Apr 19, 2010

A Date with a Shunt

When my neurosurgeon’s nurse, Peggy, called me this morning it really hit me: I’m having brain surgery, and I’m having it soon. Something about that call really sort of freaked me out.

Next Tuesday, April 27th at 7:15am I’ll be going under the knife. While this isn’t my first time to have surgery, this is the first time I’ll ever have to stay overnight and to top it off I’ll spend a day in the ICU. This may be the biggest freak out for me – that, and the fact that I’ll be in ICU is because they’re drilling into my brain! Are my headaches really that bad?? I think I have one just thinking about this! But alas, I know that they really are bad and getting worse and this truly is my only option at this point.

The procedure itself will take about 3 – 4 hours from start to finish. Dr. Coimbra will make an incision above and slightly behind my right ear, where he’ll drill a hole in my skull and insert a shunt catheter into my ventricles. From there a distal catheter will be run under my skin down my neck, through my chest and into my abdominal cavity. This will allow the excess spinal fluid that I produce to drain into my tummy and hopefully help reduce or even eliminate my headaches. At the very least it will restore the vision that I have lost. After all is said and done I’ll spend Tuesday in the ICU and then on Wednesday I’ll be moved to a regular room and hopefully be sent home by the evening.

Another freak out for me is my hair. I love my hair, and the thought of them shaving it off is frightening. Today when I asked Peggy about it, she said to not be shy about telling the nurses not to get razor-happy, and that they should only shave off a patch about the size of my palm that can be covered up with my remaining hair. I guess I’ll know the real damage when I wake up.

So that’s it! I have a lot to do between now and then and making sure that my house and my husband are prepared are number one. Brent will be taking off with me next week and I’m very grateful for that because I will need him. It’s going to be difficult for me to stay still and inactive but I will just have to tell myself I have no choice. Maybe, if I’m lucky, I’ll catch up on all that sleep I’ve been missing lately.

Love, KC

Apr 16, 2010

A Means to an End

Today I met for the first time with my neurosurgeon, Dr. Coimbra. I will admit that Brent was unimpressed, but we’ll get to that later. As soon as I knew who I was seeing a couple of weeks ago I began Googling everything I could on him – and to be honest, what I found was 50/50. For everything I read he is incredibly skilled in his profession but his bedside manner is, well, lacking. Despite this fact I made my appointment and decided to give him a go.

Beside manner is definitely an issue – but I can attribute it to two things I noticed about him: he appears to be very shy, but he also is damn good at what he does and he is very upfront and honest. This was Brent’s problem with him, he didn’t think that he was very approachable and he was very cut and dry. For me though, I thought it just fine. Here’s why: I’m not interviewing candidates for best friend here. This is a man who is going to cut into my brain and hopefully eradicate my headaches for good. Who cares if he’s shy, he’s a stud in the operating room and that’s all that matters to me. The man taught at UT Southwestern for almost two decades and has written and/or supervised so many studies on shunts it’s amazing – not to mention the number he puts in on a regular basis. This is the guy I want in my corner, and the rest will work itself out.

So that’s the verdict of today: both Dr. Coimbra and Dr. Herzog believe I’m an excellent candidate for a shunt procedure given my history of unsuccessful lumbar punctures and drug intolerance. More specifically, I’ll be having a VP (ventriculoperitoneal) shunt placed, which will go in just above my right ear with a catheter leading from it down behind my ear and down my right side into my stomach. It sounds scary and it is, a little, but I’ve researched my little heart out and I know the risks involved – but more importantly I KNOW that this is what must be done in order for me to have the chance at a “normal” existence with no more headaches.

Brent hasn’t come to terms with this yet and I don’t blame him, but I know it will come with time and right now he’s just worried sick. Next week I should hear from the surgeon’s office regarding scheduling but I have no clue how soon this will take place – my guess is by the end of April. I do appreciate every single one of you who have said an extra prayer for me and my family, we are truly blessed.

Stay tuned for updates, and in the meantime enjoy this little bit I found on the procedure. Oh, and please, if you or someone you know suffers from this dreadful disease or you'd just like to learn more, check out the IHRFoundation, the only organization in the world dedicated to finding a cure for this disease. http://www.ihrfoundation.org/

Love, KC

Apr 15, 2010

The Eyes Have It

Yesterday I meet with my neuro-ophthalmologist, Dr. Harrington, to follow up from my recent OCT & VER tests. I was very anxious leading up to the visit because I knew that I had problems with my eyesight and I was in fear of needing the optic nerve sheath fenestration – where they cut a slit in your optic nerve to allow the pressure to drain out behind your eye. However when I got there he actually had good news!

He confirmed that I have bilateral papilledema – which is swelling of the optic nerves in both eyes. That being said, he said that he didn’t want to go forth with the ONSF surgery unless my neurosurgeon thought it necessary. You see, the ONSF has a 50/50 success rate and for some people it helps – but for some it does nothing. In Dr. Harrington’s opinion, if Dr. Coimbra deems it necessary for a shunt (which he believes he will) then the shunt will fix the papilledema and there’s no need for two procedures. Can you say YAY!?

So tomorrow I meet with my neurosurgeon, Dr. Coimbra at 10am. Hopefully this will be one of the last appointments I have to endure for a good while. I’m still having daily headaches and my vision seems to be getting worse, if that’s possible.

On a better note, this past Monday was my husband’s 26th birthday and we celebrated by spending the day at the Fort Worth Zoo. Last year we took LB for his 2nd birthday and it was amazing to us to see how much he’s changed in that time period. You notice it, subtly, but when you look at pictures it’s night and day. My little man is growing up too fast!

Until next time, KC

Apr 8, 2010

Playing Catch-Up

I’ve been a bad blogger this week. There has been so much going on and I just haven’t had the time or the energy to get it out, so here goes.

Last Thursday, on the wonderful April Fool’s day, I had my second lumbar puncture done. Going in I didn’t have too bad of a headache but I was very anxious to get it done and have three glorious days like I did the first time. However my body had other plans, apparently. Waking up from the anesthesia was a lot more difficult and I really felt drugged, not to mention that my headache was WORSE! My opening pressure was also higher this time at 390mm/H20 and so my best guess is that my body was adjusting to having so much spinal fluid taken out. When we got home I actually took a really great nap, about four hours and I think it was because I got to sleep on my side this time. The nurse said that as long as I kept my legs straight and put a pillow between them I’d be fine so I did and it made a tremendous difference.

When I woke up Friday morning I was fully anticipating no headache but I was sadly mistaken as it was worse than Thursday. Hoping that it was a spinal headache I spent most of the day in the bed but laying down didn’t seem to help; I was also suffering from what I assumed to be sinus/allergies and though that could be the cause of the headache so I took Sudafed all day. Nothing helped! When the doctor called to check on me she suggested I drink all the caffeine that I could but since we don’t keep it in the house I was screwed and had to wait on Brent to get home to bring me some. My mother kindly reminded me that I could drink coffee so I made a whole pot, added sugar and cream and put it in the fridge – managing to consume two quarts of coffee in 24 hours.

Saturday morning was still worse and to top it off the mild fever I’d run all Friday night was creeping up which made me pretty nervous. Tired of being cooped up in the house I ventured out to Wal-Mart in the morning and got stuff for Easter but it really wore me out. After I got home I sat on the couch and colored three dozen eggs and watched Discovery Health all day, feeling worse by the minute. After Brent got home we decided to go back to Wal-Mart for some Tylenol as my fever was up to 100.9 at this point and if it hit 101 I was to call the doctor – and I didn’t want that. I was really hopeful that I would feel better Sunday morning because I wanted so badly to go to the Easter service at church, and I had a ton of cooking and places to visit. Brent put his foot down though, and said he wouldn’t wake me up to go and if I woke up on my own we’d do our thing.

I woke up at 10:00am – church started at 9:30am. So much for that. I still felt like crap and was trying Sudafed Sinus/Allergy as well as prescription decongestants because I could NOT breathe out the right side of my nose if I sat down; I was fine standing but as soon as I sat all bets were off. Brent had put a lovely brisket on the smoker the night before and so I got up, showered and started cooking for his parent’s house. We left for my Dad’s house about 1:15pm and had a great time with family and enjoyed awesome food. My new baby cousin Landon stole my heart with his Eskimo hair and I just wanted to gobble him up! We both realized how much we still want a baby and thoroughly enjoyed playing with little Landon. After that we went to Brent’s parent’s house and ate even more food and watched The Blind Side – what an amazing movie! We didn’t get home until after 10:30pm Sunday and I was exhausted.

I didn’t have a headache Monday or Tuesday, just pains, but it was back on Wednesday. We broke down and bought a ceiling fan on Monday and Brent and I installed it – twice – and have been so happy to have it as we like our bedroom cold. Tuesday I called Dr. Herzog’s office asking for the name of the neurosurgeon I was to be referred to and found it would be Dr. Caetano Coimbra. Can’t find much information on him but they should be calling by Friday to schedule my appointment with him and I am very excited.

So that’s pretty much it. My headache is back in full swing, Wednesday sucked royally and Thursday is headed that way too. I am so tired of waking up feeling like I got hit by a truck, I just don’t know how to fix it. Sleeping has been a real challenge since this LP because my back is still numb; it doesn’t hurt exactly, but it feels like someone is pushing really hard against that expanse of my back and it’s very uncomfortable.

For the good news: LB will be here Sunday! This week will start our two weeks on / two weeks off routine. We will exchange him every other Sunday so that our time will be shared equally and we can see him as much as possible until he starts school. I can’t even begin to explain how excited we are about this. Monday is my husband’s birthday and so we are taking the day off and spending it at the zoo – weather permitting, since now it’s supposed to rain. Plus, it’ll be a treat for LB since he’s having to have another CBC done that morning and will most likely hate me for a while.

It occurred to me that I have failed miserably on the promise of posting pictures so I need to get on that. Maybe I’ll figure out how to post an extra tab with just pictures.

Until next time, KC
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