Friday, December 11, 2015

Cardiologist appointment and Vagus nerve Damage


I had my cardiologist appointment last week. I was looking forward to that one, because I read a lot about Tachycardia in the past weeks, and most people get what is called a "cardiac ablation", which is a non invasive procedure. It is very effective to stop the tachycardia, and make it possible to do physical activities that rises your heart rate again, without all the nasty symptoms that a very fast heartbeat can gives you. 

I was hopeful that I would be offered that procedure, and other possible ones, and not to worry again about getting all dizzy, nauseous, confused and out of balance, and the occasional black out, whenever I do something that rises my heart rate, which if for me pretty much anything that involves moving around. Feeling like this makes it very hard to feel "normal". BUT I can move around right? So that's a blessing 

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I won't hide it from you, it has been a depressive week for me, because he told me I am not a candidate for that. He says my tachycardia is caused by the vagus nerve damage and not the heart itself. "The tests results (for the heart) are in the normal range, but the vagus nerve that makes it work is damaged and there is no such thing as regrowing a vagus nerve, because if there was such thing, i'd do it for you". That's exactly what he told me. He then patted me on the shoulder and said "Hang in there, i know it sucks". There is no word for the "condition" other than "Vagus nerve damage". Tachycardia is "just" one of the symptoms. Each symptoms the vagus nerve damage brings have their own set of symptoms, so all I feel is a combination of different things, not just the heart. Of course, vagus nerve damage is also known to give you a very slow metabolism, as if I didnt notice! It's ok... he was very sympathetic and said "I am sorry I can't help you. You are so young and sweet, and that really really sucks" *another pat on the back*

However, he wanted to double my dose of Metropolol, so I would take one in the morning too, and not just when I go to bed. I told him it makes me so tired, dizzy and sick. I could barely drive when I took it one morning after I forgot my morning dose, and had to pull over. I have 24/7 horrible heartburn too with this, and hopefully I can't overdose on Tums, because I go thru a lot. hahaha I don't see the point of taking a medicine that gives me the same outcome of what a "tachycardia attack" gives me, so we compromised and I take a full one at night, and half of one in the morning. I'm supposed to call him in 2 weeks and let him know how that works. So far, the half dose in the morning does make me feel sick and light headed, but not as bad as a full dose.

However, I certainly have been having less of those "tachycardia attacks" since I am on the medicine, and my heart rate still elevates just as fast with little effort, but my heart is not constantly pounding and beating fast at rest. It still does if I am cleaning my house, or walking my dogs, or carrying a laundry basket up my stairs, or do anything too fast, like emptying my dishwasher and putting clothes away; normal things I feel I should be able to do, but my heart doesnt "hurt" every time.

Its just very difficult to "feel" like "you" can do something, you WANT to do something, you have the motivation and the desire, but you try and BOOM, realize that you can't. Its like a slap in the face, or being kept in chains. That does sound dramatic, but that's how it feels. I am pretty sure that's how we feel, and more, at 90 years old too! Our mind doesn't change... our body does! It's like aging 30 years before your time I suppose. 

Then I think, what job am I supposed to look for if I can't work with numbers, I can't focus, I can't hear people talk in a noisy environment, I get dizzy when there are lots of noise. I wear ears plugs in stores, malls etc. I fall over when I bend over or do repetitive movements. I get very confused and forget things and would make mistakes in a work environment. What I am suppose to do?? Greet at Walmart? I know I will find something... but my worries are not imaginary! Oh I know, I'll just dress as a cow in front of Chick-Fill-A. I can make cow noises pretty accurate! Now if i dress as a milking cow, that will really be accurate 

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Anyway, I rarely vent. I am not a complainer, but sometimes, I need to. I should be able to. I should be able to share my struggles sometimes and have someone listen. When people ask me how I am doing, I sincerely answer that I am good, because in the grand scheme of things, I am!! I am VERY thankful!! I don't focus on the hardships at all. But I can't pretend that they are not there. I know I am very blessed to be here and be doing so well with no major deficits like paralysis etc, but its been very depressing to feel like I can't do anything. Some days I feel like I am a prisoner in my own mind, and most days I feel like I am a prisoner in my own body. Then I feel guilty for feeling that way, because it was supposed to be a lot worse, and a lot of people do have it much worse! But I certainly don't ever look down on friends for sharing their struggles with me! It does not even cross my mind! So why should mine be kicked to the side just because I am not in a nursing home?! I AM a very honest person. But people don't really want to hear about struggles. They don't mean to brush you off on purpose, but they do, so what's the point. I am not saying this in a negative way. It is just what it is, and all of us probably do it to others.. we just try to make others feel better by avoiding saying things like "that really sucks" or "i am so sorry"... but you know what, people need to hear that!! We just need understanding and compassion once in a while. Big difference than someone who is always complaining and wants pity. Yuck!

So my "directives" from the cardiologist other than "hang in there", are to take my meds and ever forget them. Deal with my "attacks" by slowing down, pulling over, or whatever else I have learned to do. Find my triggers (which are physical activities, needing sleep, being sick and any stress) and avoid those triggers the best I can. Also to make sure I don't hurt myself when I fall or pass out. hahahaha I told him :

"I dont stress that easy" and he said "We stress a lot more than we realize. You may not have the "emotion" of feeling stressed, but worries, fears, depression, any sense of urgency, will create send stress signal to your brain. So, I told him "I may as well be a robot!!"  Stress, overdoing, lack of sleep, are literally killers.

However I never really hurt myself, because I have a small window or warning and I was always good to use it. I am pretty sure it would only be a very bad situation if I HAD to run and keep running for some reason, or just couldn't stop what I am doing. I have always been able to stop what I was doing.

So, all in all, if you cut all that rambling, the heart is healthy, but the nerve that connects it to the brain is not. The heart needs that nerve to work correctly, and because that nerve can't be replaced or fixed, it is what it is. There is no cure, just management. I just have to do what I can not to damage it more.

Thanks for letting me share my struggles. I'll get over it pretty quickly, as I always do.





Monday, September 21, 2015

Prayer request!

I received a message last night from a woman looking for some answers and hope for her husband, Teimor, who had a CalMal removed from his brainstem on August 27th. Dr.Spetzler performed the surgery. He is still at St-Joseph and will start Rehab tomorrow. Teimor cannot breathe on his own, eat, or talk. He is completely dependent for his care. Progresses has been slow and it is a very scary time! His wife is with him in Arizona, but they have 2 little girls waiting back home. I have been sharing my journey and the one of others with them to bring them some hope and encouragements, but if you could please keep them in your thoughts and prayers, and also share your own story in the comment section to encourage them, that would be so wonderful!! heart emoticon 

Friday, September 4, 2015

Cardiologist update

I finally saw a Cardiologist yesterday!  My neurologist did tell me a while ago that he wanted me to go see a Cardiologist based on some of the things I experience.

I never really saw the need to follow up with one for different reasons:

1) I kinda got used to doctors come in a room, look down at my chart, look up at me and say:

 "You had brainstem surgery? Wow you look good, that's amazing."
Following with me sharing a few things that bothers me, and be met with "Well, you could of been totally disabled, or a vegetable! "

I know that!!  I am SO grateful that my outcome was no where as bad as I was told it was going to be!  I will never take that for granted.  Therefore, the issues, aches, and struggles I do have, as difficult as they may be, remind me of how much worse it could of been... so I don't feel the need to go see a specialist to access every ones of these problems.



2) I hate complaining about things that do not have solutions!

#2 is what I told him the reason was, when he came in and asked:  "What took you so long? Your heart rate is almost 100 at rest, you must really feel a lot of discomforts!"

I said : "well, I don't like focusing and complaining on things that just are and do not have a solution, so I am trying to move on."   He continued: "What if I tell you that there are solutions, and not only stop putting yourself at risk, but  you can feel better?"

So I told him I would love to hear what is there to do!  I was expecting to hear "Nah, you're good, you are lucky, you are good. Keep doing your best. This is it." So for him to tell me there are things that could help me, i was surprised.  There are lots of people out there dealing with a fast heart beat, no matter what brought it on.  He told me that the number one reason is usually people not taking good care of themselves, but in my case, there was nothing I could do to make it stop without any medical help, because I am not causing it to myself, but acquired out of my control.


He explained to me that I have Vagus nerve damage that were brought on by both the brain hemorrhages and the surgery. The Vagus nerve is actually the longest nerve in the body. It starts at the brainstem, and goes all the way down behind the vocal cords, to the heart, and other organs, and end in the digestive system.

Instead of explaining what the vagus nerve does, and what kind of problems it creates once damaged, here is some information


""The vagus nerve innervates critical organs, such as the heart and lungs, making vagus nerve disorders serious. The symptoms of vagus nerve disorder can include cardiac, gastrointestinal, and sensory problems.  Because this nerve runs from the brain to the abdomen, damage can cause a wide number of symptoms. From difficulty swallowing, some may even experience diminished gag reflex or have a chocking sensation when eating or drinking. Another symptom is a hoarse voice or difficulty controlling the tongue, which can cause slur speech.  It can also cause hearing loss, incontinence, cardiovascular and digestive problems.""


However, I don't think mine are "serious". Yet anyway. haha It sure has not stopped me from living my life!  Again, I am very blessed that my vagus nerve was not damaged to the point of losing my voice, or losing control of my bowels. Ew, that must be awful!   So it may say "making vagus nerve disorders serious", because yes, it can be very serious, but as for me, i guess the most serious, is that my heart was affected more than I even knew.  

The condition of having a fast heart beat is Tachycardia 



""A rapid heartbeat, also called tachycardia, is a condition in which the heart is beating fast, generally more than 100 beats per minute for an adult. A rapid heartbeat can be normal, or it can result from a disease, disorder or other harmful condition.  The number of times the heart beats per minute is called the heart rate. The rate of these contractions is determined by nerve impulses and hormones in the blood. The rate at which your heart beats varies continuously, rising and falling in response to many conditions and situations. For example, your heart rate will rise during strenuous activity in order to ensure that all the cells of the body receive sufficient amounts of oxygen-rich blood. The heartbeat may also become faster in response to stressful situations or when you are in pain. Your heartbeat is normally lower during periods of relaxation or sleep. The average adult resting heart rate falls within the range of 60 to 80 beats per minute.  Treatment of an abnormally rapid heartbeat varies depending on the specific type of underlying heart rhythm, its underlying cause, your age and medical history, and other factors.""

So, the cardiologist put me on some medicine right away that slows down the heart rate. Its a pretty common medicine, but I forget the name.  I so dont like taking medicine.  I also will have a echo and stress test September 18th.   He wants to try the medicine, and depending on how the tests goes, and how well my heart reacts to the medicine, and if it does not cause too many problems, it may be all I need. He said there are surgeries procedures also, but i would think that if I have lived with this "new heart" for 2.5 years and it has not really hurt me other than making me feel like Sh..Poo, I wont need surgery... but I
 really don't know to what extend my heart needs "help" because I simply didn't push it that far.  "That far" is not much at all... I cant do much at all before I start feeling like the world is spinning, feel like I cant breathe and if I don't stop what I am doing right now, I will pass out. SO, I just work slow... I don't do anything strenuous physically. I only have to walk fast for less than 20 seconds to feel my heart racing so hard I can see the beats thru my chest, cant catch my breath, and just feel absolutely awful. So yes, I probably should of seen a doctor before I did, but I dealt with so many other things, and this was just "something else" that I had to deal with that became normal to me. I didn't think it was the sign of some issue that needed medical attention.  

Not much makes me nervous anymore... but the stress test kind of scare me, because I know how little I can do.  I realize now that if I would of pushed myself further, but somehow my guts told me not to, I could of harm myself. A few times, I wanted to finish a house chores and kept going more than I should of. My heart was beating so fast I couldn't breathe. Just going up to stairs will give me a heartbeat at 160 BPM.  I really don't need much physical efforts at all to feel horrible. 

If the medicine is not enough, they are different procedures to help a fast heart beat, like Defibrillators,  Vagus nerve Simulator, or Heart Ablation. 


So, this is my cardiologist update!  :)  I have to be honest and say I am somewhat excited at the prospect of this issue being fixed and get to feel better!   I will never feel the way I did before all of this, but any improvement is a big improvement!

So, Cheer my friends! To your heart's content! 






  




Saturday, August 15, 2015

Acceptance versus Hope



One of my last post was about my neuro psychology testing.  After this was all done, I was referred to go see a Psychologist in the same building as the neuro psychologist. I have been seeing her on average of once a week for the past 3 months.  She is lovely, young, pretty, soft spoken, and truly listens.  I know I know, that is what psychologists are supposed to do right? but somehow, I think she really does care.  She is someone that I would be friend with if she was my neighbor or/and was "professionally allowed" to be my friend.  Its been very helpful to me, even if it seems that I do most of the talking. Haha Its a good way to "think out loud" and than receive honest feedback. She asks questions. Very good questions. Questions you never think of asking yourself.  Then I answer and have revelations. Hahahaha    It is especially nice to be able to talk to someone about issues that I have with no fears of being told that I am crazy. Someone who really is "neutral" on the issues.

The main reason why I started seeing her, is to be able to untangle all that mess created by this condition, the surgery, the recovery, the new normal, who I was, who I am now, and who I want to be.  However, I believe that any of my issues are mine, and mine only. My responsibility. I will not spend the rest of my life blaming this surgery for the things that I truly struggle with.  I want her to help me accept them, and feel ok with them, yet leave room for improvement on those things as well.  I have learned so much about myself these past few months. It really helps to understand what i have understood. That's vague, i know :) Just go see your own psychologist and you will understand. hahaha

Its been difficult to deal with any issue, and wonder if this is it, should I just accept it, learn to live with it, and move on? Or should I keep hope and not accept that this is it?  I have come to understand that it is a bit of both!! I have stopped trying to figure it out and just let things be. I do my best, and because of that, and because I am 100% confident that I do my very best, why worry? Just let it be. If its meant to get better, it will. If its meant to settle, it will. As long as I do my best, we're good.

That makes me think... my writing! Well, it is coming back very well!!  I was not able to write for 2 years!!  That amazes me that after 2 years, it seems that all over sudden, my  hand got strong enough to write.  It is not my past hand writing, and will never be, but it looks better than some people. Sorry "some people".  

One HUGE thing for me that I have learned with the psychologist in the past few months (no, I am not talking about my butt), is to truly know myself, know my limits, and act (or not act) on them.   For example, I wanted to feel "normal" and act "as before" once I hit that one year mark post surgery, that I pushed myself so hard thru so many things that I was struggling with. I was always someone who "pushes herself" and I really believe it has served me well in a lot of areas, but I just pushed myself "too hard" on this one. Its been difficult to figure "ok is this an area where I CAN push myself and i will get stronger every time, or is this an area that is so damaged and limited that IF i push, i will make it worse!?  

I found out that on most of my post surgery issues, its the second.   I found out that I can push my physical body, like writing when it hurts so much, or doing something even if it makes me dizzy, but I CANT force myself mentally.  A few things I really cant physically either, but mentally, there is just no other way but to not go there. At all.  Last summer and fall, (2014) I started experiencing such severe confusion and disoriented moments, that sometimes, I didn't know where I was and simply could not "think". Like my brain was fried.  Well, it probably was!!  I put myself in some pretty scary and dangerous situation. Like being lost in a very bad neighborhood, with my phone dead, without money, almost out of gas.  Not fun!   I was pushing myself to service other people, on very little sleep, and just push so hard, all day, and for days sometimes. It brought on a lot of stress, wheither I felt it or not, and created a very vicious cycle of self destruction. Thing is, I felt fine. I felt physically fine, but by the time my brain was paying the price, it was too late. It was absolutely horrible.

I found out that what i was then experiencing was bouts of "dementia".  My screwed up brain(literally, i can feel those screws haha)  just can't take that much, and part of it just become very slow, foggy, or shut down.  You also lose judgment, the ability to really make decisions. Its like you are a puppet. You are there, you can move, but you have no brain.    Dementia is not a disease, its a symptoms.  We are also pretty ignorant about dementia.  When I used to hear that word in the past, I thought "Oh crazy people who do crazy things"  Well let me tell you something.  Its not "crazy people", Its normal people, like you and me, and its not their fault!   Here is the real definition:

Dementia is a loss of mental ability severe enough to interfere with normal activities or daily living, not present since birth, and not associated with a loss or alteration of consciousness. 

Full blown dementia, in order to be "diagnosed" with it, needs to be constant for 6 months or more.  Some illness will end up with dementia, like Alzheimer, and did you know that we "all" will experience dementia in our last moment on earth?  Its the shut down of our mental abilities.  I DONT have dementia, I just experience a loss of mental ability without losing consciousness when I put myself, or someone or something else put me, in situations that are too much for my "new" brain to handle.  It is like having a short episode of dementia until my brain can recover.  I just call it "having moments". Its sounds better.  My moments were, and can still be, triggered by my brain getting into shut down mode, because the truth is, its weak, it does not work normally, never will again, and I have to learn to recognize what it can, and can't do.  For me, I realized that lack of sleep, or really 7 hours or less of sleep a night, is a killer. It literally is a killer.   My brain just cannot function.  I cant think. Everything is a fog. I forget how to drive, I am just in a big blur that just escalate. Stress will also do that to me.  Not enough sleep, and stress, will do that. The stress does not have to be stress as we know it, it can just be being in a noisy environment, lots of noise and lots happening. I truly am learning to listen and recognize the triggers.  I still get those moments sometimes... because life is life and sometimes, unfortunate things happen and you cant control what is around you.  But nothing no where to what I experience last summer.  I am actually pretty lucky nothing happened. I remember driving on the highway and all over sudden I got so confused that I almost stopped my car in the middle of the highway so I could just walk out and get some air.  I am not sure that would of end up well. Last year, an old man was thought to have commit suicide because he walked onto traffic on the highway. His family insisted that he would not kill himself, and I believe them. It has never been that bad again, but I have many days where I feel very "foggy" and "off". These days, I just do very little, physically and mentally... like a puppet... with half a brain. :)

I HAVE to learn to avoid as many triggers as I can, because believe me, it is very scary, and depressing, and awful, to all over sudden feel so lost and confused. I often feel like I am a prisoner in my own mind.  There is so much I want to do, that I "think" i could do, yet, I cant. It's not that my mind automatically tell me "No don't do that", its that I purposely have to avoid certain situations because I know that my mind will shut down on me. I also cannot spend too much time reading something, or focusing very hard on something, to learn or understand, or process information. Too much will completely blur my mind.  My mind just literally shuts down. So yes, I feel like a prisoner. BUT I am really beginning to not only accept it, but not feel guilty about it.  I know that the people who truly love me, want me to take care of myself. They will not ask me to do this or that for them, because as simple as some tasks are, every little thing require for me to remember this, focus on that, drive here, go there...

In order for me to truly understand what my limits are for my own sake and the sake of people around me, I truly had to learn to be completely transparent, completely honest, starting with being honest with myself. I was always "honest", but I never really learned, or allowed myself, to be honest with myself.  I always gave, and did, as I thought of others wanted. Because I love people. I love to make people happy. But I know now that if I didnt know how to be honest with myself, I could not be completely honest with others, even if I thought I was.  Nothing was on purpose, it just was as it was.  I have gained a confidence of knowing who I am, allow myself to be imperfect, allow myself to have flaws. I dont have to be perfect to make people happy. Nobody ever asked me to be perfect for them. I just thought I had to be!  Its ironic, because if there is someone that always appreciated other people's flaws, the authenticity  that comes with it, it is me!!  I didnt realize I was  lacking of that transparency even tho I was always nothing but myself, and never afraid to show all sides, and admit flaws... somehow, something was lacking that I believe I have now found.    Its good to be flawed.  Let's all be flawed :)  hahaha

I am blessed to have friends that understands. I am blessed to have very low maintenance friends whom I dont have to hang out with, do things with, do things for, for them to know that I am there for them always!  And I am blessed to be confident enough that if someone is not happy with the new me, they can just kiss my.... my nose? ah!

So all this said, I am not depressed that often about my "new life".  I do get moment that i feel a bit worthless, that i feel so "weak"...
But I have learned that it is completely okay to know my limitations, and live according to them. After all, you don't want me having "moments', do you? hahaha


Life is as beautiful as you make it, and that's what I choose, to make it beautiful. The only expectations that I have are to better myself, the best I can. No dead line, no hurry, no limits, but also, no expectations. Lots of hope, but the kind of hope that appreciate whatever there is.


So, I accept what is, and I hope for what will be :)



Monday, June 15, 2015

Pray for Nick

I just received this message tonight:

"Hello- I am on a plane right now traveling with my 15 year old son to Phoenix Arizona. He is set to have surgery Tuesday morning by Dr. Nader Sanai and Dr. Robert Spetzler. We found your blog successful brainstem surgery recovery, and read it on the plane. I just wanted to say thank you so much for sharing your story. It helped us both so much and answered so many questions we had. If you would like to follow my son his page is Pray for Nick. Nick has a rare tumor in the pons area of the brainstem. These were the only physicians that gave us any hope. My son is a healthy soccer player and they feel like they can get him back to how he is today. Hearing your story makes me feel like that is true.""

It makes me so happy that these people have hope again!! I would really appreciate if you keep this family in your thoughts and prayers, or your tea, whatever you do! smile emoticon

Monday, March 16, 2015

My Neuro Psychological Evaluation


My Neuro-psychological testing is done. I was incredibly challenging for me. My brain was completely shot the first time from focusing so hard. I got 14 hours sleep that night and 10 hours , 2 nights in a row after that smile emoticon I focused so hard on having good results... which came out "poor" by the way... :(( ( which Dr.Sullivan hurried up to say. haha) The neuro-psychologist is great. Such a down to earth guy, and funny.   He seems "real", and you know I love real people, no matter how shy, or blunt, or quiet, or crazy they are.


He explained to me that he does not know the "percentages" between what is Neurological damages from the CM and Surgery, or psychological issues like anxiety/depression brought on by all all this. I think its not that black and white, but the 2 have a good team work going on. It's been a struggle to explain to people how most of the time, this "confusion" seems to appear "out of nowhere". I do know that stress, lack of sleep, multi tasking, conflict, having to focus hard, too much to do, trying to remember something and more, are major triggers. I do need help controlling those triggers. But how do you live life without any of these??? It's life, you know! But, I understand now that there is no "this happens out of nowhere".... There is/are trigger/s and I can point out the "trigger" most of the time... 


So,  I agree that I can learn to manage the psychological "triggers" and i sure hope get control over them... because this happening causes me to stress way too much, and stress makes it a lot worse. . and getting frustrated or upset makes it worse, and let the cycle begin. I do trust him (the Neuro psychologist) and will follow thru with the psychological treatments with a psychologist.  I have no doubts that I will benefit from it, but the same way I knew my physical and neurological symptoms were caused by my cavernoma, I also know this confusion to be be the cognitive impairment. I have had a few moments where I was dealing with major physical stress from lack of sleep, too much running around, doing too much for people, and I got myself majorly lost, big time a way I wont even try to explain. Lost physically and mentally. No judgments, No nothing. NOT good. So I KNOW that stress makes it worse, but don't tell me this happens to me BECAUSE i am stress. I am not someone who stress myself out. 


However, like I said, I truly need help not letting this get to me to where it makes it worse and I cant function at all. I also sure can use the psychological help to start accepting my new "brain", and when I feel anxious and depressed because I feel dumb and misunderstood because of it. It's a cycle I do want to break... Jay offered my the sweetest gift ever the night I got my "results". It is a book filled with cute, funny, and beautiful heart felt words about why I am awesome. hahaha It truly, really spoke to my heart and made me understand that despite me thinking and feeling that I "now suck", I dont... That made me understand that I just have to learn to live with the struggle of this cognitive impairment ... but to stop stressing out about it, that this does not define me ... Its a lot harder than it looks to feel like a completely different person "up there".... I was ready 100% to accept any physical deficits going thru with the surgery.... 


You dont hear me complain too much about how awful the ringings (5 tones) in my head are, or how annoying it is to drop everything, how difficult it is to write, be dizzy all the time, or the annoyance of poor depth perception. (Hey that's not even complaining, its just stating facts haha) But somehow, the mental changes... the difference in how you "think" is so hard to accept. Every minute of the day, I feel that I am working out my brain, my "thinking process". Its really exhausting. We dont realize how "thinking" controls all aspect of our lives until we feel as if we cant think at all. Well this took me 2 hours to write... But writing my thoughts is so much easier than talking. I was told back in Speech therapy, that to talk, we have to think first before we say it, but writing, we "speak" it as we think it . All I know is that it is so much easier to write. That's why I prefer text or email than talk on the phone, but that can be viewed as rude. But that's a different post. hahaha 


Oh I also will be seeing a Neurologist about my breathing/heartbeat vagus nerve issues. To finish, this picture... is so very accurate. It always surprise me when I come across something that explain what I could not even put into words. It makes me say "Ah someone understands!! or I am not crazy!!"




Thursday, February 26, 2015

They are home

Hi guys :)
I forgot to let you know that both Heather and Eunice are home :) Surgeries went good and they are now home and recovering!  Eunice feels a lot of fatigue easily, which is so normal.  She is back home in Texas and will be doing therapy there.  Her left side is heavy and she has trouble with balance, which she did before surgery. She has no major new deficits!  Heather says she does not have any new deficits at all!

Monday, February 9, 2015

2 new warriors

I will always do all I can to encourage people to be pro active and seek the opinion of Dr.Spetzler to anyone with a "inoperable" brainstem cavernoma. Surgery remains a personal choice if he gives it to them as an option!


I dont like getting praises for helping people find Dr.Spetzler, simply because, believe me, if these people had gone home and listen to the Doctor, they would of never found me. Instead, they were pro active and researched, then they found me. The same way I found Akiva, my very first glimpse of hope.

That said, that brings me to Heather and Eunice!

Back in September, I was contacted by Heather thru the support group (AVM survivors) that eventually saved my life by teaching me to be pro active, to not just take what the Doctor said as if its the last word, but to really research, and listen to my "guts".  She sent me a private message after reading in my profile that she too, was diagnosed with a brainstem CM.   Months later, this is what is happening:

"I will have a right retrosigmoid craniotomy at Barrow Neurological Institute. Dr Robert Spetzler will perform the surgery.

The cavernous malformation with DVA has increased in size from 5.6 mm to 8.3 mm from Aug 2014 when first diagnosed to Jan 2015. The CM is located 1 mm from my brainstem in the right cerebellar hemisphere. 


Dr Spetzler and my local neurosurgeon in Northwest Arkansas both agree that surgery at this point is wise. What an emotional few years it has been!

Thank you to Lisanne for her support, she is the person that directed me to Barrow after meeting through an online support group in the fall. 

After opinions from three neurosurgeons and educating myself and family; I am confident in my treatment plan. I am anxious as I have a husband, 14 year old son and five year old daughter ready to have their wife and mom healthy and well.

I pray, trust Him and fiercely move forward!"   -Heather


Her surgery is tomorrow, February 10th!! I really meant to post earlier, but I am always so lost when it comes to dates!! She is in Phoenix right now having her day of Pre-Op.  Please do follow updates of the surgery on her facebook page. I will also be updating mine.

That brings me to Eunice.  We have been texting for a few months now :)  Funny thing is, I dont remember exactly how we got in touch. I just know that I shared my phone number right away, because that is what I do. I know how important it is to get answers when you find someone that has some!   I got a call from "my people" right away too. In fact, I was in the hospital when Akiva called me and Christine and I started texting.

Here is a bit of Eunice's journey:

"I was 28 at the time of my hemorrhagic stroke October 2012, a months and a half after my birthday.   I was at work when it happened.
Eunice with her husband Jeremy.   
I called my husband to pick me up and take me to the hospital because I didnt feel right. Later, when I got there, a CAT scan was done and there was blood in my brain. When I heard that, I was surprised and in disbelief. I was transferred to another hospital and I was there for almost 2 months.  I have never received an MRI but got familiar at the hospital and found out what caused the bleed. It was a cavernoma.
A month after the bleed (stroke), I was supposed to get one (an MRI) because I had never have one and because I always have headaches, which of course was too late and didnt happen.

Ever since I left the hospital, I've been with my parents doing rehab and getting help and I go to the gym every day since March 2014.
On February 17th 2015, I will have surgery on the brain stem by Dr. Spetzler, in Phoenix and hopefully remove the cavernoma.  I am from Texas. "
  -Eunice

So, my friends, I am asking you, as I have in the past, to keep these 2  beautiful ladies in your thoughts and prayers.   Eunice does not have a Facebook page, but I will be updating me as I receive texts :)   I have no doubts that they will go thru surgery just fine, with the finest of surgeon.   The surgery, as invasive and crazy as it is, is just a small part of the whole recovery process.  Praying for strength, joy and peace, is what helped me the most.   Praying for a quick recovery is fine, but this is a long recovery, its normal that it is a long recovery, and a better word  than quick would be Smooooooth. :)     So ma love, pray for our friends to feel strenght, peace, joy, patience and everything in between.  Also, do not, never ever forget to pray for the surgeon, and the loved ones waiting!  Like my husband said to me : "We got the easiest part, sleeping there all day" hahaha





So people.... SMOOOOOOTH! Ok? Being happy, thankful, accepting and patient, does a lot more good than
expecting to get on your feet in a week and getting depressed and mad after 3,4, 6 weeks because your recovery does not seem "quick".  








Monday, January 12, 2015

Cognitive Impairments

I found this information online about having Cognitive problems. I found it an interesting read. The list in the end is dead on.  

"Cognitive complaints, almost always, are the most disabling of the six types of impairments caused by a brain injury. They are most profound immediately after the injury when the survivor has very limited awareness.

During rehabilitation, cognitive abilities typically improve dramatically, but rarely fully. All but a handful of survivors of serious brain injuries experience major cognitive deficits.
In the past, it was believed that, after two years, people living with a brain injury made little or no progress in cognitive ability. New research, however, has demonstrated that recovery can, with effort, be a lifelong exercise.

Cognitive impairments — by themselves or in combination — cause many problems in daily life. Take reading, for example. One person has difficulty reading because her injury damaged the language centers of her brain. She can’t comprehend the meaning of many words. A second person struggles to read since her injury compromised her short-term memory. She can’t follow the flow of a story. A third cancelled her library card because her injury ravaged her ability to concentrate. She started a book twenty times and never got past the first page.

Neuropsychological testing is a tool rehabilitation therapists use to isolate the cognitive impairments — such as language, memory, and/or concentration — that cause a particular functional problem, such as difficulty reading.

Unlike physical complaints, which are easily diagnosed, cognitive impairments can be subtle. This is especially true with a package of higher-level cognitive abilities called executive functioning. We use our executive functioning abilities to do everything from making an egg salad sandwich to launching a spacecraft. The survivor and those around her often don’t recognize major deficits in this area until she returns home and reenters the community.

Memory almost always is impaired by a brain injury. 

Four types of memory can be affected, singly or in combination:
  • Short-term: the ability to hold a small amount of information for about twenty seconds
  • Long-term: the ability to hold and retrieve information for as little as a few days and as long as a few decades
  • Retrograde: the ability to recall events that occurred prior to the injury
  • Anterograde: the ability to recall events that occurred after the injury

Other common cognitive complaints include deficits in the following areas:

  • Attention
  • Comprehension
  • Concentration
  • Decision-making
  • Initiation
  • Judgment
  • Self-monitoring
  • Spatial orientation
  • Language comprehension
  • Safety awareness
  • Information processing
  • Learning new material 



Monday, January 5, 2015

In someone else' shoes

As I shared last week about the struggles I have been having with my "mental state" sometimes. Suddendly being hit by this wave of confusion and I will even go as far as saying turmoil... I have been looking on the bright side, that at least, my mental state is not suppose  to deteriorate.  Knowing that you are going to lose yourself a bit more every day is a very painful thought, so I am still hoping that my Neuropsychological testings will come back normal (as normal comes with my type of Brain injuries) and that my brain just gets "tired" easy, instead of having an illness like Alzheimer, where this type of dementia becomes constant after a while.

This photo shows perfectly what happens to the brain after it has been compromised. 



When I first saw this picture, I cried.  Realizing how true didnt only confirm to me that all the things I have been experiencing on the "after" side are indeed "normal", but because it made me realize that this was real, and not just me thinking I am going wacko.   The words  "Slow Processing", "Turmoil", "Poor Concentration", "Weak Memory", and occasionally "Emotional outburst" are what is the hardest for me to deal with. I am indeed dizzy, somewhat impulsive and lethargic,  but I am stronger at controlling those. At least I hope so.  

Another picture I saw is related to the way the new brain "hear" words and process them.  It is always a work out. It could be a lot worse. ALL of these could be a lot worse. I am not here sharing this for you to pity me, or just for me to complain to you on how rough it is. Not at all.  I just want to show that this is real.
It is very helpful to know how to help someone you care about with things that are difficult to them. 



   
That said:
(copying here what I wrote on my facebook page:)




I think it is so important in all aspect of life to put ourselves in someone shoes, or at least try to, with the intention of not only understanding, but feel compassion and maybe gain more patience. I know that those around me have to be very patient with me when I ask them to repeat the same word or sentence over and over again, or when I forget something despite being reminded... or forgot where I left this or that. watching this made me sad, more so from the reaction of the loved ones . I do not have Alzheimer like the experiment in this video, but the constant "driving you insane" noise, the forgetfulness, confusion, clumsiness... are oh so part of life now... I am blessed that my vision is fine and my mental state is not going to deteriorate. I have been very sensitive to the word "crazy" since my brain surgery/recovery and dealing with all those "invisible" deficits. Nobody is "crazy"... the DUI driver that kills a person for the second time, or the mom who OD's in front of her kid, now, these people are crazy... but someone who has had the unfortunate event to be hit by a illness like this, or have a brain injury, or whatever it is... please dont call them crazy... what makes you think that they wanted that for themselves more than you do?

Here is the video. I hope that you watch it fully realizing that this can happen to anybody.  Your spouse, your mother, your father, your sister, your best friend, even your child.