Wow...

I apologize for taking so long to make this first post-op blog entry.  Needless to say the surgery has been an experience.  At a future date I'll go into details of the surgery, recovery, etc., but for now I just wanted to let everyone know that we came home on our earliest possible release date, which was Christmas eve, so there were no complications, and I got to be with all of my family on Christmas morning :)  The surgery went as well as we could have hoped for.  I had a lot of difficulty keeping pain meds and muscle relaxers down, most likely enhanced by the pregnancy, therefore I was sick somewhat frequently.  We finally settled on Tylenol and Flexeril; not the strongest pain relief, that's for sure, but it's pretty much all my stomach can handle.  I definitely miss my morphine button!  I'm in a lot of pain, I basically feel like I not only had my skull drilled into and a vertebrae removed, but also a jaw/face lift.  Everything from my shoulders up absolutely just aches!  Sleep is interesting, I set my alarm to wake up for medication because I don't want to think of going without it, even though it doesn't seem to do too much, but I usually see every hour of the night on my clock anyway.  I also spend the majority of the day laying down because sitting up is difficult.  The sutures are on the back of my head and it is painful to lean back against them, even on the cushiest of chairs.  It's also exhausting to hold my head up on newly reconnected neck muscles, so laying down on my side is the best option.
I can't say thank you enough to everyone who has kept us in their thoughts and said prayers for us.  Another HUGE thank you to those who have already brought or sent food, and to those who plan to.  Kevin is starting to realize how nice it is not having to worry about every meal!
XO for now..

Busy week!

My pre-op appointment went well on Monday, as far as I know.  We were able to avoid the chest x-ray and only had to do bloodwork and EKG, along with paperwork of course.  I arrived at my doctor's office at around 1015 and was heading home from the hospital a little before 2.  We then saw the OB on Tuesday for a final listen to the heartbeat before surgery.  Dr. Z let us know that she had talked to Dr. Bronec the week before about meds I would be able to take and she gave him her cell number so she could be reached at anytime while I'm in the hospital, she continues to amaze us with how much she truly cares. 
My poor Logan is under the weather so instead of snuggling him all week like I had hoped, I'm having to stay away so I don't get sick and jeopardize the surgery.  It's killing me :(  He goes to the pediatrician later today with Daddy to make sure he doesn't have an ear infection.  He's had a fever of 101-102 since yesterday afternoon but his only symptom is a cough.
We're spending the week trying to take care of everything for my parents arrival, Christmas, and the end of the year.  My parents should be here tomorrow evening and as of right now I'm the only one on Dr. Bronec's surgery schedule for Friday which means we should have a 730am start time.  It's going to be an early morning, but that gives us the best chance of being home on Christmas eve, as long as I 'kill it like a rockstar' as Joey, the PA, put it :)  We have a great anesthesiologist who came highly recommended and my friend Leigh's favorite nurse to the anesthesiologist, Greg.
Thanks so much to everyone who has signed up to bring food, sent food, and those who have gone out of your way to do so much for us during this time.  All prayers and caring thoughts are very much appreciated.  I'm guessing my next post will be post-op, hopefully I'll be up to it after not too long!  XO :)

Getting closer..

It's hard to believe that one week from Friday is my surgery..
My amazing friend Leigh created a Food Tidings website for our friends to sign up to bring meals, etc. after we get home from surgery.  The dates start on the 26th because that's the day my parents have to leave, and my total spoiling will end :(  I'm sure many of you saw the link on FB or received an email from Leigh, but if not and you're interested, here it is: http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=0742b845-9378-444f-a6c9-e1aaebb2fe34   Anything at all would be greatly appreciated, even if it's just your favorite dessert, that is fine with me ;)  If you're not big on cooking, we plan to do a bit of carry out too so gift cards would also be much appreciated! 
I can't tell you how much of a relief it is that my parents will be here with Logan while Kevin and I are away at the hospital.  I will not worry about him for a second, which you fellow parents know is priceless at a time like this.  I don't know who is going to have more fun, my parents or Logan!  I just wish I could spend more time with them while they're here because it will probably be a while before we're able to get home again.  Hopefully my mother-in-law will also be able to visit later in January and spend some quality time with the boys.  I'll join in if I'm up to it! 
Our schedule for next week is getting pretty packed at this point.  Medically, here's how things look.  On Monday I have my pre-op appt.  I'll be spending quite a few hours in Durham I'm sure between my neurosurgeon's office, mostly for paperwork I believe, then just down the road to the hospital where I'll have my bloodwork and possibly a chest x-ray as a precaution for the anesthesia.  They're going to leave it up to the anesthesiologist as to whether or not the x-ray is necessary.  We of course would like to avoid it for the baby, but I do have asthma so once again it's a situation where we have to weigh the risks.  On Tuesday we'll see my OB.  She wanted to see me the week of surgery, I think just to hear the heartbeat and make sure all seems well before the big day.  Last but not least is surgery on Friday.  We're definitely going to be busy between now and then, but trust me, we plan to make the most of it.  I'm looking forward to date night on Saturday with Kevin, Logan's preschool church performance (singing 3 songs) on Sunday, and spending the rest of weekend finally decorating the house with the boys for Christmas!  Better late than never, maybe we'll leave it all up a little longer to make up for the late start :)
Thanks again to everyone for their love and concern, it's really been overwhelming, but in a good way...XO :)

Thoughts...

This post is going to be one of few that will go against the grain here, it's not about Chiari.  I have some thoughts in my head tonight that I have to get out before I can sleep, and I figured this was the best place for now.
This pregnancy has been different than my first for many reasons.  Mostly you hear that it's because of the nausea and sickness I'm experiencing this time, but that's not all.  Last time around I sat waiting each month (thankfully not for too many), pregnancy tests in hand, to see if it was our time to be blessed with a little miracle.  I was ready, waiting, and welcoming all that was to come, the good and the not-so-great.  This time it snuck up on us, and was here whether we were ready for baby or not.  I think that's why, even though I'm constantly reminded of it with how I feel every day, it still hadn't seemed real to me, until today. 
Today I was motivated to put on make-up and flat iron my hair for the first time since October 7th (yes nearly 2 months), put on clothes that are not sweats or yoga pants, and head out to lunch with a good friend.  Thankfully those clothes still fit, though unfortunate that it's because of the way I've been feeling, but they couldn't hide the precious bump that has once again become a part of me.  I don't know if it's been there for a bit, hiding under the t-shirts, or if it just popped out today for the special occasion, but I'm glad it did.  It really does seem real now, and maybe, just maybe, it'll help me get through the not-so-great days yet to come...

Dear Baby,
We're going to have some rough days ahead little one, but please know that everything we're doing we truly feel is in your, and our family's best interest.  Just hang in there with us and be strong, I promise you, the best is yet to come :)
All my love,
Mommy

Pre-op scheduled..

Last Tuesday I met with Dr. Bronec, my neurosurgeon, in Durham for an update.  I thought I would see the PA, but nope!  He just wanted to meet with me one last time before pre-op, run all of the hands-on tests to see if anything had changed, discuss surgery, communication with my OB, and make all of our questions have been answered. 
My pre-op is scheduled for December 17th.  I'll be in Durham that day to sign paperwork at the office, then head to the hospital for blood work, etc., and possibly a chest x-ray as a precaution for the anesthesiologist.  We of course want to avoid x-rays with the pregnancy, but it may be a good idea since I do have slight asthma. 
I'm considering creating a caring bridge-type website at the request of a few local friends who want to provide food after surgery so I will keep you posted on that, once I have a chance to check it out! 
I'm really looking forward to having my parents and Ginger here in less than a month, but disappointed at the same time because I'm going to get to spend so little time with them. Ginger is my baby, I found her when I was in college at AU/LC being neglected by a breeder, it's hard to believe she's been with my parents for almost 10 years now.  I've always wanted to have her down here but didn't think it would ever happen.  She can't handle staying at even the best kennel, it's far too much stress for her at nearly 11 years old with her extreme attachment to my Mom, and the neighbor boy who usually watches her at the house will be away for Christmas, so she gets to come along :)  I can't wait to see how Tuff, Tini, and Logan react!  I'm really going to hate being at the hospital away from everyone here at home, but thankfully Kevin will be there with me the whole time...lucky him ;) 
XO

Been a few weeks..

Nothing major to update, just figured I would post something since it's been a few weeks.  I met with my OB last week so she could fill me in on her discussion with the high risk OB who had previously been out of the country.  He agreed that it isn't necessary to have an MFM present at my surgery since nothing could be done if the baby did go into distress.  Unfortunately at 16 weeks, it's not like a viable baby could be delivered.  Personally I would rather my neurosurgeon didn't know if that was happening so it didn't effect the job he's there to do.  He did agree though that we have the surgery scheduled for the best possible time, 16 weeks, which still amazes me since it was the time frame we chose before we even knew we were pregnant.  She also gave me a quick 11 week ultrasound, quite a change from 8 weeks!  We saw a great profile shot along with a distinct head, body, legs, and feet.  Also a rapid heartbeat of 162, up from 150 at 8 weeks.  We should be able to find out gender at our 18 week appointment in early January!
I have an appointment at the neuro clinic on Tuesday, I think just to see the PA and make sure nothing has changed very much and see how I'm doing.  Hopefully we'll schedule my pre-op appointment at that time.  Very grateful for my friends and neighbors who will be keeping Logan for me, as long as all of the kiddos stay healthy!
This pregnancy continues to be difficult, taking Phenergan at night and Zofran during they day for the persistent nausea.
I'd like to say thank you to Pete Dal Bello, the president of the International Chiari Association for featuring my story on their website last week. Also, thanks to Jess from the Chiari USA Facebook page for her efforts and concern.  It is all very much appreciated!
Thanks to everyone for your continued love and support, XO :)

Surgery scheduled..

It is official, I will have decompression surgery on Friday, December, 21st, my Mom's birthday :(  She and my Dad will drive down the day before to be here for the duration of the surgery since Kevin and I will be over an hour away in Durham.  The next step right now is waiting for my OB to discuss my case with the high-risk OB of the clinic, who is currently out of town, to see if I need to meet with him. I'll keep you posted...

Very good news :)

We were very nervous for today, the first OB appt for the baby on the way.  I knew Dr. Bronec (my neurosurgeon) and Dr. Zmiewsky (my OB) were supposed to talk yeterday and we had no idea if they would end up on the same page, wanting or not wanting surgery, my OB understanding Chiari and the risks, etc.  I had no idea what to expect.
I left the office today feeling like a different person, the appointment could not have gone better and Dr. Zmiewsky was fantastic!  Let me tell you, between her, Dr. Bronec, and his PA, Joey, we have the most AMAZING team in place!
First off, all looks good with the pregnancy.  We will be 8 weeks on Friday and due June 7th, as I had calculated ;) and a strong heartbeat of 150.  This was the first time seeing my OB since the pregnancy and since telling her about my Chiari when I last saw her in August.  We immediately started talking about the Chiari and her conversation with Dr. Bronec yesterday.  Like me, she was also impressed with how down to earth and easy he is to talk to. 
She absolutely thinks we should have the surgery during pregnancy, 2nd trimester of course, fitting our original plan of December.  I knew Dr. Bronec wasn't sure last I had talked to him, but she said once he had her support that he agreed, as do we!  She definitely feels it is not worth the risk of waiting and possibly encountering an emergency in the 3rd trimester where surgery would be much more risky.  She is going to contact a few MFM (Maternal-Fetal Medicine) specialists she knows at UNC and discuss the situation with them to see if they think an MFM should be present for the surgery and if so she will make sure that happens. 
I could not feel more confident in the team we have in place, taking this journey with us.  Between them and our wonderful friends and family, we are truly blessed!!
Thanks everyone for your continued love and support! XO:)

Symptoms..

I was finally able to speak with my neurosurgeon, Dr. Bronec, last Monday the 15th.  I don't think I'll ever get used to talking to a neurosurgeon on the phone and being so comfortable, he's the best :)
His major concern was my symptoms, whether any had worsened or new ones had come about.  At that point they hadn't which he was glad to hear.  He said the ideal situation would be that I experience little to no worsening of symptoms along with no new ones throughout my pregnancy and we wait until after the baby is born to do surgery.  The only problem with this is that we have no idea what truly will happen!  We would hate to wait, passing up the second trimester and optimal time for surgery during pregnancy, then have symptoms worsen in the third trimester when surgery is more dangerous for the baby, really impossible unless it's an emergency, and I'm then stuck with a numb arm or leg until after the baby is born!
We ended our conversation with Dr. Bronec planning to contact my OB to discuss what they think would be the best choice.  I see her on Wednesday for my first appointment so hopefully they've talked before then.
The day after talking to Dr. Bronec, I woke up with a stiff neck (which had been getting better since the round of steroids) and an aching at the back of my head.  The next day I experienced numbness below the elbow in my left arm, from my forearm down into the last three fingers of my hand.  This was definitely a first for me.  I have since also had some brief numbness in my right pinky finger.  Trying to be a responsible patient, I left a message for Dr. Bronec to let him know of the changes.
On another note, this has been a miserable pregnancy thus far :(  I have been nauseous, throwing up, and dry heaving constantly now for 13 straight days, definitely worse than last time!  I'm hoping to get some meds on Wednesday to take away the worst of it.  I like to say that it must be a girl because one of my sweet boys would never do this to their Mommy!!
XO :)

My how life can change in a day..

As I mentioned in my previous post, something came up a few weeks ago that made us think surgery would have to wait a while.  That 'something' just happens to be a little brother or sister for Logan, we're expecting! This has been quite a surprise for us, not exactly what we had planned at this point.  Our hope was that after having and recovering from surgery, I would physically feel like carrying and raising another little one, but I guess that choice has been made for us!
I found myself quite confused when I learned I was pregnant, which we found out while we were in the mountains, one of the many reasons we will never forget that trip!  I felt a mixture of happy, disappointed, scared, upset, just about everything you can think of.  I finally had a diagnosis and a great surgical team and was so looking forward to surgery.  Our minds were set on it and I couldn't wait to finally have some relief.  We thought the pregnancy was going to force us to put surgery off and I wasn't sure how I would do with pregnancy, childbirth, and a newborn in my current condition, without surgery.  Needless to say, my thoughts and emotions were all over the place.  Kevin has been nothing but excited from the beginning, but he understands that it's a little different for me.
Other than choice of delivery, c-section or not, there's little to no data out there on pregnancy with Chiari, or decompression surgery with Chiari.  Things definitely changed last week though when I was finally able to talk to my neurosurgeon's PA, Joey.  As it turns out, the pregnancy makes them want to do surgery even more.  They're worried about the additional strain a pregnancy will put on my spine, particularly the worst case scenario, paralysis.  The risk of miscarriage from anesthesia is 10% in the first trimester, however, it drops to 5% in the second trimester, a somewhat more comfortable number.  It's definitely one of those situations where you have to weigh the risks against the benefits.  Joey informed me that they would be contacting my OB to discuss what they all think is the best plan, and also to fill her in on exactly what Chiari is and what I'm dealing with.  When I last saw her and told her that I have Chiari, her reaction was one of 'oh, so you get headaches'.  Yeah, it's a little more than that!  As great as she is, she definitely needs to be informed by someone in the medical field.  I am still waiting to hear back from my neurosurgeon since I missed his call last Friday, but we are really hoping that everything works out and we can stick to our original plan of surgery in December, which will fortunately put me in my second trimester. 
Kevin has been amazing. We've both been sick with the head and chest crud, pregnancy and Chiari of course have me feeling like crap.  Despite all of this he's been so strong and made sure everything has been taken care of and that this household is running as smoothly as possible right now.
If I could ask a small favor?  Please keep all comments about the pregnancy on the blog, I don't want it all over FB just yet!  You are the privelaged ones who get to know first ;)
Thank you all so much for your love and support, we need it now more than ever to stay strong and positive, and as always, I'll keep you posted :)  XO

MRI results..

Sorry it's been a little while.  For one, we didn't expect to wait this long for MRI results!  In addition, something else came up that made us think surgery wouldn't be able to happen in December, but it turns out it might still be possible, so we are happy about that. 
The thoracic MRI came back normal.  They are able to see the end of the syrinx, but more importantly, they didn't find anything, like a tumor, that could be causing the blood in my spinal cord.  This means it is most likely from years of popping blood vessels at the hands of chiropractors, and my own regular 'cracking' of my neck. 
Once again, thank you all for your love, support, and concern and we hope to have more surgery information soon!  XO :)

MRI #3 :(

This was probably my least favorite one so far!  I was called in 30 minutes late, about 1 hour before I needed to pick Logan up from school.  The back of my head was hurting before we were even halfway through, this happened with the first one too, then it took them three tries to find a vein for the contrast ink.  My veins are normally difficult, but three?!  Needless to say I was ready for it to be over! 
A very special thank you to our friend and neighbor, Jessica, who got Logan from school for me. I think Logan was pretty excited about riding home with her and the girls, but I was glad he was happy to see me when I intercepted him in the parking lot. 
A Friday lunch trip to the playground at Sonic was definitely in order for both of us, and another bonus when we saw more friends there :)

Research and Resources..

I mentioned in the previous post that I started my research as soon as my doctor told me I had a malformation.  One very useful resource has been the ICA (International Chiari Association) FB page.  The head of the association, Pete, responds to everything himself, and he is a Chiari sufferer too, a very experienced one!  Getting a few answers from him and advice from their website really helped me know where to start.  I did as much research as I could on Chiari and decompression surgery, but there was a gap I couldn't fill on my own.  I found little to no information about doctors in my area, even in the state of North Carolina.  That's when I decided to put it out there and ask my FB friends what they knew. I received a few responses from friends who knew people that had Chiari and even had decompression surgery.  I planned to contact them to find out what doctors/surgeons they had seen, until 'the blessing' came along!  My friend Leigh, our little ones go to preschool together, reached out to let me know that her Dad, Dr. Gary Pellom, is an anesthesiologist at Durham Regional and also had brain surgery there years ago.  A neurosurgeon by the name of Dr. Peter Bronec assisted on his surgery and has since become a very accomplished neurosurgeon and is even very experienced with decompression surgeries.  The key with Chiari, as with many other disorders, is not just finding the best neurosurgeon, but finding one with a lot of experience with your specific surgery and who you also are comfortable with. 
I already had an appointment scheduled by my doctor with a local neurosurgeon for September 4th, and in her defense, I really didn't know what to expect.  I hadn't even seen a neurologist yet so I was going to have to start from scratch with a neurosurgeon, I got to go straight to the top!  She seemed somewhat familiar with Chiari and decompression surgeries, but there were some discrepancies between what she said about a few things and what I had found in my research.  She said that even though I have a syrinx (build up of spinal fluid in the cord from the pressure of the Chiari on the spine), that I did not have syringomyelia.  But in my research, I found that the two go hand-in-hand. In my opinion, she didn't have enough experience with my condition to make me comfortable.  She also told me that surgery wasn't necessary, that I could go on as I am now if I wanted to. This definitely made me feel like she really didn't understand how much Chiari affected my daily quality of life or know what my situation could potentially lead to in the future if I didn't have surgery.
I immediately contacted Dr. Bronec's office in Durham and set up an appointment for Sept. 18th with his nurse practitioner, Joey. This time I had much higher expectations. I had done more research and had learned a lot from the first appointment.  Thanks to a very kind neighbor who kept Logan, Kevin was able to accompany me to Durham, and we were as ready as we could be. 
Even with our high expectations, we were still blown away. We were hoping to get to at least shake Dr. Bronec's hand and put a face with the name that day, but knew there was a good chance we wouldn't see him.  Not only did we meet him, he took the time to sit with us for as long as we needed, a good 10-15 minutes, thoroughly explaining everything we heard from Joey and completing the physical tests he had done once again.  His 'bedside manner' was impecable and we can't believe how much time he made for us when he didn't have to.
It was evident even through the NP that they had a lot of experience in dealing with Chiari. We were told that on the scale of Chiari, a malformation of 0-5mm usually doesn't come with a recommendation of surgery, 5-10mm it is considered.  We were then informed that my malformation is 16mm long, definitely at the higher end of the scale, and surgery is almost a must as my symptoms will worsen and new ones will come, even paralysis, which I already knew.  Just in the few months since being diagnosed, my symptoms had already worsened.  I went through a series of physical tests and he couldn't believe with the severity of my Chiari that I still had such good use of my arms and legs.  He also mentioned something I hadn't heard before, that my syrinx should be white on the MRI films, but mine shows up gray meaning that there is the presence of protein, or blood in my spinal fluid.  They're hoping its just from broken blood vessels due to years of chiropractic treatments, but to be sure, we're doing a thoracic MRI to make sure there isn't anything else, like a tumor somewhere else in my spinal cord producing the blood.  Also, the end of my syrinx is not visible on the cervical MRI, it continues down past the end of the scan, so the thoracic MRI should show them where it ends and exactly how big it is.  As far as size goes, my syrinx is off the charts. 
My thoracic MRI is scheduled for tomorrow morning and I should hear back next week as to what, if anything, was found. As always, I'll keep you posted.  Continued thanks for all of the love and support, XO...

How we got to Chiari..

A large part of the reason I want to tell this part of my story is for others who may be struggling and suffering from Chiari but don't know it yet.  The more MRI's that are done, the more that are found. It is a rare, underfunded, incurable disorder so the least I can do is my part. I know there are others who have that feeling that something is wrong with their body, but no one has been able to put a finger on it yet because the symptoms are so all over the place.  Thank goodness for my chiropractors who spoke up and said my newest symptoms called for an MRI, and a new doctor who really listened to me, and agreed. I've always had that feeling that if anyone ever looked inside my head, they would find something wrong.  What do you know, my gut feeling was right..

Anyone who has known me for a while knows that physical health is something I've often struggled with.  My childhood through early adulthood was filled with everything from regular sprains and broken bones to migraines, asthma, Raynaud's disease, Mono, EB (chronic fatigue), inability to keep weight on, etc. Despite all of this, I still managed to excel in sports in middle school and stayed active with some outside of high school.  On top of all that I was in two car accidents within 6 months of each other around age 11.  The first one we were rear-ended, the other hit on the side where I was sitting.  It wasn't but a couple years later that I started chiropractic care for my neck.  During one of those sprains/breaks, I shattered the growth plate in my ankle, which meant that leg would not grow any more, but the other one did (Ei-leen!!).  It fortunately only grew 9mm more since I was such an early bloomer, but that was enough. I ended up needing more chiropractic care for the strain on my hips from my uneven legs. 
The next thing I remember after that, besides a few more rounds with the ankles (Skydiving, Tara ;), is a fall I took onto my tailbone while waitressing.  It was quite traumatic to my lower back and required even more regular chiropractic care.  My whole adult life I have struggled with back and neck issues, headaches, and migraines.  Those of you who truly know what migraines are know why I listed them separately from headaches! 
Pregnancy seemed to help my lower back with the joints becoming more fluid so they could spread and move as needed. Overall my pregnancy was a wonderfully smooth experience, until delivery!  We knew all along that Logan would be a bigger baby. Not record breaking, but difficult for my size and frame to handle, even if healthy. My doctor was concerned that I wanted to give vaginal delivery a try, but never ever did I want to go through what I had to by the time it was over with.  Needless to say Logan's birth was unusually traumatic to my body, because it wasn't healthy.  I now know it was particularly traumatic to my spine, but at that time, we had no idea there was something bigger going on.  Had we known about the Chiari, I would never have been allowed to have a vaginal birth, a c-section would have been required, and will be in the future should it be necessary ;)
I can't remember if it was within weeks or months, but not long after giving birth I started having these pains whenever there was any strain on the muscles in my midsection, in other words, the muscles used in childbirth. Often when I would sit down, get up, bend over, or anything else simulating childbirth (TMI), I would feel this pain and tightness start at the back/base of my head, then creep up over my head to my forehead, where it would pulse and pound for anywhere from 5-15 seconds or so, then stop.  It is completely debilitating, all you can do is close your eyes, clench your teeth, and wait for it to stop. It's kind of like a brain freeze, times a million.  Those 'pains' became more and more frequent, especially anytime my neck was out of place.  I now know that those 'pains' are what is called a True Chiari Headache. Earlier this year a new symptom began. Anytime I would 'crack' my neck to relieve tension, normally a few times a day, or have my neck adjusted by a chiropractor, I would get tingling sensations and pains shooting through my shoulders, down my arms, darting out my fingers, and sometimes down the right side of my core.  This is the symptom that prompted everyone to want an MRI.
Also during the time since giving birth, it was evident not only to me, but also to Kevin that I was no longer myself.  I was often tired, fatigued, rarely had energy, sometimes I felt depressed because I had no energy or motivation to get up and do much of anything.  I ran on adrenaline or nothing at all. Other times I was anxious for no reason. I know part of it was going from a full-time job I was passionate about to staying home, but I was passionate about that too and I couldn't imagine it being the sole reason for how I was feeling. 
When I listed all of my symptoms to my new doctor at the end of July, not only the head pains, shooting tingles down my arms, but the fatigue, lack of motivation, anxiety, etc., we decided on blood work and a cervical MRI (Aug. 2).  The blood work all came back normal, which was disappointing to me because I really expected that to be a factor, but of course the MRI did not come back normal.  My doctor called me herself the day after the scan to give me the results.  She never said Chiari, just that I had a malformation at the base of my brain, that it was brain tissue, not any kind of growth, and that she wanted a brain MRI to make sure nothing else was going on.  She also said she would be sending me to a neuro-specialist, which ended up being a neurosurgeon. My brain MRI (Aug. 9) came back normal, a relief of course. I immediately began my own research (mostly Internet) and the only malformation I could find that occurred at the base of the brain is Chiari. Reading the information was like reading a journal of symptoms I had been keeping.  They were all there, many I hadn't even imagined would be connected. 
So that is how we got to where we are...I told you it was going to be long :(  But if you wanted to know, now you do!  Next time I'll cover a little bit about my experiences with neurosurgeons thus far...XO

Why I'm here :)

Wide awake at 12:15 am, mostly from the steroids but also from my mind racing, I started thinking about how I want to stay in touch with those who truly want to know and care about each step of this journey.  Some friends have asked for me to keep them updated every step of the way, but it is difficult and takes a lot of time sending and responding to each text and personal FB message.  I needed to find a way to tell everyone at once!  I also feel like I've been filling my FB wall with too much, that there are probably people who have chosen to 'hide' me from their wall when this all started, plus I just don't want to keep putting it out there like that, it was never my intention in the beginning.  Initially I wanted to keep this somewhat private and small, at least until surgery time, but it started spiralling out of control once I realized the need to search for resources and connections.  I have no regrets though because thanks to those initial posts, I have found the amazing neuro team we plan to stick with (I can never thank you enough for that Leigh!).
There's always been a little part of me who's wanted to 'blog', but I didn't want to do the typical Mommy blog unless it was something that took the place of filling my FB wall full of pictures of Logan, but I decided his is a face I think everyone should see :)  So I guess a small part of me is happy that I now have something to blog about...weird way to think about a neurological disorder I guess!  Anyway, now those of you who want the information know right where to find it and can get it at your convenience!
I will probably end up doing more posts throughout the night, as I don't feel sleep coming anytime soon.  I plan to start with my journey to Chiari, and fair warning, that will probably be a long one.  I promise I will do my best to keep my normally long-winded self under control in the future! 
Thanks to everyone for all of your love and support, and please don't let it stop, we're going to need it and appreciate every bit...XO