The problem with a rare disease diagnosis

Six months after the birth of my first child, I was diagnosed with a cavernous angioma. I never expected to have my life changed in so many ways. While cavernous angiomas are actually very common (one in every 500-600 people have them). They are still considered "rare" because most people that have them never know it as only about 30% of those with angiomas become symptomatic. Common onset symptoms can vary but often include:  seizures, stroke symptoms, hemorrhages, and headaches. Typically, a diagnosis only comes after an individual becomes symptomatic and has an MRI. The most common age for a diagnosis is in a person's 20-30's even though most people are born with their angiomas. Some people only have one (sporadic) or others have many/multiples (genetic).  By definition, cavernous angiomas, are abnormal clusters of blood vessels often resembling a raspberry configuration. The problem is that the lining of the blood vessels in cavernous angiomas are grossly dilated/defective, they have thin, weak walls that can leak or bleed easily. When these cavernous angiomas are in the brain and spinal cord and they bleed... They often become problematic.

Well, that's exactly what happened to me. When mine started to bleed after my first pregnancy, I became symptomatic(dizzy, spacey, feeling weird, eyes not working right, etc). At first, I thought it was due to sleep deprivation, hormones, and everything new moms go through. By 6 months postpartum, I went to the doctors. Of course, they were sure I had postpartum depression. I insisted otherwise. No, I was not depressed but something was wrong. Eventually, I got an MRI which showed a 2.2cm cavernous angioma in the insular cortex....incidental finding....ugh!

Next I saw the first of several (incompetent) neurologists. She read the report without looking at the images, and tells me I have a tiny cavernous angioma in the middle of my brain. She says its not causing my problems and never will, which is good she says because the location is terrible. "Cavernous angiomas are something that never cause any problems. It's like a birth mark...nothing to worry about", she said. I questioned, "Well what's causing my symptoms then?" She said BBPV and prescribed meclazine,(which did nothing to help), and exercises to "settle the crystals in my ears" from the BBPV. I scribbled down the words cavernous angioma and felt relieved for a moment, not knowing how asinine her words were at the time.

There is a tremendous misconception in the field of neurology that cavernous angiomas are basically benign and cause no harm EVER. While statistically that can be assumed, sort of... Yes, most times cavernous angiomas behave themselves and don't bleed. But when they do bleed, they can cause all kinds of problems. Depending on many factors including the location and the amount/frequency of the bleeding, they can cause severe disability and in rare instances death. Those with the genetic type are also faced with the possibility of having many angiomas that can cause problems with bleeds and even may develop more angiomas over time. I was lucky...I only had one nasty bleeder.

Because this is a rare disease, there is limited research and currently brain surgery is the only treatment. Angioma Alliance is the best source for information, research, support, etc. I credit them for helping me to empower myself to reclaim my life after countless misinformed doctors gave me bad/dangerous advise in respect to my angioma. Education is key. If doctors would take their cavernous angioma patients seriously, and learn how to read MRIs....patients would struggle less trying to figure out what's wrong with them.  Most importantly, if research was a priority, there would be more treatment options besides brain surgery...which resulted in a stroke for me. 

http/www.angioma.org

6 word story

I am never short on words. So asking me to tell my angioma story in 6 words is really hard. Here goes,

"Cavernous angioma changed my life, FOREVER!"

Here is a beautiful video illustrating other's stories. Please share with everyone. Having a "rare disease" makes it so much harder to get good care. Thank you Connie for all you do. This made me cry and is so well done!!!

So true

I can totally relate to this! This is so me when I get too tired, except I would never say I don't need a nap. What a smart big brother!!!

Supporting Angioma Alliance and finding a cure for cavernous angiomas

All you SoCal folks and anyone willing to travel...Here's your chance to come out and support Angioma Alliance and all the wonderful work they do. There is an upcoming walk in Pasadena. It's part of the Walk Anywhere campaign, so you can actually walk wherever, but it's more fun to walk together...so come out and join us or you can just donate on my page and I will do the walking. :)  All the proceeds go to Angioma Alliance because brains shouldn't bleed. Please mark your calenders, sign-up, donate, and join us as we limp/walk/run/move along for a cure! I will add the details as I am made aware, but right now, you can sponsor me. I will be there positively!

Donate to my Walk Anywhere for Angioma Alliance Fundraising Page

Insight from an old friend

I'm not sure what happened to Brooke aka Otownmama. I assume she has been "cured, got to move on past this whole angioma thing, and has gotten on with her life. When I was newly dx with a cavernous angioma, so was Brooke. She had small children at the time and this dx, shook her up in a very bad way. We were both going through a lot of the initial, shock, horror and fears that come with this dx at the same time. She ended up having surgery with Dr. Spetzler and then she disappeared from AA. That's a good thing, I assume. When she was struggling she wrote something that I think of often, so I thought I would share it.

The benefits to having a cavernoma......

On a lighthearted note...I have been trying to get past the shock and be more positive about things.  These are some things I've gained from having a cavernoma and I would love to hear yours!

10.  I don't have to look like a wimp when I don't want to ride a roller coaster.
9.  I just got spend money on new jewelry and order a super cute Medical ID bracelet that looks like I just got back from Tiffany's.
8.  I now have a chauffeur to take me places (aka husband, mom, friend, etc.)!
7.  Extra dates with my hubby when we stop to grab a bite on our way home from all these dr apt.'s.
6.  Thinking twice before judging someone, like the mom who doesn't take her turn driving kids for preschool fieldtrips (or who forgets there was a fieldtrip that day;)).
5.  More faith.
4.  More sincerity in prayers.
3.  More laughing (and crying).
2.  More time playing, less time cleaning.

And the number one reason I'm glad I have a cavernoma...

1.  It gave me a new perspective on life and what is really important.

I agree with most of what she wrote especially #1! Except, I would love to ride roller coasters with my boys!:( I thought that since I had surgery that I might be able to ride them, but since my hopscotch disaster, I am not taking any risks on that front. I will just have to cheer them on from the waiting area, and acknowledge their bravery with a smile that says I'm glad I'm here even if I can't ride with you :) !!!

Life is good and a new logo for AA

We have been so super busy. I never have time to blog anymore, but that's a good thing. Jack has "graduated" from preschool and he started kindergarten a few weeks ago. We are so proud of him for adjusting to his new "big boy" school so well. John and I are not adjusting quite as well to the new early schedule. We have always been up late so this whole going to bed while the sun is still out is an adjustment for all of us except Luke because he goes to sleep early anyways. ;)

Luke continues to be the sweetest, cuddliest, easiest little baby. He is such a treat! He's growing up way too fast though. He's already crawling, he says "mama, dada, and baba" (for brother....whom he adores). Watching Jack and Luke love each other is the absolute best...and I'm sure what every parent hopes for. They both totally love each other and smother each other with their affections...soo cute!!! Luke also loves dogs or rather their fur. He loves to pull my hair and feel Little's(our 13 year old chihuahua that hates kids) fur in between his fingers...much to Little's discontent. Little used to love kids but since Jack became mobile....she now hates all kids and tries to bite them sometimes. Thank goodness most of her teeth have already fallen out. :0

We had a fairly busy summer with John's work being very busy and a few short vacations. I am very happy and lucky to be living a fairly "normal" life these days. I still have the fatigue, but we have a pretty good understanding of my limitations and we try try to work within them...which keeps me feeling pretty good most of the time. I did have a pretty scary "relapse" of sorts back in March. I was teaching Jack how to play hopscotch and I guess jumping is a terrible idea because my vision went completely black for about five mins and then came back all messed up for a few weeks. I got a massive headache and nausea. I was thinking I might have had a bleed, but the MRI didn't show anything...so it was just one of those mysterious things. Lesson learned...NO JUMPING OR ANY HIGH IMPACT ACTIVITIES. Sometimes I feel so "normal" that I forget that I'm not exactly "normal" anymore. That's a good thing and I'm thankful that my recovery has enabled me to "forget" from time to time.

Angioma Alliance has just launched a new logo that I think is really awesome. Previously they had a "little red guy" and now they have a bleeding bubble brain that I think tells the story so much better! Check it out. I love the motto "because brains shouldn't bleed"....exactly...and when they do bleed it sucks! That's why we need a cure!!!

The icing on the cake

When I was diagnosed with a cavernous angioma in a deep part of my brain nearly four years, our world was turned upside down. The only current treatment for cavernous angioma is surgery and because of the deep location of mine....surgery was a very risky option. I tried "watching and waiting", but my angioma was too aggressive, bleeding and growing all the time. My symptoms progressively increased to the point that I knew I HAD to have surgery if I wanted any quality of life. There was the added bonus too that if surgery was successful, we "might" be able to have another baby....something John and I had REALLY hoped for. Before we got married, John would say he wanted 3 kids, I always wanted 2 and was clear that 2 was my maximum....so 2 was the goal. Well, since my first pregnancy/delivery somehow aggravated my angioma (that I never knew I had)..I knew I would not risk another pregnancy unless my angioma was gone. I also wasn't willing to undergo such a risky surgery just so we could have another baby, but I needed surgery and a baby could be a huge bonus!!

When my surgery was complicated by a stroke, that put the bonus possibility of a baby nearly out of reach. I could barely deal with our life as it is much less consider taking on any more. I worked crazy hard in rehab and achieved amazing success. My one year MRI showed possible residual angioma and maybe a new one on my brainstem. Finally, my two year MRI showed CLEAR!!! I sent it to Dr. Spetzler and Dr. Steinberg to be sure it was CLEAR. They agreed and I was cleared as medically stable for pregnancy by both experts. There would be an increased risk of seizures because of the hemosiderin and scar tissue, but that was a risk I was willing to accept. I have been off keppra since about one year after surgery, and have been seizure free so far.

So with all things lining up, the only obstacle standing in the way of another baby was my fatigue, which I have tried nearly every way to remedy. Babies are a lot of work and usually lead to sleep deprivation. How could I manage?? John and I both really wanted another baby and so we had a lot of discussions about how we would manage. The last consideration was our ages. Being a maternal/newborn RN, I always held 35 as the cut off for pregnancy. After 35, no more kids....but I was 38. Too old??? We decided to give it six months of "trying" and if it didn't happen in 6months then it wasn't ment to be. Well, on the fifth month I got pregnant!!! I was so excited I couldn't stand it!!!

I was followed very carefully for my entire pregnancy...and everything was perfect. My due date was 12/22/13. The delivery was potentially the most risky part, so I was a bit nervous....but I knew it was in God's hands. There was nothing more I could do except think good thoughts and pray for a good outcome. My doctor decided to induce me on December 22 since that was my due date and there was no sign of real labor starting on it's own. We went to the hospital on 12/22/13 hoping to leave in the next few days as a happy, healthy, family of four. 

Everything was perfect!!! My doctor made it all happen...and we welcomed Luke Christopher on 12/23/13 @ 05:39am!! He is absolutely perfect in every way!! And our family is complete!! There have been many happy tears in the past two weeks. I almost can't believe it. We are so lucky, so blessed, so thankful!!! 

I was fairly nervous about the delivery, but held onto the hope that everything would work out. The labor and delivery was "uneventfully" perfect. No seizures for me, no brain bleeding!!! I feel great!!! And so little baby Luke is officially the icing on the cake. :) 

Our Christmas angel ready to go home Christmas Eve!

Proud, loving big brother Jack with his baby.

Attitude is everything!

Well maybe not everything, but one should never discount the power of a positive attitude. I whole heartedly believe that a big part of my miraculous recovery is attributable to my relentless positive attitude and my intentional focus on all things that are positive. Some people, especially negative people, like to discount attitude as a contributing factor in any survivor's success or lack of such in their own recovery. It's probably because they don't want to admit that their "bad"/negative attitude is preventing and/or limiting their own recovery. In reality, they should be looking for ways to foster a more positive attitude that can only possibly aid in recovery. Attitude is something that you can control and change. With so many unknowns involved in brain injury and recovery, it seems crazy to deny the possibility that bringing your most positive thoughts and attitude could aid in your recovery. I've certainly never heard of anyone ever blaming a positive attitude for a failed or unsuccessful recovery. Some survivors also don't want to or are afraid of taking ownership of or responsibility for their recovery. I think that too is a mistake. Own it, drive it, force it, will it, demand it, make it happen. If what you are doing isn't working, change it, get new therapists, try new therapies, change your thoughts.Whatever you do, stay positive and think YOU CAN change it, unless you are happy and satisfied where you are at. Many doctors and therapists are pessimistic...there is NO room for that negativity in your recovery. When you give up, start buying into the restrictions and limitations negative people place on you, or stop trying with all your heart, it's OVER!! By no means am I saying, that ALL anyone needs is a good attitude and positive thinking to recover. There are many factors(age, area damaged both how much and what part/parts, what type of damage, inherent survivor personality, motivation, ability, prior physical condition, other medical issues, medications, on and on) involved aside from one's attitude. I'm basically saying that while some things are a given and not changeable like your age. Your attitude is one factor that you CAN control and it can help or hurt you.

If you or anyone you know is struggling with a negative attitude especially while faced with a health crisis....look for help asap. There is tons of research on the benefits of positive thinking and an optimistic attitude. There are also tons of ways to change your thought patterns.

Some people mistake a positive attitude for a Pollyanna "bury your head in the sand....no action" attitude. They are not the same....not even close. And denial can get you into trouble. You need to be able to objectively evaluate the situation in order to make the best of it.  Look at all the factors. What can you control? What parts are not changeable? What do you want to change? How are you going to get there? Do you have a plan with "SMART" goals? Are you noticing, rewarding small changes/progress along the way? Always remember what is going well, and aside from the "problem area/areas" what are you thankful for? Always appreciating is key to a positive attitude. Maintaining a positive attitude doesn't always come naturally....at least for me it didn't. It takes work. Most people are not perfect at it at first, practice makes perfect. It's starting a new set of habits, it will become more natural in time. And yes, we all feel crappy sometimes, don't ignore it, recognize it, feel it, express it, and move on. Don't get stuck in the  sh**. It will never help you to stew in the garbage too long. If you are struggling to move past the garbage, get help. There are psychological techniques that will help you retrain your brain to move along: thought stopping and CBT are two effective options among many. Finding the help you need is critical. For some strange reason, people are afraid of talk therapy/psychotherapy, but they will take heavy duty pharmaceuticals like candy. I don't understand it. Therapy is highly effective....it IS the fix....there are no side effects, and the results last a lifetime. Where as, pharma is a band-aid of sorts. It can help you temporarily, but it is NOT the long term fix. Sometimes people need medication to get started on therapy and/or to help with therapy....but....therapy is the long term fix.

I had the "luxury"(at the time it was an agonizing process but I'm thankful for the time I had and that I used my time wisely) of preparing for my very scary, risky brain surgery. The year leading up to surgery, I did an enormous amount of research on all types of recoveries. Most people are forced into "stroke recovery", totally unprepared. While I wasn't reading about stroke recovery specifically (I did read some but not much)..I never thought stroke would be my reality...I read a lot about brain surgery, especially deep brain surgery recovery.I also reached out to willing survivors from Angioma Alliance that served as my mentors and models on what to do, how to recover, etc. Thank you everyone for sharing and helping. I don't know where I would be without the tremendous outpouring of support I received from my AA friends! I also read about all kinds of miraculous recoveries...cancer, MS, TBIs, etc. Any type of triumph of the human spirit was game. I was interested in any story that involved: a miracle, someone attaining the unattainable, beating the odds, or doing something everyone else said couldn't be done.  I read and read, and then read some more. I read every inspiring, hopeful story I could find. Survivors typically have no idea what to expect, or what to do when they are faced with starting a recovery. I had a fair understanding of what to expect (except I was wildly unprepared for how devastating psychologically it is to rebuild oneself). I had a very good understanding of what I needed to DO to get better, which was a HUGE advantage to those that know nothing at first. I read a ton of blogs and personal recovery stories during my preparatory period. A common denominator in ALL of the amazing and crazy good recoveries was a reported positive attitude of the survivor. I knew that was an important model for me to follow. I never read, heard or watched one "success story" in which they credited a negative attitude as a driving force that contributed to success. In fact, sometimes the individual would credit a "turn around" from negative to positive and reported a "rebound" from plateau to increased gains. 

When my surgery did not go as planned,(I suffered a stroke as a result of the surgery) I woke up acutely aware that there was something terribly wrong. The doctor asked me to raise my right arm..ok..tough but I could do it. Then raise my left arm...  Arrrr....with all my might.....no movement!! Doctor says,"Too weak?" I agreed, "Ya, too weak." Drooling out of the left side of mouth as I spoke. My heart was racing and my mind scrambling for any explanation aside from the obvious. "Oh crap," I thought. I knew it was bad. As tried to move anything on the left....nothing.......ugh..... I didn't vocalize my concern or panic initially, but I kept trying to move something/anything....NOPE.... nothing on the left not even a toe not even a little. The doctor called it "weak", but I was completely frozen on the entire left side of my body.  I immediately became focused, fixated on all that was OK or good. I wasn't dead. I wasn't in a coma. I didn't have amnesia. I recognized everyone in the room. I could talk and understand everyone. I was able to somewhat assess myself ,sort of able to determine what was wrong and what was right. There turned out to be much more wrong than I initially suspected, but those were the details. Most things initially seemed pretty good except no movement on the left and my vision was really messed up making me vomit every time I opened my eyes. From what I read...that was all fixable by way of neuroplasticity. My immediate plan was to focus on all the stuff that was good and as soon as I can start working on what's wrong I will. And I WILL get better. I thought...., I know it's hard work. I am a hard worker..I was made for this kind of stuff...just stay focused on the positives ALWAYS. That will help!!! I actually was obsessed with surrounding myself in positivity. If it was negative, it was out during my immediate recovery. That is no time to be distracted. Being/living completely positive was not exactly "natural" to me....so I felt I had to come up to speed fast. It's hard to change old habits but I knew how important it was and that my recovery...at least the part I could control hinged on my attitude. In the year leading up to surgery, I fully immersed myself in positive books, songs, sayings. It was what helped me manage the terrible anxiety about my future. Well, that and a lot of deep breathing. I also grew more spiritual. When I felt what I was handed was too much I asked for help. I was raised Catholic and so I have long considered myself a "recovering Catholic"....it's a long way back to any type of spirituality when you have been subjected to 10 years of Catholic school. At times in the not too distant past I would identify more with an atheist/agnostic attitude than anything else. I hated religion and anything remotely close to it...don't even think of using the word God....it was like nails on a chalkboard. My Catholic upbringing really tainted my view on spirituality and my love of science helped me to stay that way for a long time. I can't buy into any belief system that denies the truths of evolution, or any other proven scientific facts. Whatever I'm going to believe needs to make sense to me. That year before my surgery really helped me to find myself and my spirituality. I was finally able to create a spiritual belief system that comforted me, and helped me meld science with spirit...two things that seemed mutually exclusive to me prior. So my asking for help outside of myself was a HUGE shift for me...just so you know I'm not, never have been, and never will be some sort of "bible banger"  wanting to convert the world. I understand how sensitive people can be about their spiritual beliefs. I was probably the most extreme "anti all of it", "keep your beliefs to yourself" kind of person before. People need to figure it out on their own, come to their own conclusions. Now I can filter it better. I'm not offended or turned off to as much as I was before. I can tune in or out a message better. Before, if the delivery involved any parts that were not agreeable....it was out...the bathwater and the baby. And so I digressed, but finding my spirituality and staying positive go hand in hand for me. It's easier to stay relentlessly positive and strong while feeling I have the infinite power and energy of the universe on my side and at my disposal. I believe the energy is there and we can access it to achieve the "unachievable". The energy is limitless. ( I just haven't figured out how to harness this energy to beat my fatigue yet...hopefully someday!)

Anyway, I knew I could potentially come out of surgery much worse than I went in, but it was a gamble I felt I had to take to reclaim my life before it was too late. Either I was going to take control with the help of the best surgeon in the world or my angioma was going to take control. I am a total control freak, so the angioma had no chance, and I hoped Dr. Spetzler would work his magic. The recovery was on me. Only I could do it, and I couldn't afford to mess it up. My husband and boy were counting on me. They needed me to be my best, and I wanted to be my best for our family....besides....being all messed up sucks. It's sooo hard. There was no way I could stay like that. I read about neuroplaticity and how to make it happen. Repeat everything a zillion times, stay positive, don't give up. And don't get depressed. Depression following brain injury is common. All your neurotransmitters are whacked, so do what you can to stay positive...it will help. Piling on the negativity with whacked NT is a recipe for disaster. So that's what I did, focus only on good positive things. It was easy for me because I'm surrounded by Jack and John..the two loves of my life! I know how lucky I am, and I'm appreciating every moment of not being dead, even when I felt like complete garbage which was most of the time. I tried to look my best and be my best everyday. I thought if somehow I looked better, I might feel better. I'm not sure that's the case, but it sure did surprise my nurses and therapists when I showed up all put together the first day of rehab...the best I could. In perspective I could have been worse, and I knew it. I was grateful for where I was at. Some stroke survivors are angry and unable to appreciate the moment,or find anything positive about their situation initially because the whole thing is dropped on them like a bomb overnight or in a matter of hours/days. I had time before to think, to evaluate, to form a perspective. I knew what I was going into....sort of....I was hoping for a normal 6 week recovery like the surgeon had suggested prior to surgery...but I was not naive. The surgeon was sugar coating it....giving me the best case scenario, but my surgery did not result in the best case scenario and I was faced with the challenge of recovering to the best of my ability. I took the challenge and fought back with all the knowledge I had about recovery, with every bit of energy that I could muster, with the best attitude possible, and with only one possible outcome....I WILL RECOVER!!

Now maybe I  was lucky, maybe this and maybe that. What I know is that I was messed up, and while I am "different" today....I have a lot of smaller issues and one monster fatigue....I am WAY better than I was and I think having a positive attitude helped in a very big way. Maintaining a positive attitude is much more natural now. It's my new habit. I'm not perfect at it 100% of the time, but when I get off track, I try to get back on asap. Besides thinking a positive attitude is helpful...., it just feels better. :) Think good thoughts!!!!

Think good thoughts

I am a HUGE fan of the power of positive energy and thinking. Jack's favorite artist of all time is Collbie Caillat or as he calls her "Bobo". We have been subjected to countless hours in the car with the same 2 cds repeating non-stop. While it gets annoying, hearing the same songs again and again... There is one song that never gets old. "Think good thoughts" That is the soundtrack that I want my brain to be programmed with. We have heard it time after time...but that's it...that's the message I want to think, practice, and remember always. I don't have time now, but I will post more on the power of positive thinking later.


                   "Think Good Thoughts"

I'm just gonna say it,
There's no using in delaying,
I'm tired of the angry hanging out inside me,

So I'll quiet down the devil,
I'm gonna knock him with a shovel,
And I'll burry all my troubles underneath the rubble 

When I'm alone in my dark dark room,
I have to tell myself to,

Think good thoughts,
Think good thoughts,
Imagine what the world would be if we would just,
Think good thoughts,
Stop the bad from feeding,

I won't let the negativity turn me into my enemy,
Promise to myself that I won't let it get the best of me,
That's how I want to be
Na, na, na, na

I'm not saying that it's easy,
Especially when I'm moody,
I might be cursing like a sailor till I remind myself I'm better,

Cause words can be like weapons,
Oh and you use them, you regret them,
Oh but I'm not gonna let them take away my heaven

And when I start feeling blue,
I remember to tell myself to,

Think good thoughts,
Think good thoughts,
Imagine what the world would be if we would just,
Think good thoughts,
Stop the bad from feeding,

I won't let the negativity turn me into my enemy,
Promise to myself that I won't let it get the best of me,
That's how I want to be

I just think rain on a summer night,
Stars filling up the sky,
Sunshining on my face,
Making a secret wish,
Finding my happiness,
That always makes me hold my head up high,
I wanna hold my head up high,

I wanna think good thoughts (Imagine what the world would be if we would just think good thoughts)
I wanna think good thoughts (wouldn't that be something?)
I won't let the negativity turn me into my enemy,
Promise to myself that I won't let it get the best of me,
That's how I want to be
Na, na, na, na

Heartbroken

It is with much sadness that I share the tragic loss of my sweet, loving, kind, witty, amazing sister Natalie Ann. We lost her a little over a week ago on Saturday, 7/27/13. Life will never be the same for our family.

This is what I tried to say at her memorial. I am so sad, it barely came out of my mouth and I'm not sure the words were audible between my sobs of despair...but I tried! Natalie we miss you and love you forever!!

In early 1983 I was an 8 year old girl. I was the “baby” of the family for as long as I knew, and I was happy in my role. But my mom told me life would change in 9 months time and there would be a new baby in the house. I was devastated at first, but my mom gently explained that I would always be her “baby” and soon our family would have more love to share. With me being completely obsessed with all things baby(For those of you that do not know me, I have always been and still am obsessed with babies. My dolls were the only toys that mattered). I was easily convinced that a new baby was just what we needed. The idea became more and more exciting with each passing month. My mom’s belly grew full with a perfect baby girl growing inside. We would read books and look at pictures of how “our baby” was developing inside. We would feel her kick and watch her move every night. I was completely enthralled. I could hardly wait for the big day when we could bring our baby home. I thought, “Wow, we get a real baby to cuddle, feed, and change.” My dolls weren’t nearly as fun as a real baby would be…I was sure! On November first 1983 it was a crisp morning, and the baby was finally coming. On the way to the hospital the sky was filled with the most amazing rainbow you have ever seen. It was a sign! The heavens were smiling down and illuminating to announce our precious angel Natalie Ann had arrived as a gift from God! She was the most beautiful, perfect baby I have ever seen and our family was now complete...it's so broken now. Over the years, I took great pride in loving and caring for my baby sister with all my heart. I wanted to help with everything. Everywhere we went people stopped us to look at and touch our "Gerber baby". As the years passed Natalie would sometimes complain that she felt she had 3 mothers and no sisters. While that made me sad, Juliet and I were so much older, I could understand her sentiment. No matter how she felt, I always loved her to pieces. I wanted the best for her. She grew into a smart, sensitive, witty, hard working, funny, kind, and amazing woman. With all she had going for her, I was certain she would find her way even as she seemed to struggle at times. I really thought she would work it out to live her dreams. I am devastated that she felt so hopeless and has left us prematurely. She wasn’t finished. There is so much more to life than she got to experience. My heart is broken and there is a piece missing that only she can fill. Dearest Natalie, please know how much you mean to us, how much you are loved, how sorry we are that we couldn’t help you, and know you are missed deeply until we meet again.

Cental Pain Syndrome resources

I consider myself very lucky to not be affected by the "pain monster" that is CPS. One of my dear friends is afflicted with this monster and she has put together a number of resources that she has come across. I am passing them along to you in hopes that if you have CPS, you can connect with others and benefit from this list Patti has assembled. If you know of any additional resources, please post them in the comments so that others may benefit from your wisdom.

CENTRAL PAIN SYNDROME (CPS) RESOURCES



Patients Like Me: Central Pain Syndrome
http://www.patientslikeme.com/condition ... n-syndrome

CPS UK (Central Pain Syndrome) Blog
http://centralpainsyndromeblog.wordpress.com/

Weeks after Stroke, Some Patients Develop Chronic Debilitating Pain

http://oc1dean.blogspot.com/2013/05/weeks-after-stroke-some-patients.html

Central Pain Syndrome Alliance
http://www.centralpain.org/

Fluoxetine Reduces Central Post-Stroke Pain: A Comparitive Pilot Study 
http://en.cnki.com.cn/Article_en/CJFDTOTAL-ZTYZ200405006.htm

I Have Central Pain Syndrome
http://www.experienceproject.com/groups ... rome/97371

Central Pain / Facebook
https://www.facebook.com/pages/Central- ... &filter=12

The Fires of Hell Blog
http://thefiresofhelldotwordpressdotcom ... com/about/

Central Pain Syndrome Foundation
http://centralpainsyndromefoundation.com/

Central Pain Foundation / Facebook
https://www.facebook.com/CentralPainSyndromeFoundation

What Central Pain Syndrome is Like
http://www.youtube.com/watch?v=vEV6FompwZg

CPS Sufferers Not Alone
http://www.youtube.com/watch?v=Y1TRXgW5jcw

Central Pain Syndrome "Message from Hell #1: How Are You?"
http://www.youtube.com/watch?v=h54Q5AQJ-Ss

A Day in the Life of Central Pain Syndrome
http://www.youtube.com/watch?v=8ed6hazqNYU

Central Pain Syndrome: lives in constant pain
http://www.youtube.com/watch?v=NIG0KywCwIY

Central Pain Syndrome: I am one among 100,000
http://www.youtube.com/watch?v=JD26ZAYh9Ck

Central Pain Syndrome: lifestyle changes
http://www.youtube.com/watch?v=aJQkfUrm ... tube_gdata

 
Patti's Ongoing Journey @ http://www.youtube.com/watch?v=gvtkxDFICO0


Patti's Story @ http://www.aans.org/Patient%20Informati ... strap.aspx



The power of Hope

I came across a blog that is new to me a few days ago, and I need to share it. I just LOVE, LOVE stories of hope, love, and commitment conquering the "impossible". Never let anyone steal your hope, dreams, and desire to achieve that which is labeled impossible. Doctors, especially neurologists, in my opinion, love to rain on your parade. It seems as if most of them take pride in sharing the doom and gloom in every situation. No matter what they tell you, your recovery does not have a deadline...it's never over until you say it is. If you want to get better,... do different, new, intense therapies, stay positive, and keep working. With hope....all is possible. The blog I found is called Hope Heals @ www.hopeheals.com  I love the name, the premise, and their story. It's a love story of a new mother and wife that suffered a massive brainstem bleed due to an AVM, and a loving devoted husband that supported and continues to support his wife every step of the way! In many ways it reminded me of our story, except her condition was much more severe than mine. They have put together a video telling their story, and it's very well done. Enjoy! 

All clear!!!!

Back in December, around my 2 year anniversary I had what will hopefully be my last MRI for a long time. We were elated to finally receive an all clear from 2 of the known cavernous angioma experts(Dr. Spetzler and Dr. Steinberg). I have had several "scary" reads in the past few years so finally getting the news we wanted to hear was almost unbelievable...but sooo good!! :) YAAY!!! My journey with cavernous angioma is finally over....hopefully forever!!! It makes it all worth it. All the stress, heartache, worry, frustration, and hard rehab work. It's all just part of the price we paid and I know how lucky I am. Not a day goes by that I am not filled with gratitude and appreciation for how lucky I am to be here and be as good as I am. 

Last year my report came in clear at the surgical site, but with a possible new angioma forming in my brainstem. At the time, I chose to just ignore the possibility...it was such an overwhelming miserable possibility. So the relief I felt when they changed their tune this year was unexplainable. Turns out what they are seeing on my brainstem is extensive brain damage, as evidenced by Wallerian Degeneration on the scans which can continue to evolve in the images for a long time. Lucky again! I have a ton of brain damage and really do very well anyway. They have said that individuals that exhibit this type of damage on MRIs typically experience poor recoveries which has not been my experience at all. Yes, I am still dealing with pretty severe fatigue, but when I get the crazy amount of sleep I require, I do pretty well. Thank God!!

The real significance in the all clear is that it allows us to move forward on "the next step" in our lives which will be detailed in my next post whenever I get a chance to write more.  Additionally, with cavernous angioma resections it is critical that the angioma be removed entirely because if even a single cell remains the angioma can and often does grow back and bleed again....Oh please....never again!!! At my 3 month MRI they called my resection a "partial resection" meaning only some was removed. I had hoped they were wrong, and as of the latest scan it looks as if the "entire angioma" was removed! Thank you, Dr. Spetzler and team!!!

As always, thank you to everyone that has offered support, advise, and kindness along our journey. We really appreciate all the love we received!!

2 Years

I missed my two year anniversary of my surgery/stroke on December 10th. That is a very good thing and is only possible because I am doing spectacular. I could have never imagined "forgetting" that date after only two years have passed since that very significant life changing event. I woke up from my surgery a complete mess, and not a day goes by that I do not feel eternally grateful for my current life and existence. I have spent the better part of the past two years working on my recovery. I still have a bunch of things that are "not right", but I know I am lucky. I worked crazy hard and I saw equally crazy good results. Even this past year, my recovery has slowed but I am greatly improved over last year. I'm going to list my current complaints as a point of reference for next year. These are the things that I am still working on:

Fatigue. This is the monster I fight everyday. I am soo darn tired all the time. I used to sleep a lot before my brain injury but I was also had lots and lots of energy and I could accomplish anything I desired. Now I get tired so easily and it actually feels painful I'm so tired. It's not normal, but it is becoming my new normal. This past year I saw some improvement in this, but it's still very far from normal. I am now awake twice a day for 5 hours...the rest of the time I'm sleeping. I have tried every single treatment option with little to no success...maybe this one is just time??

Left leg/calf/foot? I'm not sure what's wrong exactly, but my left shoe always falls off. Last year I struggled through still wearing my regular old shoes. They fall off with every alternating step (only the left foot...my affected side). My thought was that as I continued to wear them...my muscles would strengthen and it would stop. It didn't and so this year I bought new shoes with straps and a few pairs of boots. I asked my neurologist to send me back to PT to work on this because I would love to be all better...and she said no because well...I'm pretty darn good. No AFO, no cane, just a shoe that falls off. Grrr.Whatever...I know I'm lucky...just picky I guess.

Fine motor in left hand is not great, but I am right handed so it's not much of an issue. I can use my hand to carry something, open a door, etc, but small things are tough. Zippers, buttons, opening mail, those are reminders of where I have been because they still provide a challenge. John is often reminding me to "use" my left arm because it's mostly just hanging around. I should concentrate on using it more. I would probably get better; I usually just "forget" to use it.

Hyperacusis(crazy intense super hearing) This one is very annoying. My hearing is turned up way too much. Small sounds sound loud and loud sounds are painfully unnerving. This makes social situations more difficult. Restaurants are too loud. Parties and get togethers are draining. Music/TV background noise is like nails on a chalk board. Tiny sounds wake me up constantly even though I wear ear plugs and have a fan to drown out noise. This has improved some but is still a pretty big issue.

That is mostly it....lucky!!! I am certainly not complaining...just explaining where I'm at. I have some cognitive issues like slower than normal thinking, some difficulty with auditory processing, difficulty multitasking. I am also easily overstimulated visually usually while shopping, and by too much noise often. I'm so much better than I was and I'm getting better all the time. The cognitive issues are reminders to me, but nobody else would probably notice. I try to be patient with myself. Patience is a HUGE lesson for me and just one of the main take aways from all of this.

 

Acceptance?

*****I actually started this post in October....just getting around to posting it now****

I have had a sort of shift in my thought process in the past few weeks. You hear about "acceptance" in the stroke world and it always carried such a negative sort of connotation for me. As if accepting any of these deficits means I've surrendered, quit, or given up....and that is NOT what I'm about. I am persistent like crazy so how could it possibly be that I am coming to place of acceptance. Perhaps it's a different kind of acceptance, my own kind...that means I only accept certain parts of this for the moment...for now. I still hope and pray I will get better but I need to be cautious to not allow my not fully recovered state to limit me. Rebecca, from Home After A Stroke blog wrote a short line that has really sat with me and helped me move more towards acceptance than ever before. "Waiting for my real life to begin." That's exactly how I have felt. Once I'm all better I could do x, y, or z. Well guess what....this is my real life...I'm not all better. I'm lucky to be here and be as good as I am. I need to move forward and stop waiting for my real life begin. Coming to that revelation was very emotional. My life is far from the way it was, I'm not sure when or if I will ever get where I want to be. It doesn't mean I'm giving up on getting better ever...it just means that I'm going to continue to live in gratitude where I'm at today. Living with my current deficits means I need to make some changes. I'm going to need to ask for help sometimes...even though I hate asking for or needing help. This fatigue is consuming at times. It's frustrating for me to want to do so much only to find my self NEEDING to sleep a few hours after I woke up. I have spent the better part of 2 years trying to find a solution...to which nothing much has helped. I remain optimistic because I am way better than I was immediately post-op, but I still have a long way to go. So far there has been no great explanation for why my fatigue is so intense. Some of the doctors have called it "post stroke fatigue" PSF and they said I could deal with this forever. I hope they are wrong. There is little research focused on PSF, although it is a very common occurrence after stroke. This is my most limiting deficit today, and yet I am comfortable accepting it and moving forward. If I was left with a leg/hand that didn't work, I would have to use an AFO or brace to help me...I need massive amounts of sleep, breaks, naps. That's just how it is and I am LUCKY! I'm not waiting for my real life to begin anymore and that makes me happy! :)

Tackling fatigue

I am now a year and a half out of deep brain surgery and stroke. Fatigue is a deficit that I can not yet escape. My recovery has been excellent except for this fatigue. I HATE it!! I am constantly reading, researching, trying to figure out how to fix it...a mostly fruitless effort. But I never give up HOPE that it will get better. When? How? I have no idea, but the following outlines my latest effort.
I saw an endocrinologist to make sure there are no other medical explanations for the crippling fatigue I deal with daily. It seemed like a good idea because after brain surgery one can never be sure that something else didn't go wrong while they were in there. I also have hypothyroid (onset 4 years ago during my pregnancy) which is often a cause of fatigue, but supposedly my thyroid has remained stable according to my PCP. My opinion is that my thyroid is at least part of my fatigue problem, but I can't be sure. So, I had a full work up with the endocrinologist and there were a few issues identified. According to the tests, my thyroid was within the "normal" range and my blood sugar is low frequently. The doctor changed my thyroid to Armour and doubled the dose despite the "normal range". What do you know? I got two more hours out of the day. Previously I was awake for 4 hours twice a day, now I'm awake about 5 hours twice a day. So I think I'm heading in the right direction. My assessment is that I need more thyroid, and I need to do something about my diet to regulate my blood sugar better. I probably need to eat more frequently. Since my surgery I am less hungry, my body just doesn't seem to send the hungry message, so now I'm trying to eat at least every few hours even when I'm not hungry.

Next, I saw a naturopath. She did an assessment and made a ton of recommendations both dietary and supplements. I went home and started to look up all the supplements and was completely freaked out. I don't like taking any mediation and supplements are even more scary to me since they are not regulated at all. There is no guarantee that what they say is in the bottle is actually in there and sometimes they don't even know the active ingredient so there is no chance of "dosing" the unknown. You can not easily look up interactions, contraindications, adverse reactions, and such like prescription medications. The research on supplements is largely anecdotal and rarely includes double blind, controlled, peer reviewed, published studies. SCARY!!! I like evidence based medicine. But I want to feel better so badly and maybe this stuff just might work, but at what risk? Oh, what to do? I did a quick look up of all the supplements she had recommended and most of them contained ingredients that had the potential to lower the seizure threshold and figuring out which could be blood thinners was close to impossible(anyone with cavernous angiomas must avoid anything that thins blood)..YIKES!! and no thank you! I'm trying to get better not worse. My risk for seizures is high since I have "persistent hemosiderin" "remnants of old blood from my bleeding angioma" (they were not able to remove all of my blood stained brain during my surgery because there was just too much.), and now I also have scar tissue that can create seizures. I am also off anticonvulsants by choice, risk known to me, which puts me at an even greater risk. So  anything that can potentate seizures is out for me. To me that is what is frightening about alternative medicine. Some people think, "It's natural...it must be safe." No way!! Supplements can be more dangerous than pharmaceuticals, even though it's pharma that gets a bad rap.

The diet recommendations were a whole other story. The purposed diet was: no dairy, no caffeine, no gluten, no corn, no beans, no white rice, no soy, no nightshades(potato, tomato, etc.), no mushrooms, no eggplant, no carrots, exchange regular sugar for stevia when possible, no soda, and no alcohol. So what's left exactly? Not much. As much as I was less than thrilled with the purposed restrictions...I thought I had to at least give it a try. For one week...I did. I lost 5 lbs that week and felt like I was starving...still completely exhausted. No different in the energy dept.

Needless to say, the whole thing was a waste of time and money. The lady did refund my money for all the scary supplements she recommended, after arguing with me(which was completely annoying to me). Especially since she told me that I was "lucky" she was not charging me for the time that she spent arguing with me on the phone. Please, I already spent $300 on the office visit that was a complete waste I think if you are in the professional business of recommending supplements you should be completely informed of the risks involved. As a nurse, it was my responsibility to make sure that each and every drug, prescription, intervention, was appropriate for my patient. Sometimes the doctors made mistakes and it was my job to make sure the drug, dose, etc. was right for the patient. If you are in healthcare it is your duty and responsibility to not cause harm at the very least. I expect the same level of responsibility and accountability from members of my healthcare team that I provided for my patients and I think it's complete crap when my expectations are not met. 

As for my fighting fatigue plan, I'm starting to run out of ideas, but I will never give up hope.

Learning to just BE

Many parts of this whole "brain thing" have been difficult...and I have faced many challenges along the way...but one thing that I have gained is priceless. Previously, I was borderline OCD....type A personality....a "perfectionist" of sorts. I was also always on the move, going, doing, busy, very busy. I held several jobs at once while in college. I was always taking a class, earning a certification, maintaining a licence, on and on. I was going in a million directions all the time. A brain problem and major fatigue is a sure way to put an end to all that chaos. It's coming up on three years since my initial diagnosis and my life is completely different. While my new attitude would likely make me "less employable" it doesn't matter today and I am finally enjoying my new found ability to just be. There are days...sometimes weeks that I don't actually do anything or go anywhere, and I'm ok with that. Doing nothing, or going no where would have made me crazy before. Prior to all this if I didn't have my car for a day, I would feel claustrophobic. I guess not being able to drive at all for almost 2 years is a sure way to fix that. I can drive now, but I rarely do. Accepting and embracing my new lifestyle was a slow process for me and quite an adjustment. I certainly shed many tears along the way, frustrated when I "couldn't" do this or that. Now, I'm completely content to just be...as long as I get a nap. ;) Even as I improve I hope to never fall back into my old ways. We recently went on a vacation to Kauai. It was a fantastic trip, and I spent most of my free time just taking it all in...from my lounge chair overlooking the ocean. I didn't need to be snorkeling, going, or doing anything. I was content just hanging out. With a very busy three year old, the opportunity to just be is far and few between, so I am glad to be able to sit back and enjoy the few fleeting moments in time when nothing is happening. I'm so thankful that I am now able to really capture the moment and I have learned how to truly savor it.
    

Cental Pain Syndrome (CPS)

While this term/diagnosis might be unfamiliar to many of you...the symptoms or complaints are possibly painfully familiar. Central pain syndrome remains a bit like a "mystery diagnosis", in that there are few doctors identifying this syndrome. There are likely greater numbers of survivors suffering in pain alone because doctors have failed to identify CPS. Even once the culprit of the pain is identified, there are few treatment options today. :( My dear friend, Patti G, is not only afflicted with multiple cavernous angiomas but she also has been afflicted with this monster and she is doing her best to "get the word out"...so that CPS will not longer be such a mystery...and hopefully some day there will be a solution to this terrible pain. Please help spread awareness by sharing the fantastic video that she put together. Watching this really puts my fatigue in perspective.  As much as I hate being tired all the time...at least I can escape it while sleeping. Pain is truly the worst deficit imaginable to me.

HOPE

I saw this on another survivor's blog. While his recovery is seemingly not a brain injury, to me the message is the same. HOPE is so powerful...don't let anyone put limits on your recovery. Your recovery is over when YOU say it is...That's it!! I love this video!
Warning: I don't know about all the falls he took...looks pretty dangerous to me, and the standing on his head...no way!!But his focus and determination are simply amazing!! 

Thanks to Barb for sharing it. She wrote an article,  http://www.communityadvocate.com/2012/06/18/i-was-just-thinking-about-disabilities ,and someone responded with the video. I had to share it and I can hardly wait to see the movie.http://www.inspiredthemovie.com

WHY? Why did I decide to have surgery?

I have been asked this question many times. Just recently a reader asked again, and I don't think I've ever spelled it out here...so here goes.

My decision to have surgery was by far the most difficult decision of my life. By no means is my explanation an endorsement of surgery or a suggestion to anyone else to have surgery. Surgery is a very personal choice and one that I think warrants much thought. When I was first diagnosed 8/31/09 with a cavernous angioma in the middle of my brain (located right insular cortex/putamen/internal capsule, basal ganglia), I was told by my the first doctor that I had better hope I never needed surgery to remove it because they will never be able to get it out without causing significant damage. The first doctor also said not to worry about it because according to her "angiomas NEVER cause problems." Well, she was wrong in almost everything she told me. I went on to get several more opinions because I had a list of questions and nobody could answer them. I didn't feel comfortable with the opinions and advise I was receiving and as a nurse I had a decent understanding that many of the MDs I saw were blowing smoke...they didn't know what they were talking about....and I wasn't buying it. Basically, I saw doctor after doctor looking for real answers. Meanwhile, I was feeling worse and worse. My choices for doctors were limited at first because I had an HMO insurance plan. Prior to this diagnosis, I was never sick, never went to the doctor, and I wanted the cheapest form of insurance I could get. When you end up with a brain problem, HMO insurance is pretty much a bad idea (I don't want just anyone poking around in my brain...only the best of the best if absolutly necessary, please)...so I eventually switched to a PPO and then I could finally see some real experts and I started to get very different answers. While the first few doctors I saw said no surgery, they also knew nothing...so how valuable were their opinions? Eventually I saw Dr. Martin at UCLA, who has an excellent reputation. First time I saw him, he said I needed more testing, "a better work-up". I saw a bunch more neurologists and went back to him with my list of remaining questions. He seemed pretty annoyed with my barrage of questions and ended up giving me a flip-flop answer to surgery...No then yes, but maintaining that I will more than likely NEED surgery because of future bleeding and resulting worsening deficits in my lifetime. I wasn't sure what to do, but I was finally getting answers. I sent all my "stuff" to Dr. Spetzler and his resident called to tell me that they recommended surgery. My heart sank. I felt sick...now what? I had a lot of knowledge at this point and was hoping he would say, "Let's wait and see." I felt that if one of the best experts told me to wait and see...then that would be it....wait and see. The resident told me that they felt my risk was much greater to leave it than to remove it. Based on my MRI's and my worsening condition I knew he was right, but I was so scared. I had an MRI every six months from diagnosis and each time my cm was bigger and showed new bleeding. One year from my initial diagnosis, my cm had doubled in size to about 4cm.  The growth and bleeding coincided with me feeling more dizzy, more frequent partial seizures, worsening vision to the point I could no longer drive, and a few occasions of not being able to walk. Not being able to walk was really scary as were the seizures. It was becoming obvious that I might become paralyzed because of the surgery, but I might also become paralyzed without the surgery. At first, I was worried that having the surgery might make me worse....but I was getting worse anyway. I began to feel like,"What am I waiting for?" Still not convinced I was making the right choice I connected with others that already had surgery and I sent my "stuff" to more experts.(While no surgery or recovery is the same, talking to others helped me tremendously.) Dr. Samson in Texas has a great reputation so I sent my stuff to him. He wouldn't give me a recommendation unless I was physically in his office and Los Angeles is a long way from Texas...so I never actually got his opinion. I also sent everything to Dr. Steinberg at Stanford, who is also considered one of the best, and he recommended surgery too. I was getting good at asking questions by then, and his nurse practitioner gave me all the same answers as Dr. Spetzler's resident...so I finally felt I was on the right track. All my questions were answered the same...finally!  Connecting with others who had been there done that was invaluable and a big reason why I put my story in this blog. There were so many wonderful people willing to share with me their ups and downs, their personal experiences...I am forever grateful to them for helping me make my best choice and for supporting me from start to finish. :)  The main criteria the doctors gave me for recommending surgery for me were: my cm was big 4cm...since it was so large, the potential for a very big bleed was increased, my cm had a history of bleeding (more than 3 times already) so chances were higher it would bleed again, my age (36 at the time) "young" according to them giving me many years of possible recurrent bleeds without surgery and younger people tend to recover better, I only had one angioma (having multiples changes everything),and they thought they could access my cm without much damage. There was also the added bonus for me, that if my surgery went well I might get to have another baby...which I would love! I believe that my first pregnancy/delivery was the trigger for my angioma to bleed and grow. I knew that I could not consider another pregnancy unless my angioma was removed, the risk of further bleeding and progressive deficits was just too high for me. While a possible future pregnancy was not my only or primary reason for having surgery, I did view it as a possible bonus. Being a mom to Jack and wife to John were my two most important goals. Would I be able to be all I wanted to be without surgery? Long term, would I be better or worse off with or without surgery? Those are the tough questions that nobody can answer. I suspected that the surgical risks they quoted me, 5% chance of all the scary stuff was probably very optimistic..but I wanted to believe I would be lucky enough to avoid all the scary things...especially death. Honestly, I think the surgeons should do a better job of explaining the reality and high risk of brain surgery, especially deep brain surgery. I guess it was their attempt to make me more comfortable with the whole thing. It didn't work...I was terrified, but ultimately I knew it was out of my hands once I decided surgery was my best option. I knew from doing tons of research that my location was terrible. It's a really tough spot to get to and it all comes down to splitting the Sylvian fissure. If that part goes well...hooray!!! If not, ut oh! The brain stem is often considered one of the most difficult locations, but I knew mine was right up there in terms of difficult access, and ultimately that's why my surgery resulted in a stroke...very uncommon for angioma surgery especially with Dr. Spetzler. My Sylvian fissure did not want to be split. There were several blood vessels in the way, so it was either they cut one vessel and take out the angioma or they stop the surgery and tell me, "Sorry, we cut your head open and started, but we can't get it out." They made the executive decision to proceed with the surgery and I am thankful for that.

Some people go into surgery with the expectation that they will not have any new deficits following surgery. To me, that is a naive and unrealistic expectation. As a nurse, I always felt that once you have brain surgery "all bets are off". You might survive but will you be you? I don't remember which book it's from but this line stuck with me, "Brains are not built for service".  Brain surgery is always a BIG deal, and I felt/feel very lucky to be alive and to still be me!!! When I woke up, I was a mess...I knew it...and I was a tiny bit scared...but I was very HAPPY!! I thought I'm alive, I am still me, we can work on everything else, and I still feel that way today.

For me, the decision to have surgery was the right one. Maybe for others, they would have been wrecked by the whole stroke complication. I knew that stroke was a possible risk...while I was hoping to avoid it, I know there were far worse things that could have happened to me. Living with the monster that was in my head and the reality of a lifetime of progressive neurological decline would have been worse for me. I wanted to be proactive about my life and not let this angioma consume me, as it had for the year prior to my surgery. My angioma was growing and bleeding actively for a year...it was horrible!! There were days prior to my surgery when I couldn't do much of anything. Jack was small and just learning how to walk. Some days I would just lay on the floor blocking him and I into a "safe area" and hope we would survive another day. I had surgery ultimately to reclaim my life that I felt was slipping away, and I am glad I did! Please feel free to ask me any questions if I left something out that you are wondering. Best wishes to anyone out there contemplating surgery. I know how hard that decision can be. My advise :get as many opinions as you need from  cavernous angioma experts and then weigh your decision carefully.