Over and done and not looking back.... hopefully!!!

Wow, a week has gone by and it seems as if I have barely blinked an eye, let alone lived through it!!  Last Friday was my decompression surgery and even now it seems surreal at times!  We arrived at the hospital at a little after 5 am, after momentarily freaking out my sister when she beat us there and I told her she was filling in for me instead, and we were settled into the waiting room and then into Same Day Surgery pretty fast.  Bless my SDS nurse for getting a great line in with not much trouble, seeing as that would be the only time of the entire stay that a line cooperated.  Everyone we saw and everyone that checked on us was amazing and went out of their way for our comfort and understanding.  I had mentioned earlier that the surgeon expected my case to be 4-5 hours long.  Although I knew I wouldn't care if it was 15 because I was sedated I knew my family was going to have a long day ahead of them.  Even with the amazing nurse liaison that gave them as much of a play by play as possible, my 4-5 hour surgery stretched to 6 hours and 45 minutes and I can only imagine how frazzled the nerves of my family and friends in the waiting room were.  Dr. Pollack had warned me that with tonsils descended as far as mine were there was always a good chance of them being folded, so we were aware that there could have been delays as she discovered just exactly what was going on in my head and neck, but we were not exactly prepared for what she DID find. My 14 mm herniation that was on the MRI turned out to be a herniation 14 mm down into the spinal canal and then forced backwards and wedged under my first vertebrae... ummm, no bueno!! That required more time and precision to unwedge the cerebellar tonsils, separate them, and then get them out of my spinal canal, which included doing a laminectomy and removing most of my C1 vertebrae as well as her finding several places where my brain had been under so much pressure that it had actually adhered itself to the skull bone and she had to literally scrape the brain from the bone to remove the bone plate. Yikes, just how much pressure was my poor brain and neck under and for how long?!?!?!?!!?   So, 6 hours and 45 minutes later, and a couple of hours in the recovery room on a ventilator, I was moved to my home for the next 5 days, but I WAS able to leave the breathing machine behind in PACU, which was a HUGE surprise and relief for all of us.  We had planned to be in Neuro ICU, but it was full and I landed in the Pediatric ICU with my wonderful friends and work family taking care of me. Even though I looked like a pumpkin from having been on my face for 6 hours and 45 minutes, everyone thought I looked amazing... or they were just telling me that so I wouldn't cry but either way, it sounded good at the time.  I do remember thinking something was constantly in my eyes the first night and wanted the dressings removed around my head, only to be told time and time again that it was my eyelids over my eyes that were keeping me from seeing because they were so swollen and they couldn't exactly remove those... ummm, guess not!

 Sleepy Sissas after a LONG surgery day

Dr. Pollack was all smiles when she spoke with my family and when she visited me on Friday evening before she left and was completely pleased with the surgery, despite the minor complications she ran into, although at one point someone did say she wasn't quite sure how I had been functioning as well as I had given the severity of my descending tonsils.
My sister and Darren were allowed to stay with me pretty much continuously for the first couple of days and I cannot thank them enough for caring for me and helping me and keeping all of my amazing friends and family updated so well on everything that was going on.  By Saturday morning I was feeling pretty good, sitting up quite a bit, and only dealing with a pressure headache instead of all of the other crazy symptoms I had gone in with.  Wow, is this what been "normal" feels like?  Is this what being halfway healthy feels like??  It's been so long I had forgotten how bad I really did feel!!  Although it took a tiny bit to get the pressure headaches under control, 10 IV lines in all, and of course the 8 inch incision that now lines the back of my head, I already knew I had made the right decision and that I felt like a completely new person.

Will took things VERY well, he climbed in bed with me, looked at my head and said "Way cool staples, Mom" and then crawled in the chair with Darren just to check one last time that I was really ok.  After that, it was back to my normal video gaming, reading, oblivious kid who just kept saying "I am so glad you are going to be ok now, Mom."

 My Kaity visiting!!

 River was all smiles and more than happy to snuggle with Aunt Jen!

I cannot thank the surgery team, PACU team, PICU team, and my friends and family enough for their amazing care, support, prayers, and hard work to get me back up and running and getting my life back!!!   Lisa, Marlee, Robert, Mary, Dom, Chrissy, and Sandy- all of you worked so hard to get me right where I needed to be and went above and beyond supporting me and my family.  I am honored to have been an adult PICU patient and cared for by such wonderful caring nurses!!!

Now for one of the most exciting parts aside from the fact that I am feeling sooooooooooooo good after surgery and hoping that is a great sign for a great improvement in the quality of life I have had lately....  Although I am officially a Zipperhead now, my zipper will very likely hide quite quickly and I won't have to figure out how to even my hair out at some point because she did not cut or shave my hair!  She used glue to hold it down and out of the way and stapled the hair into the incision when she closed it up.  27 staples, not including the original ones helping hold the dressings on, and tons and tons of glue that is going to take FOREVER to get out of my hair since all I can use is baby shampoo for 12 weeks.... yes, 12 whole weeks!!

So now I am home, resting and being spoiled, and going a bit stir crazy already, but knowing that life is headed back in the right direction!!  I will be in Odessa for a while as I cannot maneuver my stairs well just yet, and then I will be tucked away in Gardner, message or call if you would like to stop by, visitors are more than welcome!!  Thank you everyone for your continued thoughts, prayers, support, care, laughter, guidance, and love!! 

God Bless,
Jenna

The Time Has Come

The last 4 weeks have gone by so fast that it seems like just a couple of days ago that we met with the neurosurgeon and scheduled the surgery.  I am at peace, I know that this surgery is my only hope of feeling better and taking my life back from Chiari, but the fear has also set in.  Sometimes when we work in the medical field we know too much, we know the ins and outs of the surgery and inner workings of the hospital, we know the risks and complications, and we know the horror stories.  I have convinced myself that I WILL be a success story and I WILL have a perfect road and a perfect recovery, but the reality of what could happen breaks through my confidence ever so often.  I know that I will not return to life as I knew it, but I have high hopes and every intention of returning to as much of life as possible and not looking back!  All of the arrangements are made, the special pillows purchased, the legal papers filed, the tests performed, and in 12 hours I will be leaving to go to the hospital for my Zipperhead Day.
My parents and twin sister, boyfriend and other friends will join me at the hospital tomorrow, as well as many others who will be with me in spirit.  Bouga will attend school as normal tomorrow and then spend the weekend with his other grandparents.  At this time, he only knows that I am sick and it is not the kind of sick that you can just take medicine for and I will get better.  He knows I must go to the hospital and spend some time with my doctors so that I can get better, but he knows nothing of the surgery or that it involves my brain.  Afterwards, when I have come through surgery without a hitch and we can show him my incision and show him that I am ok, we will explain to him what I have gone through.  Until he can physically see that I am ok, it is pointless to explain anything to him, as he will only fixate and stress and he doesn't need to do that.  Thoughts and prayers would be appreciated for my family as they sit through the day tomorrow while I lay oblivious to the world in the operating room, and for Bouga as everyone else attempts to keep his life as normal as possible in the coming days.
 I am unsure of when I will feel up to a full blog update, so please join us on the CaringBridge site today and over the coming days as we will post surgery updates and treatment happenings, and my hospital room location for anyone who would like to visit.  http://www.caringbridge.org/visit/jennachristine

God Bless,
Jenna

Tick, tock, Tick, Tock!!! 4 Week Countdown!!!!

***Forgive any lack of grace and flow in today's update.  I sit here trying to find words to update all of my friends who have so selflessly sent prayers and thoughts and I know are so curious about how Thursday went and what next step comes in my journey, but tomorrow marks a very historic day for all of us, and brings 3 weeks of hell back up in my emotions as I remember and struggle with my experience at Ground Zero.  Of course the memorials and documentaries are on my TV and neither the blog nor the TV has my full attention. Such an odd mixed up emotional day today.***


So, when I updated about the ER visit I told you about my new duckling doctor friend and that I was basically on a crusade to get seen by Neurosurgery.  Well Tuesday morning I called and left a message, and Tuesday afternoon I decided to try to call again at about the same time that the nurse usually calls every time, thinking he just might be in his office.  I dialed the 5 numbers to reach him because I was at work and it was an in-house call and guess who answered their phone, very obviously NOT expecting it to be a patient on the other end?  So after a few minutes of stammering and paper shuffling, he says "The residents were talking about you this morning, how about Thursday?"  Me knowing they are in clinic every Thursday and not having much hope that he would possibly get me in THIS week, replied "Which Thursday?"  Good thing I was sitting down when he said "This Thursday 3:30, she's cancelling an appointment to see you."  Success, even if I required a duckling doctor accomplice and an in-house phone line to get it!!!!

Tuesday I cried with happy tears, relieved that I was finally going to move one more step towards getting my life back.  Wednesday I freaked out and melted down. What if she saw something different than the other doctors did on the scans? what if my tonsils aren't the right shape, even with the herniation? and let's just throw in the comment from another doctor that happened to mention that one of the current trends is not to shunt a syrinx, which was the one thing that I was banking on being the leading edge to get me into the OR.  I know, I know, it sounds extremely odd that someone would be saying they want brain surgery, but to my Chiari friends and to those who have researched, you know that surgery is the only hope for relief, and even then not all of us qualify for it.  So, two days of extreme emotions and stress and I end up with my blood pressure spiked, my head feeling like it had a jackhammer in it, and my neck feeling like the alien was trying to break out of it again.  Wonderful, just what I need, to be in pain and foggy headed to go see the neurosurgeon.  How on Earth am I supposed to explain everything correctly so that she understands exactly what i am going through if I can't even think straight because of the pain?  Turns out, I didn't have to, my symptoms and chart told her everything she needed to know.  Minus two hours of sitting and waiting and a short interaction with the now dubbed "little Italian troll" that made me seriously question my decisions and my symptoms,  it was a very easy, relaxed visit.  
Although I have worked along side Dr. Pollack as a co-worker, the two hours we spent with her allowed me to see an entirely new side of her, and also confirmed in my mind that I had made the right choice in picking her, I had made the right choice in waiting for her, and I had made the right choice in trusting her. She reviewed my chart, explained to me what my scans show, acknowledging that she knew I already knew that information and had done my research, but she wanted to be thorough.  That was extremely comforting to me, she really did care and understand that I already had much of the knowledge she was going to tell me or that I needed, so I never felt like she was talking down to me or didn't think I understood.  She reviewed a couple working theories with the treatment of Chiari, and a couple of explanations as to why some patients do not get relief and or require further surgeries so that I completely understood where I fit into all of the current treatment options and views in treating Chiari.  She did a brief exam, watched me stand up and almost fall over, watched me choke when I tried to speak, and tested my feeling in my arms, neck, back, and legs, and the immediately went into the description of the surgery.  Yup, no having me review all 22 of the symptoms we had so dilligently written out, no concern that so many of my symptoms had not even been attempted to be managed, no convincing her I needed help.   She had already decided she needed to take me to the OR to make room for my big brain to get the heck out of my spinal canal before she ever laid eyes on me. She then reviewed every aspect of what to expect with me, including bracing me for possibly needing to be on the ventilator over night due to my already compromised airway, and braced Darren for a 4-5 hour surgery instead of the "usual" 2 1/2-3 hours, and explaining that I would spend the surgery laying on my face with my head bolted in place so the family needed to expect me to look like a pumpkin with bolt abrasions on my temples the first time they saw me after surgery.  She said "It doesn't have to be done today, but it needs to be done sooner than later.  2-3 weeks."  I liked 3 weeks because everything seems like it is moving so fast, but if I went with that option she would be leaving me directly after surgery to go to a conference and I didn't want to be left in the care of another surgeon in case complications arose.  Darren liked 2 weeks because he is beside himself not being able to help me relieve the hell I am dealing with, but 2 weeks ended up proving too soon to get all of the pre-op tests in.  I need a swallow study and a pulmonary function test, and the one and only thing that could derail this entire process--- a eye exam to make sure there is not increased ocular pressure that would contraindicate the surgery,  so, 4 weeks it ended up being. . So, on October 7th I will become a Zipperhead, which worked very well because it is a Friday and the residents are in Grand Rounds so she will be the one doing my surgery, without residents even assisting. (don't get me wrong, I LOVE residents, I GET that they need to learn and I WANT them to learn to be able to go back out there and be great doctors for my family and friends, but when it comes to my brain- I REFUSE to be a practice case!!  Call me a brat, but this is my brain we are talking about and I picked her for her skill and experience, not to be a guinea pig for a duckling doc).  So, fast forward 4 weeks, get through surgery, then what?  Well turns out she is very proactive and barring any complications if I had a job that would let me return with restrictions, her time frame was 3-4 weeks.  Thank God I was leaning back on the exam table when she said that or I am pretty sure I would have landed in the trauma bay as a fall with a bonk to my head! Holy Cow? 3 weeks?????  And yes, the 3 week person does exist, I met her yesterday. Given my job and our requirements, she expects I can be back at work with no lifting restrictions at 6 to 8 weeks post op. I won't go into the huge debate on recovery times and whether that is realistic in Chiari people's minds or not, but Darren and I have decided our goal is 8 to 10 weeks and if I progress faster than that, wonderful, but I also know not to push myself too far too fast.

 Of our large list of questions we had prepared, we only had 2 to ask, she had been that thorough.  1- Darren asked her if there was anything to do to help control the pain and headaches until surgery.  Answer- Nope :(.   Diamox is out of the question because it decreases cerebral spinal fluid production and decreases nerve conductivity... that's a problem when I am already showing significant nerve involvement.  Narcotics are out of the question because I am already too neurologically declined with my balance and sensory issues that she is not comfortable masking symptoms without me being monitored. So the only downside to waiting 4 weeks is that there is nothing she can do to help me with my symptoms until my surgery. Uggghh, 4 more weeks of hell, but at least I know help is coming!!!!   The 2nd question, which I almost didn't make it through asking without crying, was if I would get back to my horses.- not just walking around on Chico the Wonder Horse, but actually riding and being able to learn to train further.  She laughed, and told me not to get ahead of myself, and said "Once you are recovered, yes, I will get you back to your horses, but I won't give you a time frame until we get there."  After doing so much research and finding so many patients who say their doctors have given them massive restrictions for the rest of their lives, this has been something that has been the source of many meltdowns over the last few weeks.  That being said, I have also since met a couple of Zipperheads that lead totally normal lives, once even jumps from planes, one is a postal carrier on his feet all day lifting packages and sacks, and one shows and trains horses full time.  Now, before the lectures start, I realize that my brain will be different than it once was, I realize that with a patch instead of a bone there, there are certain risks that increase my chances of being hurt or having complications, but if you know me, you also know that with my life and with Will's journey, we learned to live our life to the best we can and never be the family that if something tragic happened we would sit and say "I should have done xxxxx or I wish xxxxxx."  We will acknowledge and respect our risks, and we will live our life.  Heck, what are the statistics of being in a car wreck? And we all climb in a car several times a day without a second thought...



So, all of that said- for the detail oriented, curious, medical, and Chiari friends of mine here is the medical description of what is going to happen... In her opinion, because I am compressing my cerebral spinal fluid from the dorsal (back) of my head and not the front, I am one of the best candidates for a successful decompression without complications.  She again was point blank in explaining that she was not "fixing" the problem, she was stopping the damage and any further progression.  Her hopes and expectations are that it will improve the headaches, ringing, balance, rocking, speech, and swallowing by correcting my anatomy, but she will not promise that, nor would I expect her to.   I will have an incision from the center of the back of my head down to my neck.  She moves the neck muscles out of the way, she does not cut them like some surgeons do in this surgery.  The surgery is called a Posterior Fossa Decompression, and she will remove a small portion of the base of my skull where it opens into the spinal cord and sew a dura patch in it's place.  She believes in using your own dura as opposed to a synthetic patch or a bovine patch to help prevent rejection, and in doing so relieves pressure that builds in the dura. This is where her surgery becomes a 4 or 5 hour one instead of 3.  She uses micro vascular suture thread under a microscope to sew the patch in place, and will spend more time sewing the patch in then doing the entire rest of the surgery.  Her belief is that she would rather spend a couple more hours doing it correctly the first time then deal with the most common complication, a cerebral spinal fluid leak around the patch.  She will do a laminectomy on C1, and possibly C2, taking a small part of the vertebrae out to relieve pressure on that part of my spine, and will NOT shunt the syrinx!  She believes by size and shape and location that shunting my syrinx is not necessary and that just by relieving the pressure it will stop the damage and collection of fluid into my spinal cord.  BIG YAY after the explanation, but again another time I almost fell off the table since I was originally relying on the syrinx to get me into the OR!!  The shunt was also going to be the biggest hurdle in getting back to work because of lifetime restrictions often associated with it.  So, NO SHUNT!   So, surgery done, 24-48 hours in the ICU, 2-4 days on the floor on monitoring, and home for rest, recovery, and hopefully a little bit of being spoiled.... after all, I AM having brain surgery!!  ;)

Short Update- Lessons in the ER

Short update to fill everyone in since some of you have heard through the grapevine or read posts that talk about it...  After leaving work early on Thursday, I spent Thursday, Friday, and Saturday trying desperately to get rid of a headache that would not relent for anything.  Friday I had a procedure that way laid me all on it's own, but I will spare you that story.  From Thursday to Saturday morning I went through all of my emergency medications, all of my "tricks", and all of anyone else's "tricks" to no avail.  By Friday night I was not able to hold anything down, by Saturday morning I couldn't see straight and was unable to walk more that a couple steps without falling over.  I kept thinking if I could get to sleep it would go away, but nothing would let me sleep and the pain was so bad I couldn't stop crying.  By early Saturday evening I knew I was in trouble, and with the Chiari and syrinx untreated, unfortunately I am all too aware of the possibilities of what a severe headache could have meant, so off to the ER we went. ER lesson #1 with Chiari-  Just because the nurse working triage is a co-worker and probably has heard what is wrong with you, and just because somewhere in your chart it says you have this wicked thing in your head, don't assume she knows or will put two and two together.  Therefore, I sat in the waiting room a little bit longer than I probably should have because it finally dawned on me that MAYBE I should mention the Chiari- We won't even discuss the fact that I had handed them my medical alert band when I first got there that says CHIARI 1/SYRINX .  Not that I expect them to know what that means, but sheesh if a medical person doesn't and is in charge or figuring out what care you need, they should probably ask.  (HUGE caveat here- I am confident this was an oversight due to stress because it was a co-worker sitting in front of her and not the norm for our hospital... or at least I will keep telling myself that!!)  So, one mention of Chiari to the second nurse and whooosh, back to a room and an angel of a nurse named Amy.   After two IV sticks, explaining my case- both long term and immediate issue- to the triage nurse, my new nurse, and a doctor, I get Benadryl, Toradol, and Compazine, a very classic migraine cocktail that I have been told very classically does not work for Chiari migraines, although since it has been sooooo long since I have had to have emergency interventions for my headaches, I had hoped the cocktail would magically work and I wouldn't turn into a difficult patient.  ER Lesson #2 with Chiari-  Maybe it's ok to be a little bit of a difficult patient if you know what works for you and what doesn't to help streamline the process!!  Luckily the cocktail did manage to take the nausea away which was getting rather annoying because every time a wave of that came on it made the "icepick in my head" feeling worse, and I am sure Darren was tired of rubbing my back and trying to keep my hair and sweatshirt and arm and IV and O2 monitor untangled and out of my bowl I was clutching and my mom was tired of me snatching the call light away from her so that she wouldn't bother Amy! I am sure my sister is glad she missed all of that fun, as she came late to the party.  So, migraine cocktail down, CT scan to make sure there was no massive change that they needed to be aware of, and I finally get Dilaudid-  never had it before, but it is my new favorite medicine!!  Not only did the majority of the headache go away almost instantly, but my sister claims I went to sleep, or as close to sleep as you can in the ER sitting right outside the main desk with the medic radio blaring away on a Labor Day weekend Saturday night.   So after several hours, more Dilaudid, and a visit from a duckling Neurosurgeon who is my new best friend, I was sent packing home with more meds, and a promise from this new best friend to get on the horn to my neurosurgery team and go to bat for getting me in for my pre-op and surgery sooner than later. ER Lesson #3 with Chiari-  Make friends with the duckling doctors that come visit you, because they can help light fires!   He was actually surprised I had not been rushed in and decompressed by now... lovely, nice to know someone is on my side as far as time, scary to know someone, namely someone well educated in the brain, thinks I should have been in the OR by now.  So, I have managed to sleep most of the headache away, and sleep all of the meds away, and now I am ready to start making a full force push to get into Dr. Pollack's office and into the operating room as soon as possible!!  Thank you to everyone for your continued thoughts and prayers and well wishes, hopefully we will know more soon!!!

Multiplication and Mermaids

So, 7th grade is hard, and exhausting!!  After two weeks of 7th grade for Bouga and an hour and a half of it for me last Thursday, that is our description!!  Homework is important, HOME being the key part of that label, and Bouga is not quite getting that concept.  He likes the line "I can finish it in the morning before class starts." which I am pretty sure equates to "I can finish it in some other class before I have that class which means I won't pay attention to the class I am sitting in."  No Bueno!   Especially when the teacher that appears to be the sweetest and most easy going of his bunch said the easiest way to make nice Mrs. Moore turn into mean Mrs. Moore is to do math homework in Written Communications class.  Of course, math is the subject he most often wants out of.  After a couple years of fighting with Will when we work on math, multiplication specifically, and a discussion with Spencer, we almost think Will missed the multiplication tables in the 4th grade debacle that destroyed his life for an entire school year.  Yup, that's right.. my 7th grader has NO clue how to read the multiplication table, let alone have it memorized like we had to do at that age.  The poor kid has survived almost 3 years counting out his numbers to figure out his multiplication problems. I had no idea until last week when I tried to show him how to use the table to solve a problem and he freaked out.  Not a "I hate this" freak out but an honest to God "I have no idea what you are talking about" meltdown. Holy crap!!  Pre-Algebra is hard enough all by itself, but how on Earth do you survive it when you have gone 3 years not knowing something you were supposed to know???  And we wonder how kids make it through school without learning how to read!! This is a kid that has every eye in the school on him in an AMAZING school district and he struggled himself through 3 years without anyone figuring it out. Although that sounds horrific, YAY Will!!  I hate math, I was horrible at it, still am, there is no way I could have made it 3 years without one of the biggest structural bases of mathematics being nailed into my head and memorized, but he just made it 3 years with A's in math without knowing the tables, take that Autism!!!  So, now we get to learn the tables and hopefully get a new outlook on math!

Now, anyone that knows me knows that I love most anything that has to do with freedom, and speed-  horses, race cars, roller coasters, wild animals (minus snakes and spiders which I think should all DIE!!)  Although I have never given much thought to being a princess in a Disney movie, I always did like Ariel because she swam free.   Well I learned the other night that I can check being a mermaid off my to do list, because if what I experienced the other night was ANYTHING like being a mermaid, I never want to experience it again.  I have read about severe drops attacks, talked to new friends who have experienced paralyzing ones for minutes on end, and been told that the ones I experience are on the minor side of things.  Because I seem to be digressing so fast with this condition, I guess I knew more severe ones were coming but I had no idea how scary and down right depressing they would be.  The other night I was in bed waiting for the elusive sandman to visit, rocking and swimming like I always do when I lay down, and I had this strange thought that I was not able to move my legs.  I thought "That's insane, of course you can!!"  but when I tried I honestly couldn't.  I could move my hips, but it felt like my legs were glued together and made of cement.  After several minutes and attempts and a panic of tears, I finally was able to make them move separately, and eventually sit up and move, but they were very weak.  I wobbled to the bathroom only because I have door jams and walls to lean into every step of the way, and apparently decided to check the structure of the house along the way because I whomped my head on each corner because the swimming feeling wouldn't go away and I wasn't quite judging my distances right.   When I crawled back in bed and let it all sink in I just kept thinking "I don't like being a mermaid, I don't like being a mermaid" and for the first time since I received this horrible news, I let myself break down alone.  I have let myself get mad and have an occasional break down since I began this struggle months ago, but always when I am with someone who can talk some sense into me and be a logical voice when I lose it.  I have been very careful NOT to break down alone because I have been afraid if I lost it mentally on my own I wouldn't be able to turn it back off without seriously damaging my mind frame and outlook on all of this, and apparently I was correct- My laid back, I am not going to let this beat me or take my life away attitude took a major hit, although maybe that is exactly what I needed.

Everyone knows that I have not been aggressive with hounding Neurosurgery about the next step or test.  I felt there were a few things I needed to get in order before I decided to lay myself up with surgery, and honestly I guess part of me wanted to see if I could just live with it... I am not so sure why I thought that was going to work since I know a syrinx HAS to be operated on, but still, it sounded good in my head at the time.  This has not been a popular thought process with my loved ones, their thoughts are that we deal with this surgery and the rest will work itself out.  They were seeing what they felt was a steady decline in me, and I was still in fight mode and not willing to acknowledge the slow changes I had been making. . Well, I kept saying I needed 8 weeks to 10 weeks to get things in order to where I felt comfortable and it is almost 8 weeks since my diagnosis and almost everything is in order that I needed to be in order. So basically now there is no excuse to not hound neurosurgery. Instead, there is a sense of urgency to get things moving.  There HAS been a steady decline in the quality of life I have led over the last 6 months, but most noticeably in the last 8 weeks.  I have slowly gone from the one who had something to do every waking moment of every day to not being capable of doing anything most days. I have been dismissing the giving up going dancing because I just didn't feel like it, the sleeping more and more, the added minutes to getting up out of bed and letting the world finish swirling before I could safely walk, the increasing number of days that I would spend vomiting anything I attempted to eat because the migraines were taking their toll. Day to day and week to week there is no drastic change, but month to month there is no more denying that Chiari has stolen my life.  The only thing I am managing to do on a regular basis successfully is work, and I am scared that it is only a matter of time before that will fall victim to this if I don't get zipped sooner than later. I can't go a day without a headache, most of the time a full blown migraine type headache, and the pins and needles are always there now, and always painful.  It's draining to function through them, let alone annoying as all get out that they are there in the first place!!  One shift puts me in bed for 18 to 20 hours after I get off, two shifts in a row can wipe out 2 or 3 days.  This time of year we are always on the go between fairs and festivals and sports, riding our horses almost daily, and camping almost every weekend. I am always that fun mom that is taking my son to amusement parks and lazer tag and just loving and living life.  This year, I am trapped in my bed, unable to move well enough, unable to function to be out living our crazy fun life, unable to even fake it, which it seems I have been doing for the last year or so. A month ago I could tell you all about Chiari, and it was consuming my every thought because of the new diagnosis, but it was not consuming my every move. 7 weeks ago it was still a crazy medical term that included all of these odd happenings and symptoms in my life but I couldn't tell you that it had taken over my life.  I didn't want to admit that it had.  I wanted to be that one person that persevered through it without it being apparent that I was fighting this battle, I wanted to be the strong person you guys have always said "I don't know how you do it!" to, but this time, I can't.  I promise I am not setting a tone for all of my future posts to be doom and gloom, but there is something to admitting we are no longer in control, and admitting it to others just as much as admitting it to ourselves.   I am through waiting on neurosurgery to call and tell me when my appointment is and trusting that if this were emergent they would be moving faster.  I'm through saying if neurosurgery isn't calling or moving fast than I don't need to.  It's time to get help, it's time to feel better, it's time to get the steamroller moving again so I can have my life back, so my loved ones can have me back, and so Chiari can be just a part of a list on a medical chart and not the puppet master of my life!!!

What it feels like...

I promised a description of what life is like with this crazy thing called Chiari for my non-Chiari friends so that you guys can understand a little more about what is going on.  Well, words escape me tonight to explain "life", so my symptoms are going to have to be good enough.  Funny thing that memory issues and random loss of the ability to connect words is one of the symptoms!!  So, here goes..

Constant headache at the back of my neck and base of my head, not an "I had a bad day headache" but more like intense pressure and tension ache, that on most days turns into a complete migraine halfway through the day or can be turned into a migraine if I strain, tilt my head up for long periods of time looking at a monitor at work, looking up in the sky at fireworks, etc.  These can put me in bed for days and make it feel like my brain is trying to push my eyes out of my head, which I guess literally it is at some level. Exhaustion with chronic joint pain/stiffness, although with my life I am not sure anyone would limit that to being a direct result of Chiari!  Random dizzy moments where the world just goes "Weeeeee" and shifts about halfway around the room and then stops, along with dizzy, the floor is moving feelings every time I change position from sitting to standing, laying down to sitting, sitting to laying down, that one is fun, feels like the old game where we used to make each other "fall through the floor". Very odd changes in blood pressure when my head is turned in certain directions also can be very "fun.". Visual disturbances, floaters and halos randomly, that sometimes make it hard to read print or clocks.   Sensation issues- these used to come as the feeling of ants crawling on me in my arms, hands, legs, and feet, but now they are widespread and often more like pins and needles like when your leg falls asleep type of pins and needles, rather annoying and very painful. Insomnia, although who doesn't fight with that anymore??  Balance issues and depth perception issues, which are a bit hard to accept coming from a former gymnast and cheerleader!! I am constantly running into things, falling over things that aren't there, and misjudging depths when I walk, steps are my worst enemy!  Drops attacks... hard to explain but the best way I know how to is that the floor falls out from under me just for a second and my muscles seem to fail, like I lose all sense of direction and position, and then I am fine the next second.  Sinus issues and difficulty swallowing due to the crowding of everything in my head and neck,  I have become a master at taking small bites and taking crushed pills.   Rocking when I lay down, not I am crazy sitting in a corner rocking, but the feeling of being rocked, EVERY TIME I LAY DOWN.   Hearing my heartbeat in my ears almost all the time, not just when I run or when I smash my ear funny laying on it.  "Brain freeze headaches" every time I yell or laugh.   Boarder line nausea most of the time, again, ANNOYING! Poor blood circulation... I have no idea how this is caused by the Chiari, but my hands and feet are almost always either white or purple!  Memory issues and cognitive deficits due to decreased cerebral spinal fluid flow to certain parts of the brain and abnormal shaping and pressure on certain parts of the brain... and here I just thought I was a scatterbrain. Cold sensation through to the back of my neck and base of head and in my sinuses when I drink anything colder than regular fridge temperature.  Pressure and tightness in chest, especially when exerting energy...I can't even WALK a flight of stairs right now without being short of breath,  and here I thought I was just out of shape.  Rice crispy sound in my neck every time I move it, now that is not only annoying but a little creepy since medically I know what is happening in there to make that noise.

 So there ya go, physically, life for me. I am sure I am forgetting something, but I am a sleepy girl!  Funny that I never knew that most of this was not normal.  I had no idea the brain freeze headaches, the rocking, the heartbeat, the dizziness were problems!!  I spoke with Ron with neurosurgery yesterday and he will call me on Monday to give me my appointment information and back to school for Bouga on Tuesday!! Night night our Warrior family and as always thank you for your continued thoughts and prayers!!

7th Grade and The Bright Side of Chiari

So, everyone keeps saying "Wow, and on top of everything with Will..." when they learn my new journey.  Let me put that sympathy to bed!  Will is doing AMAZING!!!!!  He has only had one large seizure in the last year and two smaller one that we are aware of.  He was recently released from follow ups at MD Anderson (yay, no more traveling to Houston for business, we can now visit our long lost Houston friends on vacation instead of in hospital rooms!) and released from neurosurgery, probably a blessing in more ways than one since his neurosurgeon is leaving KU Med, and his neurologist has decided if he stays on this track we can start weaning medications at our next visit.  Hopefully he will outgrow these seizures after all!  This time next week, I will have a full fledged 7th grader in my house!!! Although he has been in the middle school for two years, this year he loses recess, has to change out for gym, and has to switch rooms for each class. I am a tiny bit concerned that I will have a lost child wandering around the big scary middle school next Tuesday, but I am sure someone will help him find his way!!  Wait, did you catch that?  If he's wandering around the school to find his classes, what did he lose?  His full time PARA!!!!!  Although he will have his PARA in certain classes, for social interaction therapy, and as needed through the day, he is being let off his PARA leash which will give him an even better chance at being "just one of the kids" around school when he is capable.  So, no worries on our life stacking against us, Bouga is doing fabulous!!!


On our fabulous, upbeat note, a few "On the Bright Side" thoughts on this whole Chiari business seeing as they have confirmed today that I will require surgery:
1- I don't have to spend lots of money on alcohol or funny drugs to make the world spin, see double, or feel like I am flying, I only have to change position quickly and weeeee, the same feeling LEGALLY and FREE!! 

2-I don't have to wish for a water bed or a hammock or a baby swing to lull me to sleep, every time I lay down, my sensation rocks.  How cool is that to be 31 years old and get rocked to sleep every night?  Funny thing is, I can only just now brag about it, because until recently I didn't know that it was not normal, I thought everyone got rocked to sleep every night.

3- You get a free Redbox rental on your McDonald's drink today,  I get a free brain surgery!!  (God bless our fabulous place of employment and our phenomenal benefits and insurance plan for removing that worry from my mind!!!!)

4- I'm not an airhead, although some people would beg to differ.  The fact is there's no room for air in there because my brain is too big for my head and is falling out of my skull!

5-I get to scare the crap out of all my friends at work who have not met my adorable twin sister.  Visitor, patient, visitor, patient.... that will make them think for a few seconds before they decide who to draw blood from, and if I don't like the person coming to stick me maybe I can offer my sister up for sacrifice, after all, I'm going to be miserable in bed and why wouldn't she want to to anything she could to keep me from being in any more pain???  Lol!!!

Ok, goodnight our Warrior family, I will share more of life with Chiari on another day!