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!


Tuesday, April 16, 2013

Prayers for a fellow very soon to be cavernous malformation survivor

As I said in earlier posts, I was told "inoperable" by various Neurosurgeon. One of them even said after I had already been told my cavernoma already bled twice: "In its location, in the brainstem, if it had bled, you would be dead" In fact, i heard him say that to my husband (very bluntly I may add) because i couldnt talk ("if it would of bled, she'd be dead".   Later phone calls confirmed that it had indeed bleed twice before.  Anyway, what neurologists and neurosurgeons that are not specialized in Cavernous malformation dont know, is that even the tinniest drop of blood in the brainstem can cause symptoms. In fact, just the pressure of the cavernoma filled with blood can cause symptoms!  I later found that my local hospital visits and stay were due to a microscopic bleeding that to them was impossible because you know, i'd be dead if it bled ;)

Inoperable is usually  associated to either a cancer that had spread beyond repair, or location. When it comes to benign tumors, even devastating ones that doesn't spread, like a bleeding cavernoma for example, it is all about the location.  In case like mine, being told "inoperable" is often due to the surgeon itself not being able to perform the surgery without either killing you, leaving you with more deficits than before, or simply not knowing that sometimes, some surgeon somewhere knows how.  I was sadly shocked to discover that a lot of surgeons dont refer their patients to someone who can perform the surgery. You only have to hope that they wont have to perform emergency surgery on you to save your life when time comes, since they already told you that for them to perform this surgery means complete loss of any quality of life and permanent dependency on other people.

When I was told "inoperable due to location", I fully understood, and of course after some research on my own about the brainstem, I agreed!  I read so many stories and saw so many videos of very sad outcomes, all from people who had the surgery because it was either surgery or death, most of them not even aware of what happened.   I was shocked and amazed when Dr.Spetzler told me he could do the surgery. It was not "inoperable" to him, as "location" is not an issue to him. There is no brain location this man cant touch. He has refused people before; people who risk more with the risky surgery than not doing anything at all because they have not had symptoms, or people that are too far off and would most likely not survive the surgery or simply the surgery wouldnt make them any better anyway.

Like i shared in my latest post, going in to have the surgery would of been so much harder without the support of survivors I met a couple of weeks before. There is more , much more , than the 4 of us out there, but they are hard to find!!

Thru my That brain fart facebook page, a beautiful, full of life mother of 3 messaged me and told me her too, was offered a brain surgery by Dr.Spetzler. She told me that even tho she was pretty decided she would go for it, reading my journey and the successful surgery gave her hope and confirmed her choices. It makes me so happy to know that I can be an encouragement to her, as I was so encouraged by my survivors too!!  I know that some day, she will encourage someone else too!!


{Mary (middle) with her 2 daughters}

Mary is going to Phoenix next week and is going to have surgery Tuesday,  April 23rd.  She is going to have brain surgery to removed the Cavernous Malformation that is located on her Thalamus.   Here is a bit about the Thalamus:


Thalamus:

The thalamus is a large, dual lobed mass of grey matter buried under the cerebral cortex. It is involved in sensory perception and regulation of motor functions. The thalamus is a limbic system structure and it connects areas of the cerebral cortex that are involved in sensory perception and movement with other parts of the brain and spinal cord that also have a role in sensation and movement. As a regulator of sensory information, the thalamus also controls sleep and awake states of consciousness.

Function:

The thalamus is involved in several functions of the body including:
  • Motor Control
  • Receives Auditory, Somatosensory and Visual Sensory Signals
  • Relays Sensory Signals to the Cerebral Cortex
  • Controls Sleep and Awake States

Location:

The thalamus is perched on top of the brainstem, near the center of the brain, with nerve fibers projecting out to the cerebral cortex in all directions. The medial surface of the thalamus constitutes the upper part of the lateral wall of the third ventricle, and is connected to the corresponding surface of the opposite thalamus by a flattened gray band, the Interthalamic adhesion 



I am asking you to pray for her. Its one thing to wake up and realize you are indeed still alive... but it does not stop there!  None of us wants to wake up to a life completely changed forever.  All of us who chose to go thru the risk of surgery in the hope of a better future know that we are doing so knowing the risks and totally ready to start the lengthy recovery process. The ones who are not simply do not have this surgery.  We are ready, but we hope not only will it save our life but will  not take away  a good quality of life. So pray for Mary to  not only have a successful total dissection of her cavernous malformation, but to wake up strong and ready to start the recovery with peace, confidence, but mostly joy and obvious certainty that life as she knew is not only going to get back to normal, but even better with the eternal gratitude that she will never have to worry about this again. 

Thank you for your prayers, my friends. 




Wednesday, April 10, 2013

A serie of unfortunate events and The power of social media

When i found out I was sick and my time may be limited last May, I didnt tell anybody but my immediate family (Mother, father, sister, brother; no grandparents, no aunts and uncles etc) I didnt post it on facebook either. I wrote a private message to a few friends that I consider close to let them know, but more so they wouldnt feel betrayed if i died and they found out from someone else that I was sick all along.

I hate pity. I dont want it, and i dont like people who wants it.  Pity and compassion is two different things, and I have a lot of compassion for people. However, I lack of it when its the same person over and over that never have "anything good" happening in their lives and complain about things that we could all complain about... that for me, is wanting pity, not compassion. Anyway, since this is one of my biggest pet peeve, I guess I am so afraid of coming on this way that even when i am dying I dont talk about it!   So for 8 months, nobody knew. I am a happy person, and my positive thinking and happy posting is always very very sincere, even when i am feeling horrible.

A series of incredible, amazingly unplanned events that i call a serie of unfortunate events,  can only come from above happened just as I started to feel very lonely in my situation. Of course I had my husband and my family and friends, but some days I found myself wishing I "could" share my struggles with the world just to get some nice encouraging feedback back.

Is is the chain of event; i going to try to explain as best as I can.

In January, I had a follow up MRI. It was "good". It didnt show any blood or engorgement of blood in the Cavernoma. I was surprised when my neuro surgeon told me the "good news" and right after proceeded to tell him : "Well, if it bleeds again, I will try to convince you to go with the surgery".  The "inoperable" surgery that he wouldnt do because i had 95% chance of severe handicap and a 99% chance of lost of quality of life by being dependent on others somehow. Why would he mention surgery if the scan was good. I was a bit confused and had this gut feeling that he knew something I didnt know. I later found out that a deep brain cavernoma is usually very empty and shrunk before it fills up with blood again and bleed.

Anyway I got home and told my friends and family the good news. I had been feeling really "off" for weeks and was becoming short of breath more and more every week.  I knew something was not right, but I brushed it off.  A friend of mine told me the name of Dr.Spetzler came up often in stories she found online that had a positive outcome (no death) when it came to brainstem surgery.  I didnt think much of it, but I happened to be texting  another friend at the time and just typed in the Doctor's name to her.  Well, the next morning, she told me "okay, i called that Doctor, he is in Arizona, and we are going to get a copy of your MRI and mail it to him today, he agrees to look at it". haha We went that day and got the MRI. During that same week, I also applied to the have a appointment at the Mayo clinic in Minnesota and  sent a Disc to Hopkins in Maryland.  Mayo called me 2 days later and gave me a March 6 appointment (they didnt take disk by mail) Hopkins got back to me as well and told me what they thought. I would have to go there for more tests-no answers as operable or not.  The next day, Dr.Spetzler called and said it was indeed an operation he could do despite the risks.   I was shocked. I had been told "inoperable" and had accepted it. I contacted these Neurological Institutes because they are amazing and wanted more of a confirmation of my initial diagnostic.   I was told by Dr.Spetzler that it was not a matter of "if" it will bleed again, but "when" it will bleed, and the sooner the surgery  the better because it was inactive at the moment but could become active anytime.  I was told I had 2 choices: to do nothing and let nature take its course, with a most certain guarantee that it will bleed in the next 5 years, but nobody knew how much. If I didnt die from the bleed,  I most likely would need a emergency surgery (by a local surgeon that is not expert in brainstem surgery) but maybe it would not bleed a lot, we didnt know. Or to do surgery as soon as possible to prevent this kind of scenario and be more in control of the situation, but that also meant to risk paralysis and a lot of other neurological disorders, or death, now. Overall, my chances were still better now simply because it would not be a emergency situation, but both options were life changing and sounded pretty grim.

I was torn. I didnt know what to do. I felt fine! Other than the damages caused by my previous bleeds, the dizziness etc etc I could drive, walk and had a normal quality of life... so the thought of going in for a surgery that was going to disable me in some way now just to avoid worse tomorrow was very heavy. What if i still had 4 , 5, 8 or even 10 years of "normal life". We didnt know... so what to do?! Do you take the risk of 5 good years or take the risk now to end it all. Oh that's right, it could be tomorrow, you dont know!

I was so torn and my 2 choices looked so grim, which grim one do you want, really?!  That same day, a family friend that lives in another city stopped by and the private person that I am, he asked me how I was doing, and I surprised myself and I told him what was going on.  He was so calm yet empathetic and right away said "i would have the surgery" and by the end of the conversation, i knew exactly what he meant "the kids were not ready to lose their mom, and even if i was living in a nursing home, even as a vegetable, as long as i was alive, my children would be okay". I didnt think that way before.  It made perfect sense.  A child is not ready to have his/her mother dead... if she is "handicapped" and in a nursing home, its devastating, but not as devastating as dealing with her death.  Its a matter of them saying "Oh  yes, my mother, she had brain surgery and lives in a nursing home" to "oh , my mother died of a brain hemorrhage when I was 12"

About 10 mins after he left, his wife called me, and again, it was such a blessing. I was pretty much set on my decision by the end of the night.... just like that, after agonizing for nearly 3 weeks.    The next day, my daughter had a girlscouts meeting and the leader came to me with "rumors" she heard.  I told her what was going on and she had such compassion...  and again told me right away for my children, just to guarantee this is not going to kill me any day, I should have the surgery now, even if it meant losing myself.   I told her I already was 90% inclining towards surgery, but I was now agonizing over "peace". I was totally ok with having this surgery just so my kids could have a mother, but when you are told by the best neuro surgeon in the world that your risks of  losing independence is huge, its scary!  I didnt want to be a burden either. I wanted to lay down on that operating table feeling confident about my choice. I wanted to be in total peace about waking  up paralysed, not being able to talk or see... I knew it was not good to go into surgery scared to death and imagining the worse. I wanted to do this with a smile on my face. I know people go thru this crying and scared and uncertain, but i didnt want this to be me.

To find some peace and raise my choice from 90 to 100%, I then started to look online for people who have gone thru the same thing to make my decision.  I typed in "brainstem surgery" and all  i read was devastating. They were all paralysed, neck down, or waist down, or one side of body.  They didnt have a good quality of life at all. It took me a week or so of reading dozens of stories and watching videos  to realize that they all had something in common: The ones that knew they had the condition had a major bleed and needed local emergency surgery to spare their life. The ones that didnt know they had the condition had a bleed and had emergency surgery to spare their life.  Same results wether they knew about this thing being in their head or not.   I searched in vain for someone that had a good outcome after emergency surgery, or someone who had this surgery because they chose to, like i had the option to do. I thought I would never find it until one day, and started even wondering why people were so private, why wouldnt share their story!? ( Uh, like me! )  I typed in google "successful innoperable brainstem surgery". On the third of fourth page, I came across this blog:

Christine

Chritine is a amazing young woman who didnt know she had a cavernous malformation until it bled and landed her having to have emergency surgery, thank God she had a wonderful neuro surgeon that took on this "inoperable" surgery and finding her blog almost a year to the day of her one year anniversary, i quickly read that she was walking, had just gotten married and seemed to have good quality of life. She had some troubles, but she sounded so happy and positive (my favorite people :D )  I read her entire blog all night and wrote her a message!   I also found her on facebook and that made me search for that as well and I found a page that lead me to this blog:

Akiva

His story was just like mine, and he travelled all the way to Arizona to have the surgery done by Dr.Spetzler.  He seeked surgery as soon he found out he had a "inoperable" brainstem cavernous malformation. He researched right away and found Dr.Spetzler. I was very happy to have found someone that had the same surgeon as me AND also maintained a pretty good quality of life.  He had the left side of his face paralysed and wears a eye patch, but he is happy, married with a beautiful new baby and I also sent him a message asking him his opinion on Dr.Spetzler.

It's not even 2 days after I contacted them that things started going "down" very fast for me. Out of the blue, with no warning, and I ended up in the ER than the hospital for 3 days.  I knew this was probably going to happen some day (i was told 99% chance) but this soon? no!!  That's why i questioned my own sanity when local neurologist told me it was probably "just anxiety" (because the microscopic  brainstem  bleed didnt show on their scan) and I thought maybe i was indeed anxious and not aware of it?!   So yes, i was caught off guard and I was not ready. In a year, or 3, but not 3 weeks after I am given that choice, not now! Nobody is ever ready to have a brain bleed I guess....

We were in the car on our way the ER for extreme vertigo and weakness that was just "not right" when I was "hit" by now what I know was a microscopic brainstem bleed.  I could not move at all, not due to weakness, but it was a complete paralysis,  i was gasping for air and even tho i could not move, the pain was very intense. I couldnt swallow and felt like i didnt have a throat. Hard to explain. hahaha My lips and entire face was tingly too. I felt like i was going to faint and I fought it a lot.   In the ambulance after Jay stopped at a fire station, i really thought this was it... that i was having a massive brain bleed and was going to faint at any moment and die or wake up not even knowing who I was.   If a microscopic bleed feels this way, no wonder people drop dead or faint when its bigger.  At the same time, I kept thinking that this made no sense. I had just found people who could be such a encouragement to me, still waiting on their response with such hope, the best surgeon in the world to offered to operate as soon as I wanted, and I would die now?? I would have emergency surgery now by surgeons who cant do it other than to spare my life and be left a vegetable!  I kept saying "not now, not now, not now!!"  Deep down I knew God would never do that to me. But if he did, I had to turn it into something good, somehow. I was asking myself "what kind of prank is that?!"

Well I didnt die. haha  I regained sensation 5-6 hours later and was very weak until surgery 10 days later.  I was in the hospital 3 days.  In the hospital, I got a email from Christine and one from Akiva.  I told them where I was but they didnt know how ironic it was... how i was fine and the day after i found them not sure what to do i was in the hospital. It was now obvious for me that I needed to go to Arizona and have the surgery before this burst!   I also knew for sure by then that my local neurological team knew nothing about cavernoma and also now knew that when you have a condition so rare, you need not only a good neurosurgeon, but one that specialize in this and know the illness inside and out.

I was SO thankful for these two people.  Christine texted me right back after i answered to her email and told her she could text me anytime and gave her my number. Akiva called me that day too. The two of them while i was still in the hospital. My despair turned into so much hope and happiness.   Why? because 2 people used the internet to reach out to others. Because two people shared their stories and had blogs and facebook pages. Ressources I never found for weeks until i turned into internet and social media!!  Here I was, with a private blog to keep my family updated, maybe 4 people having the link to it because i wanted my "privacy" and i didnt want "attention". What if someone like me was also looking and i could of been an ecouragement and support to them? Fail!

When I was talking to Akiva, he asked me if would let him give my number to another man, from Canada, who also traveled to Arizona to Dr.Spetzler to have the surgery. Of course i said yes, and Peter called me the day I got home from the hospital.  Here is a bit of his story:

Peter


These 3 people were so encouraging, not just with their positive outlook and great personality, but also the fact that they had very decent quality of lives. Talking to them, I learned about the surgery, what to expect, what do not be discouraged over. To be patient!  Because of that, I was not upset one bit when I could not move at all after surgery. I was not upset and never saw it as a burden to wear an eye patch, because I knew i was not alone, but also because it was something to expect.  I was ready to recover. If i didnt die, nothing could stop me.

I had found Peace!
I was going to walk in that hospital with a smile on my face.

I got the surgery scheduled the next day.  We left 2 days later, because it was to take 4 days to get there. haha (we wanted to take our time, drive 8 hours a day instead of 12-14) because i was not in best shape :)  

Everything happened so fast... not mentioning the messed up thoughts we were having about what my local neurologist told me and made us question this whole thing.  It all happened very fast and perfectly orchestrated.

Looking back, I know it was God 's answer to my prayers to let this microscopic bleed happen right when i was asking him for peace. What looked like a cruel joke turned out to be a blessing that few people in my position receive. The fact that i was having such symptoms also made my new friends not hesitate to tell me to have the surgery.  To tell me that recovery would be long but they did it and so could I!   They had no doubts at all that I would be ok and that made me have no doubts as well.

I will never know if i would of gone for surgery after my hospital stay confusion if it was not from Christine reaffirming to me that my trouble swallowing was related because it happened (worse!) to her too!  or if i have not find her and Akiva and Peter to show me that this surgery can be successful with the right surgeon and it might be a long recovery, but its going to be ok!!  I will never know how this would of affected my recovery once i woke up not feeling my body at all and how bad my vision was right after surgery. I would of been scared and not happy and confident like i was... The mind is powerful!!

Before surgery, i opened a facebook page (That Brain Fart )just for whoever wanted to know how I was doing. I knew the day of surgery was going to be very long and painful for my family and it was going much easier for Jay to update them throughout the day.  The way people encouraged us and prayed and were so incredibly supportive had showed me once again that it is ok to share what is going on in your life, especially an event like that. Good people will not think you are seeking attention or pity, they CARE!! They will pray , they will encourage and support you, and you dont realize how much you needed them until you have them!!.    It was so unnecessary to me to agonize over that surgery when i could of shared what was going on and get support, caring advice and encouragement right away!

Dont be afraid of having all the support you can get. I have no doubts that all the loving compassionate encouraging notes I received kept me strong and made my recovery so much better than it would of been if i was alone, not being to share anything because of my own rule of privacy.  The same way you would care and be encouraging to someone who is going thru a tough time, the same way they will to you.

Let them!!




Monday, April 8, 2013

I am alive!

First let me apologize for not writing sooner. I do have a good excuse. I am just now able to type without taking an entire day to write a post. Also, I am pretty sure I shared with you my facebook page link right before surgery so you could keep up with me after surgery.
I had brainstem surgery on March 1.  I was told an expected a very long recovery, waking up not being able to talk, walk, eat, and do much at all.  So I opened the facebook page so my husband could tell you how i was doing quickly and easily.  Facebook Update page 

We have been very consistent at updating my progress and I really dont have the time or energy to tell you all about it, so i really would appreciate if you go read and see the pictures etc on the facebook page. :)) I know you understand and I am really sorry if you thought I was dead because I never told you I was indeed ok!

A very long story short, the surgery went well! Dr. Zaidi told Jay that Dr.Spetzler had to work his magic.  He removed the cavernoma but also fixed another abnormal blood vessel that was there. It was initialy thought to be an AVM.  I woke up not being able to move at all.  I was expecting it and was not upset. I was just happy to  be alive, to be able to see. I didnt have a breathing or feeding tube in place, which is very rare and fortunate after a brainstem surgery.  In all, I knew right then that i was going to be not only okay, but make a very good recovery.  I was ready to start the recovery, work hard and live my second life :)   I amazed myself and everyone when i could raise my arms less than an hour post op and  move my toes the next morning after surgery.  That showed us all that my numbness and the fact I could  not move was not paralysis and I could re learn how to walk. It was not enough to be able to "use" them, at all, and they felt useless, but the fact that I could move, even if i couldnt feel, was fantastic news.  I was so numb you could of skin me (eww) and i would not of felt a thing. BUT I could move my arm and wiggle my toes! So the 95% paralysis I was "guaranteed" from my local neurosurgeon went right thru the window :))    I heard the word "miracle" a few times but even tho I know God blessed me tremendously, i have a hard time accepting that.  Miracles happen every day in small and big ways, and I dont feel like one. I feel extremely lucky, blessed to the point of having some "survivor" guilt but maybe i am just in denial, i dont know.

I was moved from the ICU to the inpatient rehabilitation center 4 days after surgery. They moved me to a inpatients rehabilitation center where i re learn how to walk and do basic things.  I was supposed to need 2 months of rehab, but by week 2, I was strong enough to go home for out patients rehab!   Now week 6 after surgery, i can walk without the help of any devices in the house. It doesnt show how much I work to walk "normal" but its important to me and I am not the complaining type and i dont need credit for things i feel i "should" be doing!  I need a walker or cane in big open spaces but its nice to be good in the house. I need the cane a few times a day especially at the end of the day. :)  My legs are still very stiff and feels weird but therapists showed me they work. haha  I work hard to talk too, to focus on what you are telling me and a lot of other things.  For me, working hard is not only reaching a point where i can do something, but to where i can do something and it doesnt show that I am putting all that effort. Its very tiring, but in the end I prefer that. I think the more you push yourself, the stronger you get anyway. If i laid in the bed all day, which i could totally do with the way i feel, i probably wouldnt be walking as good and looking as "normal" as I do.

Its tricky for others tho.. Everyone that sees me think I am doing wonderful because they say I dont look like I just had brain surgery.  Because i physically am capable and I mentally push myself...and I am the same energetic person.. it doesnt show how hard I work and focus and how much quicky i get tired, its more like a exhaustion from working so hard really.  I am very patient with myself and dont feel sad when its only noon and i am completely out of juice. I know what i just went thru, i feel how i feel, and i know I am doing good. That sound like a complete "brag"... but i guess in some ways because I dont complain and i know i could I am patting myself on the back. hahaha

To know more and see what i am dealing with as far as long term recovery process and permanent nerve damage, please go on that "That brain Fart" page on facebook :)) (my fingers are very numb from typing now)

My mother and sister are here!!! We are so happy to finally be together.  We have never been here together and not been together period for more than 2 days (my grandma funeral last September) for more than 3 years.  I have not been with my family (jay, kids, my family in Canada) since 2007.. anyway....  we want to spend a  lot of that time just hanging out and talking and doing nothing, just the 3 of us.  Relaxing together is sooo wonderful. It was so hard for them to be so far away from me when i had surgery. They want to be with me and just enjoy each other presence. Like they need each minute to be about catching up , talking and focusing our energy only on that.
The weather is beautiful too, gorgeous!! So its sooo nice and we can just go outside and sit and just drink coffee while we chat.  That's pure happiness right there and all we need. haha

I hope to write more now that its easier for me to type!  I obviously cant work for a while. But soon the kids will be home for the summer and I wont have much time to write either haha there is always something right ?!

This whole journey was and have been so amazing. There is so many things i would like to share and go into details. I kept this post very "facts" and with not too many emotions, but it was and still is quite the emotional journey with lots of amazing things happening.

:))

Smile!