Health update #3: My ME is in remission

This is a hard post to write because there are no words that can do this justice. I can hardly believe it myself.

My ME is in remission.

For the first few years that I was ill, I dreamt of being able to say this. I fantasized about what recovery would be like. And then, I can’t remember when, I stopped dreaming. It wasn’t that I gave up hope. Rather, I knew I had to move on from something that might never happen and learn how to live the life that I had. And now, thanks to three spinal surgeries — one for something called craniocervical instability and the others for tethered cord syndrome — I believe I am on my way to a full recovery.

If you are just stumbling across my story or the journey I’ve been on the last 12 months, which started after surgery for thyroid cancer, please read, “A new diagnosis to add to the list” and if able, all the posts in the “CCI+Tethered Cord” series. (ME stands for myalgic encephalomyelitis, commonly called “chronic fatigue syndrome.”)

I remember when the rustling of my own sheets from the slightest movement, a sound imperceptible to the normal human brain, would cause indescribable, searing pain. Now, I can go to a cafe and sit next to a couple having a conversation, music with lyrics playing over the steady din of the other diners, while typing this post on my computer and I am totally fine.

I’ve spent the last eight years mostly in my bedroom. At my worst, I lived in bed, able only to walk to the bathroom a couple of times a day. At my best, I could leave my house in a power wheelchair. Even then, I had to be careful about pacing out how much I did and when. Now? I haven’t used my wheelchair in seven weeks. If I feel like having chocolate, I’ll walk two blocks to the grocery store and get it. I can get into a Lyft without my wheelchair and know I’ll be able to navigate whatever distances or obstacles I might face on the other side. Most of what I want to do I can do, and never crash.

Now, I walk for exercise. I walk for the sheer thrill of it. I reach a speed where my feet start rising from the ground until I’m about to launch into a sprint. I feel like I have the energy to just go flying down the street (if not the body — I’m not supposed to do high-impact activities for a year post-fusion and it may never be a good idea).

I used to be allergic to sunlight and now I’m not. I used to feel ill if I stood still for even a minute or two, and now I can stand seemingly forever. Now, when I sit in a chair, it’s with my feet planted on the ground.

Last year, I once tried to go into a pool and although I didn’t even move, just the act of being in slightly cool water overwhelmed my ability to regulate my body temperature and I crashed — hard. Last week, I did an hour of water aerobics. Picking up a heavy dinner plate used to provoke neurological symptoms. Now, several times a week, I lift light weights, for 30–90 minutes. And if I want to, I can do it again the next day.

This week, when my husband came to pick me up from the airport in Philadelphia, he walked passed me three times. He didn’t recognize me. He was looking for a woman sitting on the ground.

By any definition, I no longer meet the criteria for myalgic encephalomyelitis. My physical and cognitive post-exertional malaise (PEM) are both gone. I have not crashed since I left the hospital. My POTS is gone. My peripheral neurological symptoms, sound sensitivity, sensory processing challenges, difficulty regulating my body temperature, intracranial pressure, brain inflammation and muscle fatigability are all gone. I am off Valcyte, Famvir, Mestinon, and all other ME or POTS drugs.

It is now clear that all of my symptoms had a mechanical mechanism: brainstem compression (likely with altered cerebrospinal fluid and cranial blood flow) due to cranial settling and craniocervical instability (CCI), in combination with tethered cord syndrome. Given my remarkable improvements, the centrality of those structural mechanisms is, in my case, undeniable. What remains elusive is the root cause. I know that CCI caused my PEM and other ME symptoms. I can never know why I developed CCI in the first place. (I do have some conjectures!) And I have good reason to think that so long as my fusion holds and my spinal cord does not re-tether, my PEM and other symptoms will never come back.

It is worth emphasizing that a year ago today, if you told me all this would happen, that this could be my outcome, I would not have believed you. I was an acute, post-viral onset patient. I have never had any symptoms that I would have interpreted as structural, rather than systemic. I never had any discernible problems with my neck. As it turned out, the mechanism was structural. Its impacts were systemic.

The average American walks 5000–7000 steps a day. Greater than 10,000 steps is considered ideal. Between 2015 (when I started tracking my daily steps) and 2018, I was mostly homebound and used a wheelchair when I left the house. I walked an average of just 250–300 steps per day. Then, between late November and early January, I had my craniocervical fusion and tethered cord release surgeries (marked in blue). Since these surgeries, the number of steps I can walk each day has increased dramatically and in the last six weeks, I’ve walked an average of 4000–7000 steps per day. The gray bars represent the number of steps I walked each day; the yellow line, the rolling average.

That’s not to say I don’t still have some challenges. It takes time to recover from these surgeries. After eight months in a cervical collar, I had to build up my neck muscles until they were strong enough to hold the weight of my head throughout the day. Because of my back surgery, it can still be difficult for me to sit in a chair for too long (standing is easier). I still sometimes have stiffness, swelling or pain in my neck or vague, but generally transient, neurological symptoms. All of this is getting milder and less frequent with time, physical therapy, and strength training.

I am also deconditioned. I still don’t have the endurance of an average person. For seven years, I was mostly in beds and wheelchairs, and was completely flat and on a catheter (not even transitioning to a commode) for a good part of my eight week hospital stay. It’s going to take time to recondition both my muscles and my peripheral nervous system. When I exert myself, I do get fatigued, and will often drop hard by the end of the day, but it’s an entirely different thing from when I had ME.

Before my surgery, I would never have been able to exercise. Any activity beyond my extremely circumscribed limits would make me feel worse, perhaps permanently, causing a “crash” of my autonomic, central and peripheral nervous systems. Now, for the first time in eight years, I can feel the healthy fatigue of a day well spent. Every day, I try to push myself a little harder. The next day, I wake up sore and stiff, like I’ve just run a marathon. I can feel the lactic acid in my muscles, and sometimes my brain. At the beginning, I’d wonder if my PEM had come back, but then if I got up and started moving, the pain, stiffness and lactic acid would dissipate. Whereas before my surgeries, movement always made me worse, now it actually helps me feel better. The more physical activity I do, the stronger I get. Up is up again.

I do still have mast cell activation syndrome for which I take Ketotifen, but even that seems like it is improving and may eventually go away. In the last many weeks, I seem to be becoming less and less reactive to mold and my other mast cell triggers.

The other reason why this post is hard to write is I don’t feel about this miracle at all the way I thought I would. Part of it is that recovery is a process. While I found immediate benefit from the surgeries, it wasn’t like I woke up, the skies parted, and suddenly I was an average human again. My surgeon told me 50% of my outcome had just happened in his operating room and 50% would be the work I put in over the next twelve months, and every week I learn why that is truer than I could have known. I also feel like I’ve just come back from a war, and it’s left scars I didn’t know were there. This experience has changed me forever, in good ways and in hard ways. Now that I finally have the space and health to truly feel what any normal human might feel about the last eight years, I sometimes wish I didn’t. The grief and trauma over what this illness has destroyed has come rushing in, for me and for Omar; the meaning of the time that we will never get back. We are so lucky to have this new chance, and we know there are so many who have had to live through much worse for far longer, but we just don’t feel lucky yet. My husband slept on an airbed in a hospital room for nearly three months, through many nights of me waking up in excruciating pain, all while trying to keep working and keep our world together. Right now, we just feel exhausted.

I also can’t help but look at everything that’s happened to me and feel even angrier about the conversion disorder diagnosis I received in 2012 (made on the basis of my tethered cord symptoms). Angry how unlikely it was in this medical system that, even if I had lived another fifty years, I would ever have found out what was causing my symptoms.

I also can’t help but feel something approaching survivor’s guilt. Why did I get this lucky? How do we make sure everyone who needs these surgeries has the choice to have them? How can we uncover all the causes and all the cures for all the mechanisms that might underlie different patients’ ME?

On that point, I want my story to be a source of hope. I did not get better by thinking positively or drinking green juice (even though I’m sure both are good for almost everybody). I found the specific cause of my symptoms, backed by both subjective and objective measurement. I then had three fairly long and complex neurosurgeries to address this cause, and am now on a path to recovery.

This was possible because surgeons have been doing craniocervical fusions on patients for more than fifty years. At first, the surgery was for patients who had had acute traumatic accidents. Later, it was used for craniocervical instability due to tuberculosis, to people born with congenital risk factors for developing CCI, like Little People and people with Downs Syndrome, and craniocervical instability due to inflammatory conditions like Rheumatoid Arthritis.

More recently, craniocervical fusion surgeries are being used to treat patients with craniocervical instability due to genetic connective tissue disorders, especially hypermobile Ehlers-Danlos Syndrome. And now, Jeff Wood and I are the first two patients (as far as we know) to meet the International Consensus Criteria for ME and to have our ME resolve due to this fusion surgery. (At least 20 patients with ICC-ME who are part of the online community have been diagnosed with CCI in the last year.)

Measurements, techniques, and treatments developed in one scientific or medical context can often be applied to people living with other diseases. While for decades, people with ME have been frozen in amber due to gross neglect from the medical community and government agencies, all around us, science and medicine have continued to advance. While that should be a source of pain and anger, it should also be a source of hope. Whatever the cause or central mechanism of your ME, there is a reasonable chance that when it is discovered, a treatment may already exist, waiting to be applied to a population it never imagined could need it. That discovery could come from a clinician or researcher. It could also come from an unusually dogged and creative patient, like Jeff, like you.

Whatever those treatments turn out to be, I know we will have to fight for them. Fight to scientifically validate them. Fight to educate doctors about them. Fight to ensure that everyone, no matter their country, health system, or financial means, has access to diagnosis and effective care. I still have a long way to go in my recovery but no matter how well I get, I will never stop fighting for that future.

I have so much more to say, and will in future posts, about why I think I developed craniocervical instability (CCI), how CCI might cause post-exertional malaise (and other dysautonomias), how the totally fascinating way I was diagnosed raises important questions about this disease, the process of surgery, of recovery and the way forward. I also want to talk about privilege and access. I want to do all these things…for now, though, a moment to reflect, to heal, to give thanks and to gear up for the fight ahead.

To learn more, follow me on Medium and see the full series of posts on CCI and Tethered Cord Syndrome. Also check out Jeff’s website, which talks more about diagnosis.

You can also “Ask Me Anything” on this Reddit Ask Me Anything post or by tweeting to me @jenbrea.

The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

Below, a series of tables comparing the symptoms I had prior to treatment and the symptoms I have now. I found improvement of essentially all symptoms with rest/pacing (not included in the table). Specific symptoms further improved with mold avoidance, Valcyte, Mestinon and Fludrocortisone. Even with these treatments, I still met the criteria for ME but shifted from the “severe” end of the spectrum to “moderate.” I found resolution of essentially all of these symptoms after my craniocervical fusion and tethered cord release surgeries, and no longer meet any criteria for ME or CFS.

Read all the posts in my CCI + tethered cord series

Read this disclaimer. Crucially, surgery carries risks and it’s important to remember that in medicine, the same exact symptoms can have multiple, different causes. We have no idea how prevalent CCI is in our community and there’s been no research into its relationship with ME. We do know that it is more common among patients with EDS.

Maker of @unrestfilm. Plotter of revolution @MEActNet. Wife of @owasow.