Woman holding the side of her head in pain

I have just received an epidural blood patch (EBP) to treat a spinal cerebrospinal fluid (CSF) leak. For those who do not know the term “EBP,” it is a process whereby an anesthesiologist inserts a needle into your back, much like an epidural during childbirth, and takes blood from your hand and inserts it into the sac-like space that surrounds your spinal column. Let me tell you… I had tears of joy once I was done because it had been a long journey for me to get there — and for many the journey is much, much longer.

It all started on March 19, 2016 when I woke up in the middle of the night completely soaked in sweat and I had to get up to wipe myself down and change my clothes. Shortly after waking up, I noticed I had a terrible headache. It was like nothing I had ever felt before. I attributed it to being a 50-year-old woman and willed myself back to sleep.

Over the course of the next day, I remember thinking, “Wow… this one is really a doozie!” You see, I have had headaches, and quite frankly, I had been getting them more and more frequently, but since I was in my 30s, my remedy for a headache is to drink a lot of water, exercise, practice yoga, and meditation if things get really bad.

This headache was different though.

The pain felt like a terrible pressure around my eyes (like goggles) with a horrible squeezing feeling at my ears and going around the top of my head, and a huge wedge of pain at the very base of my head. I had pressure pain at my sinuses and could not comfortably wear my glasses. Sounds were startling me and I could not keep my balance when doing my yoga poses (despite having never had balance problems at all).

The next 10 days I went to work all the time with this terrible headache. It got worse at the end of the day to the point where I could barely stand to be around my little charges (I teach kindergarten). This was so unlike me, and I was noticing other disturbing symptoms: memory loss, unable to retrieve words, and a feeling that my head was being pulled backwards as though I had been sitting at the computer too long despite not having done so, and a watery liquid would come out of my nose whenever I moved from lying to sitting, or when I bent forward… which is always when you work with 4-year-olds!

Over the next few weeks I had doctor visits, an ER visit where they did a CT scan and gave me meds, but we came up with migraines despite being told I did not
fit the typical migraine. I was given and IV, some meds that helped with the pain and half a day later, my headache was back.

Another few days went by and I ended up in the ER again, in a larger city and I went down much the same path, again, diagnosed with migraine despite being told I did not fit the criteria. They said, “We’ll call it an atypical migraine.” I was scheduled for an MRI the following week, which gleaned nothing.

Two months into this headache, I could not be outside or look at a screen for longer than 10 minutes. I could not have any sound in the house. I’d lie in bed in the pitch black with ice packs strapped to my head and pillows over me with block-out headphones on. I spent the first five hours every day running back and forth to the bathroom as I had severe emesis and nausea. I was losing weight fast. I was desperate.

I had mentioned to a family member that I had noticed after I would lie down for about 30 minutes or so, I would always feel a bit better. In the mornings, I would wake up with a very mild headache, but as soon as I sat up, my headache was back to its usual status. She asked if I had ever heard of a spontaneous CSF leak and to look it up and ask my doctor about it. I did look up the symptoms, my husband did a little more digging, and I called both my GP and the neurologist. I knew in my heart of hearts that this was my issue. I had never heard of this illness and yet both ER visits I had described to a T, the exact symptoms… that was not a coincidence.

I returned to the neurologist, and she did not believe me. She took notes once again, and named other headache possibilities. “Have you heard of cluster headaches? Perhaps we are looking at chronic headache?” She refuted my actual symptoms and told me it was not possible for me to have a CSF leak because I would be on death’s door and I would have meningitis. She did agree to do an MRI with contrast which I had the next week. This led me back to my GP a few weeks later.

This doctor, thank goodness, was utterly convinced we needed to look at CSF leaks as an option and she was unrelenting. She called the hospital back and asked for a CT myelogram. By a stroke of undeniable luck, she talked to a different neurologist (a headache specialist) who heard enough to believe we might be talking about a CSF leak too.

It still took six weeks to get in to see the new neurologist, but we got on a plan regardless. Unfortunately, with my lack of understanding of the illness and the neurologist’s lack of experience as to the condition and the best course of action, he and the neuro-radiologist ordered a complicated test. I was to simultaneously have, upon a lumbar puncture, a CT myelogram of my brain, and MR myelogram of my brain, and a radio-nuclear cisternogram. It was a terrible day for me as I had a
reaction and nobody knew what it was. I had extreme nausea and dizziness and felt faint most of the day, only to throw up in one of the huge imaging machines, and the technician had to halt the test before it was complete. I had to spend the night in the ER as the doctor was worried about my adverse reaction. It was a long night. We did gather some good information though. My opening pressure was 10 (just on the cusp of being low), and sometime during the night my headache was completely gone…vanished for 24 hours.

Again… the imaging revealed nothing.

Just prior to this test I had become friends with another person with a CSF leak through a social media site, and together we pieced together a different plan.  I got into contact with some experts in the field in the United States and asked them to speak to my doctor to lead the investigation in a more efficient manner. My doctor decided to
do a CT myelogram of my entire brain and spine.

I was now nine months into a debilitating headache. Thankfully things had subsided enough that I was not sick every day anymore, although I did vomit regularly a few times a week. I also had periods of two- to three-week stints where I could do nothing but wrap my head in ice and lie in bed crying.

In December, just before Christmas, I was scheduled to have a CT myelogram brain and spine, which involved another lumbar puncture. I had the lumbar puncture with an opening pressure of 4 (which can be a positive sign of a CSF leak) and found out the radio-neurologist ordered an MR myelogram instead and was not doing the CT myelogram. I was upset and frustrated. But I realized as the process was going on that regardless of how frustrating it was, I was going to get another piece to the puzzle. I was disappointed and found out later that again, there was no visible imaging of a CSF leak.

My headache went away four hours after the procedure — for 30 hours this time — and that was a persuasive piece of evidence that there was a leak. Twice now I’d had a lumbar puncture and twice the headache was relieved when something was injected into my spine. I saw my neurologist two days later, and we devised a new plan. We were just going to go ahead with a blood patch.

Scheduled for January, I arrived at the hospital, and no one knew why I was there. I was told, “Actually we have no idea why you are here today.” They said they thought my neurologist was planning on doing the blood patch himself. I have to admit, I was upset. The next day I called the neurologist and expressed my disbelief and asked to be sent to a center where they are more familiar with the procedure and protocol for CSF leaks and epidural blood patching.

I report to you today, that I am one week post EBP and so far my headache has been between a 1/10 and a 3/10 for a week. I am having some side effects of the procedure, but they are bearable for now.

My journey has not been the typical one. I emphasize that a lot of time was spent with doctors who didn’t believe me, doctor’s who didn’t know about the condition, and doctors who knew a little but not enough to be effective. My journey is not the longest by a long shot, but it is long considering my GP asked for the exact test on month two and I asked for a blood patch on month four and I only was treated for this illness appropriately in the 12th month of my trek with spinal CSF leak.

It is still too early to tell for sure if I am “patched,” but I am hopeful. I have learned so much along this journey: some bad things, some disappointing things. But I have learned so many wonderful things as well. I am strong. I am brave. I am resilient. I am
resourceful… and you are too!

Editor’s note: This post represents an individual’s experience and should not be taken as medical advice.

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Thinkstock photo by Ingram Publishing

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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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Thinkstock Image By: BrianAJackson


I love my rare condition family.

On behalf of my fellow friends and family with invisible illnesses and rare conditions as well as myself, let me just say that, when you live a healthy life, it’s almost like wearing blinders.

It’s like being oblivious to true health struggles, and in a way that is a blessing – to not have to know about chronic illness, see it or hear it.

To not have to see rare conditions…what a luxury.

But then there are those like me, my CSF leaks family and many others, who face illness every day. It’s in your mind, your heart and your being. You can’t get away from it and you can’t ignore it because for some that would mean death.

For some it is the difference between life and death to remember every second that it’s there – that illness, that disorder, that rare condition…

But people with chronic illnesses, invisible illnesses and their family members are some of the strongest and most courageous people ever! They are seriously in a class of their own.

When a friend or family member makes a comment or post about their struggle or hardship with a rare condition, it’s one of the best things they can say and do. It’s important to let someone in, let someone help, let someone know… Because every post also means awareness is being raised!

And if you notice that their posts are getting angrier or they’re becoming more passionate about their cause, that’s when you reach out and let them know it’s OK to vent and to be pissed off! A real friend will stand there and scream by your side and say, “F this condition and all the pain that comes with it!”

I’m here to be pissed off with you, all of you – or share in whichever mood you want to be in on whichever day you choose!

Never stop posting, never stop venting and never ever worry about someone who doesn’t understand what it takes to hold yourself and your family together.

#RareConditionLife

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Day after day and week after week of chronic pain can wear a person down and make even the most normal day difficult. And having a birthday after weeks, months or years of debilitating pain can be even more difficult.

During any stage of a chronic illness, the more I feel I’m in control of my own care, the better things go. If I’m informing myself alongside my doctors, I feel I can keep up with the plans and have a say in how I wish to be taken care of. Reaching out to other doctors, asking for a second opinion if necessary and going back to conversations as we learn more are ways for me to feel as though I have some say in the outcome.

Planning a birthday when you have a cerebrospinal fluid leak (CSF) or chronic pain can be a similar situation:

1. It’s your day.

Plan the birthday you want to have, so you aren’t disappointed

2. Pick two dates.

Tell people you’ll have your birthday celebration on a set date as long as you’re feeling up to it and pick an alternate date that all parties can attend in case the first date ends up being an “off day” for you.

3. Know your limits.

Limit the number of people at your celebration to make it easier on yourself for preparation and for postponing if needed.

4. Keep it simple.

Order in food from a favorite restaurant, bring in pre-made dishes from your local supermarket and ask others to bring specific dishes.

5. Plan for people to stay a short time.

A great birthday where you feel your best for two hours is much better than having a few people stay for a long time where you may get tired out for days to come.

6. Timing.

Have the party at your best time of the day. With CSF leaks, we are often plagued by symptoms later in the day. A birthday brunch or lunch may be better than planning an event at night when you’re already tired.

7. Delegate.

People just love to help if you let them. Tell others how you want the house set up, how the kitchen will work and how you will serve drinks.

8. Skip it.

It’s important for you to know if you just want to skip your birthday this year. Maybe you just feel you don’t want to celebrate. Feel free to make that decision for yourself, and your family and friends will have to respect your wishes no matter what they are.

A birthday is a special day for many, and it can feel like you’re being forgotten on your birthday as the days just melt into months. Having a day that marks another year has elapsed can be challenging for many with a chronic illness such as a CSF leak. Sometimes marking the day just emphasizes that things are still not “normal.”

Whatever your circumstances, you can be the decision maker for this birthday!

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I read a fantastic book many years ago that changed the course of my life. In it I read that there are two ways of being in illness: there is illness with suffering, and there is illness without suffering, and you have to choose which kind of patient you would like to be.

At the time, I thought that was a little strange, but when I first got sick with a cerebrospinal fluid leak in March of 2016, I quickly realized that I had to make that very choice.

I chose illness without suffering.

What I mean by this is that I decided I was not going to call a bunch of people and tell them how horrible this illness was and wallow in inaction.  That is not to say that I did not solicit advocates and seek advice from a few very dear people in my life. What it did mean is that I had some choices to make and I had to make them each day.

1. Choose happiness: I choose, despite my horrible headache, nausea, and other neurological symptoms, that every day I will find something to make me happy. A flower, a walk in the garden, a video to make me laugh, a special cuddle with my dogs, a text to a friend… anything that will bring me a ray of light.

2. Choose action: I did not want to spin my wheels so I inform myself and then I take action to find a way of getting answers. Yes, it is taking a long time, but I am slowly but surely getting there and not feeling that I am helpless and hopeless.

3. Look outside myself: I dedicate time every day to think about someone else who is struggling. I had three friends with cancer this year and choose to send out positive vibes to them each day. I send them texts, presents, cards, I call regularly because it does me a world of good to think of someone else and let them know they are loved.

4. Inform myself: When I am well enough I research as much as I can. My neurologist admits to not having a lot of experience with CSF leaks so I do a lot of research with very reputable sources so I can bring up-to-date information to him

5. Connect: I make sure that I connect with others outside of my four walls.  I sent out a message that I would love visits and phone calls because I feel very isolated and lonely at times. I have connected to Facebook pages, Inspire site, CSF Leak Foundation, and headache groups for support and advice. My husband can only talk about this issue for so long… it is exhausting making it through each day for him caring for me and running a household… he needs a break! (And I needed a place to talk about the same things over and over in hopes of hearing just the right thing to make it all click for me).

6. Live in Gratitude: Much like choosing happiness, I have to choose every day to highlight the things that I am grateful for. This is true of my life at any time but I have found it particularly helpful since my CSF leak. I talk and write about my gratitude so that I can remind myself, both inside and out, of all the many joys and wonders that exist in each day for me.  From tiny little moments of grace that come in the blink of an eye (like when my dog really gazes into my eyes and we each know how important we are to one another) to the really big moments of gratitude like when a family member takes the time and effort to come an visit me and we can share great laughs and intimate times to really know how things are going for one another.

7. Give Back: When I had a little bit more of a handle on things in terms of what was happening with me, the natural teacher in me came out, and I knew it was time to give back whatever I could. I started a blog to help others like me and I have reached out to organizations to open up dialogue and awareness. I am just at the beginning of this part of my journey but already I feel better for reaching beyond the bounds of my body. 

So, how will you choose to live in illness? We have no decision of whether or not we have this debilitating illness, but I believe we certainly have a choice of how we are going to live with this illness!

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If your household is anything like mine, it’s a holiday tradition to watch some of the classic specials such as “Santa Claus is Coming to Town,” “The Grinch Who Stole Christmas” and good ‘ole “Frosty the Snowman”; all timeless and ageless “must-sees” for the yuletide season.

The one that resonates the most with me is the story of “Rudolph the Red-Nosed Reindeer.” Adapted from a song, the story is about a reindeer named Rudolph, who has a unique characteristic. He has a shiny nose. This meant that he was different and unlike all of the other reindeer, who, by the way, chose to laugh and call him names. Rudolph’s own parents viewed his difference as a flaw and tried to cover up the unique characteristic about their son. When your own parents are embarrassed or not accepting of you, that really hurts.

The one person who did accept his difference was a cute reindeer named Clarice; however, her support was quickly silenced by her father, who also wanted nothing to do with Rudolph.

Rejected by his friends, coach and parents, Rudolph decides to run away from home. He is joined by Hermey, an elf who also deviates from what is expected of him. Instead of wanting to work as a toymaker, Hermey wants to be a dentist. Rather than be supported to reach his dreams, he too was shunned.

As Rudolph and Hermey go along their journey, they find themselves in the Island of Misfit Toys, where unconventional toys go when they are rejected by their owners; unwanted because of their variance from a normal or typical toy.

After a long expedition, Rudolph and his friends decide to return to the North Pole. There he learns that his parents and Clarice are off looking for him. He also finds a troubled Santa who is about to cancel Christmas because the weather is too bad for him to take the sleigh out. As he begins his announcement, he suddenly notices Rudolph’s red nose.  Santa’s “aha” moment! Rather than be viewed as a flaw or inadequacy, his nose provides the means that saves Christmas Day.

“Wow,” I say.

The point I am trying to make is that there is deeper meaning in the story of Rudolph. As a parent who had a son with multiple disabilities, I can certainly relate to the inability of others to recognize what my son had to offer. He wasn’t included in the school play, yet he had a smile that could light up a room. I have heard countless stories from parents who work tirelessly to convince others that their son or daughter has the ability to work, learn and play with everyone else.

Each of us has unique qualities, diverse strengths and assorted interests. I hope that the story of Rudolph inspires people to embrace the diversity in all of us and that we find a way to make sure that no one is shunned or excluded from anything. It is what is different in us that can make a difference for others.

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Lead photo courtesy of YouTube: Dino Disco

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