Oh my gosh. I feel so seen I could cry. Thank you, thank you, thank you for writing this. I want to give it to everyone that loves me so they can understand a little better ❤️
I am quite touched that the context piece resonated with you this much ❤️ I was hesitant to publish it given the difference in style from my other reflections but I get this question so often; what is a CSF leak like anyway? Or what are your symptoms? Glad it can help in any way.
CSF leaks can be so complex to explain. I just sent it in my husband family’s group text chain for anyone who wants to try to understand my condition a little better. I think people think I just have a headache all the time. But it’s so much more than that and this explained it beautifully. And the body trust part is what really got me. You named things I didn’t even realize I was carrying.
And what you said about the complexity is very true. It was hard to distill the condition down to one piece without making it very long or too heavy.
I love reading other people’s reflections too and listening to their experience. It names some things we may feel but can’t yet name. Looking forward to reading more from you and the relatable pieces you share from the community 🙏
You are so right to speak of trust. Trust in our body, trusting to know how much is safe or too much. Our ability to predict outcome is so reduced. Simple things become complex; can I shower today? Can I rest now so I might join the family for dinner. Can I bend forward to pet the dog. All questions I could assess subconsciously before, now become decisions that require review and analysis.
Thank you, fellow leaker, for a beautiful piece about the experience of this.
Thank you, Kathryn. What you said is very true and your questions on whether we can do simply daily tasks makes me feel very seen. Similarly, trusting my own judgement on what may be too much has become quite the decision tree where the inputs are my historical patterns, educated guesses, body anatomy, whether there are major events I need to save my good hours for, and level of willingness to suffer for the coming hours or days.
I have this too. For the past six years. Five blood patches, 11 fibrin glue &blood patches, 1 failed embolization, and four open surgeries.
It took me three years to obtain a diagnosis.
The damage to my spine was iatrogenic, (medically caused) by a Fellow in Anesthesia, while he attempted to place a semi permanent epidural/ spinal block prior to a very serious life saving surgery I was having. It stopped my world, not only put my life on pause, but pretty much ended life as I knew it.
I attempted to file a malpractice suit, at the very least to cover all the unpaid medical expenses, but it was denied because no expert witnesses would testify that this was outside the “normal risk” of obtaining pain relief from a surgery that cuts you open from sternum to belly button.
Teyani, this sounds like such a long and draining path you've been on, all in addition to the symptoms you're already experiencing. I'm holding you in my thoughts and heart.
You are so right that it's all this and so much more. It was hard while writing this to distill down the condition because it affects life in every way and form. I've tried to narrow the first piece down to key symptoms and a summarized explanation of the condition mechanics.
As I'm sure you very well know and have lived, there are many types of leaks, additional symptoms and different types of treatment procedures and surgeries. Blood vs fibrin patches, embolization vs open surgery, punctures vs tears vs fistulas. And how with treatments comes RIH, dura changes and more. And for symptoms; our bodies way of compensation or secondary conditions that show up including venous dilation, dysautonomia and more. The list goes on and so does the complexity.
Hang in there. I pray you find healing and more of the tolerable moments <3
So proud of you! You’re a true fighter, and your strength inspires everyone around you. Keep believing in yourself—you’ve already overcome so much, and the best is yet to come. ❤️
Oh my gosh. I feel so seen I could cry. Thank you, thank you, thank you for writing this. I want to give it to everyone that loves me so they can understand a little better ❤️
I am quite touched that the context piece resonated with you this much ❤️ I was hesitant to publish it given the difference in style from my other reflections but I get this question so often; what is a CSF leak like anyway? Or what are your symptoms? Glad it can help in any way.
CSF leaks can be so complex to explain. I just sent it in my husband family’s group text chain for anyone who wants to try to understand my condition a little better. I think people think I just have a headache all the time. But it’s so much more than that and this explained it beautifully. And the body trust part is what really got me. You named things I didn’t even realize I was carrying.
So glad it could help 🤍
And what you said about the complexity is very true. It was hard to distill the condition down to one piece without making it very long or too heavy.
I love reading other people’s reflections too and listening to their experience. It names some things we may feel but can’t yet name. Looking forward to reading more from you and the relatable pieces you share from the community 🙏
You are so right to speak of trust. Trust in our body, trusting to know how much is safe or too much. Our ability to predict outcome is so reduced. Simple things become complex; can I shower today? Can I rest now so I might join the family for dinner. Can I bend forward to pet the dog. All questions I could assess subconsciously before, now become decisions that require review and analysis.
Thank you, fellow leaker, for a beautiful piece about the experience of this.
Thank you, Kathryn. What you said is very true and your questions on whether we can do simply daily tasks makes me feel very seen. Similarly, trusting my own judgement on what may be too much has become quite the decision tree where the inputs are my historical patterns, educated guesses, body anatomy, whether there are major events I need to save my good hours for, and level of willingness to suffer for the coming hours or days.
When asked, “What do you do all day?”
I reply, “Did I shower?”
Thank you, Kathryn for reposting this article by Amy. I am learning more about living with this condition. 🤗
It’s a bewildering thing to live with. It’s easy to understand why we write about it.
I have this too. For the past six years. Five blood patches, 11 fibrin glue &blood patches, 1 failed embolization, and four open surgeries.
It took me three years to obtain a diagnosis.
The damage to my spine was iatrogenic, (medically caused) by a Fellow in Anesthesia, while he attempted to place a semi permanent epidural/ spinal block prior to a very serious life saving surgery I was having. It stopped my world, not only put my life on pause, but pretty much ended life as I knew it.
I attempted to file a malpractice suit, at the very least to cover all the unpaid medical expenses, but it was denied because no expert witnesses would testify that this was outside the “normal risk” of obtaining pain relief from a surgery that cuts you open from sternum to belly button.
Thank you for this post about it.
It’s all this and so much more.
Teyani, this sounds like such a long and draining path you've been on, all in addition to the symptoms you're already experiencing. I'm holding you in my thoughts and heart.
You are so right that it's all this and so much more. It was hard while writing this to distill down the condition because it affects life in every way and form. I've tried to narrow the first piece down to key symptoms and a summarized explanation of the condition mechanics.
As I'm sure you very well know and have lived, there are many types of leaks, additional symptoms and different types of treatment procedures and surgeries. Blood vs fibrin patches, embolization vs open surgery, punctures vs tears vs fistulas. And how with treatments comes RIH, dura changes and more. And for symptoms; our bodies way of compensation or secondary conditions that show up including venous dilation, dysautonomia and more. The list goes on and so does the complexity.
Hang in there. I pray you find healing and more of the tolerable moments <3
Yes, sadly I am way too familiar with all these things, as it sounds like you are also.
It also sounds like you know about the fabulous Spinal Leak Foundation and their Bridging the Gap series. ❣️
It’s wonderful that writers such as yourself are bringing this rotten condition to understanding from more people.
So proud of you! You’re a true fighter, and your strength inspires everyone around you. Keep believing in yourself—you’ve already overcome so much, and the best is yet to come. ❤️
Thank you for standing by my side, supporting me in the most loving ways and lifting me up throughout this journey, but also throughout life.
Love to you forever and always ❤️