Wednesday, February 27, 2013

Hello, Arizona

We have arrived :)  A part from yesterday's frustration from having to travel so slow on a highway due to the road condition from the previous night, this trip has been nothing but wonderful.  Jay and I truly never spent this much time together, alone, before. :) hahaha  We are home bodies. We like being at home, with our kids, and enjoy regular life.  We very rarely feel the need to go out on a date or "get away". We talk about everything and anything, all the time, so we really dont need time alone to be "close", but spending this much time, in a car, with music or without, with conversation or silence, was so pleasant :)

My last post was about conflicting opinions.  Last week was so very stressful for me for more than one reason. First, I got a surgery date, which made everything so much more real.  Second, I was having major problem sleeping/breathing/swallowing, spent 2 days in the hospital with no answers, went to the ER another night, again with no answers.  I didnt care to know why I was having issues, I just wanted help.  With  my condition, i really cant afford being exhausted. It makes all my symptoms worse, rises my blood pressure (sound like a old lady uh?) and one thing leading to another for a really sick person.   I finally got some sleep without their help, and with every 10 mins of sleep (mind you, i didnt sleep in 4 days then) I got better.  

While in the hospital and ER, many, many doctors told me that the breathing and my cavernoma were not related.  I really dont care weither they are right or wrong, but my guts told me it is related. When I first went to the ER, i was convinced I was having a bleed. Just  the way i felt the week before, the way it felt then, and how horrible something "hit me" in the car on the way there.  The CT didnt show any new bleeding, but i again later found , that even a very microscopic bleed can have serious damage/symptoms when its in the brainstem, and breathing being one of them.      I know what I am made off , so being told it was anxiety related didnt bother me much at first.  Its only when they started telling me that according to my MRI, i had NEVER had a bleed.  (I was told by my neurosurgeon that I have had 2 previous bleed) Now, I can understand that they couldnt read a microscopic bleed if that is really what happened last week,  but to tell me something opposite of what I have been told and lived thru, that was frustrating. It hurts you know?!   However, one did admit "i am not a neurosurgeon, I am a neurologist.  I respect that so much more. 

Now, if it was a bleed 2 weeks ago, I will most likely find out thru Dr.Spetzler!  It will be very tempting not to write a nice long letter to Mercy Hospital and UC if this turned out to be all related and a small bleed.... I'd like to deliver it in person too, and show them my lovely head scar. I do respect Doctors, i really do... but it was very painful to go thru this experience, right around the time my life changing surgery was being scheduled.   They just need to understand that sometimes, patients with a very rare condition actually do know about their conditions, and they are not tryign to be smart asses by telling you what they think is wrong with them... they just need help!!  

Tomorrow is my pre op at Barrow.  I will also meet with Dr.Spetzler and have a MRI. I am having my MRI after i meet with the surgeon, so I dont know how I am going to find out his readings... but I am sure I will have answers to my questions sooner or later, and franckly at this point, it doesnt matter anymore :)  

It was so hard to hug the kids goodbye on Sunday before we left.  I have no doubts in my mind that I will see them again, no matter how risky this surgery is, I will see them again. It was hard because I had never left them before... and I know how difficult this is for them. Its hard enough that they are worried about me...
Friends have been amazing tho and really coming together to make sure the kids are kept busy and that all their activities like Boyscouts, Girlscouts, Dance class, Sewing class... are taken care of.  I so appreciate that...! 

Throughout all this, I met an amazing young woman, Christine, who also had a brainstem cavernous malformation. She didnt know she had one until she needed emergency brain surgery!  She had surgery a year ago and still recovering, but she is doing amazing now (and just got married!)  and is such a inspiration to me.  I found her blog and was so excited because i have been looking for months for a blog, someone i could ask questions/ talk to, and finally found her maybe 3 days before my hospital stay!  Here is a link to her blog:  

I also met 2 guys who also had the same surgery done, both from Dr.Spetzler.  They both called me when I was in the hospital to strongly encourage me to have the surgery.  I knew in the end, the surgery was the safest, better option, but I was still hesitant.  The 3 of them really helped me feel a lot more confident and believe in a positive outcome :)

Akiva's blog: Ipatch Man

An article about Peter 

I also came across this amazing story/video on the Barrow Facebook page.  Another very encouraging story!

I am staying positive and confident as much as I can.  I truly do not want to have any fears on friday when I am wheeled into that surgery room... I want to go to sleep happy and ready.  There is no telling how long I could of had before another bleed, but not being to predict that, let alone predict how bad, totally disabling, or deadly it could be, at any time... I know how blessed I am to  have this surgeon, adn the prospect of a future where I wont have to worry about dropping dead at any given moment!  

There are so many things that are showing me the hand of God in all this. Meeting Christine, so many other little things falling into place.  Just to have such amazing friends who made sure I was to see the best, is a blessing I cant stop trying to understand.  My so very special friend Melissa found Dr.Spetzler for me, thru research and just reading around the internet. Once we had his name, I just mentionned him to another wonderful friend called Melissa, and a few hours later, she called me to let me know she called his office and we were to send my scans there the next day. hahaha

Financially, I dont know how much this is going to affect us yet... This is a
125 000$  surgery and we have the most amazing insurance, but we truly dont even know yet how this is going to affect us.  I will most likely be flying home, and all the other expenses associated with this, I know, will hit home soon enough. It makes me feel guilty.. but i know my family doesnt see it that way.  I am confident that God will not let us starve or lose our home. We probably will have to sell a car, but things will work out im sure.

I am not sure I will be writing before surgery. If i do, it will be quick. I have been keeping family and friends updated thru a facebook page I created so Jay can update everyone when I cant.   You dont have to be my friend on facebook to like or just follow the page. Its such a quick way to keep you updated.

That Brain Fart facebook page.

Well, I will go and enjoy this fabulous Arizona scenery! This is my last day before being prepped and made new :)  Tomorrow will be a busy day at Barrow, and I have to be at the hospital Friday morning at 7am. Surgery is at 9am.

I love you all and appreciate your thoughts and prayers so so so much!!!

Friday, February 22, 2013

Conflicting opinions equal doubts

I wrote this after seeking some local answers. I updated in (parentheses) I apologise my writing was a little bit all over the place. I was tired and confused

After making the decision to have the surgery, I felt very good. I did not schedule yet... but to have the best neurosurgeon in the world call me and offer surgery... it has to be something I should do, especially after being told inoperable many times by other surgeons.    I came across some great people that have gone thru the surgery with Dr.Spetzler and their outcome was really good. Like me, they are positive, happy people.   I felt very confident about my choice. I know it is going to be a very long road to recovery... I know of all the deficits that may or may not happen... but I also know that my children would rather visit their mother in a nursing home, than in a graveyard... 

Sunday, I woke up feeling worse than every other day since the past 2 weeks. The past 2 weeks were really off for me. I didnt feel good, but really couldnt explain why.  When i get tired, or a bit sick, my symptoms get so much worse.   So that day, we came home from an outing and as I got out of the car, everything around me started spinning. It was a lot worse than the dizziness and vertigo I experience on a daily basic.  The whole earth was shaking and spinning, and I was very confused.  I told Jay something was wrong and I think I should go to the ER.  On the way there, something strong came over me,    It felt like a huge electric shock all over my body and all over sudden i couldnt not move anything at all. I was glued to my seat and was useless, gasping for air.  (I later found out in Phoenix that it was blood dripping in the brainstem, because there was blood in the Pons when they reached the area) (what a CT later didnt show because it was tinny)     My husband stopped at a fire station for help. They got me in the ambulance to the local hospital in Anderson.  I was there 2 nights 3 days.  I had a CT done to rule in/out a stroke .It came back normal. I had a MRI the next day but not the one with and without contrast. I didnt get the "dye" one, so my MRI came back normal.  (When we called Dr.Spetzler Resident in Phoenix the day I was discharged, still struggling to breathe, they said only a MRi with AND without contrast would show a tiny bleed and even that sometimes does not show it.)  The Paramedic said I had petite mal seizures in the ambulance but I dont remember I think i was out. haha  This was NEVER mentionned while I was in the hospital... I was discharged from Mercy and told that my cavernoma was too small to cause my symptoms and it was just anxiety.  Anybody who knows me know I dont. I have been taking "Buproprion" which is for anxiety/depression simply because my Neuro said it was a good idea to keep my stress level to the minimum. I  have not noticed any change at all. I am just a natural "low stress" person. 

Then again last night, it was not as bad as Sunday, but worse than the 2 nights at the hospital. I just simply could not breathe if was laying down or sleeping.  I also felt like I had to focus all my energy at just breathing.  My oxygen level tested normal at the hospital, so i understand that they had no clue what was wrong with me.  I am having a lot of simple partial seizures. I had to stop my meds because I got a very bad allergic reaction to it.  I never had another type of seizure than simple partial and she left me the choice to try another medicine or not. I chose not too because the way it made me feel was worse than dealing with the seizures. If they were petite or grand mal I would. I just hope i dont get some big ass seizures now. I totally forgot to talk about the seizures and I dont know why it was never mentionned. My EEG came unconclusive when I had it down a few months ago. I had it done on a good day. haha On a "bad" day, I had those suckers every 10 mins.  I have them this often again... but i guess it shows "inconclusive" in my file. Its the petite mal that is odd to me... i hope it doesnt mean they are going to get worse and worse. 

So Today was so conflicting to me, and Jay. Around 4am, I woke up after about an hour of sleep, not being able to stay asleep because i just would gasp for air and whatever else would wake me up would. I later found out i do a lot of strong jerking, whatever that's from. Jay even took a video to show the Doctor. (no, i am not posting it haha) Anyway, we went to the ER, because i really felt that i needed help. I then noticed that I couldnt swallow,  I didnt even know it was all related until a friend who suffered the same thing told me it happened to her so severely that in the end, she could not swallow at all. The brain stem controls involuntary functions, I learned later.

I needed help breathing normally if only for me to sleep. I havent slept more than 30 mins at a time , maybe twice a night, since Saturday night. The exhaustion really makes all my symptoms worse, and the breathing made me have to focus all day long on a slow calm breathing to avoid hyperventilation and rise of blood pressure. Then, i couldnt eat more than one bite of food and was really dehydrated. Anyway, it was just a vicious cycle that maybe only one thing could stop. I have been laying down in the cold on my porch because the wind helps me breathe in. haha I took Tylenol PM to help me sleep but that made the breathing even worse. ( I later found out that I just was having trouble with my involuntary function and I am a freak of nature to be alive. haha I have a strong mind, I suppose.  I cant explain how weird it feels to tell your body to breathe. It would come handy under water!! Yea!)

We decided to go to UC this time, because they are more Neurologists there.  When we got to the ER at UC this morning, i just wanted help. I didnt care about why i was there, or what my condition is, i just wanted help! Well, they focused so much on proving that my symptoms (breathing) were or were not from my condition, that they totally missed my point. The first Doctor we saw was a Resident. Too good looking to be a Doctor. My husband started with "Look, just please take us seriously, listen to us, just listen" hahaha  He did listen, and he was very nice.  I was SO exhausted after not sleeping for 3 days straight I kept falling asleep in the chair and waking up by jerking.  After the Grey's anatomy Dr. Listened, he left and another one came in.  We did a  lot of waiting, and I did a lot of sleeping for 1 min a time/jerking/waking up. The first Neurosurgeon we saw didnt listen at all. He already had his mind up that my Scans were clear and i must be a anxiety freak. He was probably running low on fume too.  He told us that my symptoms were not related to my condition, because my CT didnt show any signs of new bleeding AND on top of that, they didnt see how it ever bled. NOT what my first neurologist and the 2 neurosurgeons that told me this was inoperable told me! I really didn't care anymore , I just wanted help!  I even asked that if anxiety cause this, Please give me a shot or something to calm my darn nerve down. I was not aware I was anxious but hey they kept saying I was... 

I am now convinced that the lack of sleep truly made me deteriorate quickly this week. I would sleep a few minutes at a time on jay's chest in the ER room while he was standing infront of me and me sitting. It was easier to breathe that way and i got a little sleep, even a little helped a lot. I fell asleep for 10 mins and woke up to 2 more neurologist telling me that my breathing issues had nothing to do with my condition, not even the swallowing and other things i told them. They said it didnt match the location of my cavernoma in the brain stem.  I am so confused, because Dr.Spetzler team are telling us on the phone that the brainstem does control involuntary functions, like breathing and swallowing, and it does not need much blood to cause damage. 

Jay  (Front) and I (Back) asking Neuros to help. 
The neurosurgeon stood an inch from my husband face and told him , angrily "If her brainstem had a bleed, she would be dead!"  and there I was behind him awake for now the 4th day because I stopped breathing in my sleep.  I felt so helpless and betrayed that these people didnt HELP me. They were there to prove their point that they believed my cavernoma was not creating me these problems, even after i told them i was there for HELP, not a diagnostic, like HELP me breathe and sleep, please! So, and Please please beleive me that I do not have anxiety!   with the lack of sleep and stress, both Jay and I came out of there having such doubts about my upcoming surgery! I have to remind myself that i made the decision to have this done before Sunday's crisis. It really doesnt matter int he end what the real reasons are. Once home, ALL my symptoms, the breathing, temporary paralysis i experience Sunday, swallowing problems, are all related to the brainstem. It was so bad last night that Jay was ready to put me on a flight to Phoenix right then.

We called my Neurosurgeon Dr. Andaluz and he did confirm that I had 2 bleeds before!  I knew I heard right!  But the Doctors at UC told me it never did.  I know that these local doctors really do their best and they deal with so many people that do have anxiety.  At least the good looking one (gosh i dont remember his name) Never told me I was a freak. He didnt seem to know, and i respect that so much more.  We have been on the phone with Dr.Spetzer office and his resident (who call on his behalf)  and its very odd feeling to have the best Neurosurgeon call me to tell me he wants to do the surgery as soon as possible.  

In the end i know it doesnt matter what the Neurologists here said...Its a rare condition and to them its impossible that I can be walking and alive after 3 brainstem bleeds.  I knew I didnt have anxiety, that i was not crazy, but trust me, I think I am now . haha

Update: Surgery is scheduled for March 1.  We are leaving Sunday. Driving. We are taking our time because I am a mess. I just hope the trip doesnt kill me. That would be a joke right!  Pre Op is Feb. 28 :)  

Friday, February 8, 2013

Neurosurgeons "gods"

Dr.Robert Spetlzer
Barrow Neurological Center
Phoenix, AZ

These 2 doctors I am going to see are basically so talented at what they do that they are both considered among the best in the entire world.  Dr. Spetzler (pictured) grew up in Germany, and Dr. Lanzino in Italy, but they both came to the United States to specialize in Brainstem conditions and surgery after their basic medical training.  I first heard from Dr. Spetzler; he is the one that offered a surgery as soon as i want it; caught me off guard as I have been told for almost a year now that this was inoperable.  He practices at the Barrow Institute, In Arizona.   I am going to see Dr. Lanzino on March 6th, at the Mayo Clinic, in Minnesota. 

(update: I didnt get to see Dr.Lanzino, as I ended up in the hospital February 18th and traveled to Arizona to have surgery by Dr.Spetzler March 1st: Read here) 

Dr. Giuseppe Lanzino
The Mayo Clinic
Rochester, MN
Oh, what is funny, is that Dr. Spetzler is considered the best in the country regarding my condition but Dr. Lanzino studied with him in Arizona and then moved to Minnesota, and they wrote  book together!! So cool!   I am so curious to see if they both agree that i need / can have the operation. If Dr. Lanzino agrees with Dr. Spetzler…. I think that will just confirm that this is the best decision…. why would the 2 best surgeons suggest it as a good option if its not a good idea? 

I grew up in the middle of nowhere. You can see my house there. It is the third one among those 5 that you can see.  This town is in the middle of miles and miles of forest, from all directions. We HAD to drive long distance for everything.   Driving to get things done is not a big deal for me.  I know some people who would simply say “oh, i dont have any specialists near me, there is nothing that can be done for me” so….. go find them?     Unless you are suicidal, why wouldn’t you drive for 12-20 hours? You dont HAVE to fly if money is an issue!  Unless its 4 days drive away, with gas price, you may as well take the plane. But at least, GO.
Kedgwick, NB

Thursday, February 7, 2013


Exactly 6 months ago, on July 17,  I blogged this:

“However, I am staying positive, because there are no uses for me to live my life always wondering when this will happen.   He told me that at some point, I will have to make this very difficult decision… wait for something catastrophic to happen, or operate now and risk now.   Not the kind of decision anybody wants to take.”

This “point” has arrived.  At least from one very skilled neurosurgeon. I was getting used to being told to just go home! Being told that surgery is an option and that I have a choice to make is a whole new ball game for me now… I have to make that decision.  It is so hard to choose…. Im no ready!  I guess I never would be ready to choose… but I think seeing another very qualified neurosurgeon at Mayo Clinic on March 6 will give me more confidence/facts/confirmation etc.

Saturday, February 2, 2013

Mayo, Hopkins and Barrow

I had a MRI follow up about 2 weeks ago.  Its very normal for the cavernoma to be empty before it fills up with blood again.  I have good days, and bad, then a good week, followed by 2 bad weeks.  I thought maybe it was getting worse, or was bleeding again, but I guess it is just the joy of having what I guess i can call “brain damage”. hahaha   The list of weird symptoms is so long, i will spare it….  Some of them are silly, some are scary, some are “oh well”, but most of them are very frustrating… both physically and mentally, but the mental symptoms are what is bothering me the most.  Its hard to not feel in control of yourself. However, I do believe I have a very strong control of “myself” despite some really bad days.  I work really, really hard to fight those symptoms.

Lately, I have been struggling with the realization that its not because I accept other people at their worse that they accept me at mine.  I thought it was pretty natural for most caring human being to do that, but I was wrong.  I will always have the same soul, the same heart… that people seem to like…. so why not accept all of me when this girl is not doing good.  I really cant say that from a lot of people. My true friends and family have been patient with me, and i also learned to stop being so strong all the darn time…. i am so used to just push myself to every limit, stay positive and move on, that when i do feel really sick, which is very often, nobody knows. I think its mostly good that im like that… but bad in the way that even the people the closest to me have no ideas how hard simple tasks can be for me.

I have also come to realize that I have amazing friends.  Within 2 days, 3 of my friends, mind you they dont know each other, have  arranged for me to see 3 of the best neurosurgeons/neurology center in the country.   First , the Mayo Clinic, In Minnesota. My appointment is March 6.  Second, Dr. Speltzer, at Barrow Neurology center; he is known to be one of the , if not THE best neurosurgeon in the world. Third, a neurosurgeon at Hopkins, Maryland.  I dont know who is going to view my Scans there, but all those opinions wont hurt.
When I saw my neurosurgeon 2 weeks ago, he was mostly positive. I just felt like he is not saying much.  He first told me things looked good, then said “if it bleeds again, i will try to convince you to do surgery”. He never said surgery was an option before. He actually said it was inoperable. I just felt like there was something he was not telling me. I later found out that “calm” cavernoma is very normal right after a bleed, and a lot of time, it only means it will bleed again soon enough. Anyway, I still take it on the positive side.  Of course i hope i never have to think of choosing to go thru with brain surgery.

I seriously dont know if i’ll have the support I need.  People mean well, but I always felt pretty invisible when I was in need.  Might as well go live in a cave by myself.  I guess I am not the type of person people are eager to “serve”, even when in need.  Probably because im usually the servant and ironically enjoy doing so. I never get burdened when friends need help. I am very happy to help and never think twice about it.  I think my problem is not that i dont have support, is because i dont ask. hahaha

I guess im feeling down tonight uh?!  Oh well, cant be perfect
I am excited to know more about this. I feel like i’ll be able to move on better.  I dont wake up thinking of all this, and I dont go to sleep thinking about this, but lately, the thought of surgery scare me some.  There are so many things that can go wrong in a  brain stem surgery…. its ridiculous.  Anything can happen, Anything! Its scary…. BUT, i dont stay scared long. I chose not to go there.

Did I tell you I lost 27 pounds?  I did, and im really happy… I feel so much better about myself.  Now, Jay keeps telling me , jokingly, that im too skinny.  He doesn’t realize it, but it makes me insecure… haha I want to please him, and he used to joke about me being chubby, and now im too skinny… am i ever going to be just right?

Anyhow, I am so so blessed to have friends that cared enough about me to inquire for me…. it really shows you who really care about you. Who thinks you are worth the effort and time!  I am blessed to have them.  Not a lot of people have the chance to get 3 specialists opinions like I will be getting.