New Page Added – Clinical Neuroendocrinologists

Hello HOPEsters. We are thrilled to be able to share with you a list we have tirelessly compiled of “clinically practicing” Neuroendocrinologists who provide direct patient care.

This is not an all inclusive list and does not include Neuroendocrinologists that are  “researchers or lecturers” only.

Let us know of any others that are not on the list and we would be glad to add them.

click-here-button

Also check out our Neuroendocrinology page as well, if you haven’t already done so.

Patient Spotlight – The Scapula Institute

scapulaanatomy
What a normal scapula should look like when not fractured or damaged.

So I have been very fortunate to have survived many rare injuries from the wreck. My journey continues with a new life plan and growing gratitude.
 
I am also fortunate to have my patient story spotlight featured in the 2nd Volume of “The Scapula Institute’s Newsletter”

fractured scapula
Scapula before plated – dark areas in center of scapula are broken and or missing bone

 
Take a moment to read and share this with as many people as you can. The more we can bring awareness to Polytrauma and the amazing medical breakthrough outreach that the Scapula Institute does, the more lives can be impacted and saved.
 
Many thanks to Dr. Peter Cole and his trauma team for all of their efforts on the behalf of bettering the world one patient at a time.
 
 

platingribandscapulajune2016
View from Back – Right Side Plated

rearviewplatingjune2016
After Reconstructive Surgery of Ribs and Scapula

;;

Hurtin’ for Certain

pain

 

Events are typically considered traumatic when they threaten the life or bodily integrity of the individual who experiences them. After experiencing a trauma people tend to develop certain predictable reactions.   Examples are the following:

  • Persistent and unwanted thoughts, memories, or dreams of the event

[while I have no memory of the wreck I was in, since I started dreaming again, I dream of being in wrecks, of my kids or family members dying in wrecks, and am consumed with many unwanted thoughts and various levels of anxiety when in a vehicle that varies from day to day.  On my worst days this creates a lot of fear and anxiety]

  • Heightened physiological arousal, such as tension, nervousness, irritability, startling easily, poor concentration, or poor sleep

[I can attest to all of this. This is one of the largest part of my recovery that I continue to work on and that gives me the most challenging hurdles to overcome and deal with]

  • Avoidance of places or things or events that are reminiscent of the traumatic event

[ I can’t say that all of this necessarily applies to me. I do like to avoid driving in bad weather, as it makes me quite nervous and fearful.  Stop and go traffic heightens my traffic anxiousness, and I have a lot of other challenges while riding as a passenger now…especially]

So, that being said, the wreck I was in was absolutely a traumatic experience.

I always felt I had a high pain tolerance before the wreck. I may have, I did give birth twice after all. Yet now I believe I was mistaken.  Childbirth Labor does not compare to multiple fractures and the chronic pain that never goes away from multi-system traumas.  At least with childbirth, eventually the pain stops and repeating that process is a choice.

My tolerance for pain has grown ten-fold.  What I would have gone to the hospital for before, I wouldn’t even blink at for a Tylenol now.  That being said, I have sunk into a new acceptance of this chronic pain filled body I live in now.  I accept it as my new normal.  My new cloak of pain I have become accustomed to.  Chronic pain that some days holds me hostage from accomplishing what I desire.  That is, until it raises its ugly head to show me it can still get worse with white hot nerve pain, muscle spasms, and a debilitating wave of continual sharp anchors that drag me down.

I have always had an intuitive relationship with my body.  A polytrauma screws all that intuitiveness up.  Some days it’s hard to know what is up or down or sideways with where that chronic pain is located.  Some days I can point right to its origin. Other times it feels like it is all over me and I can barely walk or pick up my feet.

I have been hurting a lot since I got off of the pain pills on my own.  My back aches, my feet intermittently get pins and needles.  My right knee doesn’t want to cooperate with that left foot that tends to drag by the end of the day.  My neck feels puffy, tight, and just hurts and acts like it has a little storm in there shooting electric lightening bolts down my arm to my fingers and up to my ear now and again.  My ribs that are plated, like to play musical ribs for the spasms and often include the right lung and back in their spasm just for fun.  My head throbs and I feel such intense exhaustion. Most days, it is a struggle to just get moving. Add that on top of the random high pitched dog whistle sound in my ear/head at inconsistent times.  Makes things quite interesting.

I am driving more now too…so that means no muscle relaxers or pain medication while on the road or doing errands. I am strictly diligent about this.  Of course, the trade-off  to taking on more responsibility is being more irritable, hurting more,  having more intense muscle spasms, shooting nerve pain, and dragging myself around literally days and weeks at a time without being able to get on top of the pain and discomfort.

joint pain

I am a whining mess as I type this as I so get tired of hurting and aching.  Here is the irony though.  I love being alive so much, and value life so much, that the value of living is worth more than the miserable pain that continues to come in waves.

I got news for ya’ ….Chronic pain threatens body integrity as well.  Any new flares that are not the new normal are seriously emotionally and physically exacerbating.  It’s like “seriously how much must I take”.  So the trauma continues and I remain….Hurtin’ for certain.

7 Mysteries of Polytrauma Exposed

 

mysteriesbrain

  1. Hermitdom – In the beginning, not only did I NOT want to leave my house to venture out into the outside world, I often was absolutely content to remain in my bedroom where I knew what to expect and it was somewhat controlled and felt safe and comfortable. This was my safe space.  Safe from the bright sunlight, safe from too many people talking at once, safe from the general noise of the world outside the room, safe from traffic, safe from having to explain what was wrong with me, safe from having my daily emotional breakdowns in front of others, safe from trying to stay awake, safe from being looked on with judgement or pity, safe from healthcare providers appointments, safe from additional pain from moving broken limbs across the room and down the stairs to face the reality I did not seem to fit in any more.anxiety

As time progressed, as my healing progressed, as I was forced out of the room due to sheer necessity to survive my pain, to attend numerous therapies and medical appointments, and to be a parent – I began to adjust to new tolerances.  I also learned rather quickly most of what triggers to avoid so I didn’t end up in a full blown panic and puking my guts up from the dizziness, headaches, and a bouncy massively overstimulating environment.

Getting out of the house is a solid accomplishment.  There is a lot of planning that goes into getting out and about.  There are things to consider that I took for granted before the Polytrauma.  Checklists are my friend.  If I deviate from this process we have established, things do not go well at all.

Some days I do better than others.  I find I am able to be out longer and more often than even a year ago.  However, I recognize that I do not have the same comfort level I used to before the polytrauma and I value getting back home as soon as possible.  Some days I still have to force myself to leave my room or go downstairs to the main living area of our home. Some days I feel ready to face the world, get outside, something happens that I didn’t expect and NOPE…back home I go.

Trips away from home, the longer the day, the busier the activity, the longer the recovery time afterwards.  A one day trip could take several days to recover from.   A day of appointments could take a week to level out from again.  If you have back to back appointments or requirements, it becomes a vicious cycle of feeling overwhelmed, incompetent, and beyond exhausted – just weary and pummeled.

So planning in advance, if possible, become a requirement.  Having someone help you organize your schedule, your time frames, your goals is imperative to attaining those small victories.

Having things to help you cope in moments you can’t be home is imperative.

  1. Brain Time – I created this term with my family. I wanted desperately to spend time with my kids, my husband, our friends, and people in general.  I wanted desperately for things at home to be normal.  Since the polytrauma I would feel emotionally and mentally….well…..flooded.  Like I was standing in the ocean and wave after wave was hitting me in the face and taking my breath away.  In my case though, sometimes their voices all at once, their walking, their questions, their playing, their presence is enough to overwhelm me.  It is like there are too many sounds to sort out or too many thoughts to try and think at once.  I would become irritable, frustrated, nauseas, and when I wanted it to stop…. it literally had to stop NOW, or I would puke, have an emotional crying meltdown, or just freak out.  So we came to an agreement that if I said “Brain Time”  all things ceased no matter where we were.

Reset-ButtonIn the beginning  I was at the point when I couldn’t easily reset myself, so I would say “BRAIN TIME”, go in my room (or they would have to leave my room), and I would stay there until things settled down in my head.  No interruptions, no calls,  no questions, door shut. Sometimes this was moments, sometimes minutes, often hours, or occasionally days.  I needed absolute silence, a dark room, a warm heavy blanket and to lay down perfectly still.  I slept a TON.

As time has passed and I am now three and a half years out from my trauma, I still call BRAIN TIME now and again, yet it is less often that it used to be and I have employed other coping mechanisms to help me reset myself.

However, once my brain has decided it has had enough for that moment, or that day. It’s like it’s done “now” and not even I can control the shut down process.  I am learning to pace myself still and manage this more effectively.  This does not make for a great social life though, I will say that.

  1. Directional Instability – Okay I gotta say I have always been the type of person to have a pretty decent sense of direction. I never had a problem getting “lost” when I went into a building, when I drove, or when I was walking somewhere.  I was always quite proud of this “inner compass” and it served me well in marching band when I was a teenager, in college and in my work life, when driving an emergency vehicle, when locating items others seemed to struggle finding, and when driving my personal vehicle.

After the polytrauma, it was like someone took that inner compass and smashed it. When I tried to lift my head, the room would spin like just got off a tilt-a-whirl on the Gravitron from a carnival.  When they would sit me (and eventually after I sat up on my own) I would be so enormously dizzy that sometimes that labyrinth of puking was unavoidable.  No to mention the throbbing headaches that seemed to be everywhere and made my forehead feel like it was 50lbs all by itself pulling me forward.  The back of my neck ached and I would often have a “belly ache in my neck” if that makes any sense. Looking up and left exacerbated EVERYTHING and so I learned to avoid looking that way.

redTwo and a half years after the trauma I started to return to driving. I would learn my inner compass was missing/broken.  I was horrified to find myself LOST after taking my kids to school.  In fact, I couldn’t remember how to get there….a trip I had made hundreds of times before.  I used a GPS because it was like I had never been there before.  Now THAT made me feel coo-koo….I didn’t understand.  Then I got lost heading home.  I literally ended up 20 minutes in the opposite direction because I couldn’t remember what to do or how to get where I needed.  GPS became an absolute crutch.  As time has gone on, I have gotten better about figuring out my routes.  Often times I could think of where I needed to go…yet applying it to real life outside my head was a different reality entirely.

It is a horrific and scary feeling to feel LOST.  I called my husband in tears a few times telling him I didn’t know where I was or how to get home (when phone died and I didn’t have access to GPS).  Most times he would answer the phone, sometimes  he didn’t hear it and I would be out there in a full blown panic.  I would feel scared and the noise around me seemed to get magnified to a level that felt like it was trying to kill me.  I could feel myself slipping into this dark space of isolation and I literally couldn’t think of how to fix it.  I do not remember how I made it home in those elevated panic times.  What I do remember is deciding I couldn’t drive yet and that I didn’t feel safe outside of my house, let alone my room.  It has been a massive process to get back to driving again.

Now I am driving more often and the short local routes I do really well at.  If I forget I just turn on the GPS.  We purchased a charger for the vehicle so I never have to worry about my phone dying (unless the bill doesn’t get paid – GPS doesn’t work then by the way).  So the phone is as important as the mortgage for me as far as financial priorities.

Buildings I have been to a lot I still get turned around in since my Trauma.  Oddly enough sometimes I get lost in my own neighborhood or kids’ schools.  If I survive an outing without getting lost, having a panic attack, or struggling to survive the experience – I consider that a WIN!

  1. Peat and Repeat Languaging – the way I communicated became annoying and complicated.  I not only would have to read numerous times a sentence or a paragraph to catch it all, I would also have to listen to a voicemail like 4-5 times to get it all because remembering the number or message seemed suddenly impossible.  When people would talk to me I had to have them look at me to hear them.  I found myself reading lips to understand what I was hearing, or thought I was hearing. Speech Bubble Indicates Speak Dialogue And Speaking If they turned their backs to me I would ask them to turn around and repeat what they said.  Some folks are super accommodating, some act put out by this.  Often times folks think you aren’t interested in listening or you do not care about what they said.  It wasn’t that, I just couldn’t process what they were saying.  Sometimes the words didn’t make sense. It’s like I was listening to a foreign language sometimes.  Sometimes it was like I could see their mouth moving, hear noise coming out, yet couldn’t make out the words.  This was maddening.   Oh!  if I was doing something and all my focus was on it (like typing or reading), forget about me hearing you..it just didn’t happen.

This has gotten better for me in a lot of ways through my rehabilitation journey,  not better in other ways – however, I keep learning ways to cope with it despite its abounding annoyance.  I am a lot better about being vocal about it though with who I am speaking to now.  Once you get used to functioning at a certain level it just becomes your new normal and you accept it as what is.

  1. Where’s the Word?… Doh! – Okay, I have always been a talker. I started talking early as a baby and I haven’t quit since.  I love words, their meanings, and expressing myself in a creative fashion.  I won spelling bees in my younger years and have always been a semanticist and quite loquacious.

However after the trauma, that seemed to also have changed.  I couldn’t remember how to spell basic words.  I find myself misspelling things often and missing the same specific letters when I type. I would look at say……a couch.  I could see the word in my head, I knew what it was, yet all I could get to come out my mouth was “that thing there that we sit on”.  I have become accustomed to calling things differently than what I am thinking now or what they actually are. Sometimes I come up with some pretty creative descriptions.

  1. Bon Appetit No More – Food has been my friend for years. My family has always celebrated with food, rewarded with food, and used meal times as a social gathering time to express our love while being able to share something we all enjoyed….cooking, talking, and spending time together.  I could always tell when I was hungry, when I was full, and when I was snacky.

 

bonAfter the polytrauma I seemed to lose the ability to feel hunger or fullness.  For some bizarre and I am sure possibly scientific reason I lost my appetite or desire for food in general.  No more interests, no more favorites, no more “cravings”, and no more enjoying the things I used to enjoy before.  My sense of taste and smell had changed.  Some of the things I enjoyed before now repulsed me.  Smelling certain types of food cooking was enough to turn me “green” (sick). Just looking at certain types of food was repulsive. The connection with food emotionally seemed to go on vacation.  In fact, if I wasn’t brought my meals in those early months and sometimes  still…I just wouldn’t eat because I would just forget to eat or have no interest in it.

As time has progressed, every once in a while I go from no appetite to suddenly HANGRY (angry rage filled hunger – almost a desperate hunger); HANGRY is rare though.   More often than not, I forget to eat or have no interest in eating.

I do like some textures or flavors of some things that I never liked before.  My family and I equally find this as quite bizarre.

  1. What Temperature Is it Anyway? I remember a few specific things during my recovery process that stood out and I still wrestle with. Chronic pain I have written about in other Blog posts and will probably write about again….however what I am referring to here now is TEMPERATURE.  More specifically FREEZING MY TUCHUS OFF!!!  I was always cold.  I couldn’t get warm, not even in the Summer months.  People would be sweating and I would be freezing and covered up with  my electric blanket and shaking from being so cold.  I gotta tell you that being so cold that you are shaking and having multiple fractures does not a good combination make!

jamaprintI have come to realize that my thyroid-pituitary-hypothalmus axis was way off.  My hormones were all over the place and apparently I rattled that temperature control  center of my brain pretty good.

I still have some great hurdles to overcome when controlling my comfort regarding temperature.  At least now I can feel warmth eventually and not be as  cold.  Sometimes, I even get hot flashes occasionally and naked isn’t naked enough to cool down.  More often than not though, I still get cold.  Brrrrr’kin is what the kids call it.

So what temperature is it anyway?  I am probably not the most reliable person to                ask.  You might want to check outside…..then let me know.

 

There are many more nuances that go along with recovering from a polytrauma and these “7 exposed mysteries” are not an exhaustive list, not even for my experiences.

However, they are some of the things that are not necessarily visible changes to anyone who isn’t experiencing them directly and I felt they were worth mentioning.  If you are experiencing these things, you are not alone.  What you are experiencing is real.

Hopefully, understanding that this is now your new normal will help you accept yourself as you evolve towards your plateau in search for treatment and healing.

 

 

Polytrauma – The Ripple Effect

rippledefinition

There is a chain of events that happens with an auto accident that involves serious injuries, polytrauma, or death.  rippleA ripple effect that swirls and snatches and seeks to destroy not just the patient, but the family, the spouse, and friendships of that patient as well.

First, there is the initial accident.  This not only causes the injuries, but causes a multitude of mental stressors as well.  Fear, anger, shock, disbelief, numbness, sadness, enormous helplessness and grief.  If the person survives there are things that help relieve those stressors – such as gratefulness, happiness, apprehension, confusion, hope, and for some, a distinct solidification of their spiritual base.

The stressor for the patient is that the accident itself has happened to begin with; thus causing a multitude of injuries that may affect more than one aspect of their life. They may have memory and cognitive issues in addition to orthopedic injuries.  They may have behavior changes and appear to be a different person than they were before the auto accident.

The person may or may not have support and help from a trusted circle of family or friends as they fight to survive, exist, and recuperate. After a while though, often times, friends disappear.  Sometimes, the burden is too big to understand or absorb for family as well. A catastrophic injury absolutely shows you the genuineness of the people around you. Life continues to move on without you and you become acutely aware of this.  The relatives, coworkers, friends who were supportive at first…eventually go about their lives and forget that you are there….still struggling.  The patient is left circling in the same spot, sometimes for months at a time.

Every stressful event that happens AFTER the accident compounds and slows the recovery process and adds to the mental and emotional stressors in the patient and their relationships with others.  PTSDAny delayed treatments, or misdiagnoses, or haggling over care of the patient (whether by the family or the patient themselves) causes additional added stressors, which impacts the ability to heal in a timely fashion.

Something not often talked about or studied is the real impact that Polytrauma and Traumatic Brain Injury has on the spouse or children of the patient.  There are changes that happen in those relationships.  The household dynamics may change significantly leaving the family feeling disorganized and broken.

Children may feel insecure, may blame themselves, feel helpless and hopeless about their parent’s recovery or their parent’s relationship.  They may act out in ways they did not used to.  They may regress in their development, they may become isolated or clingy. They may try to act in a parental role with siblings themselves.

Child trauma

They may find ways to cope that are not healthy.  Some kids are able to adjust to the changes going on with their parents with lots of support, education, explanation, and patience. Some are not able to adjust.  Sometimes the injured parent is too different for them to understand. Sometimes witnessing the changes in their parent is too painful.  Sometimes a spouse or child can incur secondary trauma/PTSD as their loved one recovers.

The dynamics in a marriage are also hit with one wave after another depending on the level of injuries a patient has and how severe they are.  In a polytrauma or with a traumatic brain injury, often times spouses are forced to take on the previous responsibilities of the patient (household duties, scheduling, transportation, budgeting, cooking, cleaning).  This may overwhelm the spouse if they previously depended on their now injured spouse to handle those responsibilities.  Compassionn FatigueThe financial stress will compound quickly.  The person injured, if a working parent, may be unable to return to work for a period of time…if ever.  This creates a massive financial dynamic shift for the whole family.   If insurance is not available, or does not cover all of the medical bill this can spell financial ruin for a family.  Not many individuals or families are in a financial position to endure a catastrophic injury/event.  This is only compounded when the parent that is left working loses their employment because they are taking too much time off work to care for their spouse/family member.  This can exponentially compound the stressors in the household.

Even the kids can be affected by the financial changes both directly and indirectly.  A family may have to go to food banks, acquire assistance from agencies for bills, food, utilities, transportation, etc.  Some may end up losing their homes and become homeless.  This is a dynamic ripple affect that goes beyond the initial injury at the time of the accident.  This ripple affect can continue for weeks, months, or years.

Brain injury often brings on drastic personality changes, which may include irritability, depression, limited awareness of injury-related changes, and argumentativeness.

never the same

Some spouses may feel like they are married to a stranger.

They become concerned about whether their spouse will ever be the same again.  The reality is, they will not.

 

The working spouse may feel alone in the marriage or like a single parent (if they have kids) due to the inability of the patient to take on the same responsibilities and roles as before.  The non-injured spouse may also lose their marital benefits for an undetermined amount of time.  The loss of a partner that they previously shared comfort, affection, mental support, and did activities with. This can put another layer of strain on the marriage, which is now no longer, a normal marriage.brokenheart

While most people, in an ideal environment without financial devastation and strong support systems in place, progress in their healing over time in a seemingly more timely fashion;  a patient with all these added stressors can actually see a delay or lengthening of their recovery period, an exacerbation of some of their symptoms and the real potential for more permanent disabilities.  Some patients may even develop mental health challenges in relationship to adjusting to their life of “new normals”. Coming to grips (acceptance) of their injuries, limitations, and the domino affect of seeming losses from their injuries, can be crippling and make the patient and their caregiver feel isolated and in a constant “survival mode” state.

The team in place to help the person recover should absolutely include their providers, and include the insurance company handling their claims as well.  Any delays or standoffs regarding reasonable and necessary patient care only seeks to elongate and sabotage the patient’s recovery and future progress.

The ripple affect continues.  The waves of pain also continue, yet the tsunami of numerous medical appointments lessen as time goes on.  The relationships the patient is left with will continue to shape the shores of their life as they now know it.   Some relationships will erode over time, some will get swept away by the current of recurrent trauma’s, some will stand the test of time and hold strong and true.

These moments.  The moments that are not measured by the number of breaths we take, but rather the moments that take our breath away are the ones that leave us grateful for being able to wake up to the ripple of a brand new day.

Fresh bamboo leaves over water

WebSite Page Update – Scapula Nonunion

Check out our newly updated webpage about scapula fractures and shoulder injuries from trauma.

SHOULDER INJURIES FROM TRAUMA –  SCAPULA NONUNION

Scapula2014Scapula1

Flail Chest and Rib Plating

Check out our latest Web Page addition. “Flail Chest and Rib Plating”

Caren Robinson - Pics PreSurgery 3

      

Leave us a Comment Below….

Chronic Pain is NO JOKE!

 

Chronic Pain Is No Joke!

So it has been 3 years 5 months and 26 days since the wreck I was in.  I just call this 3.5 years to round up when talking with people now.

So much has changed in that 3.5 years….and continues to.  The time I have spent adjusting to living with that pain will I believe be lifelong.  I have come to believe that pain is a lot like grief, just in a different form.  Like grief, there are various stages (also much like grief).

Grief Stages Denial, Anger, Bargaining, Depression, Acceptance

Denial & Isolation with Chronic Pain

The first reaction to learning about trauma is to deny the reality of the situation. “This isn’t happening to me, this can’t be happening to me.  I don’t have time for this to happen to me,” – though I think I skipped this first stage initially since I was so out of it.  I don’t think I had any ability to conceptualize what I had going on with me…..at least not fully. If I didn’t skip it, I don’t remember experiencing this as a first emotion.

I have always known throughout my life that it is a normal reaction to rationalize overwhelming emotions and to push away dealing with them for most people. This allegedly helps carry us through the first wave of pain or shock. However, when dealing with Chronic Pain that is caused by bodily trauma there is not just one wave or an “initial wave”  – there is simply….just…..PAIN.

The reason I said that pain is a lot like grief because pain comes in all forms. Orthopedic, muscular, nervous system related, brain/mental system related, endocrine systems, digestive system, reproductive system, literally every part of the body is engaged in this trauma when dealing with a Polytrauma and Traumatic Brain Injury.  Each system can be going through it’s own forms of “grief” or “changes” or they can all be happening at once….overwhelmed…..frozen…..stalled….or shutting down in response to the trauma.

Attempting to take all that in and learning that no one around you really truly understands is incredibly isolating.   Being unable to put to words how you are feeling when you have never been put into a place in your own life to need words to describe such a horrific continual experience feels isolating.  I would deny deny deny that this was actually happening – yet the pain made that reality absolutely undeniable.  All I could think of was PAIN….where the hell is all this pain coming from?  There was so much I couldn’t pinpoint a starting place.  It was like someone wrapped me in a warm pain blanket that was turned up to the highest level possible without relenting for months and months (literally)

Anger with Chronic Pain

As the effects of denial and isolation change in their dynamic,  reality and its pain re-emerge stronger than ever. I admit I was not prepared for this emotion which continually hits me in random waves. The anger may be aimed at inanimate objects, our healthcare providers, complete strangers, friends or family. Anger may be directed at the person we perceive that hurt us or even angry at ourselves. Often times feeling guilty accompanies being angry and for some people, this makes them angrier.  Sometimes being angry is a side affect of the trauma….especially if dealing with a head injury and the emotional center of the brain has been damaged.

As anger relates to chronic pain though – at least for me, the anger comes from not being able to do what I used to do.  Anger at having this affect my life, my mobility, my independence in caring for my own body, and change my normalcy to something I no longer recognized.  Anger at literally feeling like a prisoner in my own body and having expectations that are not realistic for the healing required for the injuries themselves, or my ability to deal with the injuries.  Anger about missed injuries, or those that are not healing as planned. Angry at feeling dismissed, not taken seriously by anyone outside of ourselves when I say I am hurting.  Angry about being financially destitute and unable to provide for my family the way I used to. Angry that I am hurting at all.

Some things that come with chronic pain and anger

  • Sudden muscle spasms or pain “flares”
  • Inability to take a deep breath or feel like the room is collapsing/shrinking around you
  • Feeling okay and then a wave of anger appears from nowhere and leaves just as suddenly as it came
  • Low tolerance for things you were able to tolerate before (everything seems exaggerated when angry or hurting and angry)
  • Guilt or shame for angry outbursts (when pain unrelentless or spiking) after you have had time to calm down and think about it
  • Appropriately angry about something but then transferring that anger to someone else about something completely unrelated to what you are really angry about

Bargaining with Chronic Pain

The normal reaction to feelings of helplessness and vulnerability is often a need to regain control. Let’s face it, with a polytrauma where you cannot walk/have difficulty walking, where you have to have someone feed you, dress you, wipe your butt for you, bathe you and leaves you feeling completely helpless – is a complete loss of control in its most humbling form

Admittedly I have always had a leadership/controlling personality.  I enjoy doing a job well and got value from how others viewed my ability to lead, accomplish, and successfully complete something.  I loved my independence and enjoyed working and breaking new ground in almost every aspect of my life.  Now I am trying to reinvent me.

Then BAM – chronic pain comes in and strips down any ability to control…at least completely what’s going on in your own environment – your own body.  This is truly where things spiral a bit…I personally tend to get consumed with dark thoughts and overthinking my care or lack thereof.  I think about how I can negotiate better treatments, better documentation, a better more proactive diagnosis.  It becomes almost obsessive.  I have to admit that there is a fine line between bargaining and advocacy for oneself (which has actually served me well orthopedically). However, along with bargaining comes some pretty repetitive self-talk.  This can be a strength and a weakness in the recovery process.

  • If only they had researched my injuries and found solutions sooner my rehab would have been shorter
  • If only they did the basic tests they would have caught that faster
  •  If only I got a second opinion from another specialist
  • If only I tried to push myself more
  • If only I didn’t push myself so far
  • If and if and if and if…even with God/Universe “God if you help me get through this pain I won’t do this”…..or “I will do this” just to help me deal with this pain that is controlling my life and every breath
  • Getting lost in “what if’s” and “if only’s” consume every decision in this stage.  This can lead you in directions of improved care, or hamper your progress – there is a fine line for sure
  • The desire to have my life return to the way that it used to be, restored to no pain zone, the ability to do more without pain, the desire to cope with the pain
  • The desire to go back and keep wreck from happening altogether

Depression and Chronic Pain

There are many types of depression out there.  There are 2 types of depression when dealing with grief and loss that appear most often though. The first one is a reaction to relating to the loss. Sadness and regret predominate this type of depression. We worry that, in our grief, we have spent less time with others that depend on us. This phase may be eased by simple clarification and reassurance. We may need a bit of helpful cooperation and a few kind words.

The second type of depression is subtle and, in a sense, perhaps more private. It is our quiet preparation to separate and to bid our old self as we knew it farewell, while dealing with our “new normal” and the chronic pain that we now live with.

With a polytrauma or traumatic brain injury a person is often on a lot of medications to control various injuries or mood disorders.  Some of these medications can actually cause depression. It is hard sometimes to tell where the depression is coming from and requires a thorough awareness of the patient’s medical history.  When dealing with depression in myself I learned my depression was there due to many factors – all secondary to the wreck and the ripple affect of all the injuries.  I got news for ya’ – peeing yourself in public because you aren’t able to get to the bathroom fast enough when that urge hits ya, living with a chronic headache pattern, chronic pain, and short term memory loss can be very depressing in and of themselves – and that’s just the basic stuff.  Now add money problems because you cannot work, being unable to pay bills on time, and all the other normal life stressors which now seem bigger than the pain some days and that depression can drag you down like a cinder block tied on your back while you are in life’s swirling pool.

Seeing your friends lives go on, seeing your family move on while you seem stuck in the same vicious circle – wake up pain, walk – pain,  exercise –  pain, carving your way through the day until you can go to sleep to hopefully escape pain –  (some days that actually works…… over time….until a pain flare)

When depression hits me hard, I notice that grief that holds hands with depression has a bit of a tighter grip. Sometimes this stage feels as though it will last forever and can feel truly overwhelming. I also notice that depression is harder to control when hurting.  So being in chronic pain is often not necessarily related to a mental illness (though can be related to endocrine and hormonal imbalances caused by trauma as well), but rather a response to hurting so much for so long and feeling frustration over adjusting to that “new normal”.  I also have realized that my pain tolerance has changed dramatically over the last 3.5 years.  I can withstand a lot more pain that I used to on some levels – not so much on other levels.  I also notice my depression has changed with that adjustment.

Also, by golly, depression is an appropriate emotion when experiencing great loss. A lot of people….professionals even – act like it is some kind of an unnatural process. That cloud of intense sadness that consumes one’s being when they feel like they are all alone in their experiences and realize that their life will forever be dramatically different is a real sense of loss. I really have to guard myself against that whole feeling of “what’s the point in living”  “why did I survive”  “what am I here to accomplish” and force myself to focus on positive self-talk.

Depression is not a “state to be fixed”, something to “snap out of”. Though I do believe it is important to recognize that our feelings are very real, but do not always tell us the truth about the situation.  Grief is part of the healing process.  Chronic pain is part of my life now.  Some days I manage it better than others – some days….not at all.  If grief is a process of healing, then obviously depression is just another important step on that journey. Allowing myself to experience it (yet not get stuck in it) is also an important part of that process.

Depression is also not consistent and can last a few moments to never ending cycle from day to day.   It’s okay to cry here and there for 5-15 minutes at a time my counselor told me. That is healthy.  It’s a problem though to be really addressed if it consumes your life so much you can do nothing else because of feeling so depressed.  If all I can do is think of the depression and cannot quit crying and am withdrawing so much that I am neglecting myself (eating, hygiene, activity participation), then more professional help may be needed.

Acceptance and Chronic Pain

Not everyone is able to reach this stage.  I still struggle with this stage myself on a daily basis in my rehabilitation process.  My counselor calls my ability to accept the changes to my life, my body, my new normals as a need to have “radical acceptance”.  Let’s face it….something radical has happened to me and therefore requires a radical form of acceptance.

Sometimes seeing beyond our anger or denial makes this more of a difficult process. This phase is marked by being calm. This is not necessarily a period of happiness and it is imperative to distinguish this from the apathy or withdrawal that I spoke about in depression.

So what does it mean anyway to have a radical form of acceptance?

Radical Acceptance to me, means completely and totally accepting something from the depths of my soul and with mind and whole beingness. I have to face the reality that I may never be able to work in the same way that I used to.  I have to accept that I am at my medical best in some things, still improving in others, and that yet others may never improve (or may even get worse). It means accepting I may need to use a cane, go to counseling, change the way I do things.  It means accepting that chronic pain is just a part of my life now and learning to work around it as best I can. It means knowing that my nerve damage may never heal (or it might) and accepting that.  It means to stop fighting reality.

Radical acceptance means that I do not allow myself to feel that rageful anger in my stomach when I am unable to do something I used to be able to do. It means not seething with resentment or bitterness when I see others who have similar injuries doing more than I am capable of with my own body.  Radical acceptance means, learning as much as I can, teaching others to do the same, and moving forward with my life.

Radical acceptance is way easier to talk about and understand than it is to actually put into practice in every moment of every day.  There are a ton of obstacles that come up to challenge accepting where I am at now. I do know that if I stop fighting all of this, eventually I will suffer less.

What Radical Acceptance is not:  It is not giving up.  It is not tolerating being mistreated or accepting a misdiagnosis. It is not stopping the ability to advocate for oneself or others.  It is not just accepting diagnoses as they are without researching the options thoroughly.  It is not giving up on caring about or speaking up for myself or others. It is not about being as silent as a church mouse in a corner with no thoughts and ideas of my own.  It is not about even….. being Radical (which some interpret as crazy, out of control, explosive, or some other such adjective).

Summary:

Coping with a polytrauma, traumatic brain injury, any type of grief, and loss really…. is ultimately a deeply personal and singular experience — nobody can know EXACTLY what you are going through.

There are many stages we all go through in our recovery process.  These stages closely resemble the stages of grief. There is no set time frame assigned to experiencing each stage, or a particular order in which we experience these stages.  Sometimes a person may never get to the Acceptance stage. This is however, the goal for myself.

Acceptance is often misinterpreted by others as the person being “all right” or “okay” with what has happened to them. This is not the case. Some people reach acceptance right away.  Most people though don’t ever feel okay for years, if ever. By achieving a level of “acceptance” a person is choosing to learn to live with their new normal self and move forward with their life.

It is not uncommon to repeat the various stages or be focused on one particular stage. Chronic pain can directly affect the way a person processes these stages as well.

 

(Over recent decades, a reasonable amount of data has been generated which suggests that greater acceptance of chronic pain is associated with fewer pain-related difficulties, such as distress and disability, and better overall quality of life (for reviews, see: McCracken & Vowles, 2014; Scott & McCracken, 2015; Vowles & Thompson, 2011).  http://www.bodyinmind.org/pain-acceptance/

 

About the 5 stages of grief:
In 1969, Elisabeth Kubler-Ross introduced the stages of dying in her book, On Death and Dying.
Before her own death, Elisabeth Kubler-Ross and her co-author, grief expert David Kessler adapted her well-loved stages for grief in their book, On Grief and Grieving.

The Scapula Institute

If you follow this blog and Website you know that I am a survivor of what was a catastrophic motor vehicle accident, which resulted in a polytrauma in 2014. I continue to do my best to address each of my injuries in this website (see the various tabs) and blog about my subsequent rehabilitation (see frequently asked questions page for more information about HOPE TBI).
Through this whole process there are injuries that have been discovered which are somewhat subjective, some that are obviously causal, and then those that are absolutely empirical.  The most empirical injuries in a polytrauma are orthopedic injuries. Yet even with the vast knowledge, sacrifice, and dedication of our best orthopedic professionals, there is still more to learn about the body to facilitate repair and healing.  
At The Scapula Institute (St. Paul, MN) that is exactly what they do. Promote wellness, artistically and methodically delve into the seemingly impossible and make miracles happen.
I know this because I am one of their many success stories thanks to Dr. Peter Cole MD and his Trauma team.  Thanks to The Scapula Institute, Regions Hospital, Health Partners and St. Paul Radiology.  All of them. Working together in a cohesive way to affect change and dish up a bit of HOPE for those who have been cast out as hopeless.  I know this first hand after being told by numerous previous traumatologists that I just had to live with my injuries and they could not be fixed.  They were thankfully VERY wrong about my shoulder and the ability to have it fixed.
Dr. Peter Cole, MD is a visionary and progressive man and an artist with his Scalpel.  It is, in honor of his great works, and in true appreciation of having the majority of the use back in my right shoulder, that I (and HOPE TBI – which is essentially me too – lol) endorse The Scapula Institute and their endeavors.
It is rare to fracture your scapula.  In fact I did not just fracture mine, I shattered it.  That gives you a bit of an indication of the sheer force involved with the wreck and how truly blessed I am to still be here to talk about this.
Information taken from  The Scapula Institute  website: 
 “It is important to know that the majority of scapula fractures do not require surgery. The scapula has a rich blood supply, which helps fractures heal quickly. In addition, the surrounding muscles provide support for the bone during the healing process. These two factors can provide a very favorable environment for healing. There are, however, certain categories that may benefit from surgical intervention.
It is estimated that scapula fractures account for less than 1% of all fractures. It truly is a rare injury with few surgeons experienced in the surgical management of severe fracture variants. Please look through our site and then contact us regarding your specific needs. We are one of the world’s top research teams dedicated to all aspects of shoulder girdle trauma.”
The Scapula Institute has developed optimal diagnostic strategies in addition to pioneering advancements in the surgical treatment of complex fractures. “It is our goal to restore normal function to patients who have sustained injuries to the scapula, clavicle and shoulder girdle unit.”
 The Scapula Institute  has an International referral base. So don’t think that your ability to rehabilitate is limited by your location or Country you come from.

Let me know if you have any questions about my experiences.  I still have a long way to go….however, I am here…alive and able to complete my life journey…now with the use of both of my arms; man does it feel good to be able to hug with both arms again!!!

Never give up HOPE.

Injury Summary – Not so Easily Summarized

Inquiring Minds want to know: What were your injuries?

I always wonder if they want a full answer. Sometimes it seems too much to talk about so I just say “polytrauma”.  Sometimes this is sufficient. If not, it will lead to more questions that are almost always more specific.

Believe it or not I finally have most of this list memorized now after 3 years.  However, I still always leave something out when talking to someone and trying to determine what to tell what specialist or what is important to mention or what wasn’t….this was not only overwhelming but impossible.

My family had kept track of injuries as they were discovered and this is their list in addition to mine once we started combining them and matching them with Medical reports we had.  These are the injuries from the 2014 wreck in chronological order of discovery.  The list is great because I just add to it as things are discovered and then just provide the list to my providers when I see them.    It also saves time during the visits from those ultra short times which are never long enough for a polytrauma patient.

Yes I know it is my personal medical information I am putting out here, yet my bravery (or stupidity perhaps) to so openly share all this has helped me learn valuable information from others to get properly treated and helped me acquire a higher index of awareness about my body and the care that is or is not given to it.

If you see something here that pertains to something you have questions about maybe I can answer the questions and help in some small way.  All in all, recovery and rehabilitation is a work in progress.  Not something all diagnosed in an Emergency Room or Ambulance.  Things are always unknown or missed there.

Java Printing

  • Traumatic Brain Injury (approx. one week of amnesia before wreck and 5-6 days after wreck with a few isolated memories in between);
  • Chronic headaches
  • head laceration on forehead from just above R brow into hairline approx. 3 inches
  • moderate right extracranial soft tissue swelling extending to the right periorbital  region, paranasal sinus disease with air-fluid levels throughout multiple paranasal sinuses, fluid levels in maxillary area
  • Whiplash
  • Multiple teeth fractured, partially missing, or damaged which required numerous oral surgeries to correct through 2014 and 2015
  • R scapular neck fracture with glenohumeral subluxation
  • R shattered scapula (comminuted, displaced , and angulated) – [4 surgeries including  ORIF and bone grafting]
  • R 2-11 displaced rib fractures with Flail Chest (ORIF Surgery 5-10 plated); 11th rib still nonunion fracture
  • R pulmonary contusions, pneumothorax, hemothorax
  • R lung node (secondary to lung trauma)
  • T5-10 transverse process nondisplaced fractures, anterior wedging of T6
  • hairline fracture to right pelvis
  • R radial styloid fracture
  • R thigh lacerations status post closure
  • Multiple soft tissue injuries, seatbelt marks, and scrapes over body
  • Endocrine Issues (labs all over the place) Amenorrhea 6 months /Irregularity;
  • Hypothyroidism exacerbated; Hyperparathyroidism developed; Anemia
  • Dizziness, Imbalance, and Headaches; Photophobia, and loud sounds exacerbate symptoms
  • PTSD and Depression (after wreck)
  • small 12 mm lesion at the superior pole of the left kidney has imaging features compatible with a small proteinaceous cyst
  • Diagnosed with Idiopathic Hypersomnia and Insomnia (after 3 sleep studies over 3 months)
  • Stable borderline cardiomegaly
  • Neurogenic Bladder diagnosed with Urodynamic Study
  • R Ovarian Cyst (developed to 3cm and then resolved by itself)
  • MRI of Brain revealed – Chiari 1 Malformation (9mm below foramen)
  • MRI of Spine revealed –C3-C4 with central disc protrusion and minor dural sac effacement; C4-C5 some bulging on the disc with mild dural sac effacement, C6-C7 herniated disc with mild to moderate stenosis (focal herniation of the disc posteriorly with generalized bulging, dural sac effacement, and asymmetrical cord flattening on the left); A 15mm hemangioma at T4; T6 wedging/fracture (this remains fractured in 2016 and unhealed); T5-T6, T6-T7,T8-T9 on multiple levels there was disc dessication, loss of disc  height, and minimal annular bulge; L4-L5, L5-S1 is a minimal annular bulge, and a Schmorl’s node involving the inferior endplate of L4
  • Suprascapular Nerve Palsy
  • Stable 15 cm well-circumscribed nodule posterior inferior of the right thyroid gland,  differential includes parathyroid adenoma
  • Stable subcentimeter thyroid gland nodule and colloid cyst.
  • Stable noncalcified 5 mm right middle lobe nodule that has been stable for over 2 years
  • Acromion Fracture (secondary to reconstructive surgery with bone graft and plating to repair)
  • Anemia persists
  • Restrictive Ventilatory Defect (2 liters O2 added with CPAP at night)
  • Posttraumatic Headache
  • Primary Hypothyroidism with Reverse T3 Syndrome, Secondary Hyperparathyroidism and bowel absorptive problem
  • Mild to Moderate Hearing Loss Left Ear
  • Post Trauma Vision Sydrome (PTVS) and Vision Midline Shift Syndrome
  • Hearing Loss L ear (hearing aid recommended by ENT)

Cinco De Mayo 2016 : Caren Robinson

Cinco De Mayo (May 5th) is the date that is observed to commemorate the Mexican Army’s unlikely victory over French forces at the Battle of Puebla on May 5, 1862.

Much like Cinco De Mayo….my recovery and rehabilitation processes have had numerous UNLIKELY VICTORIES!

So it is ironic, and while tragic – also beautiful that my proposed final surgery on my shoulder/scapula/Acromion process was on May 5, 2016. This was the surgery that would also give me MY independence…..from an orthopedic (arm/shoulder) perspective anyway.

Now…to just wait until my follow-up appointment on June 1st to clear me for the Physical Therapy Regimen (exciting stuff).

I continue to be in awe of Regions Hospital and Health Partners system of patient focused care there in St. Paul, Minnesota. Perhaps because my providers there have been so instrumental in being so responsive and progressive in numerous aspects of my care, and continue to be.

On May 5th I underwent the final surgery on my shoulder (hopefully forever) to plate my Acromion Fracture which had gapped and was not healing. This was an unprecedented surgery for my orthopedic surgeon who has a niche in that field specializing in scapula injuries. He stated that the type of plating and procedure during this surgery for the Acromion Reconstruction nonunion fracture he had not done before, and that this repair was in the top 1-2% of complexities despite having an International referral practice for such injuries.

So I want to take the time to thank the folks involved in my care and surgery while in MN this time around. I tried to take diligent notes. If I missed someone, it was not intentional and I appreciate you just as much.

It all begins with how you are welcomed. When you walk into Regions there is ALWAYS someone there to welcome you and ask if they can help. It makes you feel like they are actually glad you are there…..it’s a great feeling when you are full of anxiety about your visit. It kind of preps you to just go with the flow…so to speak.

To Lonnie and her coworker (nurse that brought me back to preop from waiting room); Aneshtesiologist Dr. Mike Scmid and his nurse Anesthetist Marlene; Pre-op nurses Beckie, and Jackie…..and let’s not forget Lynette F who FINALLY got the IV started successfully; Amelia (who cleaned the surgery site); the Orthopedic Fellow (or Nurse don’t remember) Kyle you guys are all amazing and helped me relax before taking that final plunge to the Operating Room.

To my Trauma team in the Operating Room, including Dr. Peter Cole, THANK YOU for making me better and keeping me alive. I know I am a difficult and complex case. You never gave up on me or dismissed me, or made me feel embarrassed about anything. You are amazing and that is not even a strong enough word to describe your abilities and how much I am truly appreciative.

On the floor the first Nurse I had was named Mike. He had dark beautiful hair and a gentle spirit. He was very attentive along with his PCA Sandra “Sandy” and Bretta the respiratory therapist. I also want to thank Aron for my first meal after surviving surgery. You are a gem. I want to thank Annie for the Aromatherapy and appreciate her professionalism when I did not want her as my nurse due to my January experience with her. I didn’t immediately remember her name…but did her face and voice. Upon reviewing my notes I realized why she was familiar. I want to thank the Charge Nurse of the floor who was a patient listener and got me another Nurse who was awesome to deal with; I want to thank Katie from the lab; and Chian from transport (super nice person who has a relatively thankless job); I also want to thank Amanda, Tim, and Chris from Xray; Dr. Spilseth the Intern who checked in on me in my room; Thank you to Rachel my nurse and her PCA Uniqua; Jennifer from admitting who had the questions about insurance; Kjirsten the Social worker; Brent and Vic from OT and Meghan and Jenny from PT; a thank you to Kidist as well.

I had many wonderful nurses. The list of names was hard to keep track of….I do want to also thank Diana as well along with her PCA Logann (who ran ice packs for me and I am sure was tired of coming in my room); Logann, Dianna, and Patty who replaced Dianna on her shift. I appreciated the rounding from Dr. Hole. I also want to thank Leah and her nurse trainee Sarah and Logann again (yep got me again !); Scott from RT – thank you for checking on my pulse ox and CPAP; Tim and Jessica who did my CT Scan, and Aric from transport…vroom vroom; thank you to my Nurses Netti who took my vitals and said my nurse and pca (Shelly and Lisa) left (without giving a bedside report); thank you to Ketih and Karen; Lynn Charge Nurse and Night Charge Nurse Melissa;

Thank you also to Shelly my nurse and Lisa her PCA (who kept getting Shelly and later Shelly would say that Lisa never got her once and was apologetic) who were late getting me my post op pain meds by over an hour and taught me how much resilience I really have in this tired body.

Thank you to my nurse Melissa and PCA Jonase (spelling might be wrong on this one)…Thank you to Mai, Kaitlyn Schoeck 2nd year Resident and Jocelyn who worked tirelessly to get together all my take home paperwork; Thank you to Marcus Mittelsteadt 2nd year Resident, and the unforgettable Germaine from transport (what a selfless and patient soul) to medical records, and then to the Hotel Bus waiting for us upon departure from Regions after all was said and done.

A special thank you also to Tina Most and the CARE Team as well. 

Dr. Cole, thank you for visiting me in my hospital room on Mother’s Day (and a Sunday no less and your weekend off).  It meant more than you know.  You sat down and explained everything.  You rock!  You are an Orthopedic Genius.  Blessings Abound for you and yours I am sure.

Source: Cinco De Mayo 2016 : Caren Robinson

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

https://hopetbi.com/reviews-and-testimonials/

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Time and Time Again

Well.  Do we have a LOT to catch up on.  No I haven’t dropped off the face of the Earth somewhere.  Though some days I do feel quite invisible…but that is another post entirely.  Trying to keep things real and authentic here and in my mind I have written each update a million times and nothing I felt I could say here matched what was in my head.  So tonight, I was just like….well…to heck with it – just be out there with it.

We miraculously by the skin of out teeth made it to MN.  We still have not been properly or fully reimbursed for our January, February, or March trip.  This has been financially debilitating to us, however, that is not what I want this blog to be focused on.

What I do want to keep the focus on – is the progress and new medical developments that I have encountered, am learning about, and am hoping may help one of you out there in some way.  Perhaps someone you even know or have known or will know at some point and time.

So I admittedly have been depressed.  On February 5, 2016 I had a PT appt at home.  I then had a PCP appt after that.  Well, my husband was helping me get dressed, like he has done so many times before.  I laid my arm on his arm so he could help get my shirt on me and we heard the loudest POP or CRACK I have heard from a body part.  It instantly shot pain up the side of my neck and to my ear.  Then strings of pain across my R chest and into my back some.  It was dreadful.  I couldn’t put my arm down and the pain was IMMENSE.  At my PCP’s office she checked me out and reasoned with me that since it “felt” palpably okay that it was most likely recovery pain.  I told her it didn’t feel right.  I had even called MN that same day on the way to her office to leave a message for Dr. Cole (my orthopedic surgeon). It was on a Friday and since we were going to be in MN on that next week my PCP opted not to xray it.

Well we went…and bottom line is that POP was a BONE being FRACTURED…..a horrible sound I might add.  I had apparently fractured my Acromion process (top of my shoulder).  Now based on what Dr. Cole explained this was rare (from what we read with our online research – only like 7%- (of course this is rare I thought). He had an xray and CT done.  I will say that I have come to realize that xrays have not been incredibly diagnostic for me all along. For some they are better and some they aren’t – me well not so much.

So what did that mean.  Well it was aligned for now and I had to do absolutely nothing with it until my next appointment in March to hopefully give it time to heal.  Start the protocol all over as if I had just gotten out of surgery.  I will say the pain was horrible….but different than shattered pain.  I would also say that I am being very well acquainted with a multitude of pain experiences and each have their own level of challenges and differences.  How I moved before the scapula surgery that would give me some relief here and there did NOT work for this fracture.  I was petrified for it to get separated.  If it did get misaligned that would mean potential surgery…This time on the Acromion.  We were super super cautious and eventually the neck pain, chest pain and such receeded back into the center of the top of my shoulder to remind me just how broken it was OUCH.  But hey… progress is progress. Oh and PT and OT got put on hold.  NO Chance of geting that misaligned.

It was a LONNNNNNNNG several weeks.  We saw Dr. Cole again on March 16th and this is where we learned  That gosh darn fracture hadn’t healed yet and was separated a bit…not by much and he debated just going in to get it repaired and plated while I was there, however it did show bone growth, even though still quite painful and limiting.  My head of course was swimming with information and questions that I didin’t seem to be able to get out the way I wanted – so I just listened – not really getting it yet.  He decided to cancel the April appointment and then set an appointment for May 2016 to give the body time to do what it appeared to be doing ever so slowly – trying to heal itself.  That meant however, no weight bearing at all with my right arm though I could begin again with PT conservatively.

So in May we find out whether I stay for a bit to plate this bad boy and fix it for good, or whether nature has taken its time, but actually healed it properly.  That appointment feels like its lightyears away.

There is actually some awesomely good news in all of this though.  There is a LOT less pain in my scapula.  Like it is miraculous how much he helped me with those January surgeries so I have utter faith in this man – even if I do have to have another surgery I know….like truly know he will make it better.

I am still quite limited but that will just take time and lots of therapy to get my strength back up.  We don’t know how much of the nerve damage will remain, continue to affect things, and all that stuff.  Time will tell.  I will say that it just flooded me like

REALLY MORE BROKEN STUFF!!!!  It was a lot to absorb and focus on in a positive way.  After a while, even though I know things were feeling different in some ways and better…..they were worse in other ways and status quo in yet other ways.  Also fighting with Insurance to get basic quality of life and such should not be a constant fight and battle.  This just adds to the stress and I truly believe slows the healing process because now you are always focused on that next ball getting dropped by them….it’s distracting, annoying, and is something that needs reformed for sure. That’s my soapbox on that though.

So here we go.  Working hard to stay afloat.  Not just financially but in the dynamics of our relationships with each other in the house.  The trips are hard on my body and my brain.  I think I am going to end up with the back pain for life.  The headaches are crazy consistently unrelenting and so mch a part of me now that I don’t remember when I last never had one.

I feel so flooded and overwhelmed after I get home fro travelling that  I literally crash out and sleep like I haven’t had sleep in days.  Going each way usually takes me a few days to play catch up with my already seemingly dulled self.  There is so MUCH stimulation that I was never aware that I was aware of before.  Travelling def makes a difference.  I have totally decided that travelling by train is much less intense than by Plane.  Still tons of people and still tons of noise and activity, but we get our own room which helps quite a bit with trying to get a grip…..and it is way more economical.

We keep moving forward….making impossible choices….going with the flow Time and time again. The future uncertain, but glad that I am still here to have a future to be uncertain about…..

So sorry for the delayed update – more posts to come…..just been battling exhaustion, pain, fatigue, and a good dose of BLAH!

Article – Time and Time Again by Caren Robinson

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

https://hopetbi.com/reviews-and-testimonials/

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Scalpel At The Cross

This is how amazing my Orthopedic Surgeon from MN and his team’s are. He is the one who jus completed two surgeries on my scapula and reconstructed it with a bone graft.

They truly care about their patients; and I am a growing strong advocate of their work and care as a whole both State Side and Away….

Minnesota technology team helps St. Paul surgeon’s Peru mission

 

This is the charity Dr. Cole and his wife started:

Scalpel-Logo
Scalpel at the Cross

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

https://hopetbi.com/reviews-and-testimonials/

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Two Surgeries Completed January 2016

Hello. In MN January 11-24, 2016. It has taken me this long to get my energy up enough to type an update…..

I apologize that it has taken me so long to come to give all of you an update since my surgeries. I also must apologize for any horrible writing or spelling…I am still on the mend. First I want to sayis HALLELUJAH i AM ALIVE!!!

This has been quite the experience and it will continue to be. More posts will follow this one, however for this one I want to address some special folks. I tried to keep track the best I could with my notes. I truly apologize if I miss your name.

Specifically to My Primary Care Physician and her office staff; my Counselor, Mercy Medical Angels (especially Steve Craven), Barry and Caryn Mehler (dear Friends), Mary Herndon-Williams (sister from another mother), Priscilla Benavides and her husband (an old soul friend), Karleen Robinson (my mother-in-law), Carly Kissinger ( a teacher),  and Samantha Rogers (Trauma Survivor), and the Rabbi from Ahavas Israel in Grand Rapids, MI; and Unity Center for Spiritual Growth in Ada, MI; United Airlines and its many wonderful staff and crew, Gerald R Ford Airport out of Grand Rapids, MI to Chicago O’Hare (in nowhere else but Chicago, IL) to Minneapolis St. Paul. Minnesota and those of you who pushed my wheelchair – THANK YOU FOR GETTING ME THERE SAFELY. Without your help and support my arrival would not have been possible. To the gentlemen in 1st class who gave up your seat for me because I looked so uncomfortable in coach from Chicago to St. Paul – mere words are not enough to give you my deepest gratitude. You are a gem.

When we arrived. An enormous thank you to Yellow Cab, Embassy Suites, UBER, SuperShuttle, the hospital shuttles, delivery folks, and the beautiful people of St. Paul who made a very scary and lonely time not so scary and not so painful for my husband and myself.  Thank you Unity in the Heart Church in St Paul, MN.

THE GOOD STUFF – MEDICALLY LAIDEN

To my EMG team and Dr. Olson at Regions hospital, the Radiology Department, the lab, Medical Records and the Welcome staff – thank you for being quick and efficient and accommodating.

Veronica the bone specialist and Dr. Pegrow from Infectious Diseases – you guys are amazing and taught us a lot. Thank you Charge Nurses and Patient Relations and for the Alternative Medicine that compliments the Allopathic side of things. This made a world of difference for me and helped manage my fear, anxiety, and pain..

For my miraculous Dream Team with Health Partners, Regions Hospital, my Orthopaedic surgeon Dr. Peter Cole (our dedicated man of God and Science)  who made all this possible for so many like me AND ME, Tricia Corbo, Jenny, Tina Most, his two fellows Dr. Hesse and Dr. Diskin, the Anesthetist and the Nurse Anesthetist and all the office and team members whose names I didn’t write down, don’t remember or I don’t know in the office, this process and in the Operating Room – thank you for helping fix me and for keeping me alive to face another day. Your hands are truly the extension of the hands of God himself and I value and am grateful for each and every one of you.

For the floor staff thank you to Dr. Campbell (you were a sheer delight), Dr Brenner (miss that beautiful long hair 🙂 ty for your compassion), Dr. Mehta (kind eyes and soft smile); Brigid PT and Lena OT and lets not forget the folks that make the Doctor’s work look flawless and managed my pain and care in a more extended way – my NURSES Alena, Stella, Annabelle, Megan, Jessie, Abbey, Kasie, Niki Z (or2),Rachel, Rin, Rose, Leann, Brian and Kristy – Annie I forgive you for missing my meds for the whole night….it was a good lesson for me not to miss my scheduled doses – even good comes from mistakes…..forgive yourself and move on.

Also my Nursing Assistants they call PCA’s in MN: Fey, Hanna, Sandi Nettle, Laura, Dominique, Lisa, Mollie, Crystal, Lindsay, Nalee and any others I may have missed while sleeping or being to groggy to write. You were my hands when I couldn’t and my extended family while away.

To my husband Rick Robinson and soulmate and best friend – thank you for braving the trip, this uncertain future, and for sacrificing so much of yourself and your time, and your sleep for me. I know it takes so much from you and you deserve more than I could ever begin to repay you. I love you and value every moment with you. Thank you for believing in me and not doubting me all along through this whole shabang.

To my family who waited for me at home, for my darling children, for those who lovingly cared for my children while Rick and I were gone…..Thank you and I appreciate the support , love, and prayers.

I am home dear ones I am home! I am so eternally grateful and not last or least, but thank you Heavenly Father for granting me purpose in this world and allowing me to carry on another day to tell this story and continue to recover.

Follow up appointments in MN with Dr. Cole on February 10, 2016, then at 6 week mark – then 3 months, 6 months, 9, months, and 12 months. We are grateful for these opportunities to watch miracles abound and grow.

Two Surgeries Completed January 2016 – Determined We Are

Surgery Update 2016

The two surgeries are reconstructive procedures for the nonunion scapula fractures (shattered unhealed scapula I have).  The surgeon has done many of these types of surgeries involving complications of scapular fractures, nonunions, malunions, delayed treatments, etc.

The current proposed plan is a 2 stage surgery. The first will involve cleaning out the nonunion site and obtaining bone and soft tissue cultures to be sent for bacterial analysis. He will then place antibiotic beads and then after 5 days in the hospital he will then do the grafting procedure from the iliac crest (pelvis).  Waiting that duratino insures a steril environment for him to perform the bone grafting procedure and place the foreign body implants.  The second surgery also includes correction of the instability and the malalignment of my shoulder blade. Stainless steel plates and screws will be used in addition to the bone grafting.

The track record for these surgeries is well documented in the literature, of clinical research coming from his practice. He feels the outcome is estimated to be between good and excellent regarding this injury.

Afterwards there will be about 3 months or so of Physical and Occupational Therapy.

I am looking forward to having use back of my right arm with full range of motion. I am looking forward to managing this ongoing debilitating pain and miserable aura.

Godspeed to the hands of the surgeon and his whole team that are making this possible.  Godspeed to my husband who will be by my side throughout this ordeal.  We have to travel out of the State as Michigan – as Michigan State does not have any surgeons who do this specialized procedure.  The kids are already getting anxious and prepared.  Rick and I are stilll trying to wrap up loose ends before we have to go.

Intense stuff, however opportunities full of HOPE.  Help One Person Excel – To Be Independent.

Thank you all for reading this, being a support and following our process.  Please feel free to leave comments below, or share this post on your social media.

Blessings Always.

Caren Robinson – Polytrauma Survivor

TimeOut MN

(Note:  The picture on this post is the actual hospital where I will be having my surgery.  They implement several safety steps during the surgery process – this is very encouraging to me)

 

Pain Clinic

Today I have my first appointment with a Pain Clinic.  I am not even sure what to expect.  However, will let you know how it goes.

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

https://hopetbi.com/reviews-and-testimonials/

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.