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!!!