About Lisanne

(You can click on every one of these links; they will direct you to the proper post)



December 2016
My name is Lisanne, but everyone calls me Lisa. Its just easier to say, let alone remember :) Believe it or not, I do not have a middle name.  I wish I did, because I probably would of used it a lot. haha I am 38 years old and live in Ohio. I am french Canadian, from a very small town in New Brunswick, Canada.  I learned English about 14 years ago :) I came in the United States as a permanent resident in 2004. 

I am a born again Christian and have 4 wonderful children and am married to Jay, who grew up here in Ohio his whole life. 

I am a simple girl. My husband likes to joke that I grew up as a hillbilly, and I cant say that he is wrong. However, I take it as a compliment, because  Hillbillies  are the happiest, most caring and courageous people I know.



May 2013, 2.5 months Post-Op

Before my illness, I was a cleaning lady. Right after I was first diagnosed, I had to stop working, as my symptoms were making it impossible to work a physically demanding job, and my continuously confused mind was making impossible to work a "thinking" job.  I know that God as a plan, and I am patient. 


I was first diagnosed with a cavernous malformation in June of 2012, after months of odd and unpleasant symptoms. I started writing this blog shortly after.  I then learned that my cavernoma had bled twice. All of it has really started 2 years before, when my first bleed (which is in fact a hemorrhagic stroke) went undiagnosed.



I had surgery March 1, 2013. I was initially told inoperable by numerous neurologists/neurosurgeons due to the location. With the help of the internet and friends, I became more pro active with  my own health and found Dr. Robert Spetzler, an amazing neurosurgeons, who is not afraid to operate the inoperable. He is considered the best in the country, if not the world.  We traveled 2000 miles to get to him, in Phoenix, Arizona, at the Barrow Neurological Institute. After surgery, I was moved to Acute Inpatient Rehabilitation where I re-learned how to walk and all that good stuff.  This was the most rewarding, and oddly, one of the happiest time of my life.


I hope that in sharing my story, I can build awareness on the subject that is Brainstem/Deep brain surgeries , as it is usually labeled as "inoperable". It has been a very hard road, but I have been blessed greatly, and one of these blessing, is to be here to hopefully bring some hope that there is indeed, always a way.


I am doing well and recovered to have a very good quality of life. Something I was told was impossible.  I feel great overall and have embraced the new me, which is a much better me than if I didnt have the surgery at all.  The journey God saw me thru, being pro-active by educating myself, finding the right Neurosurgeon, and listening to my "guts", has made me blessed.


**Now 2017, I hit the 4 years mark. Click here to read various post surgery/recovery updates and read more detailed accounts of the permanent deficits, what is still improving, and what is not my "new normal". 



Family Picture, Right at the time of my diagnostic. 
Read about my family HERE


6 comments:

  1. I am so thankful I found this information. Or should I say I'm thankful my sister found it. I'm a 50 year old man, who used to be very active. Activities which included running a 5k 6-7 times a week…mid july 2013,after running a 5 k, I began having symptoms where I lost my balance and walking into walls. A short time later I was given an MRI. I was told I had a brain bleed in the center of my brain near the brain stem. I spent a week in ICU. I was sent home to later be diagnosed with an inoperable Cavernous Malformation. Inoperable because of the location. After learning about Dr Spetzler on this site, I just finished sending him my MRI's etc, to be considered for treatment by him. I am very hopeful he can help me. Thank you Lisanne for putting this blog together.

    https://scontent-a-atl.xx.fbcdn.net/hphotos-ash2/552421_4084116868464_1760654967_n.jpg

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    1. J THom, I am so glad that your sister found my blog and the information!! It brought tears to my eyes reading that you are waiting to hear from Dr.Spetzler. I am so hopeful that he will come back to you with a positive answer!!! Please let me know. Your story is so typical of someone with a brain stem cavernoma: always active, strong and fierce :) It is very hard to hear "inoperable" and when i was first diagnosed, and kept getting worse by the day, I was desperately searching for someone, online, who had the same thing... but didnt find anybody until i found Dr.Spetzler. Finding them did give me the courage to go thru with the surgery with totay confidence!!
      my personal email is lisanneklute@gmail.com Please let me know of how you are doing and i would love to be part of your journey! I truly encourage you to get a blog too... there are not a lot and it breaks my heart that there is so many people out there who accept the inoperable diagnostic. I have met people thru this blog and also facebook has a group for cavernous malformation.

      Keep on being proactive for your health and have a great week :)

      Lisanne

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  2. I am also so very thankful to find your blog, Lisanne. My journey began this past summer when my vision changed. I soon realized I had double vision (right peripheral) and immediately sought out medical attention. I was diagnosed in Des Moines, IA with a capillary telangiectasia with associated cavernous angioma. Because of my history with stage 1b malignant melamoma, I immediate made an appointment at Mayo Clinic in Rochester, as this is where I was treated for my melanoma 7.5 years ago.

    Four weeks after my diagnosis in Des Moines, my husband and I headed up to Mayo for what we thought to be one appoint with Dr. Leavitt, a neuro-ophthamolist. My lesion combined with my cancer history triggered three full days of tests to try to rule out melanoma metastasis -- bloodwork, another MRI, spinal tap, PET scan, angiogram, oncologist visit, etc. (Note: The brain is one of the top three places for melanoma to spread so this wasn’t a surprise to me). At the end of it all, not one test could point to melanoma…except that the lesion was ‘atypical’ for a cavernous malformation (popcorn look). I was left with a diagnosis of "indeterminate" -- it's either metastasized cancer or a cavernous malformation. I was to return in five weeks for another MRI.

    I learned a lot about myself in those five weeks. Everything you talk about on your blog, Lisanne, including accepting death (I can especially relate to). I have two beautiful children (4 and 5) and an amazing husband. And I can tell you that as strange as this may sound (and I hope not insensitive), I've never prayed so hard for a cavernous malformation. If God would only give me this, I could figure it out. And beat it. The cancer, that's another story. Nothing matters more to me now than life --- I’ll take it in any shape or form. Just as long as I’m blessed with the gift of time.
    This past Monday, I had my follow up MRI at Mayo. The lesion did not grow, so my neurologist (Dr. Askamit), declared it a cavernous angioma and said he'd consult with my neurosurgeon (Dr. Parney) to see if he concurred. Dr. Parney agreed that it is looking and acting more like a CA but will not rule cancer completely out. I return in three months for another MRI to monitor the lesion. My dr also consulted with cavernous malformation specialist, Dr. Lanzino, and he is recommending surgery if I have more symptoms from another bleed. I was originally told that the lesion is most likely inoperable and Gamma Knife radiation a possibility. I’m now thankful to hear that surgery is an option. And hearing your story makes me even more confident that I can do it to if needed.

    I share my story today because when you’re going through something as scary as the possibility of brain cancer or a cavernous malformation, you need to know that you’re not alone. And I applaud Lisanne for opening the door for the rest of us to walk through and connect. I’m so thankful to have someone to talk to. And a place to share for those going through the same situation. God bless, Michelle

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  3. I am in awe and so thankful I found your blog too. I have it saved to read, and shared it with my husband. My cavernous malformation removal was in January of 2015. While I was not told inoperable, I was given a day to decide on surgery or not. By the grace of God, I had an amazing neurosurgeon assigned to me in the ER. I'm still reading up on it because I know no one that even heard of it before me. I've spent the last few days poring over your posts, so happy to have found it. I hope your feeling well.

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    1. Hi April!
      Thank you for your kind message!
      I am so glad you had a great neurosurgeon right away! That is so important! How are you feeling? Its amazing how quick time fly uh?! I can't believe my surgery was 3 years ago. It seems like yesterday. The recovery is ongoing, but it's now at a point where its been constant enough for me to know what life is going to be from now on. I hope you are feeling well!
      Lisanne

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  4. I just read your letter from the brain and it brought me to tears , I was just diagnosed with a cavernoma that has had a bleed after a year and 1/2 of looking for answers , i have speech impairment , vision problems , left side weakness with falls and walk with cane , memory loss, loss of use of my left hand . My first neurologust told me i was depressed and to come back in 6 months , I requested another one in Kansas City and she sent me to a specialist but this took over a year and 1/2 before they decided what it was , so who knows how many times my brain has bleed in mean time. I have 4 other cavernoma on my brain as well that have not bleed , one on my brain stem that causes constant pain. The thought I had MS . Been told now I have irreversible brain damage due to the lengthy if time it has been in diagnosed. I will meet with neurosurgeon and radiation oncologist this Thursday to try to stop future bleeds. That story said all the things I've been feeling through this and I haven't even had surgery, I miss the beautiful life I had before this all happened . I struggle with fatigue and pain , memory loss , t e.g. ying to find my words, I don't even recognize myself anymore , but you let me know i still can find beauty in me , in my heart , if you only knew what that letter did for me! I didn't feel alone anymore , and for that I thank you

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