Wednesday, January 26, 2011

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

Thursday, January 20, 2011

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!

Thursday, January 13, 2011

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.