Wednesday, January 29, 2014

The Glass House

This is just wonderful!! Tony Thompson is a NY artist who was diagnosed with Cavernous Malformation in his brain stem/pons area, same as me. He is currently seeking Dr.Spetzler and has an appointment with him next month. This is a project based on his brain hemorrhages from his Cavernoma. Not only it is so perfectly explained, but also perfectly illustrated.

Tuesday, January 28, 2014

Training for the Olympics

As I miss being physically active so much and am really focusing on exercising again, I often wonder why do i feel so darn physically tired. Then I remember reading from someone else a while back that recovering from brain surgery was like training for the Olympic. It takes so much mental strength that you feel like you are working out all day long. Its a good explanation, as that's how i feel a lot of times. For you who have had surgery, do you feel like you are training for the Olympics? haha That is how I feel a lot of times.... 

I have come amazingly long way since I woke up from my brainstem surgery. I re-learned how to sit, walk, eat. Thankfully didnt take me 6 months like I was told to expect. I had speech therapy, physical therapy, occupational therapy, Balance therapy. I still am re learning to write and slur my speech, get lots of brain fog and have a very hard time processing any new information. Have lots of sensory issues and tinnitus. BUT I am happy, because I focus on the positive and I KNOW how blessed I have been. My prognostic was inoperable and death, so you can imagine my honeymoon despite my deficits. haha 

I act and appear completely normal now, despite how i feel. I never dwell on those deficits. They are my normal now. However, most days, there are many things that do not show how much work i put in, like speech is a big one for me. I talk totally fine, however, I am ALWAYS "working out" my speech. To sound clear. The times I cant make the words come out as clear, is when I am tired, or dealing with sensory issues, like being in public with noise. Focusing, on anything, and I mean ANYTHING, is quite draining... its hard work!! My brain just cant multi task, so its one or the other. hahaha Its exhausting!! and being tired makes those things worse. Its a funny cycle. I say funny, because that's how i chose to look at it. I am NEVER going to pity myself.

Saturday, January 18, 2014

Thank you, prayer warriors!

This message from Jeff says it all:

I had brain surgery on January 14th and I was released from the hospital yesterday, on January 17th.

It was an amazing procedure. In a little over 6 hours, I had the cavernoma removed from deep within my brain, in my thalamus brainstem area – a spot where many Doctors had said was “inoperable” and “too risky.” At the same time, I was also being told that if I had another bleed in this area, it would be devastating.

I am so happy to have had it removed successfully. Thank you all for your prayers! Your prayers led me to Dr Spetzler at St Joseph’s Hospital in Arizona, and guided his hands through my surgery.

Dr Spetzler is amazing. There is no doubt in my mind that God is using him as an instrument to help patients like you and me. His smile and face is so humble. Before I went under anesthesia, I told the surgical team in the operating room that hundreds of people, if not more, were praying for them.

When I woke up after my procedure, I immediately felt better. I could feel the pressure was gone. I had no new symptoms, and I could tell that my previous deficits were already somewhat better.

When I was able to speak with Dr Spetzler for the first time following my surgery, I asked him how the operation went. He said it was an extremely difficult procedure, but it went very well. In fact, he said that it could not have gone better! I told him that a great deal of people where praying for him and he said, “I know, I could feel it”.

Unfortunately, Dr Spetzler is retiring in 2016. If you are in need of treatment, I fully recommend that you set up a consultation visit and have him review your condition. There are truly no words to describe how wonderful he is, but ‘miraculous’ is up there. Pray for him the whole time. Ask God to guide him. We can even set up prayer chains on FaceBook (an unintended use of FaceBook, I’m sure).

I am so Thankful to Lisanne for sharing her story and Dr Spetzler’s information. I am also very thankful for my sister, Mary, for praying while she researched Doctors for me and, through God, stumbling upon Lisanne’s blog. Thank you all – your prayers and support will continue to guide me on my road to a successful recovery.

Thursday, January 9, 2014

In the hand of God

As I mentioned it so often, when I first found out I had an inoperable brainstem cavernous malformation, and all I could find online was horrifying stories of people who have had the surgery  (usually as a last results without their knowledge, leaving them with such devastating deficits that it appeared much better to just wait to let things happen on their own) I quickly concluded that the best was to  enjoy every day like it was the last.  That it was in fact, inoperable. The surgeries outcomes left people in nursing homes a lot of times.  If home, they still had lost such a high level of quality of life that the only reason they were home is because a loved one was amazing enough to care for them.  When i was told inoperable, i was told "it "can" but you want the surgery only as a last result, to save your life, because it will disable you". So... what do you chose? You accept the inoperable verdict, and try to move on.

But is that really it??

What "if"?

What if there is a surgeon out there, or even more than one, that can operate with a much better outcome?   Surely there is someone out there that survived this and still maintained a decent quality of life. There has to be someone!!

Finding that person seemed impossible at first, but I did.  Despite not finding anybody for almost a year and "accepting death", I found not one, but 3.

All this to say that it was more than important to me to let people like me know out there that there ARE people out there!!

When I was in Phoenix, Dr.Spetzler's nurses and therapists told me that he operates on the brainstem all the time. He operates the "inoperable"... which means he uses his incredible talent to reach people's brain tumors and aneurysms in places where any other surgeons wouldn't even think of going.  He invented brain surgery tools that changed the Neurosurgery world, and mastered to use them.

So, if Dr.Spetzler did this "often", and that so many people, if not most,  have great outcomes, why couldn't I find anybody??  I will never know the answer to that question, but I also know that even if he is the best neurosurgeon in the world, I never heard of him, nor was referred to him!!! However, I was determined to at least try to make sure that some day, it wouldn't take someone almost a year to find someone.  I will never stop to reach out to others, in hope that it can help someone, somewhere.

This brings me to Jeff.  

Jeff was diagnosed with a  Cavernous
Malformation in his thalamus.  It is just above the brainstem and is most of the time classified as inoperable.  Like me, Jeff found a way to accept this diagnostic at first, but his sister didnt.  She went online and came across my blog, which led her to find Dr.Spetzler.   He wrote a comment on my blog to let me know that he had sent his scan to Dr.Spetzler office in Arizona.  Jeff lives in New York.  I often thought about Jeff, not knowing what type of answer did Dr.Spetzler told him back.   About 2 weeks ago, I learned that not only did Dr.Spetzler told him he would operate on his "inoperable" cavernoma, but that he already had a date schedule.

January 14th, 2014, this coming Tuesday.  He is to travel with his two beautiful daughters to Arizona, and put his life in this amazing miracle worker's hand.  I know first hand how difficult this decision is to make.  I know how sickening it feels to one's stomach and oh the doubts. Jeff has put all his faith and hope in God.  Please, Please pray for Jeff. First, pray that God gives him His peace. He has faith, he has hope, and he is strong and courageous, but he needs more, as any of us would. He needs that peace that throws doubts and turmoil out the window.  Pray for that as of  now.   Then, pray for a successful surgery. Pray for a successful resection, minimal pain and successful recovery.  Successful seems so vague... because it is!! Success can be interpreted in so many different ways.  Pray that Jeff recovers successfully according to his desires!!  Jeff is a runner. Pray that he can go back to his love of running.   There is so much we can pray for. I have no doubts that Jeff will wake up from this surgery with a sigh of relief and confidence in his heart.

Jeff and his two gorgeous daughters.  Pray for them too, as they wait on Tuesday.  

You can follow my facebook page here as I will update you on Jeff's every time I get an update.  I am so grateful for all the prayers that I have and keep receiving. I am asking you to pray for someone who needs them more right now!! So when I pop up in your mind, remember to pray for Jeff :)~

For now, I just want him to keep realizing that his journey is special and is not happening for no reason.

I want him to feel as if it is not on an operating table that he will be lying on Tuesday morning... it is right in the hand of God.

Thursday, January 2, 2014

10 months post op update!

Can you believe it's been 10 months?!

A year ago, the first week of January, I had a follow up MRI for my Cavernoma, which was diagnosed 6 months earlier. Summer of 2012 was a horrible one for me, following a spring bleed and the onset of seizures.  In the fall, however, after I quit my job and spent more time resting (not that I had much choice, doing anything was a huge chore) I did feel better.  By December, i was feeling very "off" again. I knew something was wrong. Maybe it was ready to bleed again, I was not sure, but all I knew is that my more peaceful fall was just an illusion.  That MRI result seemed pretty positive. The cavernoma had shrunk, he said.  My husband seemed excited, but I was skeptical, simply because what he told me didnt match the way I felt.  I found out later that cavernoma shrinks before they are ready to quickly fill up with blood and bleed again.
It is so hard to believe that this MRI was almost a year ago in less than a week. It seems like yesterday.   The Year 2013 was really all about this brainstem cavernoma of mine. Now with year 2014 comes this new chapter of my life without it.   I still am not sure of what time of year we are sometimes, and for some reason, its Friday a lot... Friday or Tuesday. hahaha

Ok, where was I? Oh, 10 months post Op update! haha  Once  I reach the famous one year mark for brain recovery, I will go over an earlier post of all my issues and update. That will be awesome. haha

For now, I can say that physically, I feel so much better than before the surgery. Of course as you know, since I woke up unable to feel or move my body, I would of never thought this would be possible so soon.  I expected a lot longer than this to regain control of my body, but in all, it was the first to come back.  Physically, I look completely normal.  I walk without a limp, which I did for a long time, before, and after surgery. I dont bump into everything like I used to. I dont fall all the time either. I am physically stable, vertigo being very mild, as well as dizziness.   I even wear heels and walk in them just fine. Can I get a Hooray?!

As far as working out, something I did for years, at least one hour a day, sometimes more, I still am not there.  The reason for this is not so physical strength. I am a lot less strong than I used to be... but its mostly my breathing/heart beat that is the problem. If i do anything strenuous physically, its as if I cant catch my breath. My heart rate and breathing all get out of wack.  The brainstem controls these two, so i guess its taking some time to be back on track.  Its as if they are dont go together.

My right hand is doing better.  I take on the crochet. haha I crochet scarves for my sister and 2 friends for Christmas.  When i started my first one, I wondered what I got myself into. My hand not only hurt so much, but just wouldnt get that yarn where i wanted it to go. haha  SO, I thought myself tricks, and discovered that my fingers work better if i twist my hand a certain way. For months, I just tried and tried to use my hand and finger the way I used to.   It was discouraging to see that no matter how much I tried, how much therapy I was giving it, it didnt improve.  I finally realised that it was probably a permanent damage and it was better for me to learn to do things differently. So I did. I can now write better. It is not my handwritting anymore. I stopped trying to get that back, but it is some handwritting. hahaha I gave myself a new signature, and my handwritting may not be pretty, but its better than not being to write at all!!

I am coming to the realization that my permanent "damages" are about my memory, processing, understanding information, focusing.  I like to call myself a dark hair blonde.  Jay does make fun of me, and depending if I am in a "this is kind of funny" or "this is discouraging" mood, I laugh with him, or get discouraged. haha It is hard to feel like i "used" to be smart, to now feel like i have such "dumb" moments.

**By the way, this is my 5th time editing typos of either wrong spelling or using the wrong word, something I do a lot. :)

The tinnitus is pretty intense too. Its not fun. Its constant. I make a big effort to push it out of my mind, as loud as it is, simply because if I let myself think about it, and what it means, i get into a very deep sadness.  I am "only" 35 years old and I will always have a loud siren ringing in my head. Ok, enough said, see what i mean?

My sister offered me this mask for Christmas,
to replace the eye patch I had on last year :) 
The eyes are good!!  Double vision is completely gone and apart from now being near sighted as well as far sighted like i always was, there is no change!! Its amazing to me to remember how bad it was, to now. I did not get a different prescription glasses. When I do need to see closer, I use reading glasses. I only really need my glasses to drive and watch tv, so it makes no sense to have bifocals.

Speech.  I slurred my words so much at first! Now, its funny because it only happens when I am sick, tired, or if my brain is dealing with too much to think, or too many sounds. My brain is not good at multi tasking. haha So, when i start slurring my words, its because I have too much going on. haha

As I got to do more "normal" things, I discovered different things.  Like counting. Its really hard to count past 35. I get to have to think veryyyyy slow to get the numbers right.  There are many different things like that.  haha

All in all, i think my biggest challenges are all invisible.  I was not only 3 days post op and people tell me "you look so good, you dont look like you have all these issues"  Yet, I could not walk and do much. haha so imagine now... I run my own errands, I even volunteer at school (its difficult by the way, i see it as therapy haha) and do all that a normal person do. I dont blame people for telling me "ohhh you are back to normal" even if it hurts me. I cant explain why it hurts me. Not a "oh gosh i am so hurt" type of hurt. More like a pinch. Because I know what they mean by the word "normal", as of "as before", and its never going to be "as before".  Normal is what your life is about day to day, what comes natural. You can be confined in a wheelchair for years, all your life, and people will view that as "normal" for you.  I want people to understand the new me, and that become the new normal... not to compare me to what I was before. They dont see that, so i get that... its more about people not understanding that I have let go of this past "normal", so they shouldnt think that this is what I aim for. Its gone. I am running towards a even better normal.. one that I thought impossible. One that I was told was gone forever. A normal that I thought was going to be living in a nursing home, with my kids visiting me.

Normal?? No, things are not normal anymore... They are extraordinary!!!

January 1st, 2014, 10 months post op 

It's all about perspective!

Happy New Year everyone!!

As the New Year was approaching, I played ping pong between 2 thoughts. Was this the most horrible year or my life, since it was all spent being very sick, having brain surgery, going thru rehabilitation, recovering, finding my new "normal" and bla bla bla. OR was it the best one, simply because despite all this, things turned out pretty awesome.  I have said it so many times, the deficits I do have now, the fact that life has changed and i will never feel the same, all this is irrelevant to me compared to what i was told. All the times i sat in a Neuro's office, dizzy, struggling to walk or breathe normally, and told "inoperable" or "if you have surgery, you have a 95% chance of being paralysed, you will slowly disable until you have a deadly brain bleed, stroke, aneurysm .  So, was this the worse, or the best, year of my life?  I personally, sincerely, truly believe, it was the best!    I was ready to be disabled just so I could see my kids grow. I was expecting so much worse.  Yet, I went thru this very traumatic thing of accepting my own death, a miracle surgery, a splendid recovery, a great appreciation of life like few will ever know..

Surely, 2013 was a wonderful year.