Tuesday, April 3, 2012

Forget being green, it ain't easy being perfect!!

I apologize for abandoning the blog, I know everyone cares, I know everyone is curious, or maybe I am delusional and and overly confident that my friends all love me.  The short story is that being Dr. Pollack's picture perfect patient has not come easily, and therefore I have been exhausted, strung entirely too thin, and extremely unmotivated to write. The long story? Well it is MUCH longer, so grab a drink and settle in if you are so inclined.

I returned to work the 15th of December excited and grateful to be able to join my co-workers and return to the job and career that I love.  I know that not all of us Chiarians get that chance and I in no way wanted to take my chance for granted.  My first two shifts were insanely crazy and I was relieved that both days I held my own and left work feeling great, something that would not have happened before my surgery.  Shift three and I knew I was in trouble. I almost collapsed in the ER and my heart rate and blood pressure went bonkers. After caring for patients for only three shifts I found myself the patient again.  After every test imaginable no one had an answer for my odd episode and I was sent home and returned to work again several days later.  Christmas went by and was uneventful, I was tired but I was only 11 weeks from brain surgery and since I had no headache or sensation issues everyone chalked it up to me being out of shape and trying to get back into the swing of things.  In January I saw Dr. Pollack again and again I was given rave reviews and the "Picture Perfect" label for my improvements and recovery.  I also met my new neurologist who altered a couple of medications and sent me on my way.  Both appointments went great and gave me a lot of hope for my course to stay the same. Dr. Pollack cleared me for exercise and training and I was excited to get back to my normal life. Although there were some stressors in my life I kept plugging along, convinced that I was going to beat the odds and that very soon I was going to be able to put Chiari behind me.  Ummm yeah, I just typed that and you just read that.  Even though for months I have been learning of boundaries and changes I was going to have to make in my life, even though I have been able to recite at the drop of a hat the limitations and sacrifices I was going to have to learn to deal with, even though no one around me expected me to beat the odds, I had "known all along that I would".  I would tell someone that I knew how this was going to change my life, but I don't think I ever truly believed any of it or accepted any of it.  Yes Amy, even though you tried so hard to mentor me and help me understand what to expect, I still thought I was somehow going to be the one that outsmarted Chiari and it's grasp you explained to me that it would have. Registration started for the Warrior Dash and as some of you will recall, I was supposed to run it last year and my diagnosis trampled that plan.  I checked out the course, filled out all the registration information, and started exercise slowly.  I ran into Dr. Pollack on the stairs at work one day and she was thrilled with the fact that I was running on the stairs, so I explain to her my activities and my plans and you could have knocked me over with a feather when she said "Are you insane?!?!!"  Ummm, ouch.  So I go home, sit down with all my research, all my well wishes from loved ones that I received during and after surgery, all my new friends I had made on the computer at the touch of a button, and I lost it.  In the middle of a pile of papers and cards with my laptop just inches away, I completely melted down for the first time since my surgery.  I then spent day in and day out trying to wrap my head around all the changes that I was going to have to permanently make and all of the activities that I was never going to get to do.  Stress inside of my head, stress in my life that I had been trying to ignore and it would fix itself, stress because one of the new medications was making me extremely ill, stress because every 11-11 shift I attempted to complete since I had returned to work had landed me in the ER and all of a sudden I had this crazy headache that would not go away.  It was time to make some massive changes.  I begrudgingly gave up my 11-11 shift, knowing that my brain was just THAT sensitive and started figuring out other ways to quiet life down.  Unfortunately, Chiari had other ideas.

MRI Pre op on left, Post op on right

 A week into the headache I knew I was in trouble and I called neurology to get an appointment as soon as possible.  A week and a half into the headache and I could barely get to work and I was not functioning anywhere near my baseline and I called neurosurgery.  Two hours after my phone call to neurology I make two phone calls that I still to this day do not remember making.  I called a coworker and one of my best friends and told her I could not see straight and I needed help, and I called my supervisor and told her I could not see straight and needed help. By the time someone was able to get to me I was found on the floor of a small report room with no recollection of how I got there or the phone calls that I had made... and so began my month long jail term at KU Med.  A month of medications and alternative treatments, a month of burying my head under my pillow because nothing my medical team threw at me would even begin to dull the throbbing band of pain that circled my head.  Phone calls to MD Anderson, phone calls to Mayo, protocol after protocol was thrown at me with no improvement.  After 28 days, an entire month, the neurology team at KU Med threw their hands in the air, admitted that they were stumped, and sent me home with referrals to specialists all over the country.... with my headache no better than it had been 28 days before. My MRI was beautiful and Dr. Pollack again blessed me with her "Picture Perfect Patient" label despite the fact that I was sure I was dying. The working conclusion was that my brain was shifting into its new position and that for some reason it just did not like the position it was in at the time but that everyone felt like in time it would level out and the headache would subside.   I went home trying to understand it all and at a time where my life should have been tail-spinning, I woke up one morning just a few days later with the headache gone.  Completely gone.  A week later and I returned to work almost expecting the headache to come back.  A week into work and no headache.  A follow up appointment with Dr. Pollack and she becomes convinced that stress is what has caused this odd diversion from her model path and that since most of the stress had been recently removed from my life I would continue being perfect once again..  Ummm, sure, if you say so crazy Russian lady!

  A week later I meet my new neurology team at Mid America Neuroscience Institute and the headache guru that quickly became my favorite person on Earth... although it took a bit of time for us to determine who was crazy in this mix of expert doctor, expert patient, and the devil called Chiari.  As the meeting progresses and Dr. Winegarner asks question after question and asks me to perform little trick after little trick. With each question he throws a bouncy ball about the size of a softball at me and tells me to throw it back.  Question, ball bounces to me.  Answer, ball is returned to him.  Back and forth and back and forth with different instructions such as throw it with your opposite hand, catch it standing on one foot.  We discuss my journey that led me to him, all the while tossing this ball all around the room. "What are your expectations of your visit today?" The ball bounces off the counter and into my hands and quickly I think maybe since I have a new team with new ideas I might not have to accept that I won't beat Chiari afterall.  "So that you guys can fix me so that I can go back to my normal life."  The ball bounces back to Dr. Winegarner   "You mean so that you can discover your new life?" The ball bounces on the ground and back into his hands, never coming towards me. "Nope, my normal life, my life before this stupid surgery."  SMACK!  Super hard red bouncy ball pounds squarely into my stomach, doubling me over and taking me off guard.  Stunned, I stand back up, blinking my eyes at him and searching my mind for the right words.  Did this new doctor who was supposed to help me just launch a damn ball at me???  I wanted to ask him who did he think he was but I couldn't find the words.  "Who do you think you are?"  Not my voice, but this strange new doctor's.  "You are not invincible, you are not self healing, and you cannot reconstruct your bones, push your spinal cord back together, and just forget all of this happened." Ummm, why not??!?!?  Ok, so by this point I knew why not, but I either had to suck it up and play cool or break down and cry and I was afraid of what else he might launch at me if I started bawling like a baby so I bit my lip, crawled back up on the exam table, and quietly asked him what was next for me.  "Getting you back to life is what is next, just not your old life.  We are going to find your new life." And so began the long discussion of his detailed plan to treat me and my brain that is too big for my head.  So, two weeks after that appointment, four weeks after I was released from being held hostage at KU Med, I am back on track, feeling better than I have felt in YEARS, and finding life again.  I am back on my horses, back climbing on the rock, and easing back into working out and discovering running.  Dr. Pollack still calls me her Picture Perfect Patient and Dr. Winegarner has named me Dr. Pollack's Princess, and me, I'm just glad I'm not green ;) !

Headaches will always be part of it, but hopefully with the right trials and treatment combinations we can minimize those.  Between the surgery and with the new medications, the pins and needles are very minimal, my balance is coming back, the rocking is gone, and for once in 10 years, I notice the days that I don't feel well instead of being shocked by the days that I do.

Saturday, November 19, 2011

Frozen, Frustrations, and Finding the Spirit

Frozen in time... that's how I feel right now.  My surgeon only holds regular clinic on Thursdays and it had been thought to be planned that I would be released this past week, however, my surgeon is a scatterbrain and her gate keeper failed to notify us that the week we thought I would be released the surgeon would be out of town at a conference.... glad to know she's so educated and honored in the neurosurgery community to be attending and speaking at conferences... but I need her here, too!! So, of course next week is Thanksgiving which puts my follow up appointment on the 1st of December.  For legal reasons they cannot release me to drive or work without actually seeing me, and even though we know I should have been released this week I still can't drive or officially walk on stairs alone because if something does happen and the insurance company sees that I was not released by my doctors, I'm stuck figuring out how to pay for EVERYTHING out of pocket, and Lord knows I don't want to have to figure out how to pay for brain surgery.  So I must behave and be stuck for 2 more weeks, which will make my release to drive and walk on stairs at the 8 week mark and my return to work at the 10 week mark.... 2 weeks past the deadline I had set for myself, and all due to scheduling issues, not my not meeting my goals.

6 weeks post-op

I miss Bouga terribly.  Even though I am getting to see him several times a week it's not the same as living in the house and raising my son like I am supposed to be doing.  It's killing me, and it's definitely showing in him.  How could it not when he is so routine oriented and requires the guidance and structure he does?   I am very blessed that my mother is able to care for him while I am going through this, but stepping up and parenting an Autistic 12 year old is realistically a little more than she is capable of doing day in and day out.  They are hanging on, but I am seeing a decline in Will's social skills and his school work and behavior has taken a HUGE hit. There are funny letters coming home on grade cards that I am not used to seeing and that I know he is capable of better, and I feel like I am letting him down by not being there right now to guide him and help him and know every detail of what is going on.

Bouga's School Pic

So, I guess frustration sums up the mood of my world right now.  Frustrated with the delays in my release, frustrated with not being able to care for my son, frustrated with this stupid electricity that I still feel up and down my body most days.  Ironically the symptom that made me scream to the doctors "Something is wrong with me!!", the symptom I couldn't ignore, the symptom that freaked everyone out, is the major symptom I am left with after surgery, and likely for good. I feel like I did 5 years ago when Bouga was first diagnosed... even though we have known there was probably something wrong with me for several years and I have been mis-diagnosed twice, coming to terms with a chronic illness is a process once it has a name.  A very odd process from a medical stand point when as a medical professional, for most of our patients, surgeries are supposed to fix what is wrong, chronic illnesses are treated with medications and therapies.  Those that require both are in depth, complicated patients and sadly, now that is the category I sit in.  I am honestly not sure I am ready to accept that.  I am not in denial, but realistically I am only on the 3rd step of the 7 Steps of Grief- Anger and Bargaining, I know I can live a relatively normal life with Chiari, and for that I am blessed, and I am finding my compassion again for those going through rough times and suffering themselves, but I am also finding myself lashing out at those who are healthy and only trying to help.  Angry that the surgery fixed some, but not all of the symptoms.  We knew that was the expectation, and that it may have not fixed ANY of them, but I still find myself saying give me back the other 20 symptoms if you could just take away the headaches and the numbness and electricity. I really am going to try not to complain about living with Chiari, at least I get to LIVE with it, but right now, I am not so happy about it.

I am trying to get excited about the holidays to help push me through all 7 steps, I am ready to shop, and ready to be able to decorate my house, and I think if I could get on a roll and do all of those things I could push my process along, however, being limited by not being able to drive and having tighter finances due to short term disability, makes getting on a roll a little bit difficult. I'm watching Christmas shows and listening to Christmas music, but Darren dislikes the holidays so much that decorating and getting this house festive really isn't an option, so I must wait.  Black Friday is not going to be safe for me this year, so I will be doing a lot of shopping online, and hoping that somewhere in all the movies and songs and ads I can find my childlike love for the Christmas season that I adore so much and annoy my sister to death with.

Oy, this could be a long process!!!!

Tuesday, November 8, 2011

4 1/2 weeks and A LOT of Lessons

I apologize for the delay in updates, between there just not being much to tell, my adjusting to medications, and my lack of motivation, the blog just has not made it to the top of the "To Do" List. I honestly have just been resting and taking short trips out to the grocery store and doctor's appointments.  I am just 4 1/2 weeks post op and, minus today, have really felt better in the last 4 1/2 weeks than I have in the last couple of years.  If you have read my list of symptoms entry this will be impressive, if you haven't you might check it out.. The only symptoms that I have experienced since the surgery have been slight balance issues, a few minor headaches that have managed to be squashed by the new migraine med cocktail they have given me, which is a huge deal for me because in 20 years we have never found anything that would touch them, and then the numbness and tingling.  So there have been HUGE improvements with the surgery, but of course, I still manage to end up frustrated.  The numbness and tingling in random places and often my entire body is just flat ANNOYING and I had very high hopes that that would be one of the improvements, and so far it doesn't show any signs of letting up.  While I do know that Dr. P has said it could be 6 months to a year before I would know how much of that was just angry pinched nerves and how much is actual nerve damage caused by the syrinx, it still is a massive reality check to me that I am not "fixed" and there is no cure for Chiari.  The last time I spoke with my neurosurgeon she said that I had to accept the Chiari as a chronic illness that was not going to go away and that I had to learn to accommodate it.  So, I will always have good and bad days, I will always have Mush Days, and I will never be normal again... not that I can claim I was normal prior to Chiari invading my life, but still, you get the picture.

Although the neurosurgeon considers me one of her worst surgical cases but one of her best improvement cases, my surgery is going to prove to be just the tip of the iceberg for my family dealing with Chiari.  My twin sister is showing some of the most blatant symptoms of Chiari and must be scanned soon, as well as my son is showing classic Chiari headaches and pain, which right now are responding to blood pressure medications, which most of us Chiarians know that if a blood pressure medication is controlling the headaches  they are because of increased pressure in the head.  Bouga has 11 MRIs and Dr. Grant has reviewed them.  He has told us that while it does look like it might be tight quarters in his head currently, he doesn't see any out right signs of Chiari, but we will have to monitor him closely as Chiari 1 often does not show up on scans until the patient is in their mid to late 20s.

So, right now, I am trying to assimilate to my new life and build my endurance back up to survive a day without break through medications and naps, and I am beginning to get out and do things that I had not been able to or willing to do for so long before surgery.  I am working on stairs and balance, and awaiting permission to drive again.  At this time my target for returning to work is the first of December, but we will see if I can get everyone else on board with that!!!  I did manage to survive the Halloween party, all dressed up and proudly showing off my new zipper, which meant the world to me since Halloween is my favorite holiday and I have not felt like going out for a Halloween party in a couple of years. My head later told me that going to a bar with loud music and dancing 3 weeks after brain surgery was not the smartest idea in the world, but it was great for my soul to get out and see my friends and know that there are important parts of my life that I AM going to get back.

In my down time I also have a new addition to my ink collection, a black and purple COURAGE on the inside of my right wrist.  Although the placement might surprise several that know me because I have always said I would never have a tattoo that I couldn't cover up, this just felt like the right place for it.  It seems like over the years having courage has become a constant for me, and the Serenity Prayer has always been a staple in my dealing with difficult situations.  "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."   Courage just seemed to fit me, and of course the purple shading is for Chiari awareness.

I have been completely humbled over the last few weeks to have learned the massive support system that was behind me during my surgery and continues to be behind me during my recovery. Friends, Family, Acquaintances, Facebook friends, family of friends, family of Facebook friends, and even people on Facebook and in prayer groups who have no idea who I am but learned of my Chiari Fight. I cannot thank everyone enough for the thoughts and prayers and love stretched out to me and my family and loved ones. God Bless each and every one who has added us to their thoughts, I fully believe it is because of that amazing support that I have done so well and continue to improve each and every day.

Saturday, October 15, 2011

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,

Thursday, October 6, 2011

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,

Saturday, September 10, 2011

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!!  ;)

Monday, September 5, 2011

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!!!