8-13

Today is August 13th; it's my mom's birthday. My goal for the day was to make the complete focus my mom's 66th birthday, and not waste time dwelling on the fact that this day also marks three years since the brain surgery that changed her in such a way that she'd never be the same as she once was. Three years ago today, when I hugged and kissed her good-bye at the double doors leading into the surgical wing, I prayed it wouldn't be the last time I saw her alive. I am thankful today that my prayers came true, and that I have been able to celebrate her last three birthdays with her, and have her in my life during all of the time in between. It has taken a lot for me to be able to see it that way. I spent the first 3 months or so in shock waiting for her to wake up, and then the next 9 months waiting for her to get better. I kept a journal of everything she was missing to one day share with her when she finally "came to". By year two I started to get nervous and went trough a very angry phase, mixed with a lot of denial. I wanted to sue every doctor that ever laid a hand on her, and I cursed the day I took her to see her surgeon when she made her decision. I was overwhelmed with GUILT, because I was the one who took her to her pre-op appointments and I regretted not forcing her to get a second opinion. The day of my surgery, when I had to part ways at the double doors, my mind flashed to when I shared that all too similar moment with my mom. So not only did I pray that I would see them again, but I also prayed that they would see the same me, and that I would be the same me, as I'm sure my aunt and Kerry prayed also.

But today was a good day, the best birthday of the last four. The kids and I spent a few hours at my parents house, and we were pleasantly surprised by a visit from my grandparents, and I have to say, it had been a while since we had all been together, and it was really relaxing and comfortable, like old times. We sat around the kitchen table telling stories, of course I had already heard the majority of them several times as it goes with the older folks, but you gotta love hearing them over and over, and I was happy to hear them again :)

After my grandparents left, the kids went to play with my old toys in the lower level, and my parents and I were left at the table; I was consumed with nostalgia. My mom kept looking at and touching the photo we had given her in the mosaic frame we had made for her. When she caught me looking at her, she smiled, embarrassed, and said, "I just really like it." I mentally patted myself on the back, not for scoring points, but for getting an emotional reaction out of her...it doesn't happen often. But later, Kerry's card arrived, and when she opended it, we were all rather surprised to see something that we hadn't seen in about 20 years: a homemade card to my mom from her baby girl. She opened it gingerly and took in every detail, and I swear I saw a tear in her eye after she closed it. Today really was an amazing day.

Later, I told them about the things I had done with the kids all summer, and that we were finally taking them to Six Flags next Friday. We reminisced about the times we went when Kerry and I were kids, once every summer, it was my favorite day of the year, right up there with Christmas. I kid you not though, that whatever day we picked, it rained, and we were forced to buy those silly yellow panchos. One year, 1986 I believe, it rained so badly, we didn't even make it to the park. The rain was coming down so badly with torrential downpours everywhere, yet my dad insisted on giving it a go, and we headed for Great America, only to be forced to head back home due to roads being closed because of the flooding. When we got home, on the street just west of ours, there were people riding in canoes. I remember being so disappointed that our adventure was cancelled, but I knew there were people in the world with MUCH worse things going on, so I tried not to show it. I promised my parents I would take a ton of photos next Friday, not like I'll be going on the rides quite yet, but they seemed anxious to see how things have changed. And if it rains, we will deal with it just fine.

I just hope the panchos aren't still bright yellow :)

Long time no post

I'm sorry it's been so long! But I'm glad to say that I've been really busy living my life headache free :) I've gotten more than a few emails asking how I'm doing and if I was planning to update the Blog, and I have been meaning to, so here I am...

I had my 4 week post-op appointment this past week, which involved an MRI and a visit to my surgeon, and he told me I'm healing beautifully. The biggest worry was fluid leakage, which occurs in about 20% of the surgeries and requires the surgery to be redone, but luckily that's not the case! Also, most Chiari patients report suffering from headaches after the surgery, but I have not had any headaches! It has been unbelievable; I never anticipated such remarkable results.

My incision is healing well and the scar isn't too noticable. My hair is growing back quickly also. I have to say, and if you've ever shaved your head maybe you know this, but man does it itch when your hair grows back! Or maybe it was because of the stitches and the incision, but it doesn't hurt too much anymore. I still have neck stiffness and some pain, so I'm taking flexeril and vicodin pretty regularly, but other than that, I'm feeling like a new person and loving it!

I've been BUSY BUSY BUSY doing a ton of things I never thought I'd feel well enough to be doing. I'm taking a grad class through NIU in Naperville and was actually well enough to go to class on 6/23 and stay for 4 hours, 9 days after surgery! I was alert, paying attention, participating, and I even drove myself there (the campus is close to my house). We've been busy w/ Reagan's swim team, Charlie's t-ball, going to the pool, visiting my parents, and hitting the library about twice a week. The kids have been extremely understanding and patient with my limits. We took them to the festival in Arlington Heights over the 4th, and my sister Kerry was nice enough to take Reagan on all the rides since I couldn't (although she loved it too). I was so happy to be able to go with Mike to NY for a family wedding with his kids. Before the surgery I had no idea how I would be feeling or if I'd be able to go, but we stayed positive and he got me a ticket, I got a dress and we just planned that I'd go, and if not, then no big deal. But I would have been crushed if I would have had to have missed it, and not only did I feel well enough to go on the trip, I felt great all weekend! I was able to go to the gym with his mom, dance at the wedding, walk all over Central Park, and we had a great trip :)

What started off as a most difficult, painful summer as progressed into one of the best I can remember. And it's not over; that's the great part. We still have Reagan's birthday, many more days at the pool, Lolla, many other August birthdays... lots to celebrate and be thankful for!

What's it like to have brain surgery?

A friend told me that they though in all honesty that the Blog seemed a little over the top, and that they would never put so much personal information on the Internet, but maybe that's because they are just a more private person. I can respect that point of view, but I don't consider this as me putting a bunch of personal info on the Internet. OK, I know I am, but the Internet isn't what it used to be. You can find everything in print, audio and video media on the Internet, so what's the difference? Granted, this isn't a published New York Times best selling autobiography you're reading here, but for me, if I'm going to take the time to write something for others to read, I might as well make it worth reading. Some of those autobiographies that have been bestsellers had their success for being completely honest, with raw details and vivid descriptions.

So...I have neglected to tell you about the surgery itself. Obviously, and thankfully, I have no recollection of the actual surgery, but I do recall the moments before and everything after. I made it a point to remember the O.R. because I wanted to write about it. But let's back up a little before that to when I arrived at the hospital.

We stood in line as a few other patients had arrived at the same time. I looked at older couple in front of me and wondered which of them was the patient and what they were having done. To the left of me was a group of chairs and a television. We were on the top level of the large building, and from where we were you could see down to the ground level. There were many plants, glass and wood, and plenty of sunlight. I assumed that the group of chairs was where my family would wait for me, and I imagined them sitting there together waiting to hear the news of how things were going.

We were sent through a set of double doors and down a hall into a private room, where I was asked to change and they did some tests. After saying goodbye to Mike, Kerry and my Aunt Betty, the nurse led me to another area which I assume was the opposite of the recovery room, let's say the prep room. There, I was visited first by the anesthesiologist's assistant, the anesthesiologist, my neurosurgeon and a nurse. They then wheeled me into the O.R. This was by far the creepiest part of my experience. The room was huge. The first thing I noticed was the metal table on the far wall covered in bright blue paper and about 70 silver tools that looked like different shaped scissors. The placed me in the center of the room under three large overhead lights, kind of like the ones at the dentist, but about five times the size. To the right of me was another table, I assumed they would move me there for the procedure since I'd have to be face down. There were about seven people int he room busily getting things in place and doing I wasn't sure what. They injected something into my IV, so I knew my awake time was limited, I tried to keep looking around to absorb the room and get a good look at it, because before long...

I opened my eyes to find myself in place that looked like the the "preparation room". At first, I thought I was still there and had dozed off. The anesthesiologist's assistant was next to me saying "Kristin, you're in the recovery room. You're at Evanston Hospital and you just had surgery." I couldn't believe it. I responded, "They already did it?" "Yes" she replied. For a minute, I forgot I had been in the operating room and wonder if I would even remember if I hadn't made such a conscious effort. She checked my pupils and asked me a few more questions, but I immediately began my own tests. In my head did math problems, spoke in Spanish, recalled states and capitals, thoughts of my family members names and birthdays, ran through the recipe to prepare tuna casserole, thought about my mom and became sad, thought about my kids and became happy, wiggled my fingers and toes, I focused on a nurse across the room and on the name tag of the doctor talking to me...everything worked, intelligence, emotions, I wasn't paralyzed, deaf or blind. I then sighed in relief, my brain was still functioning. Then I felt the pain, my God, it was unbearable. They had given me Dilaudid through my IV but I don't think it was doing much, because the pain I was feeling was excruciating.

I was supposed to spend one hour in recovery and go to my room in the ICU; I spent 6 hours there waiting for a room to open up. I don't remember much since I slept most of the time. They took me for a C-Scan before taking me to my room, and I remember asking them to be very careful when moving me because I had just had brain surgery, I'm sure they found that amusing, but I was in such pain, the though of being moved was almost too much to handle. They assured me that would be very careful, but I was certain that my pain was far worse than anyone else could had ever experienced, and that moving me might kill me. I made eye contact with one of the lab technician's that tried to communicate more than I could with my scratchy voice (from being intubated), and he promised they would be careful. On three, they slid me over to another table, and I really didn't feel a thing.

Eventually, I finally made it to my room in the ICU, where I was accompanied by my sister, aunt and Mike. Much of the time there was spent trying to get me comfortable as I went in and out of consciousness. I find it hard to believe that it was just a week ago, and that I am now sitting on my couch getting ready to take a shower and then take the kids to the library. The human brain is truly amazing, along with science and medicine, especially when things work out like they are supposed to. I'm so relieved that things did, having been there when they didn't, and so grateful that my biggest complaint is some neck pain and a headache that I can deal with by taking ibuprofen. Well, that and a pretty ugly hairdo that can easily be covered up and a scar no one will really see. In the grand scheme of it all, I have a lot to be thankful for.

Finally home

I can't express how it feels to not only finally be home, but feel well enough to be writing this :) On Friday, I met with the occupational and physical therapists and really pushed myself to get clearance to come home. I had a feeling they wouldn't work on weekends, and to not come home until Monday would be devastating. I really turned a corner on Thursday and was feeling a little better. I'll be honest, I don't remember much other than pain from the time I woke up on Monday through Wednesday evening. It was the worst pain I had ever experienced or could ever imagine, I seriously wished death upon myself at some point on Wednesday and truly believed I couldn't handle anymore. I was so disappointed in my lack of strength to endure anymore, and then I woke up Thursday, and it really wasn't so bad anymore. I thank God for that! The kids were FINALLY able to come see me, and that gave me even more strength, and by Friday, I was a determined woman, I wanted to come home. And as my mom told me on the phone yesterday when I asked her how she did it for so long, she said it was because she didn't feel better, and when you don't feel so good, you're not ready to go home so you don't want to. That made sense, because I was feeling better.

The neurosurgeon would have the final say, and they make their rounds VERY early. Each time they had come, I had been sleeping and they were concerned about my alertness and ability to bounce back from the anesthesia and pain meds. There was even some talk of putting me in a rehab facility; over my dead body...so when he came in, I perked up, smiled and said hello, looking as alert as I possibly can at 7:45 a.m. (I'm not a morning person). He was a bit taken back, did his tests, and then told me exactly what I wanted to hear...I could go home today or tomorrow, he saw no reason for me to stay any longer. I said I'd go home today and practically jumped out of bed to pack up before i realized there was some paperwork involved, and they should probably take the line out of my artery in my wrist first.

Mike was there and helped me pack up my things and get me settled here at home. Taking a shower was heavenly. This may be too much info, but you must be wondering. Yes, I can wash my hair, and I just have to pat the back of my head dry as to not catch any of the 15 stitches running from my neck about 7" up my head. They shaved WAY more hair than I was expecting too, but it will grow back. The kids came over after, and Reagan's face lit up when she saw me. I was sitting on the couch in normal clothes, and I left my hair down after my shower, so no shaved head/ugly scar were visible, I looked like mom again. She came right to my side, hugged and kissed me, and held my hand. Charlie also came and hugged and kissed me. I noticed him looking at all of the injection sights, tape marks, bruises, etc, but I tried to smile and get him to look at my face, because that hadn't changed. He asked Reagan if she wanted to play. She replied , "Um, in case you didn't know, I haven't seen my mom in like a week, so I'm staying right here". He then crawled up on the couch and we all watched tv; it was perfect :)

Bill went to get my prescriptions and some food for me before coming to get them, and I have just been chilling here ever since. I tried to cook myself dinner last night, but it's not easy standing for a long time. My head feels like it weighs 70 pounds. They had to cut the muscles in my neck and stretch them out and back, and that's mainly what needs to heal and loosen up. It feels like a bunch of really tight rubber bands. I can barely turn my head, and holding it up for a long time is hard, so I need to rest a lot. It's kind of lonely being here all alone, but if the kids were here, I'm not sure I could manage on my own. They are coming tomorrow for the day and staying the night, and my aunt will come as well. I'm really looking forward to go to their activities again. I missed Reagan's softball game and a swim meet, Charlie's first T-ball practice of the season, but I'm hoping not to miss anything else.

I'm looking forward to Mike coming to visit me tonight :) He probably had a rougher week than I did on some levels. So many of you have acknowledged what a wonderful job he did with keeping up with the Blog, rightfully so, but I want to also thank him for constantly being by my side during the toughest week of my life. I so appreciate everything he did for me, from feeding me ice chips to reading me all of your encouraging messages to sleeping on a chair using my robe as a blanket. Thanks to all of you for your support and gratitude, it means a lot. He also has a full time job and 2 kids, so juggling all of that really wore him out. He has to travel this week for work on top of everything else; I'm not sure how he does it, but I hope he's having a well-deserved Happy Father's Day :)

Getting Better All the Time...

A short but very positive update - Kristin is doing great. In the last 24 hours she's regained a bunch of her energy (no more constant sleepiness)and her pain has begun to discipate a bit. She's still uncomfortable at times, but its nothing like before. She can moved her head around much more and can get out of bed on her own as needed.

Looks like we might finally be getting close to getting Kristin home! She's definitely ready.

More to come soon, very likely from Kristin herself. Thanks for bearing with me. :)

- Mike

Road to recovery begins...

Good morning, all. Kristin has had a rough couple of days, but we may be turning the corner.

Kristin woke up Tuesday morning in the ICU in pain, but she was alert, talkative and hungry (she ate a really good meal). She had been on diluadid for her pain, along with a cocktail of various other drugs in attempt to relax her muscles and control the usual post-op nausea.

For those of you who don't know or who have never had the "pleasure", diluadid is pretty strong stuff. As I understand it, dilaudid is a Class-A narcotic whose base ingredient is hydromorphone, which is also used for morphine. I can tell you from personal experience that its effects are quickly felt and very strong. I was given it while in the ER following a car accident. I immediately felt very warm, calm and had little or no pain in spite of s very serious injury to my hand. However, when I came out of surgery and asked for it again I was refused (they gave me something else) on the grounds that it is too strong.

The difference with Kristin is that the location of her surgery is very sensitive. There are a lot of nerve/nerve endings in that area, plus the muscles in her neck were literally cut and then put back together in order to accommodate the need to gain access to her skull. Moreover, Kristin has been on so much pain medication for so long that she has developed some resistance to the different narcotics used to treat severe pain. Accordingly, dilaudid - being as strong as it is - is a good option.

When Kristin got to the ICU the diluadid was being administered via "patient controlled analgesia" ("PCA"). Kristin was required to push a small button when she wanted the medication. The dose would be administered from the PCA machine into Kristin's IV. After that the PCA machine would lock her out from using it for between 6 and 8 minutes.

The trick was that only Kristin could push the button. If she fell asleep (which she did understandably often) she wouldn't get any of the drug, and would eventually wake up in considerable discomfort. This happened frequently enough that the doctors eventually decided to up Kristin's dose by nearly half (a nurse later told me that I would need to be "peeled off the floor" if I was receiving that much of the medication). The side-effect was that Kristin became essentially sedated (she couldn't stay awake for more than a few seconds and barely spoke) and her breathing was shallow, which led to her being put on oxygen through a "nasal cannula" (i.e., little tubes in her nostrils).

Between this added airflow, the effects of the intubation tube she had in her throat during surgery, and the surgical anesthesia wearing off, Kristin's throat became inflamed. She didn't eat, talk, or drink very much for about 24 hours, into the afternoon yesterday. She was also still very uncomfortable due to the considerable pain in her head and neck.

On top of all of this, it was important for Kristin to start moving around and out of her bed. The nurses moved her from her bed in ICU to a chair, a process that caused a great deal of pain. In addition, she was visited by occupational and physical therapists who put her through some mild exercise. She was understandably less than thrilled about this, but she pushed through and did it. Maintaining her physical capacities and keeping her blood flowing is an important step in Kristin's recovery.

Kristin was transferred from ICU to a regular room early yesterday afternoon. Her doctors were concerned about the state of sedation she was in, so they decided to take her off the PCA and cease all narcotics except for smaller dilaudid doses administered by the nurses every 2-3 hours. The initial few hours of this were incredibly difficult for Kristin as her body adjusted. She couldn't get comfortable in bed and was in as much pain as I have seen her in since she was in the recovery room after surgery.

The good news is that Kristin appears to have adjusted. She's still uncomfortable of course, but this morning she has been far more alert, oriented and talkative. Her throat is less sore and she's able to move herself around the bed without help. She even managed a smile when I made a joke earlier. This is a major step - not because my jokes are funny, mind you - but because she's back to interacting with people after more than a day of withdrawing from almost any such activity.

In addition, the doctors removed her bandage at about 6:00 a.m. this morning and I got my first look at the incision. It runs from the mid-point of the back of her head to the base of the back of her neck. Its about 1/2 inch wide (maybe a tad more in spots)when you include the staples that are holding it together for the time being.

The incision itself is very thin and looks good to my untrained eye. Its swollen of course, but not too bad. It has some redness, but again nothing that you wouldn't expect from such an intrusive procedure. Most importantly there does not appear to be any seepage from the incision whatsoever.

Thanks for your patience in awaiting this update. I have been with Kristin nearly all day and night since she arrived here, so it had been hard to find the time and energy to sit down and write a good post that would get you all the information that I know Kristin wants you to have. Many of you have checked-in on Kristin several times. That sort of love and support for her is incredibly meaningful to her recovery. Please keep it coming. :)

Mike

From the ICU...

I am in the ICU with Kristin and she is asleep. It was a very hard afternoon and evening for her, but she has handled it incredibly well.

The ICU was overrun with patients, so Kristin spent her first 4-5 hours post-op in the recovery room waiting for a bed to open-up. Even though it breaks with normal procedure, we were each allowed to visit her in the recovery room. At around 5:30 they took her for a CAT scan (standard procedure; nothing to be alarmed about) and finally brought her to her room in ICU.

Kristin has had and continues to have some significant pain, so it took a while for her to get comfortable in her bed. Her incision runs along the back of her upper neck and up to the curvature at the base of the back of her head. The entire area is covered in a large rectangular bandage.

As you might guess, putting any sort of pressure on that area causes Kristin a great deal of pain. Aunt Betty, Kerry, the nurses and I tried a bunch of different bed and pillow combinations until we found one that works: her bed is raised at about 45 degrees and we arranged the pillows so that her head and neck are supported, but the incision isn't really "pressing" against anything.

The nurses here are wonderful. They are very patient and have worked to adjust Kristin's meds in order to find the combination that will take the edge off and allow her to sleep. They are even allowing me to stay overnight in Kristin's room with her so she can know someone who loves her is nearby at all-times.

Even more importantly, Kristin was able to speak on the phone with Reagan earlier this evening. Bill called from Reagan's softball game and Aunt Betty put the call on speakerphone. Kristin told Reagan that she is through with the surgery and that it went very well. Reagan told her how happy she is that it is over and that she loves her very much.

As my mother put it, "Chiari malformation correction may be the 'appendectomy of neurosurgery', but it still means that you are having surgery on your brain." To willingly take this on when she could have easily avoided it shows once again what an incredibly strong and brave person Kristin is.

This is Kristin's blog and it is very special to her, so I hope that I have done right by it, by her, and by all of you. Hopefully she will feel up to posting (or at least dictating posts to me) in the next day or two. If not, you'll be stuck with me for a bit longer as I keep you all informed. :)

Thanks so much for the outpouring of love and support that was received today. It kept us all going and means the world to Kristin.

- Mike

Surgery complete and Kristin in recovery!

Just met with Kristin's surgeon. According to him the procedure went very well and she is doing great.

The doctor said that as soon as they looked in they could see the portion of her brain that had descended below her skull. He removed a small portion of her skull at the base near her neck and said that they immediatly saw a reduction in the pressure on her brain. Because the brain had reached her spinal column, the doctor also removed her C-1 vertebrae (the topmost on your spine; see pic in this post).

This is an extremely positive result. We always knew that a small piece of skull would be removed and that the C-1 vertebrae would have to go. However, depending on what they found, it was possible that her C-2 vertebrae would have to be removed and/or that they would have to make an incision in the tonsils of her brain (the portion that had descended) in order to fully relieve the pressure. The fact they did not have to do that made the procedure more simple and likely will make Kristin's recovery that much easier.

Kristin is in the ICU recovery room and is awake and alert. We won't be able to see her for an hour or two. While I wish I could run in to see her right now, its enough to know she is doing well. :)

Mike

Closing up!

Just got another update from the O/R: they are closing the incision and will be done soon. Thank goodness....

Mike

Half-way home...

We just received an update from the O/R. The surgery is going "very well" and is about half-complete. :)

Mike

Under way...

Kristin has been moved from the surgical holding area to the O/R as I write this. I drove her and Kerry to the hospital this morning, and Aunt Betty, Kerry and I were all with her as she had her vitals checked, gave some blood, and donned her patient's gown.

Kristin is in excellent spirits - she was joking about how nice her gown looks on her and how much she enjoyed shoving her hair under her standard- issue blue surgical cap. Her blood pressure was pretty low (90/70), which gave us all a nice, light moment to ponder whether anything whatsoever bothers her. :)

About 30 minutes ago the three of us each kissed and hugged Kristin "goodbye" as she departed with her nurse (a very nice lady) for the surgical holding area. She had a smile on her face and appeared to be very calm.

Meanwhile, Betty, Kerry and I have taken a seat amongst a dozen or so others here in the surgical waiting lounge. As hospitals go it is very pleasant here. The lounge is lofted above a nice lobby where there is a player piano and a waterfall. There's a flatscreen t.v. displaying a surgical "scoreboard" where we can monitor Kristin's progress via her patient number.

When the surgery is complete we will be visited by the surgeon and Kristin will be wheeled into the recovery area, where she is expected to stay for one hour. After that she will be moved to "her" room.

I will post an update as soon as I can after the surgery is complete. Thanks to all for continuing to follow and sending your positive thoughts and love Kristin's way.

Mike

1 Day Out

I kind of thought I'd be freaking out more right about now. Ok, I totally was yesterday (just ask Reagan and Charlie's dad Bill who so graciously let me off the hook from our "strongly encouraged" parent swim timer class so I could spend the evening with the kids), and then again this morning, but now that I've done everything I wanted to do, I'm ready. You're probably wondering, what does one do the day before having brain surgery? Well, for me, I'm spending it with my family and Mike & his kids (who I also consider my family).

Also, the part of me that is definitely my mother, is getting my house ready for my return home. I'm doing all my laundry, putting clean sheets on my bed, cleaning my house, etc...I just think that coming home to a clean, peaceful house will be conducive to my recovery. I try not to think about the fact that my mom did all this on 8/12/07 and didn't actually come home for a year and a half. I plan to be home by Thursday, Friday at the very latest (deep breath).

They told me to pack a small bag. Reagan just asked me why do I need to pack a bag, don't they give me those gowns to sleep in? I really hate those hospital gowns, but she's right. I seriously have no clue what to bring besides deodorant and a toothbrush. I've only done this when I went to have the kids, and that was so much more exciting, plus packing the diaper bag was thrilling because you knew that you were FINALLY going to get to use those tiny clothes and things you got at your shower. Anyway, this time is completely different. I'm bringing like 5 books; I love to read and have no idea what I may be in the mood for, but I really hope I'm not fooling myself. What if I'm in so much pain that they have me drugged up and I'm sleeping for 4 or 5 days? Ugh, the thought of that makes me cringe. I realize I'm not heading out to a hotel for a vacation here, but to sit in some room for days...what does one do to pass the time? My aunt is bringing me magazines, that will probably be easier on the eyes as I'm guessing that brain surgery leaves you with quite a headache. Mike is giving me an iPod that he put a bunch of relaxing music on, which will be really helpful in drowning out the sounds of the hospital.

So tonight I'm going to hang out with Mike and my sister. They will definitely do a great job entertaining me and keeping my mind from going to dark places. They are great company and I'm so thankful that I have them to get me through what could be one of the most difficult nights of my life as far as the anticipation of the actual surgery in the morning. They have amazingly funny, witty, intelligent senses of humor that are sure to keep me smiling and laughing all evening. I'm sure at times that laghter will turn to tears, for all of us, but there's no place I would rather be.

Ok, I just realized that since I'll be leaving, the kids are getting picked up in a few hours. I'm NOT ready to say good bye to them, and I've gone back to complete freak out mode. I'm going to have to take a break from this to go hug them and come back...

Yeah, there's just no getting rid of this pit in my stomach. Ugh, this is going to be the hardest part. I know it's not good bye, just see you soon, but still...


Anyway...

I'll be praying for Mike and Kerry and my aunt Betty tomorrow as they sit in the waiting room during my surgery. We'll be at Evanston Hospital, and I'm scheduled to be in surgery from 7:30 to 12:30. That's quite a wait for them, and I'm glad they have each other for support and entertainment for those long 5 hours. They will keep my dad and other family members & friends informed, which I know isn't always easy either.

Bill and I decided that the kids won't come to the hospital until I'm out of ICU and alert enough for them to visit. Rest is the most important thing in the first few days after brain surgery (thank you Laurie), and we also don't want to upset them. It's not going to be easy for him Monday and Tuesday as they wait, ask questions, and beg to go visit me. My aunt will keep in contact with him regularly so he always knows what is going on. Starting tomorrow and indefinitely, he'll be juggling the kids and all of their activities and his job as well. I suggested to have them take a break from their sports this summer, or maybe even just Reagan's swimming since she practices everyday at 7:45 a.m., but he insisted that it's important to them and they love their sports, so he would make it work until I'm feeling better. He's a great dad.

As for me, I'll get there tomorrow morning at 6, "fall asleep" around 7:30, and wake up sometime around 1 I'm guessing, as thought only a few minutes have passed. I cannot wrap my head around this because I know what is actually going to happen during those "few minutes" that are actually 5 hours. Regardless, I'm very lucky that when I wake up, I'll have Mike, Kerry and my aunt there for me, to support me and be there for me no matter what my recovery has in store.


FYI...For those of you who have asked, Mike has the login info for the Blog, so he'll update it. Thanks so much for all of your support! I'll be in touch when it's all done and I can type again :)

Reagan

Many people have asked me how Reagan is handling all of this. I have been meaning to write this blog for a while now, and I've tried to, but it's hard to write. Reagan is a really special kid. As a parent of a gifted learner, I've learned that one of the differences between her and an advanced learner is the way she internalizes information; she develops very strong feelings about what she learns. For example, when she learned about the oil spill, not only did she grasp the information and understand what was happening, she became devastated about the effects of the contamination. She once came across the word "slum" on a spelling list of "sl" words and wanted to know what it meant. So we went on her laptop and looked on Wikepedia and looked at some google images. When I explained about third world countries to her, she was astounded. She wanted to know what she could do, and I explained that we aren't a third world country, but we do have less fortunate people, so she went straight to her closet and began pulling out everything that doesn't fit and that she doesn't wear to put in a bag to donate to the poor, and she still does so on a regular basis. When her school did a food drive, she cleaned out my pantry of canned goods (with my permission) and still gives me a hard time when I have things in there for too long without using them because there are people without food. She is extremely mature for her age, and her larger than life heart brings tears to my eyes. My point is that Reagan doesn't take serious information lightly.

About two months ago Reagan came home with a free pass to Six Flags that she had gotten for completing a reading challenge at school. She had never been there, and she was ecstatic! She grabbed the calendar off the refrigerator, sat down at the table and called me over. Reagan is no dummy, she wanted to mark a date for her and I to go to Great America this summer. I knew I'd have to tell her about the surgery eventually, and the time had come.

This wasn't going to be easy. My mom had brain surgery three years ago, during which she suffered two strokes. She didn't wake up for days, couldn't talk, walk, or do anything for weeks, months...she had to relearn everything. She has come SO FAR now, but she is still disabled. It was extremely hard on Reagan; they are so close and Reagan struggled deeply through the initial loss of her grandma; she didn't come home for a year and a half after the surgery. We would go visit her in the hospital and then nursing home, and Reagan was so strong through it all. But to ask that of her again with her own mom would be too much.

I started by bringing up all the headaches I always have, and the doctor appointments, pills, etc. I told her that the doctors were going to make me better, but I'd have to be in the hospital for a few days and have a surgery. She asked if it was brain surgery. I told her yes. Her entire face went into a frown, her eyes pleading no as they filled with tears, but no words came out. I ran to her side and took her face in my hands, looked her in the eyes and said, "No, no, no. You have nothing, nothing to worry about. This time will be different. I will be fine, they will fix me and nothing bad will happen, I promise you. I would never do this if there was a chance anything bad would happen, I promise you Reagan. You can trust me. You know you can trust me. You believe me, right?" She took a deep breath and said "ok." She seemed relieved. I hugged her and held her and and continued to reassure her, while at the same time I knew I was reassuring myself.

Reagan is still very worried about the surgery and needs constant reassurance, which we all give her. She also tries not to show how upset she is (she turns her head to cry or leaves the room). I tell her it is okay to be afraid and upset, but that I will be okay, and that before she knows it, it will be over and we'll be enjoying our summer. And we are definitely going to Six Flags sometime soon, only her dad will be going on the rides with her while Charlie and I hang out and watch :)

All clear

I had my appointment today with the cardiologist. Charlie came with me, he didn't particularly enjoy watching them hook me up to the EKG machine, which I could tell because he came over to me and started playing with my hair. I reminded him that they were just going to do a test on my heart, and that it wouldn't hurt at all, maybe just tickle a tiny bit (you actually don't feel a thing, and it takes like 5 seconds once they finally get it all hooked up, but the stickers and clips look rather intimidating).

The results came out the same, but after doing an exam the doctor concluded that the premature ventricular contractions (PVC's) may at worse be a sign of mitral valve prolapse, but pose no risk for the surgery and gave me clearance. I do need to follow up with him in the future to keep my heart condition in check though, ugh.

I can't say I was completely relieved about getting the go ahead for the surgery...as it gets closer, I'm starting to freak out a bit. I'm sure that's normal, and I do want to get it done and over with, but with it being only five days away, I kind of wish I had more time. I've been feeling so well since the injections and vacation to Jamaica, I wish I could just feel like this a little longer, because I know that come Monday when I wake up, I'm going to feel AWFUL. The recovery is going to be really tough, my doctor and nurse have prepared me for this, and I'm dreading it. In the long run, if it works, it will be so worth it, but right now, I wish I could enjoy some more of the summer with the kids. Reagan isn't even out of school yet; her last day is tomorrow. We get one day together, then the weekend, and that's it, and I just wish we had more time. She's be so mature about going to school everyday knowing I'm home with Charlie (I've been off for 2 weeks), and I feel bad that this is how her summer is starting off. But, on a more positive note, getting back into my summer routine with the kids, going to the pool and the park and their sporting events will motivate me to get better as quickly as possible. My goal will be to miss as little as possible. I'm sure I'll get frustrated, but at the same time, their precious little faces and smiles of encouragement will keep me going :)

Doctor appointments

It’s sad how much time I spend in doctors’ offices and at pharmacies. My poor kids know these places all too well. I spent last Tues and Wednesday getting my MRI and physical for my surgery. The MRI went rather smoothly, unlike many from the past, where I would fall asleep and twitch, and they would have to repeat a 4 or 5 minute scan that I messed up. I’ve had MRI’s that were supposed to take 45 minutes take 90. Thankfully, this MRI took the planned 45 minutes. I don’t know if you have ever laid perfectly still in a tunnel for 45 minutes before, but it’s not very easy or fun. In the past I at least got to pick out music to listen to, but not this time. The staff was very nice; they were obviously used to doing pre-op MRI’s and had seen many patients go from the MRI table straight to the operating room. They wished me luck as I left.

Since giving me my diagnosis six months ago, my primary care physician was a little surprised I have since decided to have the surgery. She asked me if the surgeon had informed me that not all “Chiarians” are “cured” by the surgery; there is the risk that I will go through all of this and not get better, and that may be surprising to some people. I know this. But I’ve spent this past year in such pain, those who are close to me are not surprised that I am doing this. It has affected my family, relationship with Mike, my friendships, my career…every aspect of my life. Living with chronic pain is not living; it is surviving. I don’t see this as “elective surgery” as some may see it. I see it as my last hope to turn my life around and lead a normal life again.

My physical with my doctor involved several tests starting with an EKG, which I didn’t pass. Apparently my heart has a premature beat or something, so I now have another appointment with a cardiologist tomorrow. My physician assured me that it’s probably nothing, but we really need to get the cardiologist's “blessing” to proceed with the surgery. I was told several times as a child that I have a heart murmur and even went once for an ultra sound and it came out fine, so I’m not too worried. I’m sure this is just something they need to do as a precaution and that I’ll be cleared to proceed.

My doctor also did a routine exam, and then took a swab of my nose to test for staff infection (that was fun) before sending me to the lab where they drew several vials of blood. Later in the day, the lab called to ask me to PLEASE return; they had forgotten to take a tube of blood. Seriously?!?! I now have bruises on both arms (I bruise easily), but it was really no big deal to go back, luckily I live close by.

Another appointment I had this week was with my neurosurgeon’s partner who gave me trigger point injections. Basically, she injected steroids and Novocain into the areas of my neck and shoulders that really hurt to get me through to surgery (about 7 injections total), and ensure me a peaceful vacation. I had this done once before, and while the injections hurt, their effects last for a few weeks and are really worth it. She did an amazing job, I have to say! I just spent the past five days in Jamaica with Mike, and I am so thankful to him for taking me away to such an amazing place where we could escape reality for a while and relax in paradise before this scary experience really takes place. I’m also thankful that my doctors could put me put me out of pain so that I could fully enjoy it.

Charlie

Charlie fell asleep on the couch with me last night watching the Blackhawks game (great game, BTW!) When I got up to go to bed, like any parent would do without having to think twice about it, I lovingly wrapped my arms around him, lifted him off the couch, and carried him upstairs. I lingered in his room for a few minutes with him there in my arms before I leaned over to put him in his bed and kissed him about ten times and whispered good night. As I walked out of the room, I stopped in my tracks and my eyes filled with tears; the parent child bedtime routine I had so many times taken for granted would soon become forbidden, along with lifting anything else weighing over 10 pounds.

I won't be allowed to lift up and carry my own children. They won't be allowed to run to me like they always do and throw their tiny arms around my neck. How do you tell kids not to do that? When Charlie falls asleep on the couch like he always does, I'm going to have to wake him up. For those of you who don't know my son, this will not be any easy task. The child just does not wake up, and he's such an angel when he's sleeping, it’s nearly impossible to disrupt him without it breaking your heart.

I'm taking Charlie to the pool today for the first time this summer. He's been going for a week now to Reagan's swim team practices, and God bless him, he never complains about not getting to go in, but I always catch him looking over at the kiddie pool that he obviously remembers from last summer like it was yesterday. Well, the pool finally opens to the public today, and I am thankfully off school on summer break, and the weather is cooperating, so that's our plan. He loves when I carry him around the adult pool (he can't swim, but he's determined to learn this year, finally!) I'm hoping that after the surgery, we can come to the pool to escape the reality of gravity, because in the pool Charlie will weigh less than 10 pounds.

What Chiari Looks Like

The Recovery

After the surgery, I'll spend the night in ICU. I'll then spend a few days in the hospital. I've been told I'll be in pain, shocker. Surprisingly, though, once I'm sent home, it's not to go lay in bed. I'm supposed to try to be active (as in walking around and getting out of the house, not playing contact sports or bungee jumping). I was so relieved to hear this. I figured I was giving up my summer with my kids for my recovery, and that's not at all the case. I know I'll be anxious to do more than I can and it will be frustrating at times. I'm really not sure what to expect, but I'll let you know...

My nurse has mentioned it will be tricky with the kids, heavy lifting, driving, sleeping, etc. I guess I'll figure it out and learn as I go.

The Surgery

This is for those of you who actually want to know how it's done...this is my disclaimer, if you don't want to know, don't read on!

The surgery should take about 3 or 4 hours. I'll be face down on something like a massage table, unfortunately under much different circumstances. Yes, they have to shave my head (everyone asks that, so I'll just get that out of the way). Thankfully, my surgeon only shaves the minimal amount of hair necessary. Some neurosurgeons shave the bottom half of the head; that may have been a deal breaker for me. I don't mean to be vain, but this is horrible enough as it is, why add a half bald head to the equation if not necessary? I'm just saying...

Anyway, they'll make a vertical incision, about 4" or so, at the base of my skull down my neck. They'll remove about a quarter size portion or more of my skull, I'm assuming with some sort of saw, and then my top vertebrae and possibly the one underneath. After than it's up in the air. Awesome, huh? So my poor family in the waiting room gets to sit and wait to see what happens next. I'll find out in recovery if after that point they decided to:

a. stitch me up (highly unlikely due to the amount of pain I'm in which indicates a great deal of pressure);
b. remove the duraand replace it with bovine cardiac tissue (that's fancy talk for pig heart) to provide more space or;
c. remove the dura, spilt (as in CUT) the brain tonsil to remove even more pressure and then add the pig heart, I mean bovine cardiac tissue.

So, I'm not really sure of the exact details of which surgery I'm having; they'll decide once I'm in the operating room and they see what they are working with. It's rather unsettling, to be honest. But again, I feel most sorry for my family. I know what's it's like to be sitting in the waiting room doing exactly that...waiting. Waiting for my mom to come out of surgery was torture. I wish there was some way I could speed time or give them the peace I'll be granted by my heavy sedation. Obviously I'm worried and scared out of my mind, but there's a tremendous sense of relief that comes with knowing that I don't have to do that waiting. I just have to show up and give them my arm to be put to sleep for a while.

And the moment I wake up and can articulate an intelligent thought, and I can feel my fingers and toes and see my kids, nothing else will matter.

Why the blog?

My very wonderful, loving, patient boyfriend Mike came up with this blog idea; he knows me well. I love to write. I like writing much better than talking, he knows that too. I think he saw this as a way for me to journal about all I was going through, which would be really therapeutic, and then I could share what was going on with my friends and family at the same time. I love the idea. When everything happened with my mom's brain surgery, I felt really awkward sending all the mass emails. Mass emails can be so impersonal. Furthermore, I didn't know who to include. I also wanted to write EVERYTHING in those emails because I needed to talk to someone. It was the most difficult time of my life, and a mass email was NOT a helpful outlet.

So when I found out about my situation and sat down to compose my first email, you can imagine how thrilled I was. But then the other night when Mike handed me his laptop with this Blog, I realized this time would be different. I was relieved that I could share this experience in a different way, perhaps even with people going through the same thing, and I felt hopeful.

This blog is perfect because I feel much more comfortable writing anything and everything. Anyone can read it if they want. I don't have to worry about bothering people with a ton of emails, or not giving enough information to those who want more. I'll put everything (well almost everything, there are some things I'm just not putting on the Internet), but I'm putting everything I need to talk about on here, and anyone who wants to know whats going on can read it. So if you have a question, just ask!

Thank you Mike :)

Chiari Decompression Surgery

I'm having brain surgery. No matter how many times I say that, to myself or out loud to other people, it sounds absolutely ridiculous. There's no way it can actually be true. I'm a 33 year old woman, who up until recently, was very healthy. I eat well, exercise, and with the exception of having my two children, I've never even been in the hospital, yet I'm having brain surgery. Even as I type it, on my computer screen it looks fictional. Yet it's not...and it's happening soon, very soon.

June 14th, two weeks from Monday. I just scheduled it this past Tuesday and it's going to be here before I know it, which will probably be for the better because I think that sitting around any loner trying to believe this is actually going to happen it would drive me crazy (ok, crazier than I'm already feeling).

This past January I was diagnosed with a Chiari Malformation. Basically, the base of my skull is too small for my brain (I used to mess that up and say my brain was too big for my skull, I liked that explanation better, lol). So with nowhere else to go, my brain has descended into my neck/spinal column, down to my 2nd vertebrae. It is in between my brain stem and vertebrae where there is only supposed to be spinal fluid, causing a ton of pressure and pain.

At first, I decided to be treated for the pain with medication. After months of prescriptions that proved to be ineffective, I tried alternative medicine (massage, acupuncture, you name it). I was desperate. But my condition only worsened. I was in complete agony and eventually was put on steroids and narcotics (as strong as morphine) because the pain was so bad. The pain is all in the back of my head, neck and shoulders and then causes headaches & back pain. It has even affected my ears; I have chronic earaches and my hearing has been affected. I'm in pain everyday. I seriously cannot remember what it feels like to feel normal. This is why I'm having the surgery.

My neurologists were at a loss for treating me and agreed that I needed to do this. The procedure is called Chiari Decompression because it is supposed to relieve the pressure. I sometimes feel like my head is going to explode right through my ears, so the name sounds fitting.

June 14th is the date I go in to have my head decompressed, can't wait...