Thursday, December 19, 2013

Please help!!



Hi my dearest people whom I love!! haha (did that make sense?)


I will come shortly to post an update, but for now, I really want to encourage you to go on this page, and read this little boy's story. He lives in Kenya.  In August, his father contacted my husband and I, after finding that I had brainstem surgery at the Barrow Neurological Institute. His son was diagnosed with a Cavernous Malformation and was also told Innoperable. His son's condition is deteriorating very fast and as they were losing hope, we offered him to send his son's MRI to Dr. Spetzler. My husband put the file on a disk, and sent it. Shortly after, the father received a letter from Barrow (pictured on the page) that he could do the surgery. However... the parents have to pay for the whole thing by themselves.  


Brian, 8 years old, before his brainstem cavernous malformation started bleeding disabling him

Guys, I know its Christmas and you have all be spending crazy money, some of which you dont even "have"...but if you could find in your heart to give one more 20$, or 10, or even 5... What's that more??   We have to save this little boy. Beleive me, that story has been verified by a Patients advocates agency thru different organizations that are trying to help him too. If money was the only obstacle to have your child's life saved, you would feel both helpless and angry! I know I would. There HAS to be a way.  It can takes months and months for these agency to finally find an organisation or way for a child like this to travel and have the surgery , all paid for... but Brian doesnt have months and months.  This Cavernoma is disabling him , same as it did me... until there are no returns!

Brian with his mother, after his first bleed. He has since had another one. 


PLEASE HELP HERE=====>  Brian's fundraiser page

In that light, i want to THANK all of you who lighten up our own burden by donating to my own fundraiser.  You have no ideas how much this has helped us. My heart fills with gratitude. I can never thank you enough. I cant imagine knowing what could save me, what could save my child!! and not being to have it done because i dont have the money.

Just think... if this could reach 200 000 people, which is so easy in today's social media and world, and everyone gave just 1$... this child's life would be saved!!

I love you guys.


Tuesday, November 5, 2013

The importance of finding a specialized Neurologist


I can never stress enough the importance of finding the right neurologist/neurosurgeon!!   Most of us are clueless about the Neurological world. These men and women study so hard and so long for ... our brain!! How can someone study like this and not know all there is to know about the brain, right? Wrong!! Someone explained to me that the brain is like the rest of the entire body on its own. You won't go see a E.N.T if you have problems with your knee, so why see a Neurologist without knowing what he really knows Cavervous Malformation?   I didnt know that Neurologists specialized in so many different area before.  To me, a neurologist was a brain specialist :)   But that is not correct.  The same way you can go see a Family Practionner that will diagnosed you with a ear infection and give you the proper medicine, a neurologist CAN diagnose you with a Cavernous Malformation and guide you, but if he is not truly deep into the subject, like your Family Dr. not a E.N.T, chances are he is going to be very limited despite his general knowledge.  A neurologist that studied more deeply to help people with Cavernous malformation, AVM, abnormalities within the vascular system in the brain, is specialized in "vascular disease".  


When I found myself short of breath with non stop heart palpitations,  struggling to regulate my breathing and couldn't swallow following a very strong vertigo episode last February, I ended up in the hospital for 2 days, with 3 neurologist telling me my symptoms were not related to my condition.  I was told I had a "anxiety attack". At first, I was furious. I do not have anxiety.  Then, being repeatedly told this, I thought "maybe I do have anxiety? How can they all be wrong"?    When I got to Arizona and we told Dr.Spetzler assistant this, he was speechless.   How can all neurologists know that the brainstem control all these things, see that there is a Cavernoma on my brainstem, and say it is not related? Because they learned this, but they also know "if the brainstem bleeds, the patient dies". That's it. I was not dead.  I was there begging them to help me, therefore, it could not be related :)      





It even goes deeper than that... where exactly in your brainstem is it located?   Different location affect other things as well.  




Click here to learn about Brainstem: Pons
Click here to learn about Brainstem: Medulla
Click here to learn about Brainstem: Midbrain

Click here to learn about Brainstem: Thalamus


"Located" can mean "in" it, or next to it. Its one of those complex world where it does not have to be inside of it to be affected by it.  I found myself having all those symptoms, because the brainstem is so small, that it doesnt need much blood to spread and affect all surrounding areas.


Not only is it SO important to find a neurologist that specialize in the condition, but finding one that is familiar with the location of the Cavernoma is not only important, but crucial!   That's where Dr. Spetzler came in. He is the number one neurosurgeon in the world when it comes to Brainstem surgery.  He has done more than anybody  else in the world. To him, operating in the brainstem is not only something he is used to, its routine!  That's what he does, simply because people from all over the world come to it for that.   There are so many amazing neurosurgeons out there, but  when it comes to the brainstem, no surgeons has done it more than Spetzler.   However,  there are some times when even Dr.Spetzler wont operate in the brainstem.  By his nurses, I was told there are 2 reasons:

1)There is no way he can take the cavernoma out without leaving you with a very high rate of severe deficits now, to the point that you would be worse off then just leave it alone to run its course.  In other words, why get yourself in this situation now if you still have years of decent quality of life ahead.

2)Your health is so bad right now, and your condition so poor, that the surgery will kill you... so why die now?

When I was told surgery was an option for me, the hardest, as you know, that it was a damned if you do, damned if you dont.  He told me that he could not tell me what was best.  However, If i chose surgery, I had a very high risk of deficits, but my chance of survival with the surgery was much greater than the 1% I was given if I didnt do anything.  It was incredible hard to choose surgery "now"... knowing that maybe i had 5+ years left until this happens naturally. Did I really want to live with deficits now, or did i just want to die later.... Being a mom naturally determined that for me.   I was completely ready to go thru this recovery and slowly regain my quality of life.  Knowledge is power, but you have to dig to find it!

All this said, I had to find a neurologist to follow with since I came back home.  I need follow up MRI's every year and a neurologist to follow with when it comes to my recovery, symptoms, deficits... even if that ends up being just one visit a year :)  My neurosurgeon here was great. He was not specialized in Cavernoma or Brainstem lesions, but he was great and caring.  However, a neurologist is what i needed to find, not a neurosurgeon.   Did I want to go back to the Neurologists that told me it was having a anxiety attack because they couldnt see the bleeds on their Scan, because they only way to see a drop of blood in the brainstem is thru surgery?  NO.  So, i didnt want to see them again. I am not bitter, I just didnt want to waste my time telling them they were wrong. hehehe    So, thru my facebook page, I was told about a very nice neurologist group in Dayton, Ohio.   They needed a referral from my Doctor in order to see me, so i called my Doctor. He is the one that referred me to my neurologist so i simply told him that she was not specialized in my condition and couldnt help me much. He didnt hesitate, and apparently he faxed my stuff right away and referred me because the Dayton Institute of Neurological disorder called "me" and gave me an appointment. I saw him yesterday and will write later about the appointment.   I was more than happily surprised to find out he is a "Specialist in vascular and interventional neurology".   It was a very nice appointment. He was very excited to follow one of "the man" (Dr.Spetzler) patient.  I will write about the update later.  I can tell you that I apparently had to go all the way to Dayton to find a Neurologist that understood the power of a cavernoma in the brainstem and the effect it has on it versus a anxiety attact. hahahaha  

Wednesday, October 9, 2013

Cavernous Malformation Info page


According to The Mayo Clinic, this is the definition for "Cavernoma":


“Cavernous malformations are abnormally formed blood vessels that have the appearance of a small mulberry in the brain or spinal cord. These malformations may be hereditary or they may occur on their own.
These malformations may leak blood, leading to bleeding in the brain (hemorrhage). This can cause neurological symptoms, depending on the location of your cavernous malformation in your nervous system. Your symptoms may include weakness or numbness in the face, arm or leg, unsteadiness, vision loss or double vision, and difficulties speaking or swallowing. Seizures also can occur. Repeat hemorrhages may occur soon after your initial hemorrhage (within weeks) or later after your initial hemorrhage (many months or years later), or repeat hemorrhages may never occur.”



Its a good explanation, but its vague. I found this information over and over again when I was looking for more answers.   Its only later, talking to more people, that I found the importance in the details!    This said, I want to share in my own words, what I do know about my condition.  Nothing in here is going to be said perfectly with the precision of a medical book. However, its all true. haha  I want to explain, in simple hillbilly words, what this all means.   The reason I want to explain in my own words, is simply because when I was researching for myself, I found it very vague.  It took me months to fully understand all the variable in this.



I was often told "Oh, I know this person, She has the same thing as you", and I would get very excited at first, because it is such great support to know someone that understand what you are going thru. However, i quickly would find out that this person never had a bled, or never been told inoperable, or never been told she was going to become a vegetable over time etc. etc.


All this information is from my own findings and understandings. I am trying to summarize the best I can information that I wish I had. It was so difficult to understand exactly what was going on, because there are so many variant in this.  I will be including different medical links from medical sites at the end of this post :)



First, a Cavernous Malformation goes by different terms:


-Cavernoma
-Cavernous Angioma
-Cavernous Hemangioma
-CM (Short for Cavernous Malformation)
-CCM (Short for Cerebral Cavernous Malformation)
-Brain Fart  (Kidding, I made up this one, but my loved ones know its the Cavernoma)  

(Quick side story: My mother is french and uses a translator to type english.  She is a big fan of Chuck Swindoll. She sent him a letter to share the power of prayers concerning my journey, surgery and recovery with my brainstem Cavernoma.  In her letter, she said “My daughter had a brain fart”, bla bla bla… hahaha Because she thought that me using “brain fart” really was the right terminology for Cavernoma. Poor mom…hahhaha )


When I was first diagnosed, I found it very difficult to find information about Cavernous Malformation. I have never heard of them. I initially understood what it was, but there are a lot of things to consider about a Cavernoma. I quickly learned that the severity of it depends on 2 main factors:


1-Location: where is it located in the brain, and
2-Has it bled and/or causing symptoms.


The majority of people with a cavernous malformation will never know they have one. This is simply because they are usually asymptomatic, which mean, without symptoms.  A lot of time, when people do find out, it is because they required an MRI of the head for something different, like a concussion, or any other doubts the doctor may have, like mine for instance, thought I had MS. I did however have symptoms, which is why I got the MRI. People who find out by accident usually don't have symptoms. When people do learn they have a cavernous malformation that has been inactive, they are referred to a neurologist right away.  Usually, the neurologist will just monitor the inactive cavernoma, with an MRI every year or so. They older you get without a symptomatic  cavernoma, the most likely you are that it will remain that way.  It can be very scary to know that you have a cavernoma in your head, knowing the damage, or death, that it can bring to you, or your loved ones, if it decides to "become active".   There are no way to predict if its going to bleed or not, and when. Most neurosurgeons will strongly to leave it alone if it had never given you any problems/symptoms, no matter if it is on the surface of the brain, deep in the brain, or in the brainstem.  





However, if it is found that the cavernoma has bled before, depending on the location of the cavernoma, the neurosurgeon may suggest surgery, especially if it is near the surface of the brain, like Cerebral cortex, Frontal lobe, Temporal Lobe, Parietal lobe and Occipital lobe. These areas are considered easier of access and most neurosurgeons is confident about his ability to operate there. The deeper you get, the riskier it becomes, and the less surgeons willing to take the risks.  The Cerebellum, for example, is part in the midbrain, part in the deeper area of the brain, so depending on where in the cerebellum your cavernoma is, your surgeons might give you a choice to go for surgery, or wait.  It gets deeper, like the Hypothalamus, Thalamus, Amygdala and Hippocampus. These are very often labeled as "inoperable". Finally, you have the brainstem, which is always considered inoperable, simply because the risks of severe deficits  or death associated with surgery is usually so high, that most surgeons will tell you that the only time when surgery should be performed, is if you already have a very poor quality of life.




Something that we also don't hear often, is some area of the brain where the cavernoma is located  are most likely to bleed than others.  Ironically, the location that is most likely to bleed, is the brainstem. It is also the most dangerous, or very often deadly.  A cavernoma can bleed very slowly, or burst. When it burst, it most likely results in death, or very severe  handicaps, including paralysis, blindness, loss of hearing, loss of the ability to communicate, which means you are mentally there, but you look like you are not.  The brainstem is like the cable that connects the computer to the computer screen. They can both be separately functional, but without that cable, they cannot work together.  


A cavernoma that has bled once has a higher chance to bleed again. The longer it goes without bleeding after a bleed, the better chance it is that it will not bleed again. However, if it bleeds lets say in 2000, than 2005, than 2006, chances are that it will bleed again at closer and closer interval.  The size of the cavernoma does not indicate if its most likely to bleed either.   As a matter of fact, a cavernoma often will get smaller right before it fills up with blood and bleed again, like a sponge.   



So, all this said, Cavernous Malformation has a big window of options.  If you have been diagnosed with a cavernoma, Please do ask questions.  Knowing you have one is not enough. You need to know where in the brain is it, and if and when it bled.  Also, not all cavernoma that has not bled are without symptoms, The deeper in the brain it is, the more sensitive the surrounding areas are.  The pressure given by the cavernoma alone can give you symptoms. This is not to be taken lightly. If you notice an increase of symptoms, or increase of their intensity, it could be that your cavernoma is filling with blood, adding more pressure, or dripping blood . The list of symptoms can go on and on, simply because our brain does everything for us! Depending on where the cavernoma is, I could be listing symptoms forever!! Your symptoms are most likely to be related to which area of the brain your cavernoma is located and the surroundings. If your CM is in the brainstem, I am sorry that your symptoms can be anything, so when making your list for your Doctor, do not let out anything. I had symptoms of loss of balance, coordination, fine muscle control, memory, speech, hearing, emotions, way before my breathing, swallowing and heart beat were affected. My blood pressure has always been perfect tho!







Red Sox Player Ryan Westmoreland
had a Brainstem Cavernoma!
We have all turned on the tv, and heard in the news of a young man or woman, dropping dead at a sport practice or event. How can someone so young , such in good shape, just die like that. We right away think "heart attack", but we are wrong. Brain aneurysms and strokes are very often the guilty one.   When we do find that out, it stops there. We don't search further.  But did you know that brain aneurysm and strokes usually have a cause? Arteriovenous Malformation (AVM), Cavernoma, Other types of brain malformation. Heart attack can cause strokes, its not because someone has a stroke that she/he had a heart attack.     



I was working out when I had my first major sign that something was really wrong.   Even tho i had worked out for years, all over sudden, I got very dizzy, nauseous, and simply could not go on.  Most athlete are used to pushing themselves to the limit. They are not the whiny type, complaining of any difficulty and quitting. They push thru it. I was fortunate to find out I had a cavernoma when I did.  I was told to not do any physical activity that raised my heartbeat and blood pressure. Why? because "you can have stroke", my neurologist told me.  This happens a lot more to active people, than not so active people. So please, if you have been diagnosed, as much as you love your workout, pick one:  Workout, or Stroke.  Sorry, but that's reality. It was quite a reality for me also.  My body (should I say brain) was so sensitive to any change in pressure, that I only had (still do) had/have to carry something like a laundry basket 2 flights of stairs, or clean at a good pace for 10 mins, to feel violently ill.
The difference with now, is that I know I don't have a cavernoma in my head that could pop.  


What about surgery?  

The brain surgery to remove a CM is called "Craniotomy".


Immediately after surgery
When i first found out I had a cavernoma and it was bleeding, I quickly found a blog written by a lovely lady, who described in details her surgery and the few weeks recovery. I was a bit scared by it, but mostly encourage. She was ok!   I was not prepared to hear "inoperable" by my first neurosurgeons, because my neurologist first words to me was "You have cavernoma and you need to get it out, it needs to come out".  So after I read about that lady's brain surgery, i was prepared.  However, once I found out my cavernoma was in the brainstem, all i found online was "inoperable" or "horror stories"  In the end, I did find some successful stories, and have since met several thru support groups etc I went from researching google from "Brain surgery recovery" To "inoperable brainstem surgery", and trust me, this information has  night and day results.


8 weeks after surgery
Details. Details. Details.   Do not leave out ANY.  Its like comparing stage 1 breast cancer patient to a stage 4 pancreatic  cancer patient.  As loving and nice as can be stage 1 breast cancer patient to tell stage 4 pancreatic cancer patient "I have cancer too, I understand", please dont. Its the same "condition; cancer", but it really is not the "same", is it.  I dont mean to sound cold by pointing that out, i am just showing how much details are important here.  Cavernous Malformation are a  lot like that. Having a cavernoma on the surface of the brain, that never caused any symptoms, is NOT a good thing. Its scary and can be dangerous if ignored, but its not the same as having seizures and strokes or death from a deeply seeded bleeding one.  Be informed. Know exactly what you are up against.

The same goes for a surgery recovery.  It all depends on "where" in the brain. Some patients go home on day 3 and back to work a few weeks later, while some patients needs to go to inpatient rehab, outpatient rehab, and can never work again. Dont be prepared for "Brain surgery recovery", but be fully prepared and know what to expect for "your cavernoma l.o.c.a.t.i.o.n brain surgery recovery".  


What a huge difference!


Knowing you are going to have your skull saw open is a “ewww” thought. haha Researching for this, i came across some pretty gruesome scar pictures.  Some were on top of a shaved head, some on the side, some following the hairline on the forehead. So many differences. Some were shaved, some were not.  What I discovered after some times reading, is again, this all depends on the location!!  The deeper you get, the lower the scar will be.  For example, my scar is way at the base of the skull. Because my cavernoma was on the right side of the brainstem, my incision was made by the right ear, started at the top of the neck, going above my ear. However, the incision is bigger right at the starting point; this is where they stretch the scalp to get to the skull and brain.  Sounds lovely!  Surgeons used to shave the whole head of a patient ready to undergo a craniotomy, but not anymore.  I think it depends of the Doctor, too. I had to wash my hair with a special shampoo they gave me, that smelled like alcohol, and they told me they would shave as little as possible.  However, I knew that If i woke up with half shaved, I would shave the other half myself. haha But turned out I could hide the scar with my hair. They shaved so little!  When I was in rehab, this lady had half her head shaved way on the top.  A therapist joked with me saying “Yea, people who don't need to shave their head are usually the one needing more rehabilitation because the mass was so deep, and those with no need for extensive therapy needs emotional therapy for having no more hair.” haha  One way or the other, brain surgery is no fun.


All of this said, the best advice I would give you is ask a lot of questions about your CM to your Neuro. Think of it as if you were told you have cancer. You would want to know where is the cancer, what stage, and so many other questions would go thru your mind. Do the same thing about your cavernoma!!  Don't stop until you know everything about it!!  

Here is more information about Cavernous Malformation:


--Cavernous Angioma on the ANGIOMA ALLIANCE website.
--Cavernous Malformation on THE BARROW NEUROLOGICAL INSTITUTE website.
--Cavernous Malformation on WebMD


Learn more about Craniotomy (Brain surgery to resect a Cavernoma)  
Read about my surgery experience.
Read more Success Stories

Monday, September 30, 2013

Letter from your brain


I have been struggling lately with the realization that even on good days, (meaning when I think I can do things the way I used to) I literally will feel ill after just a few tasks. Tasks that were always so natural, so common and things we all do just because , well, it has to be done! It shouldn't be a chores, and certainly not an "event". Bringing laundry baskets from the basement to the second floor type of task, let alone de cluttering a closet.  It's hard not to get frustrated at this new "cant do much at once" me, when I was the kind of girl who could turn an outdated play room into a kids hangout in an afternoon, or clean a 3000 square feet house in 3 hours as a high energy cleaning lady.

I know that my recovery has been amazing, so I don't need reminders of that; I know it, I fully am so thankful. It didn't take me a year to walk again or to drive again like "most people", as my OT and PT told me. I am so grateful that I feel guilty!  But with that, comes the feeling that I SHOULD be back to normal.  Because I look normal. Because I drive. Because I walk without a limp (most days). Because I have an amazing quality of life 7 months post op. People look at me and think "Oh wow she is back to normal".   But what is normal??  I don't like that word. At all... Who defines "normal"?   I do understand tho, I truly do, but people who have gone thru brain surgery would totally agree with me that we are never going to be back to "normal", the way it was.  Its about the NEW normal, which let me just say, is even better.  Better because I know more than ever what is really important in life. I know that what as a society we consider "normal" is in fact just an opinion that we have, an ideal that has been placed in our head by this robotic society of being, and doing, what we were taught we are supposed to be/do.

That said, in working so hard everyday at my speech, my walking straight that fools my balance issues, my visions that is inconstant, my inability to use my right hand "normally" (dropping things  and make pen and small object fly is a daily event) and so on... these are all things that do not "show". They have become Normal to me. Its my new normal. As normal, I mean I don't think about it. They are becoming natural, instinctive, like any "normal" thing.  I wont talk about the confusion, memory loss and other things I have yet to "get used to."

The things that I truly struggle with, are things that only the people closest to me truly noticed.  If I was a person that enjoyed sitting on the couch watching soap operas, let the house become a disorganised mess, I certainly would feel like I am totally back to normal.  Sadly, that is not the case.  Its very hard for me to see all that needs to be done and a slight attempt makes me sick, bringing back my old symptoms, plus new ones.  At first, I got a bit worried, because I thought something was wrong.  After I had a simple partial seizure after an attempt to jog with the dogs, I thought "oh no, is this thing coming back? is there a postpone operation problem?"   but as I did some reading and asked my beloved support group friend, a dear lady sent me that letter "Letter from my brain"... and I understood right away.  What I experience in my attempt to "get back to normal" is totally normal.   Reading this eased my fear, but brought on somewhat of a sadness, a helplessness to realise that this is real... this "energetic, can accomplish so much in so little time" old me, is gone... at least for now.   Is she going to be back? I except her to. When? I dont know.   I was told that after one year of recovering, what you have not recovered, is what you are left with. However, I also know that the brain is amazing at healing itself and I will never stop trying. I cant change who I am. I feel like I am stuck in this body that is not mine. Well, i dont "think", i know it is!  Its very very insignificant compared to people that are paralysed, even some with the inability to communicate.  This is so common with brainstem/deep brain surgery that I was indeed not only prepared for it, but expected it, going in for my surgery. So, I know that this "energised, want to get things done" person inside me just need to accept that she can still do that, but be satisfied with doing so at a slower rate. Maybe I cant fix that basement in one afternoon, but one month is great!

All this said, reading this letter truly put things back into perspective, and its a beautiful thing :)  




A Letter From Your Brain



Hello,
I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.

As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.
I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.

How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?

Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.
What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.

I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.

I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.

I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.

Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.
Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.

Love,



your wounded brain


©1996 Stephanie St. Claire


May be reprinted for personal, not for profit use.


Livetulaff@aol.com


Tuesday, September 24, 2013

The guilt that comes from being Blessed

:*( Please keep this little guy in your thoughts and prayers. He is only 11 years old. He woke up screaming with the worst headache of his life. His parents knowing what it could be, called 911 right away. As they waited for the ambulance to show he was trying to speak. He felt nauseous, and he started to stiffen up and moaning low trying to breathe. On the way to the hospital he stopped breathing. He had a brain hemorrhage. A local emergency craniotomy was performed. He is still in a coma.



Here is the update from his mother:


"The doctors really don't give us any hope but we refuse to give up on our son. He is only 11 years old. Our hearts are broken, and we are so confused as what to do. I know i could never live with the fact of knowing i played God and ended my own child's life. Even the thought makes me wanna throw up. So we have decided to go the other route to give him time. Has anyone here been in a similar situation? I don't really know what to expect. I know he will be in some pain after the surgery. I just want the best for him. Has anyone had their child on a ventilator for a long time? If you have any helpful information for us please help. Please pray for our son. and follow his facebook (Roy Vasquez Jr) if possible. . Thank you"


I cant really explain how news like this makes me feel.  Every day, I feel blessed, not only to be here, but to know how fortunate I am to be here in the state I am in.  The way everything happened, the order it did… my diagnostic, my crisis, my surgery, my recovery… everything!!   I KNOW how blessed I am…


but when i hear stories like this… I feel … guilty.  Not an “its my fault” guilt, but a “why me and not others, a child??”  There are so many things that cross my mind…. How blessed I am to have found out about this time bomb before it completely explode… how blessed I was with the way everything felt into place.. the people put in my way, finding Dr.Spetzler, the timing of things… (you can read here:  a series of unfortunate events)  I feel blessed...but the more blessed I feel, the more guilty i feel, too.  


When Dr.Spetzler's assistant called me after viewing my scan, he told me that they concluded that I had a 99% chance of having a devastating hemorrhage between now, and 5 years.  They could do the surgery now, and risk major handicaps now, but death was at a much greater risk to occur if it hemorrhaged on its own.  He did not tell me what I should do as it was a risk now and not know the outcome, or just wait until it happens on its own any day and  not know the outcome.  He said "damned if you do, damned if you don't".  When he called me, it was 8pm and Jay was sleeping before he works at midnight.  At first I was shocked to have such a quick response, because I sent my MRI just 2 days earlier. (overnight shipping, at my friend’s demand)  He couldn't tell me what the best decision was. He asked me if i was having this or that symptoms. He sounded … discouraged. I could tell he didn't want to be telling me these things…  and the prognostic was grim, yet, I could tell that he was trying to tell me “do it , do it”  (the surgery) He told me that according to my symptoms, my cavernoma was very active and it would be devastating before we knew it, but it was indeed one of the most difficult situation to be in, because the surgery was as risky.  It was not a matter of “what” but a matter of “when” . If I let it go in hope that i still have 5 years, or that I belong in the 1%, I would most likely end up having emergency surgery by a local neurosurgeon that said "80% death, 95% very severe deficits, nursing home type of deficits..." I knew that if i didn't risk now, later would come soon and that would be my fate. I knew that surgery was the best option.. because it might happen “now”, but my chances with this amazing surgeon were nothing compared to the ones that would be performing the surgery whenever this thing burst.  It was better to become disabled now, than to become a vegetable later…   It was very painful to know that I was willingly going to lay down and wheeled into a surgery that was going to disable me, just so I can live and see my children grow up, but it quickly came the only choice for me... I picture myself in a wheelchair, with a white board to write, and not in a nursing home, not looking or acting like myself, not even knowing who I am.  It was a lot to take in, and my head was spinning, because phone conversation did that. They still do… however, I don't remember what I told Jay later that night, but I am pretty sure I made it sound as positive as I could. I remember not telling Jay all the bad statistics and news. I didn't find it necessary. They were not going to change the outcome. I never told my parents, either.


That said, as painful and difficult that was... I do not feel special to have thrown myself willingly into a future of disabilities.  I simply didn't want to have my husband have to tell his children that their mother was not here anymore. Friends made me understand that my children would much rather visit their mom in a nursing home, than a graveyard.   I do not feel brave, or courageous. I feel like a mother.   At the rehabilitation center, I was always heard laughing. I didn't realise how loud I was until I heard a patient there ask "why is this lady always happy, how can she be so happy in this condition" (I couldn't even get myself in my wheelchair by myself yet)   I told the nurse "Just tell her that i am just... happy! I accepted the worse and was at peace with it, so this is just pure happiness for me, plus my husband is a goof ball"  and its true. I also didn't expect any big milestones. I was going to do this day by day... which is ironic because I did achieve milestones so much quicker than anyone ever thought possible.  I never worried, was not stressed, always laughing to the point my belly hurt. I think some studies have to be made about the healing process... haha naturally think that nothing is wrong with you heals what is actually wrong with you. hahaha


What I do feel now, is guilt. I cant help it... Over and over, and over, I hear  of people that DIDNT know they had this time bomb in their head. If it was not from my physician that sent me for an MRI, I wouldn't know. I would know how i feel, and probably prescribe a bunch of meds, but I wouldn't know why, because MRI are not something doctors send you for easily.  I, too, would of had a massive hemorrhage, have surgery and have this outcome. Knowing about this was a curse at first, but its a blessing  too few with this "tumor" have.   The guilt, is what some called "survivor " guilt... but to me, its more than surviving the surgery. I may of survived the small hemorrhages before my surgery, but its not like I did anything... it could of been massive any of those times.


I am not even sure guilty is the right word... its more like a deep sadness... because I now come across people, children, that didn't know... didn't have "warnings"... BOOM!  Brainstem cavernoma are so rare...and yet some cavernoma in other parts of the brain that can be easily operated on... if they explode and cause a massive hemorrhage, it will do as big of a damage. Sure its small, it will simply be removed, and that does happen to a lot of people... but if you didn't know and it just burst..... SO... I know i am thinking deep here... and i really shouldn't, but when i read stories like this one... I cannot understand why I am where I am.  The irony of it all gets overwhelming to me.  At the same time, on February 18, when I found myself struggling to breathe and swallow and couldn't fell or move my body for 6 hours, I knew what this was, and I had just decided to go get the surgery in Arizona. I was aiming Fall of 2013, after the kids go back to school. I was in the ambulance feeling worse by the minute, really bracing myself to pass out any minute, knowing it was the end whether I die or wake up "gone".  But I didn't. It was a bleed so small the local hospital didn't find it and called it "stress". Spetzler found it when he did what he does best; play in people's brain.  


I soon realized that what I thought was a curse was in fact a blessing… the answer to my prayer, as I have been begging God to give me Peace over the choice I have made to have surgery now. I thought surely, God was not going to allow me to have a massive bleed now before my now scheduled surgery  6 days later.  I was totally convinced of that. God didn't allow all these circumstances to fall into place like this, and cut it short, like some type of bad jokes.  In the ambulance that famous day in February, that is what I kept repeating to myself in order to stay hopeful and positive.  At first, I was sad, very sad and said “Not now, Not now” because I thought for sure I was having a massive brain bleed. I couldn't feel my body or move at all. I really felt like I was going to pass out any minute, and I knew that once I would, I was not going to wake up the same, if i did wake up. I knew that this meant, that even tho I had found a surgeon to do this surgery better than anyone else in the country could, I was destined to have local surgery by the surgeons that condemned me, and have a life of disability. So I prayed… I prayed that God gave me the strength to accept that.  I saw Jay sitting in the trauma room, and he put his head in hand. He is a tough guy. He never showed me that he was scared, or even worried. I know he loves me dearly, but he just doesn't show that kind of emotion. At that moment, I saw how scared he was, and it broke my heart.  I don't know what they put in my IV, but I felt better not long after that.  I felt a very weird sensation in my head, like a very cold droplet of water. Its almost as if I felt it disintegrate. Somehow, I knew I was going to be ok, for now. But I was scared… I had experienced how quick and strong this was, and I knew that it could happen anytime again.  

It didn't.   

It didn't happen. I had surgery, and I am fine.  Why me, and not someone else?  What is permanent and i will have to deal with for the rest of my life… if they fell upon me out of the blue, I probably would of been miserable.. but because they came to replace much worse, I see them as a blessing.  


…. Please pray for that little boy...

Friday, August 30, 2013

A bunch of sickos

You all know that I am now officially screwed up in the head :)~ I always knew that, but its now official. I mean, I can feel the screws, so dont need to be nice, I can't deny this one. Hehehe

 So I am screwed up... and its been a house full of sickos... the stomach virus that is. Holy Moly... Fun times... It started with me, then Zachary (He missed school yesterday and is home today) and now Angelina (she is home today)... now to see who else is going to get it. I am hoping that the oldest son, the husband and the mother in law wont get it, but when it comes to stomach bugs, that is more than wishful thinking.


This hit me hard!! I will never forget what it feels like not being able to move at all, or walk, or just to be very very weak.  My legs never regained their super strong strength, yet, but this bug got me drag my feet. That makes me think... I miss having strong legs. I know I'll get there again, but I was always so active! Gym, walk, run, hike; on my feet all day long. However, I was told that is why I didnt take a year to walk again, so I will never, ever, ever complain about that. If I didnt have the leg muscles that I had, who knows maybe I'd still be using the walker. So... when i feel sad for myself that I cant run, or that a simple fast pace walk kills my legs, i remember how much weaker they could be, and I am thankful! If being sick is what it takes to really see how blessed I am, so be it :)


I started walking the dogs every night for about 20 mins. They love it, of course, and its a very big workout for me. I would be tempted to bring my cane if it was not from having to hold the leash. I never use my cane unless i have to walk fast (as i need support) or i am having a very bad day, which is getting rare. However, the dogs pull the leash just enough for me to have to hold one and somehow they balance my lack of balance. hahaha Let's call it Self Home Therapy. Who needs outpatient therapy anymore! haha


Well, I have to take care of my sickos. I hope they never get screwed up in the head like their mother, but i will deal with them being sickos :)

Sunday, August 25, 2013

One Time Fundraiser to Meet Expenses and illness life changes.





One Time Fundraiser to Meet Expenses from Lisanne's Surgery

In May of 2012, Lisanne was diagnosed with a cavernous malformation of the brain. After visits to three neurologists and two neurosurgeons, her only answer was that she had an inoperable mass near her brain stem that, one day, would most likely lead to a fatal bleed. With the help of her friends, Lisanne continued to pursue her medical treatment. She refused to leave her children without a mother, no matter what the risks were. She located Dr. Robert Spetzler at the Barrow Neurological Institute in Phoenix, Arizona. In February of 2013 we drove from Cincinnati, Ohio to Phoenix and she underwent surgery on March 1st. Her recovery has been slow but consistent. It is unclear when she will be able to return to work and, although our insurance was very generous, the expenses have been overwhelming. Sometime people who have never felt the need to ask for help are forced to realize that they are in new territory. Our family has been blessed that Lisanne is out of danger and on the road to recovery, but the outpouring of compassion from friends and family have displayed that God works through others. Thanks to all who have contributed to her recovery, and may God bless you and your families. All extra funds will be forwarded to the Barrow Neurological Institute.

John Klute


Thursday, August 22, 2013

Back to Civilization


That's what I like to call it :)  I love home. I love my hometown, but it is so far away, in the middle of nowhere...and considering you still have to make a 9 hours drive to go home if you flew to Montreal Airport... by the time you get there, you do feel that you are in the jungle somewhere. :)  



Kedgwick, NB, Canada

The kids and I had such a great time. I saw people I didn't see, some in 20 years, some in 12, others in about 7, the last time I took the kids there. Of course every body was amazed of how big they got.  Our first week there was nice and sunny, but the next 3 were chilly and rainy. We still had fun, as this trip was more to be with loved ones than to play tourist.  My sister and her boyfriend joined us for 2 weeks, and we had a blast, the whole family there together.  Only Jay was missing, but us siblings where there all at once.

My sister got the kids a great gift. Zip Lining on top of Grand falls waterfalls. haha  They saw online where it was, and I thought for sure that once they saw the falls in person, they would back out, but nooo they got even more excited! I was scared to watch them do that!! Their joy and excitement was contagious tho!   They did great, Angelina even letting go of the handles and putting her arms in the air. haha However, I had a few seconds there where my heart stopped because once it got time to Zachary, the wind pushed him back way in the middle of the Falls. He was dangling there, not being able to move forward.  They had to go "rescue" him.  However,  he was so calm and even smiled at the camera. Later, he told me "I was scared at first, but I chose not to be scared and so I wasn't" haha  I guess me telling them that everything we control about ourselves, from actions to emotions, is a choice, worked.   Here is the video :) 


We don't see on the video the view I was seeing from the side. Here it is. It's beautiful, but seeing my little boy hanging on top of it... Hmm I Chose not to be scared too :)   I was very proud of my "not scared little boy"



This is my sister on the picture. But it shows you what it looked like.  :) 

Car... ahhh Car... About 100 miles before I got to my hometown after driving for so long, the car broke down... I felt pretty stupid that I was never prepared for something like this. I don't know how to handle Towing, insurance, and all that stuff.  I was helpless... However, as helpless as I felt, on the side of the highway with my kids, in a 90 degree heat (it gets super hot in the car let me tell you) I only had my local car dealership in my phone contacts, so I called them.  They gave me other numbers to call, and I was on the phone for a good hour with a lady that was trying to locate me. haha I am sure if she was bored, I made her day :)  A towing finally came to get us. When he called me to confirm that I still needed him, I told him I had 3 kids with me. He was pissed because they didn't tell him that. They were supposed to call a taxi for me when I mentioned  I had 3 kids with me.  So, he said "Let me ring my girlfriend, she is swimming at her friend, but I know she will want to help out and she can come pick you up and take you to St.Leonard (where my dad was going to pick us up) , and she did!!!  " I am Home!" I thought... witnessing a "no problem, not complicated, quick help response"  I was so thankful.   Not only that, but instead of taking my car directly to the shop, he followed us to St.Leonard (30Mins away) just to make sure I could take out all the luggage I needed.  The towing was still in the gas station parking lot when my dad showed up, with this worried look on his face.  I never panicked or create a fuss/drama on much of anything, so I think that the fact I was happy made him feel a lot better.     

Long story short, the car was at the shop the WHOLE time I was there. Not only that, but was late too... It was only 3 days late, but to me that was a huge difference... it meant that I had to come home very quickly instead of taking my time like I did on the way up.  I need a lot of breaks.... more than I thought. Driving 5-6 hours a day on the way up was just right, to my limit on those days even.  I certainly pushed myself on the way down.  It took us about 15 hours in the car per day, for 2 days.  Its supposed to be a 22hours ride non stop, but I needed breaks every hour and a half about. However, the kids needed it too, they did fantastic, and in the end, we are alive and well. 

This sums up a bit of my "now that I survived this thing, I need to go see all the people I thought I'd never see again" *giggle*  trip,  here we are home. 

The kids started school yesterday.  They are all going to different schools now. Angelina is in Elementary, Zachary in Middle school and Sebastien is a Freshman in Highschool.  In fact, I just asked you "what are you again?" haha because I keep forgetting... I know... bad huh?  I don't know why there are things, that no matter how often I asked, and how hard I try to remember, I forget!  Words, Numbers, Names, Places, Dates... you would think that I never forget any information about my children, but I do...  I often think I am 33, not 35. Wait, am I 33? Yea, Yea I am :) 

Talking about Memory, I guess that brings me to a post surgery update!  Well, I would say that it has stalled as far as progress go, but after 5 months, I have reached milestones that some people take much longer than 5 months, if ever.... so I never feel sorry for myself for the issues that I do have. Never.  Writing is still very , very hard, both in writing itself to make it readable, and also how my hand "dies" after a few sentences. So If I fill out a kids form for school (Boy we know about those this time of year) I have to take a break when I realize I cant form the letters anymore.   It does look okay, like a second grader. If my hand didn't get so stiff and numb after such a short time, maybe I could get better.  Its still weird to me to see my old signature, or writing on my recipe cards for instance.   

I can get quite confused at time... if I have to think of something that is detailed, or I am trying to explain something complicated.  I just give up, and say that I have a brain fart. haha 

The tinnitus is the same.  I accepted the fact that I will never know complete silence again.  When there is a lot of noise in the house, or public, I do have to leave a room, or tell the kids to keep it down some.  More than 2 different noises at a time make my brain fog, literally.  It really is 3-4, because my head rings 2 different tones, sometimes 3.  Sudden loud noise plainly hurt, like a knife. Like my dog bark! Urgh.  You never hear me complain about it tho.  I don't expect to people to become all quiet around me, I just take a little break when it gets too much for me :) 

My head... ahhh that's a weird one.  My neck ,right at the base of the skull, as been hurting and is so sore. What is weird, is as much as it hurts, it feels so good to give it a good rub. Its a mystery. I saw the Doctor today about it, and he said its Nerve pain. They are "waking up". They were just numb from the surgery, and because they got to my brainstem cutting from the base of my skull to up my ear (right), and they went all the way thru the brain to reach it, a lot of nerves there were affected. It's called Sensory Nerve Damage caused by "trauma".  

Sensory nerve damage may produce the following symptoms:
  • pain
  • sensitivity
  • numbness
  • tingling or prickling
  • burning
  • problems with positional awareness
In some instances, people with nerve damage will have symptoms that indicate damage to two, or even three, different types of nerves. For instance, you might experience weakness and burning of your legs at the same time.

He gave me a prescription for a medicine that relaxes the nerves. If that doesn't work, I will have therapy.  To tell you the truth, I would of preferred Therapy now instead if medicine. I don't like taking medicine.  To me taking medicine just to cover a symptom is like putting  a band aid on a broken leg.  I'd rather fix the problem instead of masking it.  He is the doctor that sent me for my MRI in the first place instead of doing like so many Doctors does and say "oh its nothing, just go home and take it easy". So I trust him. :)  

My legs that were not supposed to walk again, walk just fine. They are still stiff, and they get tired very easy. I needed to start using my cane again on days that I just was around all day, running errands, etc. I don't do it often, but on particularly busy days, I need it. My legs just hurt. I alternate the cane to give each leg  a break.  I really would need my walker to go faster, but I don't want to... I put that thing away 3 months ago, I don't want to get it out!   Its not that my legs got worse, its just that I started doing more... and I guess doing more, they are not quite there yet.  

There are two things I don't think I ever updated you on. I think its the fact that Dr.Spetzler took those 2  things away by removing this thing out of my head.  The blood in my brain was causing my  left side becoming numb, that is what drove me to see a Doctor in the first place. It was also causing simple partial seizures. I am happy to say that I have not had one since the surgery. Not even once. I am not taking seizure medicine either. They were caused by the bleeding. The numbness was caused by the bleeding too... I do still get numbness and my hands gets really tingly if I hold on something or touch something for 5 min and more.  I switch ears a lot when talking on the phone because of that, to switch hands, and also when I am driving.  

My speech gets bad when I am tired, and sometimes I am not tired.  Its mentally too. I actually noticed that if I feel stressed, or mentally tired, my speech is at his worse.  Driving home from Canada, my speech got so bad at some point, no matter how hard I try to articulate the words, it was just a big mumbling and the words just didn't come out. It was never this bad before. It lasted about 15 min. I think its because I was physically exhausted and mentally drained. haha  The good thing is, I do good 90% of the time, and nobody, not even my family, know that my tongue is hard to control and I put extra effort in articulating my words.  So if you met me in the street and didn't know me, unless I'd be having one of those funky moment, you wouldn't know I have difficulty articulating.  

My double vision is all gone! Well I think you knew that.  That's the reason why I can drive! I feel so blessed. Right after the surgery, even after I got home, I thought for sure I would never drive again, my vision was so bad....

I hurt another toe. haha Not as bad of course....  my other toe healed up pretty good. The nail is gone, but it doesn't even show since I put nail polish on where it was, and the shape of the toe looks so normal. haha I keep dropping things.... and it lands on my toe...  I am happy I don't have a little crawling baby around!! 

I hope you are all doing great!  Never be shy to leave me a quick comment! I would love to hear from you! Where you are from, what brought you here, your name, your cat's name, your favorite food... nah, that's ok.. hahaha In other words, anything you'd like to say!

SMILE