I am suffering the debilitating symptoms of a cerebrospinal fluid (CSF) leak and have been this way for 11 months now. I just got back from an appointment with a doctor in another city who has agreed to treat me through a therapeutic blood patch. This has taken some time, and it has been a long and wearying road at times. Were it not for the various outlets through social media, I think my journey could have been a lot different.
I had been suffering terribly from intractable “five alarm” headache pain for more than six months with no knowledge except what my brief glances at the internet could glean. As part of my symptoms, I have had terrible photophobia, and putting on my glasses to focus caused my pain to go through the roof. I was briefly prescribed prednisone, which allowed me to use the computer more, and thankfully I found some reliable social media sites which lead me to find people with the same illness.
I cannot even begin to tell you how important that connection to people like me has been. Knowing that there are others out there who have been down the same path gave me hope and a desperately needed path forward. Being able to ask questions, and find journals and articles written dealing directly with my specific symptoms, allowed me to have fair and informed conversations with my doctors. Together we were learning about this illness through the dedicated people on these sites.
Many days, I would wake up with something completely new going on and my mind began to worrying about whether this new development could be serious. The experienced spinal CSF leak people on the various sites were able to give me sound advice and let me know if they had experienced the same things. Their knowledge was often more informative than the breadth of understanding of my own doctors. All of it helped to guide my care along, as I would share new insights with my doctors.
Having a spinal CSF leak can be very trying. It is a rare condition and doctors are not familiar with diagnosing and treating patients with this illness yet. This means we, CSF leakers, have to advocate, educate, and propagate all the important developments that are happening in the treatment of this illness. Having places on social media as well as being able to write about our experiences on The Mighty are having a huge impact on spreading the word about our condition.
As much as I love the information available in private groups on social media sites, it is crucial to cross-reference what is being said with trained professionals and people who have really been through the process. A tiny word of caution about social media is imperative. Not everything I have heard has been accurate, so I make sure to double-check my information. When in the throes of illness, people can get desperate and emotional and it has been really important for me, to be sure that what I am sharing is my experience, and that I am not an authority on this issue. Go to the experts, ask questions and bring up validated facts, ask people where you can find the information they are quoting, and make copies to take to your doctors. It is so important for all of those suffering from CSF leaks to bring light to the studies and evidence that is out there so that we can all get the help we need!
These social media sites are specifically made to support and help one another. My experiences have been nothing but positive and the administrators of these sites are often still suffering or they have been in the same struggle as I have. Their kindness and dedication has been life changing for me and we are a community of people who are trying to treat our fellow sufferers as brothers and sisters. There is a sense of caring that can be absent in the medical field when doctors and others do not understand this disorder. When in doubt, go to someone who has walked the same path as you… they have marked the tough patches and know how to avoid the pitfalls.
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