The following guest post was written by Lisanne St Onge Klute, a courageous women, who, in the face of a dire medical prognosis, chose to become an empowered patient and, with the help of social media, found the best possible treatment. It is a story of the power of social healthcare and the importance becoming an informed e-Patient as well as sharing one’s story.
In May of last year, I found out I had a Cavernous Malformation in the brainstem and it was bleeding, slowly disabling me. I was told by numerous neurosurgeons that it was inoperable. I went online right away and looked for support. I came across a support group where I met so many kind people, but nobody with the same condition as me, in the same location. I did learn from them to become pro-active in my health, to do more research.
One thing led to another and as my health was deteriorating and I felt myself literally hanging by a thread, I was desperately feeling alone. I had found stories of people who have had the surgery that would save my life, but they had lost all quality of life. In the meantime, one of my friends had found Dr. Robert Spetzler as one of if not the best neurosurgeons in the country, who is not afraid of operating in the brainstem. I sent him my MRI scans and he called back with a surgery offer. I was not expecting that. It was a very hard decision because to have the surgery, or not to have it, he could not tell me that one choice was better than the other. It was a damned if you do damned if you don’t. To not have the surgery meant that I could die or become severely disabled any day, and to have it meant that it would most likely save my life, but I would have deficits and a strong chance of being disabled now.
I needed more than ever to find someone, if only one person, that had been through this surgery. I kept searching, I kept not finding… but one night, I typed in Google a series of words I have not before. I don’t remember exactly what order of words I used, but it was something like “successful brainstem cavernous malformation surgery.” I stumbled on Akiva’s story (AKA iPatchman), I went back to his first post and discovered he had surgery in the same location of the brain as me! Not only that, but he also had Dr. Spetzler!! I was happily shocked when he shared that he was recovering and seemed to have a pretty normal quality of life. I sent a message to his iPatchman Facebook Page to both ask about his surgery/recovery, and to ask about Dr.Spetzler.
Before I even got his response, to make a long story short, I ended up in the hospital after having a worse bleed than the ones before. I now knew for sure that I needed the surgery, even if I had already decided it was best as a mother to ensure that I was going to be alive for my children, even if that meant i was going to be disabled. I was in the hospital when Akiva got my message and answered. He right away offered to call and I was amazed at the timing. I don’t think he knew at the time how desperate for answers I was. He was such an encouragement not only to me, but to my husband, and friends. Talking to him and hearing what he had to say gave me a lot of peace about my decision, and the fact that he had the same surgeon as me was just phenomenal to me. It really gave me so much hope at a time that I was made to believe I was going to either die or become a vegetable in the next week or so. He had had successful brainstem surgery and was ok, and it gave me more hope in one day than I have had in a year. It’s a beautiful thing.
Since then, I had the surgery, and I am still recovering, but I can walk, and I may not be able to work yet, but I know some day I will. I might go back to school. I have life goals and plans again. To have had a second chance like this was a feeling that I knew few people get. I also was contacted by 3 different young women that, like me, were desperately looking for someone. I know that reading the iPatchman blog encouraged them too. By letting me reach out to him, iPatchman made it possible for others to reach out as well, and it is amazing how many more people with “inoperable” cavernous malformation I know now, while I was all alone at first. Recently, Akiva told me, “Sometimes I feel like the reason we got so lucky, and were saved in the first place, is to help others,” and he is right. I truly admire that he went through this at a time when he was alone and came out so strong and positive, but by him sharing his journey, he made it so others are not going to be alone. It is like building an army. An army of fighters.
Follow Lisanne’s story on her Facebook Page: That Brain Fart. If you know anyone that was affected by a brain tumor or a cavernous malformation please share this with them.