Wednesday, May 4, 2016

Young mother with a facial AVM

Last week, I came across this story while scrolling down my facebook feeds.  As you know, I had a Cerebral Cavernous Malformation.  Its a Vascular malformation.  This young mom in this video, has a AVM, which is similar to a Cavernoma, but as opposed to a Cavernoma, who is like a mass of blood vessels on its own, not connected to any other blood vessel in the brain, an AVM is. 
However, AVM, as well as Cavernoma, can happen anywhere on the body! We just don't hear about it often. Of course, depending of where in the body they are, it can be more or less dangerous. 
This beautiful woman has her in her face.  Yes, her face. Mostly her nose, cheek and upper lip.   You can see how beautiful she is underneath that vascular monster! 

I encourage you to take a look at her story, and also go take a look at her GoFundMe page.  The big day is coming really soon for her! She is going to undergo major surgery to remove the entire AVM. That includes her entire nose, part of her face, and her upper lip. She will soon after have reconstructive surgery.   She has waited her whole life for this.  She is scared, but so brave. Tired, but hopeful.

Saturday, March 12, 2016

When you don't look "different": The impact of Acquired Brain Injury.

We often hear about TBI. Which stands for Traumatic Brain Injury. This happens to someone after a serious accident/injury to the brain.

A lot of people are not aware that ABI (Acquired Brain Injury) is the same, but instead of the brain injuries being brought on by an accident or head trauma, it is "acquired", usually by a invasive brain surgery, brain hemorrhage and other serious medical conditions.
TBI and ABI are Trauma to the brain, regardless of how you "got them".

Here is a great article on Acquired Brain Injury.  It covers everything a Brain Injury can bring, but some people are affected in more areas than others!  It can be discouraging to recognize yourself throughout everything mentioned to a certain degree.  I know for me personally, some areas are obviously a big struggles for me, while others I can only recognize very little.  It is a good read to learn about yourself and why you feel like a "changed person".  

I have struggled to accept the "new me" in some of those areas. That is because these areas are what makes us feel like "us", and who we are.  If I was always very organised before, never forgot where I left something, or never forgot an event, it is pretty difficult to accept all over sudden not being that way anymore, even if there are LOT of people out there who were never this way as a person!   Its the change that is difficult to accept.  Someone who has been forgetful since birth, or was never organized, doesn't feel "abnormal"... that has always been "their" normal.  So I try to remember that.... it is not that I am all over sudden "abnormal"... it is just that things are different now. Its still hard to move on from that!  Its a learning process and it takes time, patience, and acceptance!   

That last part "A widely perceived myth is that a brain injury is simply a type of intellectual disability. People who acquire a brain injury usually retain their intellectual abilities but have difficulty controlling, coordinating and communicating their thoughts and actions'
This hit home hard for me.  I have heard on several occasions people say to me "you sound smart to me, you write so well!"  or "You don't sound like you have cognitive issues to me, you are very smart!"  
Its very hard to explain how it feels like...  It feels very misunderstood and alone.  

But understanding all this is very helpful! And if others around you cant understand it, or simply don't want to take the efforts or time, at least YOU can, and you can stop feeling so helpless and "abnormal", but understand it, accept it, do your best, and be happy with yourself!!  People who truly knew you, and who loves you, understands you. They will always be there to push you at your best, but also comfort you when you feel so small :)  

Let's just accept it!

So, here it is.

Cognitive changes
Cognition is the conscious process of the mind by which we are aware of thought and perception, including all aspects of perceiving, thinking and remembering. In general, cognition is knowledge – the way we learn and perceive the world around us.
The nature of cognitive problems will vary over time depending on what the person with the injury is doing and where they are. Some of them may not occur at all. These changes may become more obvious over time and can be very frustrating because they can affect the person’s ability to learn new things, to work and to be involved socially.

Lack of insight
This is probably the most difficult problem to deal with. People with a brain injury have great difficulty seeing and accepting changes to their thinking and behavior. It is therefore necessary to provide frequent, clear and simple explanations about why a problem is being treated or why the person is unable to do something. The person may deny the effects of the injury and have unreasonable expectations about what they are able to do. If the person continues to deny or to rationalize problems it is probably better to change the subject. It is not a good idea to try to argue or reason with the person as this will only make both of you upset and agitated. Eventually the person will be faced with the everyday consequences of these problems.

Memory problems
One of the most common cognitive deficits is poor memory. There may be problems in remembering people’s names or appointments, passing on messages or phone calls, or remembering details read in a book or newspaper. In therapy the person may forget what they are doing from one session to the next. Many are able to remember things that happened before the accident, but may have difficulty remembering things that happen from day-to-day. The person may have problems learning new things. Memory problems may resolve as the brain recovers but giving repeated practice of memory tasks will not necessarily bring about recovery. It may be more effective to develop compensatory strategies and thereby minimize the impact of the problem on everyday life.

Poor concentration
A very common outcome is a tendency to lose concentration or be distracted easily from what they are doing. This is usually because they are having difficulty concentrating. The person may have a short concentration span, which means they might jump from one thing to the next.

Slowed responses
The person with a brain injury may be slow to answer questions or to perform tasks and they may have difficulty keeping up in conversation. Their capacity to respond quickly in an emergency may also be lost. The person can be helped by allowing more time to respond and to complete tasks. An understanding employer may be willing to modify the work situation. It is also vital that we avoid letting the person get into situations where they may be at risk by virtue of their slowed responses. This is one reason why many people with a brain injury are not allowed to drive. There might also be a need for careful supervision in the home.

Poor planning and problem-solving
People with a brain injury may have difficulty solving problems and planning and organizing things they have to do. They may encounter trouble with open-ended decision-making and complex tasks need to be broken down into a step-by-step fashion.

Lack of initiative
In spite of all good intentions, someone with a brain injury may sit around at home all day long and watch TV. If the problem is severe they may need prompting just to have a shower and get dressed or to participate in a conversation.

People with a brain injury can be very inflexible in their thinking. They can’t always change their train of thought, so they may tend to repeat themselves or have trouble seeing other peoples’ points of view. They may not cope very well with sudden changes in routine.

People with a brain injury can be very impulsive because they may have lost the filtering system or control that makes them stop and think before jumping in. This can lead to a wide range of behavioral issues and problems with relationships and finances.

People with a brain injury tend to have a low tolerance for frustration and can lose their temper easily. If kept waiting for an appointment they may become agitated and walk out. They may become unreasonably suspicious and paranoid.

Socially inappropriate behavior
People with a brain injury may have difficulty judging how to behave in social situations. They may walk up to strangers and start telling them about their accident, they may be over familiar with therapists or they may make inappropriate sexual advances. This area can be incredibly difficult for families or partners. In more severe cases the person will often end up homeless or in the correctional system.

A broad range of social skills may be affected by an acquired brain injury including the ability to start or take turns in conversation, interpret and respond to social cues, show interest in others, use humor appropriately, shift between topics of conversation and regulate the volume and tone of voice. A person with brain injury often lose their listening skills, and may talk excessively. Accompanying memory problems may mean that they often repeat topics as well.

A tendency for the person with a brain injury to become very dependent on others. The person may not like being left alone, and constantly demand attention or affection.

Emotional liability
Just as people with a brain injury have difficulty controlling their behaviour, they may also have difficulty in controlling their emotions. They may cry too much or too often or laugh at inappropriate times, or they may suffer rapid mood changes, crying one minute and laughing the next.

Depression in a person with brain injury is a very common emotional consequence that usually comes some time after the injury. Signs of depression include lack of motivation, loss of sexual drive, sleep disturbance and tearfulness.

Physical Changes
Loss of taste and smell
A blow to the head can cause anosmia by injury to the olfactory nerve. This nerve sits between the frontal lobe and bony protrusions from the skull and is vulnerable to trauma. A blow to the head can also cause anosmia by damage to smell processing cells in the orbito-frontal or anterior temporal lobes or by mechanical damage to nasal structures. This loss of taste and smell often leads to either lack of appetite, or obesity as the person compensates with very salty or fatty foods.

Dizziness and balance
These are very common complaints after acquiring a brain injury caused by damage to the brain stem, blood pressure fluctuations from damage to areas controlling the heart and blood flow or vertigo from damage to the inner ear.

Epilepsy and seizures
These are chronic medical conditions produced by temporary changes in the electrical function of the brain, causing seizures which affect awareness, movement, or sensation. Medication will usually control these conditions well but some lives are devastated by frequent, uncontrollable seizures or associated disabilities.

Sometimes called adynamia, fatigue is a disorder of motivation that typically arises after injury to the frontal lobes, particularly the dorsolateral area. People with adynamia will experience loss of drive, indifference and placidity and may find themselves exhausted for days if they do not carefully manage their limited energy levels.

There are multiple sources of head and neck pain, both inside and outside the head. Headaches arising from a brain injury can be caused by displacement of intracranial structures, inflammation, decreased blood flow, increased muscle tone, inflammation of the thin layers of tissue coating the brain and increased intracranial pressure.

Visual problems

Vision and visual functioning is often adversely affected by brain injury. Some of the more common visual systems problems include double vision, field cuts, sector losses, rapid eye movement and near-sightedness.

Chronic pain
This kind of pain persists beyond the expected healing time and continues despite appropriate physical improvement in the affected area of the body. The pain can emerge as headaches, neck and shoulder pain, lower back pain and/or pain in other body areas if trauma caused the brain injury. The pain may be so intense and bothersome that the person withdraws from work, family and social activities.

Differing degrees of paralysis can affect all parts of the body depending on which part of the brain has been injured. Effects can include poor coordination, difficulty walking, visual difficulties or weakness on one side of the body.

Hearing problems
Hearing problems can occur for a number of reasons, both mechanical and neurological, particularly when the inner ear and/or temporal lobes have been damaged. Tinnitus is experienced as noises which are commonly like a buzzing, hissing or ringing in the ears. Meniere’s syndrome is caused by excessive pressure in the chambers of the inner ear. Nerve filled membranes stretch which can cause hearing loss, ringing, vertigo, imbalance and a pressure sensation in the ear.

Auditory agnosia is impaired recognition of nonverbal sounds and noises but intact language function. In some cases trauma to the inner ear can cause the person to be extremely sensitive to certain noises or pitches and may not be able to tolerate many environments we take for granted.

Other Problems
So far only the more common issues have been looked at. However there are many disorders that are less common but no less debilitating. For example, Heterotopic Ossification is a secondary condition in which there is abnormal bone growth in selected joints, most commonly in the hips, shoulders, knees and elbows, usually occurring within the first nine months after injury. Chronic neuroendocrine difficulties are occurring in women some years post injury, with weight gain, thyroid disorders, changes in hair and skin texture and perceived body temperature changes. Other people struggle with typographic dislocation, where they cannot remember how to navigate even well known environments, such as their own home or suburb.

Myths and Misconceptions
A widely perceived myth is that a brain injury is simply a type of intellectual disability. People who acquire a brain injury usually retain their intellectual abilities but have difficulty controlling, coordinating and communicating their thoughts and actions.

Acquired brain injury is often called the invisible disability. It is easy to see why an acquired brain injury can be such a devastating disability. As there are frequently no outward physical signs of a disability. As a result there are very few supports available for people who acquire a brain injury, and often the few supports available may be withdrawn as the disability is not recognized.

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.