Pre-Op

Soooo yes I know, I'm the worst blogger ever! I said I would have dates a while a go and I did. I just didn't ever get around to blogging it. SORRY! I actually had my Pre-Op appointment today. It was just A LOT of paperwork and then lab work. My surgery date is June 13th. The lady that called me made sure to let me know it was Friday the 13th and then even said EEK! :{ I am not a superstitious person but I still didn't need to hear that, I mean really what did she think that would contribute to the conversation?

Oh well, that happened.
Surgery is Friday, June the 13th. From now until then I plan to have tons of fun with my family and keep trucking along with my sewing projects. It's been fun having time to just sew whatever I want.

I made these cargo Shorts for Seth from the Peek-A-Boo Pattern Castaway Cargos. I love that I finally found something to make for Seth that he thought was cool. He had really been wanting corduroy shorts for some reason.

This is The Adelaide A-Line dress from Seamingly Smitten. I love how the fabric fit over this pattern!                   

This year I made Roni's Easter dress! I used the Peppermint Swirl Dress Pattern from Candy Castle Patterns. This dress looks like a dream and it came together so easily! I'm already planning a rainbow swirl version of this for her too!







 We are going to celebrate Father's Day a week early since I will be in the Hospital for the actual day. Derek is taking leave and is happy to get to spend some time with the kids. It's been really cute listening to Derek and the kids plan all the fun stuff they are going to do, I just hope that they remember to feed me.
This should be an interesting summer!!!
-Savanna

May 1st

   So.... Derek and I met Dr. Boggan today. Dr. Boggan was very kind and friendly. He feels that due to my complete lack of CSF flow behind the brain Decompression Surgery is not just recommend but really needed.
    I feel hopeful. I've always known that things could get worse but I finally feel like I'm doing some thing that kind (long term) make things better. I am aware that recovery will be long and hard with ups and downs. Please remember that surgery is not a cure and I feel like I have a realistic expectation for life after surgery. I was told that I should expect to have surgery end of May or beginning of June and I should have an actual date for pre-op and surgery in about a week. Chiarians that have had surgery are lovingly referred to as a Zipperhead because of the appearance of the scar after surgery. I like that there is a name for, it feels more like owning it as opposed to being embarrassed by it. My hair is longer so once I don't have to have it pulled back, so it doesn't irritate the incision, it probably will not be visible at all or that's what Dr. Boggan said. It sort of feels like it will be a badge of honor showing I made it! The scar is just proof I made it, I was tougher, I was braver, I was more than my Chiari!
Want to see some Zipperheads? click here
Everybody has a different size scar and different amount of hair that is shaved. If you see some and think AHHH they have no hair, don't panic. Many people choose to either cut their hair very short or shave it themselves before surgery. I hear it is itchy and obnoxious but I think I'm going to try really hard to hold out and just let the Dr. cut/shave what's needed. I'm already giving up part of my head, I would like to keep as much as I can! :)


   I will let you all know when I have an actual date, until then thank you all for your continued support.

- Savanna

Happy Days

   For all your love, support, help, and encouragement THANK YOU! I'm having some good days. I get tired really easy but then I just rest. Common sense, right? I honestly cannot logically explain why it has taken me so long to figure that one out. If I had to guess I would say pride was a factor. Nobody likes to be told they can't do something. Lesson learned now.....mostly. Hey, a girls got to do what a girls got to do. Many of you have asked what you can do or how you can help. Please continue to pray for me. Pray for me to have courage, strength and a sense of humor. I need those things daily.

   On a lighter note, it's spring! The weather is nice and I have fallen in love with several new sewing patterns for spring clothes. Several people have asked if it is driving me crazy waiting for my May appt. and the simple answer is nope. I wish it was sooner but it's not so life goes on. I'm thinking fun sewing projects is just the way to pass the time!

Thanks again for the support and prayers. For now I'm happy!

So I had a bad day.....

    Many of you know but for those that don't I had a really rough day yesterday. It really started Sunday when I woke up with a nasty headache so I stayed home from church and rested all day. Day after day it got a little worse and finally on Wednesday I reached my breaking point. I was vomiting on and off all Wednesday and just kept telling myself if I can just make it to school pick up then I can get the kids home, take some medicine and sleep it off. So my Mommy adrenaline kicked in and I made it to school pick up. I felt horrible and I am so sorry to any of my friends that felt I was being short or rude to them. I really just was trying to forge ahead in survival mode and I did not intend to hurt any feelings. Once the kids were home and having a snack I called Derek and said "I need help now". He must have known I was serious because he didn't ask any question and said he was on his way. Next I sent a text and asked for help for someone to pick up my kids, and then I called my Primary President and asked her if she would cancel scouts for me. Beyond getting those things taken care of it just hurt to much to think. I would start to cry on and off but mostly just tried to stay quiet and calm because truthfully the crying made me hurt worse.

    My kids were picked up, I got a blessing and Derek took me straight to the ER. As soon as we got there I was vomiting again and convulsing so they saw me right away before Derek had finished checking me in. They kept asking question that I could barely understand and couldn't even think to answer so they started and IV with nausea and pain medicine to stop the convulsions. Once the nausea stopped I could finally tell them how I was feeling and what was going on. I explained I have Chiari 1 Malformation and that this was the worst headache I had ever had in my life. They did a CT scan to check for hydrocephalous and that came back clear. The ER Doctor spoke to my Neurologists and they decided if they could just break the pain cycle and stop the nausea that would provide enough relief that I could be released to go home and follow up with my Neurologist while waiting for my appointment with the Neurosurgeon which is set for May 1st. (That's a long way out I know!)
    After a couple bags of fluids to rehydrate me, 2 bags of Magnesium, some other pain med and nausea medicine I got the ok to go home and straight to bed! They did also send me home with nausea and anti inflammatory medicine.  Honestly I'm feeling better today, just really sleepy but I'm going to be ok. I will post updates to the blog so that it is easier to let everyone know what is going on in a more healthy way than having to call and talking about it over and over.  I really am very grateful for everyone's texts, calls, e-mails, concerns, offers of help, support and encouragement. Thank you all!

MY JOURNEY WITH ARNOLD CHIARI 1 MALFORMATION

 

In high school I ran Cross Country and Track. My senior year (2002) I just couldn't keep up. It was all I could do to finish a race and many times I would pass out. I really struggled with these new limitations and matters where only made worse when doctors couldn't find any explanation for my pain. I started having debilitating headaches that caused extreme nausea. I knew something was wrong, other people had headaches and it didn't seem to really interfere with their daily life. Doctors would give me pain meds and send me home. Several Doctors grew frustrated with my constant complaints told me it was all in my head and. The pain and headaches continued and I learned to just keep it to myself thinking maybe it is in my head.
 
Fast forward several years and I was married with my first child. After delivery of my son my headaches were more frequent and I had a painful numbness in my right arm and my depth perception couldn't be trusted at all. I fell frequently and started to consider myself extremely clumsy. I will skip the details and just say that Doctors (including the Neurologist I started seeing) were not helpful. The only thing that could be agreed on was that I did not have MS. That was great news but not really helpful.
 
Finally in 2009 I had a new Neurologist and after a new MRI I got a diagnosis! The Dr. said "Oh! That's interesting"... He described to me what it was and pretty much said this is what you have, lets watch it and see how you feel, take these and these and these for pain and come back in 3 months. I left his office feeling hopeful and  justified. Those next 3 months were lousy!!! The meds made me feel exhausted, nauseous, and dazed but did absolutely nothing for the pain. At my next doctors appointment I explained to the doctor I hated the medicine and it wasn't helping. He prescribed different meds and sent me home again. Leaving this appointment I realized that having the diagnosis felt good but didn't actually help and the medicine was just suppose to make me comfortable because there is no cure for Chiari 1 Malformation.

Again the pain meds had nothing but undesirable side effects. I stopped taking the meds and didn't go back to the Neurologist. All of my doctors had made me feel insignificant and crazy.

3 and a half years later I was in a new state and at an appointment with my Primary Care Dr. she put in a referral to a Neurologist. This Neurologist was different than all the others. He was kind, really listened to me, was comforting and made me feel like he was genuinely interested in my care. He requested new MRI's and I was excited and hopeful to visit him again. I never receive a phone call or letter about the MRI appointment. I called my insurance company and checked the request status, it was good so I called the hospital to schedule it myself. The soonest they could get me in was 10 weeks. Annoyed I made the appointment and waited and waited and waited. The I got a phone call and was told they needed to reschedule and there was absolutely nothing they could do about it. The new appointment was 7 weeks later than the last!! At that point I had to call and postpone my follow up appointment with the neurologist because I still hadn't had the MRI yet. The time for the MRI came and I missed the appointment. I was so mad at myself and frustrated with the situation that I just gave up on it.

I waited another year to see the neurologist. It happened by chance. I went to my Primary Care Doctor for what I thought was just a nasty sinus infection. After checking me out she said I had a sinus infection but also wanted to know what my Neurologist thought. I didn't understand she just said I had a sinus infection, what was he going to do about it. She put through the referral to see the neurologist again and just said it had been too long since I saw him last.

You can only imagine my surprise when I got a phone call the next day and had an appointment scheduled for the following day. I went in, had a brief conversation and he looked in my ears. I still wasn't sure what it mattered but it seemed like it did. Either way I left the office with new MRI and Cine requests. The very next day I got a phone call and had an MRI scheduled for 2 days later!!!
The MRI was on a Friday and by Tuesday (Monday was a holiday) afternoon I had a follow appointment with the neurologist to read the MRI report.

It wasn't good. He said things like this is serious Savanna, See your C2 here and how it leans back on the brain stem, this is serious Savanna, doesn't this look sunken more than before, Surgery is really needed,  look at your CSF flow, do you see that, There is no CSF flow behind your brain, this isn't normal, you have a spontaneous CSF leak, this is serious, it's coming out your ears, You have to see a Neurosurgeon, SERIOUS Serious serious.
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This is my journey. In the beginning all the doctors said it was all in my head and they were MOSTLY right. This is the story of my brain falling out of my head. It's been hard but made me stronger too. I have Chiari but Chiari doesn't have me, it's just a bully I beat up every morning when I get up!