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 19, 2010
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
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
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
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
Mar 30, 2010
It's Not What I Can See, It's WHERE
So a quick update about my visit to the neuro-ophthalmologist yesterday, because my eyes are still killing me tonight and I really just want to sleep it off.
I met with Dr. Harrington at TOPROSA and the first order of business was a field vision test, which is standard procedure. Basically you stare at a tiny dot and click a button every time you see a flash of light. When I realized I wasn't clicking very often I figured that I was in trouble, especially when I seemed to be clicking a lot more for the left eye. Back in February when I visited my optometrist for new glasses I had expressed concern about my field of vision going black in the left eye while staring and was told this was normal. Turns out, I was correct in thinking that it wasn't. By the time I had finished the test, almost 30 minutes later, my eyes ached and I knew I had failed that particular test.
Now let me say that I have worn glasses since I was seven and contacts since I was eleven so in all honesty I don't really know what it's like to have clear vision. Every time I started to get fuzzy I just saw the regular eye doctor and got new contacts/glasses. About 2 years ago or so I noticed that my contacts always seemed dirty, no matter if they were a new pair and I even had that sensation when I had my glasses on. This was due to my astigmatism, I was told. Wrong. I discussed this with Dr. Harrington and he said that was classic for papilledema, which is a swelling of the optic nerve caused by the excess spinal fluid built up in my brain - which is also causing my headaches.
He did a few more exams, once numbing my eye with these yellow drops that stung like crazy and then dilating my eyes twice to get a good look at my retina and such. He never told me what he saw, only that he wanted me to have an MRI done of my eyes and I have to take two more field vision tests down at Baylor University Hospital in Dallas. So tomorrow I have the MRI and then Monday I have the other tests. He basically explained everything I already knew about the swelling and we discussed an optic nerve fenestration shunt, which essentially drains the excess pressure from your eye into the fatty tissue behind the eye. From everything I've read it's a very common procedure for pseudotumor patients and pretty easy. If that's the route I take, I'll be anxious to see how much better I can see.
Today my eyes have ached because they strained so much yesterday but I did manage to get my contacts in. Between that and all of the staring at the computer I did today it's no wonder they hurt; imagine the worse sinus headache you've ever had and multiply it by 10 - that's how it feels.
At any rate, that's what's going on now. Thursday morning I have my repeat lumbar puncture and I can't wait. Sweet relief!
Love, KC
I met with Dr. Harrington at TOPROSA and the first order of business was a field vision test, which is standard procedure. Basically you stare at a tiny dot and click a button every time you see a flash of light. When I realized I wasn't clicking very often I figured that I was in trouble, especially when I seemed to be clicking a lot more for the left eye. Back in February when I visited my optometrist for new glasses I had expressed concern about my field of vision going black in the left eye while staring and was told this was normal. Turns out, I was correct in thinking that it wasn't. By the time I had finished the test, almost 30 minutes later, my eyes ached and I knew I had failed that particular test.
Now let me say that I have worn glasses since I was seven and contacts since I was eleven so in all honesty I don't really know what it's like to have clear vision. Every time I started to get fuzzy I just saw the regular eye doctor and got new contacts/glasses. About 2 years ago or so I noticed that my contacts always seemed dirty, no matter if they were a new pair and I even had that sensation when I had my glasses on. This was due to my astigmatism, I was told. Wrong. I discussed this with Dr. Harrington and he said that was classic for papilledema, which is a swelling of the optic nerve caused by the excess spinal fluid built up in my brain - which is also causing my headaches.
He did a few more exams, once numbing my eye with these yellow drops that stung like crazy and then dilating my eyes twice to get a good look at my retina and such. He never told me what he saw, only that he wanted me to have an MRI done of my eyes and I have to take two more field vision tests down at Baylor University Hospital in Dallas. So tomorrow I have the MRI and then Monday I have the other tests. He basically explained everything I already knew about the swelling and we discussed an optic nerve fenestration shunt, which essentially drains the excess pressure from your eye into the fatty tissue behind the eye. From everything I've read it's a very common procedure for pseudotumor patients and pretty easy. If that's the route I take, I'll be anxious to see how much better I can see.
Today my eyes have ached because they strained so much yesterday but I did manage to get my contacts in. Between that and all of the staring at the computer I did today it's no wonder they hurt; imagine the worse sinus headache you've ever had and multiply it by 10 - that's how it feels.
At any rate, that's what's going on now. Thursday morning I have my repeat lumbar puncture and I can't wait. Sweet relief!
Love, KC
Mar 26, 2010
A Not-So-Good Day
Not-so-good is an understatement I suppose. More like IT SUCKED. I was rudely awoken from my sleep at 1:15am with a throbbing headache very similar to the one I had on Sunday. Only this time it was accompanied with horrendous nausea and for the life of me I couldn't fall back asleep. After tossing and turning for two hours I finally got up to use the restroom and that only seemed to intensify the throb. So two more hours in and I was still awake so I begged Brent to get me an icepack from the freezer. Normally that would help at least a little bit but no such luck. Finally just before 6:30am I woke him up and told him that I thought I needed to go to the emergency room - I was beyond desperate at this point. We got ready and I sat in my closet on the floor crying trying to put on my boots because I felt so ridiculous.
It was decided that we'd go to Baylor Dallas instead of a hospital in Fort Worth because I knew that my neurologist was on the board of directors there and I really hoped that would get me the help I needed. I didn't think I was going to make it there, I was soooo nauseated. When we finally arrived about 8am they checked me right in and as I'd been warned I got a "you have what?" when they asked why I was there. After explaining it to no less than six people they sent in a nursing student to give me my IV.
Now I know they have to learn somehow but let me tell you this poor girl was all nerves, couldn't find a vein in my right arm (even I can do that) and when she got to my left arm she butchered me. Poor Brent, he couldn't even watch. At any rate they gave me 2mg of Dilaudid and that really seemed to help - I'd never had it before but heard a lot about it on the DailyStrength board I've come to love. Only downside was that it seemed to make my nausea worse so they brought me something for it and couldn't get it in fast enough, I'd had nothing to eat so dry-heaving into the little blue bag was almost worse than actually throwing up. Whatever they gave me didn't work and so I really got sick, all over my bed. This frustrated me because we had to call three times to get a clean sheet but it turned out no one was ever contacting my nurse.
As soon as I got sick the Dilaudid wore off and so they gave me 2mg more and the cycle repeated itself, this time with Zofran for the nausea which still didn't work. My pain level was down to about a 7 so I felt okay to go home if they'd just keep me from throwing up a fifth time, so they said it was okay to take more Zofran and Darovcet and I got to leave about 3pm. Riding home was horrible but we made it and of course, when I got home I couldn't sleep so here I am. :-)
In the midst of all this I did manage to call both my neurologist and my LP doctor. Thankfully I'll be getting another lumbar puncture at 8am on Thursday and I am so ready, even if it only helps for a few days. The hope is that this one will reboot my system into recognizing what a normal CSF pressure is, otherwise I'll meet with a neurosurgeon to discuss the shunt surgery option. I have to say that the pain that I had Sunday and today seemed to be the worst yet so I hope it wasn't caused by the LP.
Sorry if this rambled but I am drugged and tired and hungry at this point. Let's just pray that tomorrow is a better day.
Love, KC
It was decided that we'd go to Baylor Dallas instead of a hospital in Fort Worth because I knew that my neurologist was on the board of directors there and I really hoped that would get me the help I needed. I didn't think I was going to make it there, I was soooo nauseated. When we finally arrived about 8am they checked me right in and as I'd been warned I got a "you have what?" when they asked why I was there. After explaining it to no less than six people they sent in a nursing student to give me my IV.
Now I know they have to learn somehow but let me tell you this poor girl was all nerves, couldn't find a vein in my right arm (even I can do that) and when she got to my left arm she butchered me. Poor Brent, he couldn't even watch. At any rate they gave me 2mg of Dilaudid and that really seemed to help - I'd never had it before but heard a lot about it on the DailyStrength board I've come to love. Only downside was that it seemed to make my nausea worse so they brought me something for it and couldn't get it in fast enough, I'd had nothing to eat so dry-heaving into the little blue bag was almost worse than actually throwing up. Whatever they gave me didn't work and so I really got sick, all over my bed. This frustrated me because we had to call three times to get a clean sheet but it turned out no one was ever contacting my nurse.
As soon as I got sick the Dilaudid wore off and so they gave me 2mg more and the cycle repeated itself, this time with Zofran for the nausea which still didn't work. My pain level was down to about a 7 so I felt okay to go home if they'd just keep me from throwing up a fifth time, so they said it was okay to take more Zofran and Darovcet and I got to leave about 3pm. Riding home was horrible but we made it and of course, when I got home I couldn't sleep so here I am. :-)
In the midst of all this I did manage to call both my neurologist and my LP doctor. Thankfully I'll be getting another lumbar puncture at 8am on Thursday and I am so ready, even if it only helps for a few days. The hope is that this one will reboot my system into recognizing what a normal CSF pressure is, otherwise I'll meet with a neurosurgeon to discuss the shunt surgery option. I have to say that the pain that I had Sunday and today seemed to be the worst yet so I hope it wasn't caused by the LP.
Sorry if this rambled but I am drugged and tired and hungry at this point. Let's just pray that tomorrow is a better day.
Love, KC
Mar 24, 2010
A Definitive Diagnosis
Yesterday morning I had my follow-up with Dr. Herzog, my new neurologist. Actually we met with Josie, one of his assistants, and she was equally great. We were a little late because of traffic so it took us almost two hours to get there. I have been incredibly nauseated since Sunday and so riding in a car is not fun for me at all.
Speaking of Sunday, it was horrible. We had to take LB home which is bad enough but I woke up with a headache. Well Saturday I woke up with a headache and severe nausea so I took a Zofran and went in to work at the store. The headache never got any better or worse but the nausea let up just a smidge so I could go to my baby cousin Jack’s first birthday party. We got to bed early Saturday night after a rough evening with LB and I didn’t sleep very well, hence the Sunday morning headache. Like an idiot I chose to drive the entire way to Perry, all 4.75 hours of traffic when I knew I needed to pull off but couldn’t find a good on/off exit. Brent wasn’t happy with me.
When we finally got to Perry and when I got out of the car I was swimming. I took LB to use the potty and as soon as I squatted down to help him it felt like I was hit with a hammer. It’s bad when a three year old asks if you’re okay. When we finished I ordered some sweet tea and sat down at the table so we could discuss visitation with LB’s mom. We didn’t wind up leaving until 5:30pm and I could’ve sworn I was dying. I know I can’t die from this but I wasn’t sure that I couldn’t have a seizure – that’s how bad I was hurting. No clue what a seizure is like but that had to be the next step, and I refused to take pain medicine for fear of a rebound headache and besides that shit doesn’t work anyhow. I strongly considered having Brent drive me straight to the ER at Baylor Dallas and begging for a lumbar puncture but felt bad about leaving the dogs longer than necessary (my priorities are too motherly). After some meditated breathing I finally dozed off.
Monday morning was the same scenario, extreme nausea but a slightly less painful headache. I made the drive into work and after walking into the office I became extremely dizzy. This continued on all day until I really got scared at lunchtime, too scared to drive and feeling too weak to even make it to the deli downstairs. So I called Brent and begged him to come get me, and my wonderful husband did just that. Driving would not have been safe for me or anyone at that point. We drove home and I rested on the couch for a bit while he ran an errand and then we took Stormy to the vet for her shots. It was miserable. We went back home and I tried to sleep, incredibly anxious for my appointment the next morning.
Back to yesterday – Josie confirmed what I’d been suspecting since early February. I have pseudotumor cerebri or more correctly known as idiopathic intracranial hypertension. In laymen’s terms my body is fighting a brain tumor that doesn’t actually exist. I have an abundance of spinal fluid that is creating undue pressure on my brain and causing immense pain that medication won’t touch. We were really hoping the relief from the lumbar puncture would’ve lasted longer than it did.
So what’s next for me? Unfortunately I am unable to take the commonly prescribed medication, Diamox, because of the adverse reaction I had to its sister medication, Topamax. Diamox is much stronger than Topamax and it’s just not considered safe for me. That leads me to have another lumbar puncture, a fact which I am very excited about. I can smell the relief already, even if it’s only for a couple of days again. Also, I’ll meet with a neuro-ophthalmologist on March 29th to have my vision tested and make sure my eyes aren’t in trouble. After that I’ll meet back with Dr. Herzog on April 22nd and he will refer me to a neurosurgeon to discuss possible surgery.
Throughout all of this I have been optimistic. I knew what was wrong before the doctor confirmed it so I’ve had time to do a lot of research and come to terms with it. Honestly I feel pretty at peace with the entire thing – I know my options and what the limitations are. It can be a lifelong battle but I will prevail. At this point I will do just about anything for relief. There is an awesome support group on DailyStrength that I have found that have been wonderful, particularly one girl who lives close to me and is about the same age and has been through hell. Her story is very inspiring and she is so strong. While I certainly hope that surgery can be avoided it’s almost a certainty and I’ll just deal with it when it comes.
Love to all,
KC
Speaking of Sunday, it was horrible. We had to take LB home which is bad enough but I woke up with a headache. Well Saturday I woke up with a headache and severe nausea so I took a Zofran and went in to work at the store. The headache never got any better or worse but the nausea let up just a smidge so I could go to my baby cousin Jack’s first birthday party. We got to bed early Saturday night after a rough evening with LB and I didn’t sleep very well, hence the Sunday morning headache. Like an idiot I chose to drive the entire way to Perry, all 4.75 hours of traffic when I knew I needed to pull off but couldn’t find a good on/off exit. Brent wasn’t happy with me.
When we finally got to Perry and when I got out of the car I was swimming. I took LB to use the potty and as soon as I squatted down to help him it felt like I was hit with a hammer. It’s bad when a three year old asks if you’re okay. When we finished I ordered some sweet tea and sat down at the table so we could discuss visitation with LB’s mom. We didn’t wind up leaving until 5:30pm and I could’ve sworn I was dying. I know I can’t die from this but I wasn’t sure that I couldn’t have a seizure – that’s how bad I was hurting. No clue what a seizure is like but that had to be the next step, and I refused to take pain medicine for fear of a rebound headache and besides that shit doesn’t work anyhow. I strongly considered having Brent drive me straight to the ER at Baylor Dallas and begging for a lumbar puncture but felt bad about leaving the dogs longer than necessary (my priorities are too motherly). After some meditated breathing I finally dozed off.
Monday morning was the same scenario, extreme nausea but a slightly less painful headache. I made the drive into work and after walking into the office I became extremely dizzy. This continued on all day until I really got scared at lunchtime, too scared to drive and feeling too weak to even make it to the deli downstairs. So I called Brent and begged him to come get me, and my wonderful husband did just that. Driving would not have been safe for me or anyone at that point. We drove home and I rested on the couch for a bit while he ran an errand and then we took Stormy to the vet for her shots. It was miserable. We went back home and I tried to sleep, incredibly anxious for my appointment the next morning.
Back to yesterday – Josie confirmed what I’d been suspecting since early February. I have pseudotumor cerebri or more correctly known as idiopathic intracranial hypertension. In laymen’s terms my body is fighting a brain tumor that doesn’t actually exist. I have an abundance of spinal fluid that is creating undue pressure on my brain and causing immense pain that medication won’t touch. We were really hoping the relief from the lumbar puncture would’ve lasted longer than it did.
So what’s next for me? Unfortunately I am unable to take the commonly prescribed medication, Diamox, because of the adverse reaction I had to its sister medication, Topamax. Diamox is much stronger than Topamax and it’s just not considered safe for me. That leads me to have another lumbar puncture, a fact which I am very excited about. I can smell the relief already, even if it’s only for a couple of days again. Also, I’ll meet with a neuro-ophthalmologist on March 29th to have my vision tested and make sure my eyes aren’t in trouble. After that I’ll meet back with Dr. Herzog on April 22nd and he will refer me to a neurosurgeon to discuss possible surgery.
Throughout all of this I have been optimistic. I knew what was wrong before the doctor confirmed it so I’ve had time to do a lot of research and come to terms with it. Honestly I feel pretty at peace with the entire thing – I know my options and what the limitations are. It can be a lifelong battle but I will prevail. At this point I will do just about anything for relief. There is an awesome support group on DailyStrength that I have found that have been wonderful, particularly one girl who lives close to me and is about the same age and has been through hell. Her story is very inspiring and she is so strong. While I certainly hope that surgery can be avoided it’s almost a certainty and I’ll just deal with it when it comes.
Love to all,
KC
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