2 years ago today...

Two days ago today, I was sitting in my room, looking out my window and wondering "how did I get here? why did all of this happen?" I was questioning the reasons "why" and "how", which at the time, was completely normal. In a way, I was processing the stages of grief, going through a 'loss' so to speak - Wasn't in Kubler-Ross's 5 stages of grief: denial, anger, bargaining, depression and finally acceptance. I can say that I did, unequivocally, go through each and every stage, some longer than others, before I got to the place I am today - complete acceptance of my life's journey with the painful, pain in the butt condition. Two years ago today, I sat in my room looking out the window questioning all of the things I couldn't change wondering how my life would turn out when all was said and done. I spent 6 weeks at Magee Rehab Hospital recuperating from that terrible fracture sustained 6 wks post op from my first double-surgeries 1 and 2 in Jan/Feb of 2012. Breaking my back was such a significant set back in my life, and what made it worse was that it occurred during therapy (of which I am one!) and of all places, it occurred in my home, not in some rehab gym or outpatient center. It was not only embarrassing but it made me feel so stupid, admitting to people when they asked "How did you break your back? Were you in a car accident?" At which point I would answer with my head down and my voiced faded (hoping they weren't really listening and wouldn't even hear me), and say "No, I broke it in therapy....in my house....ya know, with those "safe" therapists?? The ones that come to your house?? Yeah, with one of those." Over and over, each time I said that to someone, I would say it a little louder and a little louder each time, although I didn't really notice it at the time, until finally I was able to say it with an audible tone and with sense of "yeah so what"ness about me. Hell, now I yell it!! "I BROKE MY BACK 6 WKS AFTER THE BIGGEST BACK-TO-BACK SURGERIES OF MY LIFE WHILE IN HOME THERAPY WITH MY PT!!! YEP, I REALLY DID!!" LoL. It helps to have a sense of humor (and a big bottle of wine doesn't hurt either!)

2 years ago today, I was not the woman I am now. 2 years ago today, I was depressed, crying, in a ton of pain, unsure of my future and unsure if I would ever be able to walk my kids to the bus stop or go to my son's soccer game (walking on grass, which is harder than you think! Break your back and try it ;) Not so easy) Back then, I was unable to really 'believe' things would be ok -- and as life would have it, things would NOT be ok later on that year and even into 2013 when I would undergo another THREE surgeries and fight off incredible complications including double pnuemonia, plueral effusions, 2 weeks of bone rattling chills and with a broken back it was excruciatingly painful, 104-105 degree fevers (Yep, adults really CAN get fevers that high) and then to really make things interesting, I'd spend 7 months suffering from what I thought was sinus headaches - I even had sinus surgery in an attempt to get rid of the unbearable 24/7 headaches, double vision and serious hearing loss....like in a wind tunnel or laying in the tube of an MRI....'wooosh wooosh wooosh'....I was told it might be migraines and then I was told it was definitely not migraines....it was no migraine alright...it was the direct result of what turned out to be a very large cerebrospinal fluid (CSF) leak and resultant headache. I felt like all I did for almost 3 years was climb mountains...and when I got to the top of one, I'd have to climb another one...it was hard for me to be optimistic, hopeful or live with a feeling of true belief and faith - to admit to anything less would be lying. I am not the person I was 2 years ago, but the person I was 2 years ago today helped shaped the person I am today. Today I am a woman who still struggles with some pain, and even different pain in different places but it is NOTHING like the pain pre-surgery or the disabling life I wasn't able to live. I am not only functional I am LIVING. I am no longer a spectator sitting on the sidelines of my children's lives....No, today - 2 years later, I am a busy Mom with a 5 and 7 yr old - I am a Mom who can have a catch with lacrosse stix and a ball with her 7 yr old son, or kick (GENTLY) a soccer ball with her 5 yr old daughter. I am a Mom who is able to walk her children to the bus stop, take a bike ride or go to the park - - 3 things that if you said 2 years ago today to me I would say you were crazy. 

The difference between who I was 2 years ago today and the person I am now is immense: I am active (but still definitely need to rest, and I do!!), I am living my life not watching it pass me by, I am providing a much more stable and healthy environment for my children to grow up in. I am a more positive, confident, happy woman - I am a better Mother to those 2 beautiful kids. I believe my past has no doubt, shaped who I am today - - Today, having gone through my own personal hell on earth - - going through all of that given me the confidence to take any challenge (physical OR mental) head on and with great confidence. I am grateful for the hoops I had to jump through NOW because each ''hoop'' at the end of the race was like my own personal Olympics, 5 hoops (rings) for the 5 unbelievable surgeries I went through in 18 months time. Each step each day during each therapy session felt like by the end of the race, like I had run up the steps of the Philadelphia art museum like Rocky did. I "ran" my own races and struggled with my own demons (physical and psychological) - - and in the end, I won. I got my life back, and I am now LIVING my life. I never want to ever go back, but without ever having lived through "2 years ago today," I never would've been able to say "2 years from now...."

5 Months Post-Op of Surgery #7

And doing AMAZINGLY well. I am now working 3-4 days a week as LEAD PEDIATRIC OCCUPATIONAL THERAPIST in a long-term care facility for medically fragile infant, young children and teens, the large majority of whom are trach and ventilator-dependent or who have traumatic or acquired brain injury. I see such tragedy, truly of lives cut short, waaaay too short and it makes me stop and appreciate, REALLY appreciate my life, who I am, where I've been, the journey and paths I've traveled and how it has changed who I am - it has made me a better, stronger person for having lived through hell and worse only to come out, by the grace of God, on the other side. I am so blessed, my children and husband and I are so blessed to have one another and I am truly a miracle walking...I thank GOD every day for my life and I wouldn't change a thing in my life as it pertains to my scoliosis journey. It's not over yet. It never will be. I have terrible knee and kip pain and my lower back although fixed (as in, my back won't go "out" anymore) I still struggle every day to be 'normal' and to do 'normal' things. My children (ages 4 and 6) help ground me and they know all too well what the face of pain, REAL pain looks like because last year, they saw me at my worst. I truly believe that the worse is behind me and that from her on out, I can handle whatever is throw my way - because somehow, and only with God, I made it through 2012 alive and not paralyzed. We are stronger than we think, more resilient than we even know and more courageous than we believe. BELIEVE IN MIRACLES.

Click on the links below to read more about scoliosis, flatback deformity, CSF leaks, etc:

CSF Leak showing dural enhancement
(all of the white surrounding brain

                           

Scoliosis before (R) and after (L) back in 1993 when I underwent the first of what would turn out to be 7 surgeries over 3 decades

National Library of Medicine: Scoliosis

MedScape Today: Spontaneous Intracranial Hypotension - A Comprehensive Review

Journal of Head and Face Pain: Spontaneous CSF Leak

Johns Hopkins Medicine: Low CSF Headache

Scoliosis Research Society: Find ONLY SRS Docs To Treat & Manage Scoliosis

National Scoliosis Foundation: Flatback Deformity

Anatomy Of A Spinal Fluid Leak

You may be wondering, "Ok, how does one KNOW if they actually have a spinal fluid leak or not?" Well, I can answer that for you...and I can actually SHOW you what it looks like on imaging studies done to look for such conditions. Thanks to advanced technology (and my iPhone!) I was able to bring up pictures of my brain MRI on my laptop and then take pictures of them with iPhone, which in turn, allows me to share them with all of you here on my blog! So here we go.

A little background. The brain and spinal cord are covered by a thin, protective sheath (or membrane) called the dura. It is extremely thin and delicate and it allows cerebrospinal fluid (CSF) to pass in and out, through and between as the CSF bathes not only the spinal cord but also the brain, keeping it happy and moist and in the brain's case, buoyant (which I will address the importance of later). Appropriate levels of CSF keep everything happy and in a state of homeostasis (remember that word from 7th grade science class?!?!) When you have too much fluid in the brain, you get something called hydrocephalus and often times a shunt is placed in the brain to drain out the excess CSF. In other cases where one doesn't have enough CSF, you get what is called "intracranial hypotension" (ICH, basically low blood pressure in the brain). The 3 most characteristic imaging features of ICH are (1) enhancement of the pachymeninges, or dura; (2) downward displacement of the brain ('brain sagging') and (3) enlarged pituitary. And lucky me, I happen to have all 3.

(1)

PHOTO #1: My brain MRI, which shows a thin white chalky outline especially in the front and top portion; the posterior portion is little more subtle but there nonetheless. You can also quite easily see something called 'brain sagging,' in which the most inferior posterior portion of my brain sort of bulges a bit.

(2)

PHOTO #2: Front and center you will notice a large dark spot (sorta look like a duck, LOL). At about 2 o'clock, you will notice a large pea-sized thing (that's my pituitary). It's apparently enlarged and should be about 1/4 of the size it is now. 

(3)

PHOTO #3: This image clearly illustrates all of the white (that should NOT be present) in and around my brain, including the sulci (the 'valleys' and little nooks and crannies of the brain). The brain on MRI should be gray and black and the only white part should really just be the skills, the thick white outermost part.

(4) 

PHOTO #4: The posterior aspect (looking at the inside of my brain as if you were standing behind me) illustrates quite a few things, all of which are indicative of a CSF leak. First, it again shows all of that white chalky outlining in my brain, and it even illustrates the sections of my brain (L, R and Cerebellum) quite easily because the lack of CSF literally 'outlines' my brain. Second, it shows 'brain sagging,' as you can very easily see that my cerebellum is basically sitting on the base of my skull, bumping up against the bony skull. (OUCH! PAIN!) Third, it also shows the dural enhancement surrounding my brain, very clearly in the top and upper side portions.

All of these images show what my neurosurgeon calls a "textbook CSF leak," where the brain is literally telling the doctors "Hey there's not enough fluid in here and we're not happy." These imaging findings cause a great deal of pain, which is why my head is KILLING me, the base of my neck and shoulders BURN, my eyesight is blurry (because the lack of fluid causes inflammation of the meninges and dura, which press on the optic nerve), whooshing in my ears (like I'm in a tunnel or a fan is blowing directly into my ears), and a few other things.

Looking at me, one would think "She looks ok to me" as there is nothing blatantly obvious - I'm not missing any limbs or getting around in a wheelchair. I can carry on a conversation. I can drive a car and do the laundry. It makes for a difficult explanation when on the outside I look fine but on the inside I'm a mess. My brain. My spine. My everything. This surgery HAS to be a success. There is just no room for anything BUT success....and failure is not an option. I hope my next blog entry is one where I am feeling good and doing well. I hope.

To read more about Low Pressure CSF headaches, click on the links below:

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/headache/conditions/low_CSF_headache.html#Symptoms

http://www.headachejournal.org/view/0/CSFLeaks.html

Hard to believe...but yes, just 2 days (less than 48 hours) to go until my 7th back surgery. I keep thinking to myself, "With every hour that passes, I'm that much closer to relief"[hopefully]. You have to weather the storm to appreciate the rainbow and right now, I'm desperately waiting that rainbow...

I went to my cousin's graduation party yesterday and saw at least 20 other extended family members. It was so nice to see and hang out with everyone and to see and spend time with my 96 yr old grandmother just makes these family gatherings that much more special. I have a very large, close-knit Irish Catholic family on both my Mom & Dad's sides. We love, support and pray for one other unconditionally and we're just a very strong, faith-driven family who enjoys spending time with one another. Yesterday was no exception. It does the heart good to see my children, now 6 and 4, playing my own cousins children. And the family just keeps growing and growing - with each new gathering, there is at least 1 new addition to the clan. Yesterday's newest additions were my cousin Sean's new twin babies, 6 months old (boy & girl), and they just stole the show. Holding them and playing with them just really confirms how important family IS to me...I am just so incredibly blessed to have such wonderful extended family and although we don't see one another as often now that everyone is older and moving in different directions, when we DO get together, the gatherings are that much more special and enjoyable. Family really IS everything - without them, I honestly don't know how I'd get through 1/2 of what's been tossed my way. So for that or for them, I am forever grateful.

As I sit here on my patio, enjoying the sunlight through the shade trees here in my backyard, I am reminded of the beauty in the simplest of things - shade on a muggy morning, birds hopping from picket to picket along the fence, hopping in and out of the sprinkler and opening their wings shaking the water through and off of their wings, bunnies cautiously hopping through the yard in anticipation of one of our dogs finding and chasing after them, I am just so blessed to be experiencing the "little things" in life, like the quiet solitude of an early morning coffee here in my shaded, beautiful backyard...

So, 48 hours from now, I will be well-into my 7th back surgery. I pray that the Lord guides my surgeons skilled and steady hands and that He leads them directly to the location of the leak(s) so that they can be repaired. These headaches, and the accompanying nausea and exhaustion that comes along with them, need to be fixed - I just cannot imagine living in this kind of pain for the rest of my life. My biggest fear, BIGGEST, is that I wake up and the surgeons tell me, "I'm so sorry Michele, but we didn't everything we could to find the leak, including removing your existing hardware and then replacing it again, but we couldn't find the site of the of leak." THAT is my biggest fear. I'm trying desperately to think only positive thoughts, I really am, but it is so so hard given the fact that although my brain MRI "clearly shows an obvious CSF leak," my spinal MRI was not so obvious. So the doctors are hoping it becomes more obvious once they're in there. And so do I.

Hospital & Surgery Details For Family & Friends...

Many have asked so I thought it might be helpful to just post it on here - the WHO, WHAT, WHEN, WHERE & WHY of it all...

WHO:  Me - mother to Matthew and Katie, wife to Chad, daughter to Don & Carole, sister to Denise & Donny (with whom I pray for a reconnection, an email, anything - if you're reading this, know that I love you both tremendously), friend, aunt to 7 nieces and nephews and more...

WHAT:  Spine surgery #7: (1) Repair CSF leak, (2) Exploration of spinal fusion

WHEN:  Tuesday, July 23rd, 2013 (arrive at hospital 6am, surgery starts 8am)

WHERE:  Cooper University Hospital - 1 Cooper Plaza, Camden NJ - 08103

WHY:  This is a tricky one but I'll try to summarize simply and concisely. I have a cerebrospinal fluid leak (CSF) which stems from the leak discovered in my most recent spinal reconstruction last November 2012. At that point, it was 'plugged' with the screw at T12 (the vertebra I fractured at 6 wks post-op in March 2012) in a washout surgery just 4 days after the larger one in November where they extended my fusion up to T2 and down to S1 into my pelvis (w/ pelvic anchors). In Feb 2013, I began experiencing severe, debilitating headaches - I tried everything (sinus surgery, new glasses) to try and eliminate the headaches but nothing worked. We moved from NJ to PA at the end of April and 4 weeks later I was in the ER, admitted with severe headaches after a brain MRI showed a significant CSF leak. I spent a week in the hospital and then spent the next 6 weeks seeking out 2nd, 3rd, 4th opinions. And they all said the same thing: surgery to fix the leak. I am not a candidate for the lesser and much less invasive "blood patch" due to the sheer volume of bone graft and fusion bone not to mention hardware in my spine.

DETAILS of SURGERY:  They will explore the fusion in both the thoracic and lumbar areas in hopes of locating and fixing the CSF leak. There is no guarantee that they'll even be able to locate it despite having evidence that one most likely exists at the level of T12 where the previous leak was. They have no idea about the length of surgery (stating "it could take 4 hours or 14, we simply have no way of knowing until we get in there and see what we're up against"), length of stay in the hospital, length of recovery or even what to expect pain-wise post-operatively. I was in the ICU for an unusually long time last surgery, 3 days. Typically one spends about 24 hrs in there and then moves to a regular room. Since nothing is "typical" or "regular" with me, the hospital has already prepared for the atypical, unusual surprises that most likely will come their way regarding my post-op care and recovery.

My Dad accompanied me this afternoon as we went to Cooper University Hospital to meet with the ICU Nursing and Management team. We met with the Clinical Director (MaryJo Cimino, one of Cooper's finest - she is the most wonderful, knowledgeable and experienced critical care nurses I have ever had the pleasure of meeting or knowing), the Assistant Clinical Director (Suzanne Gould, another one of Cooper's finest nurses), Maresa Class (Patient Representative and advocate for any and everything patient-related). We had a good discussion and they all helped to put some of my fears at ease...they can't guarantee anything, but they can guarantee that all the ICU and Neuro nurses who work with me will be fully informed and kept up-to-date on my medical issues and circumstances. That's all I can ask for. I know I will be in very competent, skilled hands with MaryJo and her team as well as my amazing and highly skilled neurosurgeon, Dr. Steven Yocom and orthopedic surgeon, Dr. David Clements. 

4 Days Til Surgery #7, on July 23, 2013

With just 4 days looming, my thoughts are very conscientiously being rerouted from ones of fear and "what if" to those which envelope optimism, positive thoughts and ONLY positive outcomes. It's all I can do to carry on a conversation without excusing myself to use the restroom (again, sorry TMI) but my nerves always do and always have gotten the best of me. I've always had the so-called "nervous stomach," every since I was in early elementary school. A family of worriers are we...lol...we put on a good 'game face,' but underneath it all, we're all pretty terrified each and every time I hear my orthopedic or neurosurgeon say "I'm sorry but you need surgery to fix this." From past experience, which is all we have to draw upon, my 'luck' hasn't been the best...but despite the numerous set backs and issues that arose during my last surgery in November 2012, I'm still here...still kickin...still putting one foot in front of the other...that's all I really CAN do...sometimes it's not one day at a time, more likely it's one hour and in really bad times, it's one minute at a time...

I've revisited this thought before but I find it necessary for myself to revisit it again...we all have our 'journey' in life. Some of our journeys are filled with laughter, excitement, happiness and smiles. Other journeys in our life take us down some scary and unfamiliar paths, and those paths stir up in us a sense of fear, sadness, trepidation and tears. It really isn't a matter of "being dealt a bad hand" in life or of not having good luck in life. It has nothing to do with those things. It has everything to do with your state of mind and how you choose to handle these journeys life throws at us - - and it is a choice. You can choose to be a prisoner of your journey or path and say "Oh poor me, look at all the difficult things I've had to overcome in my life." OR you can choose to DO something and MAKE something of your journey in life and say "Ok, here we go again...we did it last time, we will get through it again. Let's just hang on tight and do our best to come out on top." I often joke and say "Man, I must've been a prostitute or murderer in a past life - what did I do in my previous life to make God so mad at me that he'd 'make me' go through all these surgeries??" We get a good laugh out of it because we know it has nothing to do with 'past lives' or making God mad. It just IS - plain and simple. I have a choice every single day - to either give up or fight. I can't give up because, uh, well I have a 4 and 6 yr old who are counting on me and quite frankly, giving up isn't an option - it's just not in my DNA to 'give up.' So that leaves the only other option, which is to fight. Fight once again through this next obstacle, this hurdle we need to jump over in order to make it to the finish line. I know there is some profound "lesson" that I'm undoubtedly supposed to "learn" from all of these obstacles in my life, these journeys and paths that have been anything but straight and narrow. I feel like I've been paddling upstream with a teaspoon my whole life when it comes to scoliosis but what can ya do but just get through it? It's difficult, yes - it's painful, yes - it's gotten me down mentally, yes and it has tried my strength mentally, physically, emotionally and spiritually - yes, yes, yes and yes. But I must make one point perfectly clear: Crying in your cereal and whining about it doesn't change the reality of your situation so just do your best to get it together, focus and don't give up - never, ever give up.

So what's funny about this (and all that I write) is that I'm not saying it to be 'preachy' or anything. I'm almost in a way trying to re-instill what I'm writing into my own beliefs again, so I don't forget what it is i'm trying to remember to believe in! LOL! It's easy to forget and loose focus and so when I write and get it all out on "paper" so to speak, I am reminding myself of what it is that I don't want to forget. 

So with that - and with just 4 days left until surgery, I am trying not to loose focus on what is important and what it is that we hope to accomplish with this next (and God-willing LAST surgery)...my children first and foremost, are the most important two little people in my life. They are so little and so courageous. They know Mommy is going to the hospital because she needs her boo-boo's fixed again, but they also know that through all of the unknowns inherent within this next surgery, what IS constant and what IS known is that they are loved, secure and will always have people who love them and have their best interests at heart in their lives. My husband, my strong and supportive husband, who has been through as much as I have over the years with all of this, is my rock - he is always there for me in whatever capacity I may need him and for that I am eternally grateful. And then of course, there are my parents, who have literally given up months on end for me and my family, dropping everything often times with little or no warning, so that they could come up and be with us helping us out with everything and anything imaginable. Without their help and support, my family and I would literally NOT be able to get through everything we've gotten through. True angels here on earth.