Thirty-nine-year-old Jennifer Saake (founder, Hannah's Prayer Ministries), experienced 6 strokes via vertebral dissection at a chiropractic office, including brain stem and cerebellum bleeds. Jenni remained hospitalized until nearly 2 months and was not expected to live (near death experience) nor recover, but if she even survived, she was slated to live out her days in a nursing home or, best case, to maybe come home but wheelchair-bound and needing 24-hour care. At 5 years, 7 months God showed how He was writing her story from the beginning.

Jenni is currently writing more books and stays active on both Facebook and Pinterest. Here is her resume.

Since Jenni's chiropractor carried no insurance and moved out of the country soon after the accident (thus avoiding any legal or financial consequences), if you would like to help contribute to the Saake (pronounced like the two small words, say and key) family's massive financial needs (medical expenses alone are estimated to cost between $1- and $1.5- Million in Jenni's lifetime), please visit Jennifer Saake's Stroke Survivor GoFundMe Page. (This support information has been added in direct response to several reader requests.) The Saakes sincerely thank you for your prayers and if God prompts and equips you to send any monetary assistance as well, this is a significant added blessing.

Wednesday, August 28, 2013

All In My Head

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There was a lot I didn't know about strokes until living this reality. The little I thought I knew was mostly mistaken.



FAST Signs of possible Stroke. Act fast! - From Pinterest
I guess this can be said of almost anything we don't have direct knowledge or experience. I know it was true of me for infertility, for miscarriage, for ME/CFS.


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Even though I offer support to women facing stillbirth or infant death or other kinds of chronic illnesses, I may know more than average about these conditions because I immerse myself in these worlds, but I will be the first to tell you that my experiences (and by extension, level of comfort and understanding) are, at best, only second-hand. I have never lived it. I just cannot actually know!

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About strokes, I believed the myth that they only happened to "old people." This just simply isn't true. Sure, I had heard of a few cases of infant strokes, but typically for micro-preemies, infants born so terribly early that they were not prepared for life outside the womb, thus had brain bleeds. But I've since learned that even healthy, full-term babies can stroke, both in and outside of the womb. Children can have strokes. Teens can suffer from strokes. Young adults, in their 20s and 30s. Middle agers in their 40s and 50s.

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I honestly never gave much thought to strokes, one way or the other. I would hear of someone in their 80s or 90s, who died from a stroke, but I just thought of it as another cause for elder deaths. I would hear of someone in their 60s or 70s who was hospitalized from a stroke, then either seemed to me to soon be better and back to life or maybe in a wheel chair and non-verbal after that. Again, something I never really even thought about trying to really understand. Strokes simply happened, but they weren't part of my world.

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I feel like I need to preface the rest of this post by clarifying, once again, that I am not a medical professional and have no medical training, whatsoever. This information is based upon personal patient research and represents only what I understand of these facts, to the best of my ability.

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There are two primary kinds of strokes, both Ischemic stroke (about 80% of strokes, often caused by a blood clot or plaque blocking flow to an area of the brain) and Hemorrhagic stroke (usually cased by a weakness or budge in the artery leading to, or even within vessels of the brain itself, in my case, caused by a tear in the artery). Stroke is stroke, so it really doesn't matter so much what kind a person had. It is lack of oxygen to that part of the brain, however it happens. For what it is worth, Ischemic stroke is the stroke caused by lack of blood flow (suffocation) to part of the brain tissues while hemorrhage stroke is stroke caused by excessive bleeding in the brain. To the best of my understanding, I initially had two massive Hemorrhagic brain bleeds when my artery was shredded, followed by four (relatively) smaller Ischemic strokes as my artery tried to heal over those next few weeks and kept throwing clots (blocking blood flow to different lobes of my brain) until two surgical interventions (similar to the picture in the link, but using a heart sent basically to sew the artery back together, so not this picture really, but it was the closest illustration I could find) repaired the artery enough to no longer throw new clots.


Several years before my stroke, I met Kate online, though small business networking. I read her book and thought her story was amazing, simply because her circumstances with stroke as a young mom seemed so unheard of (to me, anyway). 

Later I met my friend Becky, who came to my church for a few years before moving cross country. If she told me she was a stroke survivor, the reality never penetrated to my heart until she told me about her life-saving surgery that went arey once again, after my own strokes. I thought all her deficits were the result of a car accident that caused traumatic brain injury (and they ultimately were, I just didn't understand that stroke was part of the overall picture). All the years I knew her in person, I didn't realize that the accident had precipitated a stroke as well.

Then several months before my strokes, the blogging community was abuzz with news about Joanne, The Simple Wife,  and her stroke. I read, I prayed, I felt sad, then I probably never thought much of her circumstances again. I didn't know her, it wasn't happening to me, and I had no idea that her life, as she had always known it, was forever changed! I figured her family would go through a few rough weeks, maybe months, and then life would move on, this season behind.

But as October rolled into November, that fall of 2011, and I became more alert and aware of my own circumstances, the realities of all these brave, strong women, and their families, slowly began to clarify for me. (Brave too are Kendra and Katherine and Denise and Ruth and Jenny and Art and The Stroke Coffee House gang and so many other amazing folks I have met through this process. I don't want you to think I'm leaving you out, I simply was reflecting on my own, limited, pre-stoke exposure to the stroke world!) Even so, I had yet to fully begin to grasp what stroke actually meant for the long term. As I told my husband just a few months ago, when I heard of someone being in a car accident or even something like that which I could pretty reasonably relate to, I always thought life returned to "normal" within weeks or months.

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It never even crossed my mind, except perhaps in severe burns or paraplegia or something like that, that the weekly appointments and therapies and daily challenges of living would still be so demanding even years down the line! So if I never understood that in situations I knew, like accidents, even where people had to relearn to walk or were forever confined to wheels thereafter, it certainly never occurred to me in lesser known (to me) trials, like strokes!
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OK, so that's my take on the physical reality, but what of the invisible changes in our worlds, those that you likely don't see (at all, or at least not nearly on the level of our behind-closed-doors realities)? Sure the limps or wheelchairs or slurred voices or crippled arms or facial droops or other telltale signs are often pretty obvious, but I bet nearly any survivor reading this page would agree that those are not our biggest injuries. There are the emotional and spiritual, likely the two biggest area that are forever changed and where so much healing needs to come. But I'm specifically talking brain injury now.
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For many (most?) who experience brain injury from serious strokes, I think their damage would be classified under the heading of ABI or acquired brain injury, as it is often the result of a slow process that builds to the point of crisis. If I understand correctly (please correct me if I am wrong!) the cause of the bleed or clot develops over time, such as plaque build up in the arteries, birth defects (often of the heart that aren't realized for decades, or even of the cells or structure within the brain itself), a slowly progressive illness, medications, or other related circumstances where a stroke is eventually "acquired."
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For a few of us, like my friend Becky in her car accident, several strokie friends who were victims of violent assaults, or my own case, there was sudden, physical trauma that brought about brain injury, thus classifying our strokes as TBI or traumatic brain injury.

It really doesn't matter how you classify it (and stroke is something I never thought to classify as "brain injury" at all, but unless you are talking some cases of only very "transient" symptoms and only temporary brain bruising, a stroke is, by definition, brain cell death of area deprived of oxygen), but either the result of trauma or an acquired condition, a stroke is still brain injury! Different causes, same end result! We are working to rewire around deaded parts of the brain, but baring a direct healing from God or the development of new kinds of medication (as is the hope for the drug study I participated in last fall), there is currently no way to actually rebuild or recover the areas of the brain that have been lost.

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So I mentioned that my strokes are the result of TBI. This is absolutely true for the first two strokes, that happened at the moment of injury. The case can be made that the next four were also TBI, in the sense that the were ultimately still a result of the original trauma. But because they unfolded over the next few weeks and actually came about from the original injury throwing clots as it was attempting to, but unable to heal itself without two surgeries, I wonder if that doesn't make the later four all ABI then? Still I can be absolutely truthful in saying I have at least six distinct clusters of dead brain cells, all ultimately resulting from a traumatic injury. How you want to technically divide them up is up for debate, but the bottom line is that it is all brain injury.

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I want to come back to this post and edit in information on right/left brain stroke impacts and on various areas of the brain and their function, but I've been working on this, off and on, all day and I need to go to bed now!

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Edited on Sept 2, 2013 to add, I thought I had already added the additional information on brain function last week, but somehow I didn't manage to get the new information here, but just pulled this down off my website back into my drafts for the weekend instead, so I'll try again...


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I had research and written out all kinds of additional information and research illustrations and was going to add a ton of new material here. Then I found it all explained more concisely in this eight minute video, so if you truly want to take the time to understand mechanism of different kinds of strokes, this video does a much better job than I was doing!


 I had already been giving this topic (left/right) a ton of though before Kendra shared some unique frustrations of a left hemisphere stroke.
(Picture from web search.)

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Additional editing, Sept. 12, 2013:
 
So I thought I should share a little more about brain function here. You can type in the names of any of these regions of the brain structure map pictured here into a search engine and find much more detail, but I thought it might help to know a little bit more about where I stroked and some of the effects (as well as the surprisingly not-so-impacted areas).
 
My biggest two strokes we in my Brain Stem and Cerebellum. The brainstem is responsible for basic reflex and life support. I was on a feeding tube, had a machine breathing for me, spent weeks with a urinary caterer (and many, many more months relearning full bowl and bladder control, something that I have mostly mastered now, but still not 100% even yet) and needed similar assistance in other every day life functions.
 
The Cerebellum, also called the "Little Brain" or the "Brain's Brain," is similarly critical for basic function. It is the part of the brain that, when a person becomes so inebriated you might describe them as "falling-down-drunk," that this is what is actually responsible for their lack of physical control due to temporary brain impairment. Many things like speech clarity (slurring), balance, reflexive  reactions, short term memory and more are housed here.
 
The vast majority of my damage was to the right side of my brain (impact left side of my body), though there was some damage, I believe from the two bleeds, that also suffocated some cells on the left side of my brain. While most people can reference their "stroked side" and "good side" of their bodies, and I often think like this as well because one side is SO MUCH more severely injured than the other, truly, I don't have a "good side," only a "more severely" and "less severely" stroked sides.
 
 
After my first two strokes, several friends commented on how well I was talking. Yes, my words were slurred and I occasionally struggled to recall certain words, but overall, my speech was not heavily impaired. Doctors had explained this to me in that many strokes (the ones we as a society are more familure with in general), tend to happen nearer to surface of the brain. As mine were mostly so very deep within my brain, there was little impact on my speech or language ability. I have some language processing issues, but the speech centers were, thankfully, relatively unscathed. I talked about my zebra-type-strokes a bit last year.
 
My last four, clot-induced, "smaller" strokes were all in "various lobes" (the most specific description a doctor ever gave me). I do know that I lost much more use of my left hand (I feel this was the cause of most of my left arm pain and loss of function and my shoulder troubles, though my mom tells me I had already lost a significant amount of left arm function with the initial strokes - I just know I could grasp and tear  toilet paper with my left hand before the final three strokes and this was my first sign that morning that something significantly wrong had occurred overnight) with my final three strokes (all happened overnight the same night) and my hearing loss, that I believe likely stemmed from one of the first two strokes, but perhaps was made worse with the additional damage, was finally tested and definitively confirmed after the final three strokes as well.
 

 
My vision blurriness, vision doubling and profoundly paralyzed eye were all results of one of the first two strokes. The inability to walk (that I started regaining during my weeks of rehab, maybe taking my first tottering and assisted step around 5 or 6 weeks, and was doing mostly without the walker (just a cane) at about 10 months) we lost with the very first two strokes. 
 
All the jaw and face pain may have come from my third stroke, my first clot. This still seems to be tied into my hearing loss, so possibly this happened at the same original injury, though I am told I failed my very first hearing test a few weeks earlier, up in ICU (I had no memory of having had any prior tests). It is possible the A-TN and TMJ pain were already there from the first two as I do not have a real clear recollection of timeline and only remember what room I was in when I first became aware of this pain. It is the room where I experienced my third stroke, but also the same room where I really started to grasp and process the concerns and realities of my first two strokes, so it is hard to say if this was already an issue I became aware of prior to the third stroke or was a direct result of it.
 



 
 
Something that has been most pleasantly surprising for me is that I have very little facial paralysis. In fact, I notice it when I study my face, but looking at me, you might not even be able to tell! I guess the only things that account for this are God's plan and the very specific areas of my brain that were (and were not) wiped out. That a stroke always causes facial drooping was another misconception I had about strokes. I guess this is why there are three different areas that must ALL be evaluated when trying to decide if you should call 911 for a person, if both sides of their face remain totally even, if they can equally lift and hold both arms outstretched at chest level, and if they are processing language well and can clearly repeat words and phrases you give them without slurring, hesitation, difficulty, or confusion.
 
One thing I have learned a lot about over these past couple years is "plasticity" of the brain, or the brain's ability to work on remolding and rewiring itself, to heal and retrain and learn new things. They tell me that the younger you are, the more quickly and thoroughly this can happen. One example is this little girl who had half of her brain surgically removed and is doing amazingly well now! Another is this guy who lost much everyday understanding but gained artistic genius - I  totally relate to the description that "he can't not be making art," although for me it is writing, as my mom has actually described me the same way, that "she can't not write" long before we ever encounter this story. I love his description about how engaging in his passion/compulsion feel as if he is transcending time and reality as I have also described my writing world this way! 
 
The older you get, the last "plastic" your brain becomes. The recovery journey is one of the few times it is a significant plus to be a younger stroke survivor! I was told in the hospital that because I was under 50, therapy had a greater chance of helping me than if I were a decade or two older. Actually, in brain years, I guess even an additional year would have been to my disadvantage.
 



7 comments:

  1. Your thinker is great! The obeyer for your arms and legs is a bit unfit right now, but we are working on that. Love you, Sweetie!

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  2. Before I had a stroke I never thought of it to do with the brain. I thought it was heart related. On arrival at the hospital a nurse said they would be sending me to have my brain scanned and I thought he was joking! I had an Ischemic stroke.

    This video is good at explaining how a stroke occurs:

    http://www.nhs.uk/video/pages/strokeanimation.aspx

    I hope it's ok to post the link here, if not feel free to move it.

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    1. Feel free to share links any time, Ruth. :) And thank you!

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  3. Hi, my name is Jen. I had a stroke aonth before my 25th birthday. My stroke was due to a brain condition called Moyamoya disease. I had 2 brain surgeries within 5 days apart due to complications of another stroke. As a result I had sever left side hemiparysis and now I've lost the function of my left hand. But as you've said on top my physical deficit is the least of my worries. Right now I'm suffering emotionally. I cry all them time. Kind of wondering does it get better? Sorry to just randomly post on your wall, I haven't spoken to other people who are going through the same things I'm going through. Although my family is very supportive they don't seem to understand the difficulties I face physically and emotionally on the daily.. I guess this is my way of reaching out for some support from fellow survivors.

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    1. Hi Jen. I have no idea if you will ever see this. I tried to figure out a way to reply directly and finally had to just answer here in blog comments. Hoping blogger will notify you of this reply!
      So yes, things do get much BETTER :) but my emotions are still far from NORMAL. Maybe it will help you and your family to read this other (shorter) article I wrote - http://givenmeathorn.blogspot.com/2013/07/pseudobulbar-affect-pba.html

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