRLS were wheeling me up to my room they were talking about the best places to hide so that they don’t get called to transport people. Really? I mean come on. Oh, and it gets better. So we get to the room and they move my IV and catheter over and tell me to move to the other bed. Ok, so I just had flippin neurosurgery and they want me to move myself. (for those that haven’t read or researched my other blogs, after this particular surgery, increasing intrathoracic pressure is a big no-no because it causes an instant headache where you feel like your brain is going to explode) so, I move myself and immediately call the nurse… no one comes. At this point my catheter bag is full and begins to back up. So I call the nurse again…. No one comes. Well if any of you know my mom, she rocks. We call the nurse AGAIN (this is in a span of about 2 hours) and says that she wants the charge nurse immediately and lo and behold, in comes the nurse. She, nurse lazy ass, comes in and says that they page the LPN and I said that she never came and if she didn’t empty the catheter bag that she needed to take it out. At that time, she did her job and emptied it. I mean come one! GEEZ!

After that the next shift of nurses came and it was as smoothing sailing as it could be for 2 days. I was PUMPPED that I was getting out and then bam… the pain meds decided that they didn’t want to work anymore. So they had to give me IV pain meds which makes for an extra day in the hospital. I was disappointed but I was also kind of scared to go home. So the next day came and I was discharged. Here are some pictures of before and after the bandages were removed.

During my visit I received tons of flowers and plants and had lots of wonderful visits from GREAT friend and family!!!

So the saga continues. I will save you all from the insane bathroom issues (your welcome) that came with the pain meds. Ugh. But after perfecting the right combination of meds I am feeling much better. Not top notch by any means, but better!

I went to my wound check last week to be told that my incision is healing perfectly and I even got a new “sympathy hair cut” from my aunt Angie to help to cover some of my scar.

My latest doctor’s appointment was to check to see how the swelling of the optical nerves is progressing/regressing and got some awesome news. My left optical nerve is back to normal and my right isn’t far from it. Although it does have some slight swelling, it has improved tremendously!

Next week I have an appointment with the neurosurgeon for the actual post-op check up and that appointment should determine when I can start driving again and when I can go back to work.

I know that staying home all the time might sound like a pretty great idea to some but it’s not my cup of tea. While I might complain about all the driving to bring kids to school and dealing with drama at work, I would take that over being home all day alone ANYDAY!!! Hopefully on my next post I will have some more good news! FINGERS CROSSED!!!

What came first?

So I had an appointment with my neurologist on Friday February the 11^th. She advised me that she had spoken to the neurosurgeon and they are unsure of what came first, the high ICP or the Chiari Malformation. In her explanation she said that high ICP can cause a Chiari Malformation and a Chiari Malformation can cause high ICP. In my last blog post you will remember that I mentioned that there was no change in the condition of the optic nerves. This fact is making the doctors lean more towards the high ICP being first but they are still unsure. A few weeks after surgery I will meet with the eye doctor to retake the optical nerve pictures and a week or so after that I will see the neurologist. At that time, she is hoping to be able to tell me the answer to the question of, what came first.

i'm ok to go.... ok to go

In case you have been under a rock and haven't seen my recent facebook statuses, I’ve been doing some pre-op things this week.

Wednesday I was supposed to do my pre-op blood work but I was over due on getting my IUD checked so I got that taken care of instead. (TMI, I know).

Thursday I had an appointment with the eye doctor to check to see if some of the swelling of my optical nerves had gone down (because of the diuretic) and they haven't. That is slightly concerning, but we will revisit that after surgery. After that appointment, I headed to the surgeons office to get registered for surgery. Next was down to anesthesia to get registered.

Friday (today) I did the pre op blood work, EKG and chest x-ray.

Per my primary doctor, I am OK TO GO for surgery. Its crazy how just 35 days ago I passed out and this whole chain reaction has started. While it's scary in a way, I see it as a new beginning. A life without headaches, without some crutch holding me back from living life to its fullest.

While I still have a few appointments to go, I have started counting down the day’s surgery.... 20 days. It’s amazing how 20 days can seem so close yet so far away.

Surgery date has been moved

I received a phone call from my neurosurgeons office just a few minutes ago and now I have some updated information on appointments and on surgery.


2/2/11              7:45PM - Pre Op Blood Work
2/3/11              9AM - Pictures of optical nerves

10AM - Surgery Registration

11 AM – Anesthesiologist

2/11/11            3:40 PM Neurologist

2/24/11            New Surgery Date

Decompression Surgery

As most of you know I met with the Neurosurgeon yesterday. He advised me that in his medical opinion that the surgery was necessary and showed me the proof via MRI image.  When Dr. Bui (Neurosurgeon) showed me my image verses a normal brain MRI, I was amazed at the difference.  Below is a picture of a normal MRI and a picture of my MRI so that you can somewhat see the comparison.

Note in the first picture, which is a normal brain MRI, all of the black area around the cerebellum. That is the area that your cerebral spinal fluid flows and brings nutrients to your brain and spinal cord.

Note in this picture, there isn’t much of the black area around the cerebellum. Also note how the cerebellum isn’t in its tight little bundle, it is more sagging into the brain stem area. This sagging is causing my brain to not be able to get rid of the extra cerebral spinal fluid because, in an essence, I have a plumbing problem!

The surgery that I have to have is NOT BRAIN SURGURY as there is no manipulation of the brain. It’s simply making room for the sagging cerebellum. Decompression surgery is performed under general anesthesia. It consists of removing the back of the foramen magnum ( http://en.wikipedia.org/wiki/Foramen_magnum  ) and often the back of the first few vertebrae to the point where the cerebellar tonsils ( http://en.wikipedia.org/wiki/Cerebellar_tonsils  ) end. This provides more space for the brainstem, spinal cord, and descended cerebellar components. A tissue graft is often spliced into this opening to provide even more room for the unimpeded passage of CSF.

I know that this sounds complicated, but the doctor is very confident that it will be a standard procedure and that he anticipates no problems. He also stated that he believes that there will be no need for a second surgery. (YAY!!)

SO, the surgery date is….. FEBRUARY 21, 2011. Details on that to come!


As for recovery, the Dr. is confident that I won't be out more than 4 weeks! and THAT is awesome news!

My First Blog

Well, here I go! My name is Stephanie and I live about 15 minutes from the great city of New Orleans. I'm a 28 year old single mom of two wonderful boys. I've started blogs and never made it to my first post but this time will be different. This time IS different. This time is different because I have something going on in my life that is truly life changing. Since your still reading, I’ll give the long version of the story.

Roughly 5 months ago I started having some dizzy spells when going from a sitting to a standing position. I attributed it to having too much to drink the night before, stress, or pretty much anything. About a month after the dizziness started, I started having slight vision loss in my right eye that got progressively worse. Soon after, I started getting headaches on the front left and back side of my head. Some times were more painful than others. Once again, I thought it was just stress.

It all came to a head on January 1st, 2011. I got up with my youngest son at 430 am to fix him a cup and change his diaper. I walked from the bedroom to the kitchen, fixed the cup, walked to the changing table and that's when the lightheaded/dizziness/vision loss started to set in. as I usually do, I just stood still for a second and waited for it to pass. Well, it didn't and I passed out. Yes, with my little one on the changing table.

The next thing I remember was hearing him crying and forcing myself off of the ground. As I stood up, I could feel myself about to pass out again so I (with crazy speed) secured his diaper, swooped him up and got him to my bed. After I got him safe and sound, I hopped in the bed and as I (think I) was about to pass out again, it started to fade. Next I broke out in a cold sweat and eventually fell asleep.

You might ask yourself, why oh why didn't you go to the ER? My answer is this: I was afraid to get out of the bed again! While that might not be the best answer, it is what it is! AND YOU WILL LIKE IT!

So, the story goes on.

Sunday on my way to church with my mom and kids, I told her what was going on and she agreed that I needed to see a doctor ASAP. On Monday I called my primary and scheduled an appointment for Tuesday (1/4/11). She ordered an ophthalmologist appointment for Tuesday (same day), a brain MRI for Wednesday (1/5/11) and an appointment for a neurologist for Thursday (1/6/11 - well it didn't start out on the 6th but it got pushed up to the 6th). So, I hurry over to the ophthalmologist office where they dilated my eyes and did an exam. The doctor found that both of my optical nerves were swollen (right more so than left) and advised me that I needed to see a specialist.

On Wednesday, I head to the hospital at 6am to do the brain MRI and then go to see the eye specialist. The eye doctor verified that the optical nerves were swollen, did a field vision test and took pictures of them for later comparison and sent me on my way. He advised me that at this point, I have NO long term vision loss which is a blessing in its self! Thursday (1/6/11) I headed to the neurologist's office. My mom met me there and we went in. After going through step by step how I ended up in her office, she did a series of touch your finger to your nose and walk in a straight line type of tests. She then reviewed the brain MRI.

Her findings on the MRI were: 1. my ICP (intracranial pressure) was higher than it should be and is causing the headaches in the front. 2. That I have what's called a Chiari Malformation. In plain terms it means that the cerebellum is sagging and can compress the spinal cord. As we all know from biology class, that is NOT good. (to read more on Chiari Malformation : http://www.mayoclinic.com/health/chiari-malformation/DS00839 ). She (the neurologist) put me on a diuretic that is supposed to help to bring my ICP down to help with the headaches and has the side effect that everything (INCLUDING BEER) tastes flat. That is a fail. The neurologist then ordered a ton of tests and an appointment with a neurosurgeon. No, you didn't read that wrong... a neurosurgeon. So far this week I’ve done an EEG, EKG, Echocardiogram, MRI (lumber), MRV and an ultrasound of the neck. The last test that I have to do is a Tilt Table Test.

I am meeting with the surgeon on Wednesday the 19th to review the test results and schedule surgery.

Your next question might be, "Steph/Crackhead/Sista (what have you) how are you coping with all of this?" I am actually coping just fine. I’m not freaked out but I think I’m still in a state of shock. It’s like, wow, I have to have brain surgery? Really?

Really really.