Thursday, April 18, 2013

How am I doing? Very good thank you!

Since I got home, every time someone asks me the "How are you?" question, I answer "I am doing really good!!".   I do feel like I am doing really good because I know how much worse I could be! I know according to my situation, that I am doing good, that everything is going according to , and better, than planned. So yes, my "I am doing really good" is very true and sincere.  For the ones who understand my daily struggles and deficits, temporary and permanent, mostly people who are very familiar with what I been thru, my husband, my family, my best friends, they totally know what I am saying.   However, it makes me giggle and somewhat shake my head when people answer to me "Oh that's good, I glad everything is normal!"  haha Its funny how some people with a cold or a broken arm will take the question "how are you" to complain and cry instead of telling people what is actually "well" with them.  It's also funny how if you are not the complaining type, and you say you are feeling good because that is what you choose, they think that means you are back running at the gym or after your kids, driving all around town and cooking all afternoon. NOT! haha

On the opposite side, I have had people REALLY wanted to know how I was doing, for real, with details and truly wanting to know what is going instead of me saying  "I am great, I'm alive" hahaha  So for you, I am going to take time to tell you how I am doing in each of my deficits and current struggles. Some of them are permanent damage from my brain bleed caused by my cavernoma in the last 3 years, and some are temporary, or permanent (only time will tell) from the brainstem surgery.

Vision:  I will start with this one, as it is becoming clear to me this is going to be my most long term challenging one.  As you saw in my pictures, I had gauze on my left eyes for about 2 days after surgery. It is one of the first thing I noticed when i woke up. I could not see from the left eye . Jay told me it was swollen shut. A nurse told me she read in my report a optic nerve was paralysed during surgery. It didnt upset me. It is funny how nothing upset me. I was honeymooning from this second chance at life I think. haha I dont remember exactly when I noticed I had double vision. I think its early the next morning when I could open my eyes a little. Oh boy, its was quadruple vision!!  Combined with the vertigo and dizziness, I was not sure which one caused which. I now know it was two different things.  The ICU nurses gave me a a patch and the vision was still very blurry and  as vertigo went away in the next 2 weeks or so, I realized how bad my vision (not the double vision, but the vision strenght)  was.   I noticed I couldnt see up close. I had just gotten glasses and a new prescription in January and I couldnt see out of them! Even my old ones, another prescription, were no use.  I knew this was probably all get better with time, but also was hoping that simple new prescription glasses (probably bi focal) would do the trick when time came.   At the Inpatient rehabilitation center, they were very srict about wearing the patch as least as possible.  They wanted me to wear these instead :

hahaha Its basically clear security glasses with tape over one side. The problem with these, is that they only get rid of the double vision (if you look straight)  It still lets light thru and train your brain to use that eye too.  It's ok if you only look straight, but oh boy it was so disabling in all other situation.   It depended on the therapist too.  The thing is, you want your brain to work hard after evasive brain surgery like that. You want to trick the brain and make it have to work right again. I did what I was told and got the ok to wear the patch once I got a headache from my brain working too hard. haha   

I saw the Neuro Ophthalmologist 5 weeks after surgery after I got home. He is basically a neurologist just for neurological vision problems.   He assessed me and found that I have palsy of the 4th degree cranial nerve, the "optic nerve" the nurse was talking about on day 1.    Here is a bit of information about it: 

"Fourth nerve palsy refers to a congenital defect or an acquired injury to the fourth cranial nerve, which is responsible for eye movement. When the nerve is damaged or malformed, thesuperior oblique muscle in the skull behind the eye cannot keep it aligned straight ahead. The affected eye tends to drift vertically, horizontally, or both from center, causing double vision that can only be relieved by tilting the head to one side. Vision problems and self-consciousness about the problem can significantly impair a person's ability to engage in normal daily tasks. Surgery is typically required to correct eye positioning and minimize vision stress.

Most cases of fourth nerve palsy are the result of developmental abnormalities in pregnancy. The causes of congenital palsy are not well understood, and there are no clear connections between palsy and a mother's medication use, diet, or other environmental factors. When fourth nerve palsy develops later in life, it is usually due to a major head injury after a fall from height or a high-impact car crash. The condition can be either unilateral, or confined to one side, or bilateral, affecting both eyes. Most cases of both congenital and acquired fourth nerve palsy are unilateral."

The best way I can describe it is that I see very distorted and doubled when I look down, unless I cover one eye. That is why I often wear a eyes patch.  In the house, I dont wear it unless I am having a bad eye day. haha I also know my steps and learned to go down without looking down, but it I am out for example and need to look down, I need it.

The Neuro Opthomalogist told me that palsy that is temporary usually get better with noticeable changes every weeks. I am at a plateau now since about a month. I have to go see him in July. If it didnt get any better (he will find out with testing my vision, as my own perception of things could be telling me "yes its better' or "no its not" and i could be wrong either way.  If its  not better in 5 months, I will have to consider corrective surgery.  I am not really in the mood for surgery right now but IF I need it, its not for a while :)     Here is how I see with a patch on looking down: (distorted, but not double) 

This is how i see looking down without the patch on (distorted and double) 

Yea yea i know. Its not even that distorted , but its double. Just stare at it for a while and you'll feel a bit of the dizziness i live with all day ;)    
Its still a lot better than when I first woke up. I saw distorted and quatruple no matter what. haha I would even burst out laughing at people and tell them how funny they looked.  Or I saw LOTS of bacon in my plate. haha

Something like that, but no faces in the front. To tell you the truth, the double vision is worse dizziness wise. Its on a smaller scale and object over lapping instead of having more than one.

So this was my vison. Now you know :)  Here is my "Fo show" only eyes patch. It does not stay on...  but it stayed on for the picture haha

Hearing: As some of you know, loss of hearing was my first symptom. I didnt know it, but it was my first bleed. I was so dizzy and noticed I was hearing less and less. I always had bad hearings, so I didnt see the Doctor. I just thought i was getting old.  (hey I am 35-32 at the time, but still)  a few months later, i developed a very bad ear infection, fungal. It got worse because they treated it as a bacterial infection until they transferred me to a great ENT that diagnosed me right and gave me the right medicine, but by then, the infection had eaten away my ear drum and spread down my throat. Anyway, I had a eardrum graft surgery to help my hearing and vertigo after the eardrum didnt heal on its own. Its only when the surgery didnt work that my ENT sent me for a CT to make sure it was not cause by a infection somewhere else in the head. CT does not read cavernous malformation, and it was only the left side of my head, so it came out "clear". I just accepted that I was having a very loud ringing noise in my head, (called tinnitus) could only hear about half of normal hearing. I qualified for hearing aids.

As of now, the surgery didnt get my hearing worse, only  at first when i felt my head was "full". Plug one of your ear and talk. This is what i hear. I hear myself very loud. It makes me speak very loud because at first, I was not loud enough because it would hurt me to talk since it was so loud to me.  As time went, I talked louder and now i just talk too loud. Its a harsh learning process... mixed witht the ringing noise, its not fun, but I am so used to it now that i dont remember anymore what it is like to hear normally.

What i find very heard, its the contradictions that comes with having a neurological trauma and bad hearing.  My ears dont hear good, but my brain dont like loud noises. More than two or three different noises at a time is very hard, it makes me very dizzy, gives me a headache and makes me feel like I am going to go crazy sometimes. I dont show it, I just make myself look anti social when I have to go in another room or leave.   A lot of noise trigger the tinnitus in my head to become very very loud. Louder than anything else I hear.

This is a bit of info about the ringing and how it sounds like:

Many people experience an occasional ringing (or roaring, hissing, buzzing, or tinkling) in their ears. The sound usually lasts only a few minutes. Ringing in the ears that does not get better or go away is called tinnitus. You may hear a sound, such as a ringing or roaring, that does not come from your surroundings (nobody else can hear it). The sound may keep time with your heartbeat, it may keep pace with your breathing, it may be constant, or it may come and go. Tinnitus is most common in people older than age 40. Men have problems with tinnitus more often than women.
See a picture of the ear camera.
There are two main types of tinnitus.
  • Pulsatile (like a heartbeat) tinnitus is often caused by sounds created by muscle movements near the ear, changes in the ear canal, or blood flow (vascular) problems in the face or neck. You may hear sounds such as your ownpulse or the contractions of your muscles.
  • Nonpulsatile tinnitus is caused by problems in the nerves involved with hearing. You may hear sounds in one or both ears. Sometimes this type of tinnitus is described as coming from inside the head.
The most common cause of tinnitus is hearing loss that occurs with aging (presbycusis), but it can also be caused by living or working around loud noises (acoustic trauma). Tinnitus can occur with all types of hearing loss and may be a symptom of almost any ear disorder. Other possible causes of tinnitus include:

This is what it sounds like.  It's always there but only at its loudest  a few times a day. Turn your sound down and turn up slowly. 

Right now for example, its pretty loud, because people are talking and the television is on a sport channel with people shouting and music (on tv, not the house haha)

Dizziness and vertigo, I dont think i need to explain that, now that you know the causes.  I can only add that some days are better than others, depending if I overdo it (which is not very much) or turn my head fast etc.

Walking!  Ahhh This one is the most impressive as i could not move at all when i woke up. I remember being in the post op MRI machine and thinking to myself it could take a while before i moved, but at least I was "ok".  A few hours later, I could move my arms and i though "ok this is just going to be waist down". I was very very numb, all over, even when i could move my arm. The therapist showed me that even tho i could not feel the floor, my legs were strong enough to push against it. Learning to walk again consist on pushing the floor and then learning to use your leg muscles to stand up and train your brain that your legs are physically capable of walking, you just cant feel it. In other words, after a few days, i could move them even though i could not feel them. I was never paralysed, I was just very weak and numb. As i regained strength, I could walk even if i didnt feel my legs.  I have strong muscular legs from years of work outs , so I didnt have to work on rebuilding muscles, which saved me months!  I now am pretty good in the house, especially the first 2/3 of the day. My legs are very stiff and feel semi "asleep" and it feels sooo good to rub them or have a hot bath haha I do hope it gets all better but I gave them a year, which is what people take to walk again sometimes!  I have no complaints!  Days that I am weak, I need a cane in the house but it happens less. I need a cane, a walker depending on the distance and where I have to walk. I usually use my walker in a open space store, mall, outside. In the house I know I have my walls and furniture to help me if i need to.

Neurological issues like memory loss, speech fart like i call them, confusion etc comes and go. Its worse when I am tired, if i have a "bad" day (i dont know what causes them) at the end of the day too.  I often say the wrong word without even noticing. I wouldnt know if it was not of people telling me i just said "that". I dont think people are teaming up against me anyway. haha I have a hard time comprehending information that has a learning or "remember this" vibe to it. It has to be literal for me to understand. Dont talk to me in parable or expect me to read your mind. haha

There are so many other little things I experience but I feel so blessed that even if someone else in my shoes would see it as major burdens, I am just thankful and happy!!

So, how am I doing? Very good thank you!


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