Thread by @jenbrea

Separately, I’m trying to work on a Medium post re: my concerns about people pursuing neurosurgery. My basic position is diagnosis for all, surgery for a few and only after 6-24 months of intense self-education, seeking multiple opinions, and exhausting nonsurgical options.

https://twitter.com/jenbrea/status/1332786781889069056

(Unless your doctor deems your case medically urgent, which is rare.) I am similarly having a hard time writing this piece as it quickly becomes an overly long, overly technical treatise. This topic is so nuanced and complicated, with many unknowns.

So if you have any questions about surgery...please do ask them. It might help me figure out how to frame and focus the piece!

In the meantime, the FAQ written by the ME/CFS+ Brain & Spine Facebook group’s volunteers may be helpful: bit.ly/3jtNeqe

Here also is a link to the group: facebook.com/groups/MECFSBr… (feel free to join the queue. We’re still closed to new members as we work on revamping).

The main messages I would like to get out there are 1) #pwme are being diagnosed with a wide range of structural pathologies and comorbid syndromes. There are maybe 10+ tests and 30+ surgical and nonsurgical interventions. CCI has become a synecdoche, but I find that unhelpful.

2) NONE of these interventions are meant to treat #MECFS. They are interventions for specific diagnoses, all of which have objective measures. And they are not “cures,” not even for the underlying pathology, much less ME.

3) Most people who have at least one structural diagnoses end up having at least two pathologies in addition to their syndromes, often more. I have/had six “structural” diagnoses on the above list.

4) These diagnoses can interact both with your syndromes (especially #MCAS) and with each other. In some cases, one pathology can make the others worse. This is especially true for patients who have both CCI/AAI and tethered cord.

5) This means it is VERY important that everything be diagnosed (if/where possible) BEFORE embarking on a plan of care (surgical, nonsurgical or otherwise).

I do not believe the level of recovery I had is possible unless absolutely every problem is found and addressed. Critics may think this is a cop out, but it is the nature of connective tissue disorders. The disease process is systemic, so the sites of damage can be multiple.

6) All of this makes multiple opinions and the choice of neurosurgeon very, very important. Not every surgeon is experienced in connective tissue disorders. Not every surgeon is skilled in diagnosing all of the above. Every surgeon’s standard of care is different.

I had zero qualms about other patients following in my footsteps after the rigorous diagnostic process I went through, and the very experienced hands I was in. What I did not understand at the time is that every single neurosurgeon does things differently. Every one.

They have different diagnostic methods; different surgical thresholds; different protocols for anesthesia, pain management, and MCAS management; different bone graft; and different hardware. They even fuse different levels.

For example, one surgeon has historically done a lot of multi-level fusions. Another rarely does skull-C2, preferring C1-C2. Others fuse skull-C2, but skip putting screws in C1. Still others fuse skull-C3. Mine fused skull-C2.

Everyone is doing what they think is optimal but no one has a clue as to what is actually optimal. This puts patients in a difficult position. Unless and until you understand the possible implications of all the variations in approach, I don’t think you should be having surgery.

I am *particularly* concerned about trauma surgeons entering the field who do not understand all the ways in which people with connective tissue disorders are different.

If you take the best practices from trauma surgery and attempt to apply them to our patient population, the results would be disastrous. I expect more trauma surgeons will enter this field in the next many years and unless we research which techniques are optimal...

...I fear we will see many poor outcomes.

The only way I see to protect people from this is to cultivate fluency within our community around these (admittedly, highly technical) topics, while at the same time urging and supporting research.

7) All of the above mean that pursuing surgery, especially if you live outside the US/don’t have Medicare or private insurance, is at this moment a big Hail Mary. Odds are, you will need to pay cash for more than one surgery. Your surgeon may not prepare you for this.

Odds are you will be *underdiagnosed* for your other conditions, making it harder to achieve the fullest recovery possible.

What I would want to say to anyone with my diagnoses of CCI/AAI and tethered cord, is do not assume that just because you share these diagnoses and may be pursuing surgery for them, that we are having the same treatments.

And definitely do not assume, even with the same surgeon or same methods, that you will have my outcome. I went into surgery with very modest expectations and I think that is the only way to do it: with a full understanding of the methods, reasons, risks and low expectations.

10) recovery is brutal and looooong. So long. I am still in recovery. My surgeon says that 50% is the work he does and 50% is the work I do in the months and years that follow. This is absolutely right. Physical therapy, posture correction, strength training have been crucial.

11) There ARE nonsurgical treatment and management approaches for many of these conditions, as well as ways to use knowledge of your condition to prevent further injury and/or improve everyday QoL.

Diagnosis does not necessarily mean surgery. Diagnosis is valuable even if it does not lead to surgery.