My ME is in remission

[Hip]

@jeff_w a question for you:

Regarding the normal diagnostic scan for CCI/AAI you mention on your website, namely and upright MRI with flexion, extension and rotational views.

Is this MRI scan sufficient to detect all the other spinal/skull conditions that can produce ME/CFS-like symptoms, including:

Craniocervical instability
Atlantoaxial instability
Chiari malformation
Cervical spinal stenosis
Syringomyelia
Tethered cord

In other words, if someone gets such an upright MRI, and sends the results to one of the CCI/AAI neurosurgeons listed on your site, would they be able to detect all of these conditions? Or would you need a different sort of scan to detect some of the above?

I know you said in this post that tethered cord is usually not detected prior to CCI/AAI surgery, because when a patient has CCI/AAI, their cord has more slack, but once the CCI/AAI is corrected, the tethered cord becomes more apparent. So here I am guessing you may need a second scan to detect a possible tethered cord.

But apart from that, can all the above be detected on the one upright MRI?



By the way, in the UK, in addition to the Medserena Upright MRI centers you mention on your site, I came across another company offering upright MRIs at three UK locations: www.uprightmri.co.uk. I am not sure if they offer suitable MRIs.

 

[frozenborderline]

Craniocervical instability
Atlantoaxial instability
Chiari malformation
Cervical spinal stenosis
Syringomyelia
Tethered cord

AAI is detectable via rotation. I mistakenly didn’t get the rotational view on my mri , thus need additional imaging. Chiari is also best viewed by upright cervical mri I believe. Those are the only two I know about , will let Jeff and others answer the rest.

 

[Hip]

AAI is detectable via rotation. I mistakenly didn’t get the rotational view on my mri , thus need additional imaging.

How do they take these flexion, extension and rotational views, by the way? Do they just say "Chin up, say cheese" and then take an MRI snapshot? Then say "chin down", and take another snapshot, and so forth?

 

[Peter Pain]

@JenB
I am very happy for you! Thanks for your detailed report!

Is it possible that your remission could have come in the hospital for weeks at a time? after all, a moderately affected otherwise no longer takes so long rest.

 

[mymichelina]

Yes it did look like ME...because it was!

Unfortunately I did just miss the stress test, but hopefully we will be able to test future patients getting this surgery. I did have extensive metabolomics testing, acetylcholine receptor autoantibody testing, CPET, NK function, etc. and all of my testing is in line with research findings.

@Jen, I am one of the 20 Severally Ill Patients from the Big Data Study.

 

[jeff_w]

Hi @Peter Pain -

@JenB
I am very happy for you! Thanks for your detailed report!

Is it possible that your remission could have come in the hospital for weeks at a time? after all, a moderately affected otherwise no longer takes so long rest.

I'll tell you my experience, and hopefully Jen will chime in, too. Jen and I had the exact same fusion surgery. Prior to my fusion, I was bedridden for years. All of that time spent flat on my back in bed did not resolve my ME (POTS/PEM/etc.).

I don't see how it would have resolved Jen's, either. This is especially clear given her pre-surgical response to invasive cervical traction. Prior to her surgery (and her subsequent hospital stay), the neurosurgeon performed a traction test on her that would perfectly mimic a fusion. The purpose of this traction test was to make sure Jen would be a good surgical candidate.

During this pre-surgical traction test, Jen felt healthy for the first time in years. With this traction test, the neurosurgeon temporarily lifts the skull off of the brainstem in a precise, x-ray-guided manner -- completely freeing the brainstem from mechanical compression. When the neurosurgeon let go, Jen felt sick with ME once again. This is a clear indication that Jen's problem was brainstem compression, as was mine.

 

[kangaSue]

I would like to ask if you believe that having a 39 degree S curved Scoliosis could cause the pressure in the neck and brain? My brain scans show white matter in the Pons and Midbrain with no definitive diagnosis. They mention possible strokes.??

Thank you!!

Do a search for "midline congestion syndrome", something that can be a consequence of Scoliosis causing a narrowing of the left renal vein. This can lead to causing neck pain and headaches when kidney return blood flow is more directed into the azygus venous collection system, possibly also causing increased intracranial pressures where some excess blood flow gets directed to the spinal canal and thus, the potential to cause lesions in the brain too.

 

[frozenborderline]

How do they take these flexion, extension and rotational views, by the way? Do they just say "Chin up, say cheese" and then take an MRI snapshot? Then say "chin down", and take another snapshot, and so forth?

They had a kind of bar to hold my head in position up or down, along with pads tha held my head snug btwn both sides of the mri. You sort of choose the position. I wish I’d flexed more but also wanted to nake sure I could hold the position enough to make the images clear , which is a concern with upright imaging.

 

[Roy S]

Jen and Jeff, what dates were your surgeries?

 

[jeff_w]

In addition to Jen and myself, we now have a 3rd person with ME who has had the same surgery. He has experienced significant improvement! I figure everyone following this thread would be interested in Mattie's story. I interviewed him, here.

Let's not derail Jen's thread. I just popped this in here to alert everyone. If you're interested in Mattie's story, his thread is here.

 

[jeff_w]

Jen and Jeff, what dates were your surgeries?

My fusion was in January of 2018. Jen's was 11 months later, in December of 2018.

 

[Jackdaw]

This news provokes two very different emotions in me. The first is joy for @JenB After all you have done and are doing for people with ME it is wonderful to hear of good health news for such an amazing person! My recent hospital visits and such have directly felt the impact of your campaigning efforts. I was often thanking God for you from my hospital bed.

The other emotion though is consternation. My opinion is that Jen is right and that there are multiple ways that the disease outcome of ME is reached via problems with the same body area. So it looks like Jen had the structural type. This raises the question of how many ME people do? Even if this is an unusual cause, maybe 0.1% of ME sufferers, that is still going to be thousands of people worldwide. Thousands of people that can’t access, whether through distance, finances or health, the three surgeons who treat this. Although it’s right this is more common in EDS it isn’t catered for. A woman was in the newspapers in my country (UK) with EDS who needed this op. She couldn’t get it, had to fundraise and go to Spain. Basically, it is good to have potentially found an ME subgroup as it will inform research for the disease in general, but for most people, a surgical rather than a drug cure is bad news. I can’t even manage an upright MRI to know if I am in the group, let alone treatment. There will be many more like me than people who can access diagnosis and surgery.

 

[valentinelynx]

There will be many more like me than people who can access diagnosis and surgery.

Sadly, I'm sure this is true. I'm conflicted even knowing that this may be my diagnosis as I don't see how I can possibly afford the surgery.

 

[Avena]

Hi @JenB - so happy for your results!
- you mention needing a collar in the car. Is this for life, or just until you are strong enough without it?
- Can you do sports (with risk of falling) in the future?

 

[Hip]

So it looks like Jen had the structural type. This raises the question of how many ME people do?

According to Jeff, out of around 20 ME/CFS patients that got tested by MRI for CCI/AAI or Chiari, over 90% have tested positive. See this post.

 

[Hip]

Sadly, I'm sure this is true. I'm conflicted even knowing that this may be my diagnosis as I don't see how I can possibly afford the surgery.

Does anyone know the ballpark cost of this CCI/AAI surgery?

 

[perrier]

According to Jeff, out of around 20 ME/CFS patients that got tested by MRI for CCI/AAI or Chiari, over 90% have tested positive. See this post.

Thanks Hip for all your hard work. Now if the majority of the 20 patients are positive, I have to ask: was there or were there any particular symptoms that they all shared which might point to this kind of structural problem: Jen talked of headaches, and Jeff talked of symptoms worsening when turning the head. There must be symptoms specific to this structural problem, in addition to the other more systemic ones.

 

[Hip]

I have to ask: was there or were there any particular symptoms that they all shared which might point to this kind of structural problem

That was also my question, see my post here:

90% of over 20 ME/CFS patients tested have CCI/AAI?! That would be an astonishing percentage if it pans out to larger sections of the ME/CFS population.

Would you say that the ME/CFS patients who tested for CCI/AAI are representative of the general ME/CFS population? Or did some of these patients decide to test for CCI/AAI because they already had symptoms that made them suspicious they might have CCI/AAI (in which case they would not be that representative of the general ME/CFS population)?

 

[serg1942]

@JenB and @jeff_w , congratulations and thank you so much for sharing your experinces and taking the time to continue answering our questions. UNREST has been a real breakthrough in Spain in terms of understanding and spreding knwoledge on ME/CFS--thank you from the bottom of my heart for making it happen! .

I'm reading all the posts with so much interest, and I am really in awe... I still remember the neuroanatomy I studied in medical school, and yes, I can see how a compression of the brainstem and spinal cord could lead to ME/CFS symptoms, and even more amazing, to the typical clinical abnormalities. There could be several creative but plausible explanations for this (autonomic disfunction leading to immune dysregulation and gut issues, then causing disbiosis and leaky gut, then chronic immune activation and depression, loss of immune tolerance, together with hormonal disbalances, etc.)

However, what are the odds of suffering non-structural inflammation of the brain, which causes SIMILAR symptoms and clinical signs? I mean, there should be a very specific and localized brain compression to cause in the long term the typical ME/CFS symptoms... If you inflict the brain damage just a few milimeters apart, the consequences will be so different... So, I understand that the same structural abnormality may end up in similar symptoms... But I don't see how a non-structural brain inflammation can present with similar symptoms... The chances of this are just so slim that I cannot think of a process to explain it... The only explanation I can think of is that there's some kind of similar structural issues in all ME/CFS patients , what doesn't seem likely.

Note that when we correctly assume that many stressors can lead to ME/CFS, we can understand this fact becuase diferent stressors are interpreted by the brain as the same insult, and in response to this, the same events take place (partially blocked methylation cycle, or adrenal exhaustion, or a 'Dauer' response...). But we are considering here biochemical, nutritional or microbial insults... I don't see how these stressors might emule the consequences of a physical localized chronic trauma of the CNS...

Again thank you!
Best
Sergio

 

[gm286]

@JenB Hello Jen! Congrats!!

I have a question that came up after hearing your news of remission. You were writing about hypermobility spectrum disorders and hEDS (Hypermobile Ehler Danlos Syndrome) on Medium. In those articles, you were guessing at a spectrum where hypermobility disorders shared something with CFS/ME.

Do you still feel that way now or do you find that it is more useful to think of them as separate things? Did you feel that your surgery applied to you as an ME/CFS patient, or as someone who may have a hypermobility spectrum disorder (extending maybe even to hEDS).

For clarification on the hEDS/Hypermobility diagnoses (someone explains this well on the FB Cusack Protocol group): Hypermobility disorder is diagnosed when the symptoms are primarily joint related. Ehlers Danlos has that plus a bunch of other issues—GI issues, stretchy skin, thin skin, easy bruising, abnormal scarring, prolapse, blue sclera, etc, plus all the comorbidities (POTS, MCAS, migraines, etc). Basically the criteria states if there’s only x amount of these symptoms it’s hypermobility. If there’s x amount more symptoms it’s eds. hEDS and hypermobility were often interchangeable until the recent criteria establishment.

The reason I ask is because thinking of myself as not necessarily just an ME/CFS person but possibly also Hypermobile has helped me move forward. I was dx'd CCI in Barcelona. Then learned about the Cusack protocol FB group for people with connective tissue problems in relation to hEDS. The protocol has helped me quite a bit. I also have a number of issues with my eyes (floaters, spots, maybe early macular degeneration) which yield really low discussion results on these boards but which were plentiful on the EDS group.

Long story short: do you still think of yourself as having had possibly a hypermobility spectrum disorder -- or merely ME/CFS -- as a result of the CCI? Thank you Jen.