Welcome to our blog! I originally started this blog in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. You can best understand the gravity of our experience by reading the first several entries.(Nov 2010-Dec 2010) I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication (stroke)that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at thankfulforeveryday@yahoo.com and I will respond although I am not a doctor and this is not a replacement for medical care or advise. Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery.

Monday, May 18, 2015

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 starred 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

Wednesday, May 6, 2015

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!!!


Monday, February 2, 2015

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!!!



Thursday, September 25, 2014

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

Monday, September 15, 2014

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 :) !!!


Friday, August 29, 2014

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!!!

Monday, January 6, 2014

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.