Thursday, February 26, 2015

They are home

Hi guys :)
I forgot to let you know that both Heather and Eunice are home :) Surgeries went good and they are now home and recovering!  Eunice feels a lot of fatigue easily, which is so normal.  She is back home in Texas and will be doing therapy there.  Her left side is heavy and she has trouble with balance, which she did before surgery. She has no major new deficits!  Heather says she does not have any new deficits at all!

Monday, February 9, 2015

2 new warriors

I will always do all I can to encourage people to be pro active and seek the opinion of Dr.Spetzler to anyone with a "inoperable" brainstem cavernoma. Surgery remains a personal choice if he gives it to them as an option!

I dont like getting praises for helping people find Dr.Spetzler, simply because, believe me, if these people had gone home and listen to the Doctor, they would of never found me. Instead, they were pro active and researched, then they found me. The same way I found Akiva, my very first glimpse of hope.

That said, that brings me to Heather and Eunice!

Back in September, I was contacted by Heather thru the support group (AVM survivors) that eventually saved my life by teaching me to be pro active, to not just take what the Doctor said as if its the last word, but to really research, and listen to my "guts".  She sent me a private message after reading in my profile that she too, was diagnosed with a brainstem CM.   Months later, this is what is happening:

"I will have a right retrosigmoid craniotomy at Barrow Neurological Institute. Dr Robert Spetzler will perform the surgery.

The cavernous malformation with DVA has increased in size from 5.6 mm to 8.3 mm from Aug 2014 when first diagnosed to Jan 2015. The CM is located 1 mm from my brainstem in the right cerebellar hemisphere. 

Dr Spetzler and my local neurosurgeon in Northwest Arkansas both agree that surgery at this point is wise. What an emotional few years it has been!

Thank you to Lisanne for her support, she is the person that directed me to Barrow after meeting through an online support group in the fall. 

After opinions from three neurosurgeons and educating myself and family; I am confident in my treatment plan. I am anxious as I have a husband, 14 year old son and five year old daughter ready to have their wife and mom healthy and well.

I pray, trust Him and fiercely move forward!"   -Heather

Her surgery is tomorrow, February 10th!! I really meant to post earlier, but I am always so lost when it comes to dates!! She is in Phoenix right now having her day of Pre-Op.  Please do follow updates of the surgery on her facebook page. I will also be updating mine.

That brings me to Eunice.  We have been texting for a few months now :)  Funny thing is, I dont remember exactly how we got in touch. I just know that I shared my phone number right away, because that is what I do. I know how important it is to get answers when you find someone that has some!   I got a call from "my people" right away too. In fact, I was in the hospital when Akiva called me and Christine and I started texting.

Here is a bit of Eunice's journey:

"I was 28 at the time of my hemorrhagic stroke October 2012, a months and a half after my birthday.   I was at work when it happened.
Eunice with her husband Jeremy.   
I called my husband to pick me up and take me to the hospital because I didnt feel right. Later, when I got there, a CAT scan was done and there was blood in my brain. When I heard that, I was surprised and in disbelief. I was transferred to another hospital and I was there for almost 2 months.  I have never received an MRI but got familiar at the hospital and found out what caused the bleed. It was a cavernoma.
A month after the bleed (stroke), I was supposed to get one (an MRI) because I had never have one and because I always have headaches, which of course was too late and didnt happen.

Ever since I left the hospital, I've been with my parents doing rehab and getting help and I go to the gym every day since March 2014.
On February 17th 2015, I will have surgery on the brain stem by Dr. Spetzler, in Phoenix and hopefully remove the cavernoma.  I am from Texas. "

So, my friends, I am asking you, as I have in the past, to keep these 2  beautiful ladies in your thoughts and prayers.   Eunice does not have a Facebook page, but I will be updating me as I receive texts :)   I have no doubts that they will go thru surgery just fine, with the finest of surgeon.   The surgery, as invasive and crazy as it is, is just a small part of the whole recovery process.  Praying for strength, joy and peace, is what helped me the most.   Praying for a quick recovery is fine, but this is a long recovery, its normal that it is a long recovery, and a better word  than quick would be Smooooooth. :)     So ma love, pray for our friends to feel strenght, peace, joy, patience and everything in between.  Also, do not, never ever forget to pray for the surgeon, and the loved ones waiting!  Like my husband said to me : "We got the easiest part, sleeping there all day" hahaha

So people.... SMOOOOOOTH! Ok? Being happy, thankful, accepting and patient, does a lot more good than
expecting to get on your feet in a week and getting depressed and mad after 3,4, 6 weeks because your recovery does not seem "quick".