Take the Risk. Brave Medicine
Quote Queen
"Start with the soul and perhaps the temporal gifts I want to exercise will have their chance; and if they do not, I have the best in my hands already, the only thing really needed. God must be in all my work." --Flannery O'Connor
Rebecca Kays
April 9, 2019 at 6:21 pm (4 months ago)You understand. I had my LA removed because it became infected. Otherwise I would still have it, even with everything that is going on. He is human, not God. I prayed and God said that this was the right decision for me, to get the LA in the first place. It’s saved me.
I am ashamed of that hospital. We are the frontier patients, and our doctors take risk. They have to. And we have to have the face to take the risk along with them. We do it so our children and nieces and nephews and others don’t have to be the frontier. I don’t know what all is going on with him, I just found out last week. He is a brave man and I do not regret any of the times I had surgery up there. And I had 12 over the past year because that shunt, when it was an LP, it just would not stay in my belly. He did not want to make it in LA. It was the only option to keep me alive. They are working with valves that are not meant to be used anywhere but in the brain. Because no one has ever created the technology needed. Doctor, Hospital, yes there were mistakes. But they should have stood behind him. Thank you for writing this piece and sharing. I only hope somehow a copy gets to him so he knows I don’t blame him. If the shunt is helping you, pray on it, take the blood thinners if you need to. Life is a risk. That’s part of what makes it worth it.
Monica
April 10, 2019 at 12:33 am (4 months ago)Rebecca, Thank you for this. One of the gifts in the hard has been finding a family of sorts in one another. I’m glad to meet you here today. Prayers for healing and hope to you.
Hanna
April 9, 2019 at 6:57 pm (4 months ago)Hi, my daughter just turned 3 and has had 3 decompressions along with a CSF leak repair and numerous other procedures. She is still suffering greatly and still needs another decompression. I would love to speak to you possibly for some guidance if you are willing. She’s on Facebook under “Sophia’s Chiari Journey”
Monica
April 10, 2019 at 12:30 am (4 months ago)Hanna, I would love to share what I can from our own experience. I will reach out there. Prayers for healing and hope for your sweet girl tonight.
Kathy
April 9, 2019 at 11:31 pm (4 months ago)You have an amazing gift with words. Your struggles gave been so real and you have shared them so openly with all of us. Praying whatever decisions are made in the next few days are the absolute best ones for you.
Losing our doctors and the questions of now what are so hard for many in this EDS journey.
Monica
April 10, 2019 at 12:28 am (4 months ago)Thank you for your love and prayers!
Donna DeArkos
April 10, 2019 at 3:46 pm (4 months ago)You tell the story so well. It is a heartbreaking journey. Praying for wisdom and healing. Love you.
Monica
April 10, 2019 at 4:57 pm (4 months ago)Donna, I’m so grateful we have ano another on this road. I love you.
Paula
April 10, 2019 at 4:51 pm (4 months ago)Thank you Monica writing this, I had tear filled eyes as I read it; it was beautifully written. As some mentioned previously , I hope your writing makes it to the surgeon. When he reads it, I hope he finds comfort in knowing that, although he did not receive the support from the hospital and his colleagues that he deserved, he sincerely has the respect and admiration of his patients. He often thought
“ outside of the box”, which allowed him to find alternatives for those patients that were desperate because other doctors had given up on them. Unfortunately, without him , we are back to searching for a qualified surgeon who doesn’t shrug his/her shoulders in the air and shake their head when they hear EDS. It is sad that the hospital , his colleagues and even some of his patients are focusing on one very unfortunate situation and not the many lives he has saved and the quality of life he has been able to give back to so many of us. I pray for him and his family often and that the obstacles and struggles they had had to endure will soon pass and that he will be finally be at peace. His compassionate and dedication to his patients , especially those with EDS, can’t be duplicated. He is behind many of the ground breaking techniques and developments in neurosurgery, to not have him continue with that will not allow for advancement in the field of neurosurgery.
Monica
April 10, 2019 at 5:00 pm (4 months ago)I love knowing so many of our community feel like I do. I hope he will know too. Strength and hope to you as you make your way. We have one another!
June
April 13, 2019 at 7:11 pm (4 months ago)Praying for you, physically, mentally, financially, as you follow this new path.