Improvement of severe ME/CFS following surgical treatment of cervical spinal stenosis

[pattismith]

Jeff already pointed out this important article:

Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis
Peter C. Rowe,

1 Colleen L. Marden,1 Scott Heinlein,2 and Charles C. Edwards, II3
Peter C. Rowe
1Division of General Pediatrics and Adolescent Medicine, Department of Pediatrics, Johns Hopkins University School of Medicine, 200 N. Wolfe St., Room 2077, Baltimore, MD 21287 USA
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Colleen L. Marden
1Division of General Pediatrics and Adolescent Medicine, Department of Pediatrics, Johns Hopkins University School of Medicine, 200 N. Wolfe St., Room 2077, Baltimore, MD 21287 USA
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Scott Heinlein
2Lifestrength Physical Therapy, Inc, 110 West Road, Suite 105, Towson, MD 21204 USA
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Charles C. Edwards, II
3Maryland Spine Center, Mercy Medical Center, 301 St. Paul Place, Baltimore, MD 21201 USA
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Author information Article notes Copyright and License information Disclaimer
1Division of General Pediatrics and Adolescent Medicine, Department of Pediatrics, Johns Hopkins University School of Medicine, 200 N. Wolfe St., Room 2077, Baltimore, MD 21287 USA
2Lifestrength Physical Therapy, Inc, 110 West Road, Suite 105, Towson, MD 21204 USA
3Maryland Spine Center, Mercy Medical Center, 301 St. Paul Place, Baltimore, MD 21201 USA
Peter C. Rowe, Phone: 410-955-9229, Email: ude.imhj@eworp.
Contributor Information.

Corresponding author.
Received 2017 Nov 14; Accepted 2018 Jan 24.
Copyright © The Author(s) 2018
Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.


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Abstract
Background
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a potentially disabling disorder. Little is known about the contributors to severe forms of the illness. We describe three consecutive patients with severe ME/CFS whose symptoms improved after recognition and surgical management of their cervical spinal stenosis.
Methods
All patients satisfied clinical criteria for ME/CFS and orthostatic intolerance, and were later found to have cervical spinal stenosis. Overall function was assessed before and after surgery using the Karnofsky score and the SF-36 physical function subscale score.
Results
Neurological findings included > 3+ deep tendon reflexes in 2 of 3, a positive Hoffman sign in 2 of 3, tremor in 2 of 3, and absent gag reflex in 1 of 3. The cervical spine canal diameter in the three patients ranged from 6 to 8.5 mm. One had congenital cervical stenosis with superimposed spondylosis, and two had single- or two-level spondylosis. Anterior cervical disc replacement surgery in two patients and a hybrid anterior cervical disc fusion and disc replacement in the third was associated with a marked improvement in myelopathic symptoms, resolution of lightheadedness and hemodynamic dysfunction, improvement in activity levels, and improvement in global ME/CFS symptoms.
Conclusions
The prompt post-surgical restoration of more normal function suggests that cervical spine stenosis contributed to the pathogenesis of refractory ME/CFS and orthostatic symptoms. The improvements following surgery emphasize the importance of a careful search for myelopathic examination findings in those with ME/CFS, especially when individuals with severe impairment are not responding to treatment

 

[toyfoof]

This article is currently my focus, as I have cervical stenosis in C5-C7 and my scans look very similar to the ones shared in the article.

I plan to try to research whether non-surgical treatments can improve stenosis, and try those first. I've been in PT for my neck and I just got a referral to go back, so I'm going to talk to my physical therapist about this article and see what she thinks, as well as possibly try to get an upright MRI with the views Dr. Gilete wants, because his office also does stenosis and lower cervical treatments and surgery.

I've also consulted with a spinal surgeon locally who has told me I am a candidate for surgery, so I may go back to him and find out more.

Stenosis surgery seems much less scary and invasive than CCI/AAI surgery (from what I understand at this very beginning stage of my research, they cut out the bone that is narrowing the spinal canal, and possibly insert new discs that will not degenerate). And right now, I'm closer to the mild side of moderate -- not able to work full time, but not housebound -- so I don't want to do anything that will set me back. So I'm going to take this slowly and carefully and weigh all the risks and benefits as much as possible.

 

[pattismith]

@toyfoof , please would you tell what kind of stenosis you suffer from, hernia, bulging disc?
Also do you suffer from any cervical instability?
Do you have POTS or OI? Fibromyalgia?

I forgot to put the link to the full article:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5796598/

quote from the article:

" sagittal antero-posterior (AP) diameter of the cervical canal of less than 13 mm is a strong risk factor for the development of myelopathy"

interesting that these three patients had both orthostatic problems and low cervical spondylosis (C5-C6-C7).

They improve with stenosis correction, which means that the cord compression at a cervical low level was responsible for their POIS, so brainstem compression is not the only one to cause ME/CFS.
Cord compression may produce ME/CFS, whatever the cervical level involved.
Also interesting that patient 1 got ill at 12, after a viral gastroenteritis...

 

[toyfoof]

@toyfoof , please would you tell what kind of stenosis you suffer from, hernia, bulging disc?

Hi @pattismith

Here are the key readings from the radiology report from my supine cervical MRI, December 2018. I looked up all these terms when I got the report but I've forgotten what they mean. The spinal surgeon showed me the MRI and how the canal narrows as you go through C5-C7 and my cord is contacted.

C5-C6: Moderate disc osteophyte complex. Mild central narrowing. Bilateral marginal vertebral osteophytes result in bilateral mild neuroforaminal narrowing.

C6-C7: Mild disc osteophyte complex. Mild to moderate left and minimal right neuroforaminal narrowing.

C7-T1: Mild facet hypertrophy.

Impressions:

Relatively intense edema in the C6 and C7 vertebral bodies surrounding C6-C7. ....C6 slight compression fracture...

Disc osteophyte complexes at multiple levels. The cord is contacted at C5-C6.

Also do you suffer from any cervical instability?

Dr. B declined me as a patient based on my supine MRI, so I don't believe I have CCI. Apparently an AAI diagnosis needs an upright MRI with rotational views so I may try to get that to rule that out, but I suspect not. My CFS doctor, who is also an osteopath, did tell me at my first appointment with him that my A-O joint is sublaxed, but I'm not sure if that indicates instability (unfortunately I only do teleconference with him now so he's unable to help me with this, and I haven't found anyone locally who knows about this joint).

Do you have POTS or OI? Fibromyalgia?

I've never been evaluated for POTS or OI but I do believe that I had it when I was more severe. It doesn't trouble me now. I do have fibro.

" sagittal antero-posterior (AP) diameter of the cervical canal of less than 13 mm is a strong risk factor for the development of myelopathy"

I wish my report included measurements. Another thing on my list while I research is to see if I can have someone look at my scans and give me the exact measurements, or figure out how to measure it myself.

 

[pattismith]

@toyfoof

This team had good results in treating fibro patients with cord compression:


Treatment of cervical myelopathy in patients with the fibromyalgia syndrome: outcomes and implications

• Dan S. Heffez
  
• Ruth E. Ross
• Yvonne Shade-Zeldow
• Konstantinos Kostas
• Mary Morrissey
• Dean A. Elias
• Alan Shepard

1. 1.Chicago Institute of Neurosurgery and Neuroresearch Medical GroupChicagoUSA
2. 2.Rush UniversityChicagoUSA
3. 3.Chicago Lakeshore Medical AssociatesChicagoUSA
4. 4.Milwaukee Neurological InstituteMilwaukeeUSA

Original Article
First Online: 11 April 2007

Abstract
Some patients with fibromyalgia also exhibit the neurological signs of cervical myelopathy. We sought to determine if treatment of cervical myelopathy in patients with fibromyalgia improves the symptoms of fibromyalgia and the patients’ quality of life.
A non-randomized, prospective, case control study comparing the outcome of surgical (n = 40) versus non-surgical (n = 31) treatment of cervical myelopathy in patients with fibromyalgia was conducted.
Outcomes were compared using SF-36, screening test for somatization, HADS, MMPI-2 scale 1 (Hypochondriasis), and self reported severity of symptoms 1 year after treatment. There was no significant difference in initial clinical presentation or demographic characteristics between the patients treated by surgical decompression and those treated by non-surgical means.
There was a striking and statistically significant improvement in all symptoms attributed to the fibromyalgia syndrome in the surgical patients but not in the non-surgical patients at 1 year following the treatment of cervical myelopathy (P ≤ 0.018–0.001, Chi-square or Fisher’s exact test).
At the 1 year follow-up, there was a statistically significant improvement in both physical and mental quality of life as measured by the SF-36 score for the surgical group as compared to the non-surgical group (Repeated Measures ANOVA P < 0.01). There was a statistically significant improvement in the scores from Scale 1 of the MMPI-2 and the screening test for somatization disorder, and the anxiety and depression scores exclusively in the surgical patients (Wilcoxon signed rank, P < 0.001).
The surgical treatment of cervical myelopathy due to spinal cord or caudal brainstem compression in patients carrying the diagnosis of fibromyalgia can result in a significant improvement in a wide array of symptoms usually attributed to fibromyalgia with attendant measurable improvements in the quality of life. We recommend detailed neurological and neuroradiological evaluation of patients with fibromyalgia in order to exclude compressive cervical myelopathy, a potentially treatable condition.

 

[toyfoof]

@pattismith
Thank you! I will add this article to my research/“ask my doctors about” list.

 

[borko2100]

I read the article @pattismith posted and found this table, summarizing the improvements in symptoms after spinal surgery:

It is striking how many typical ME / CFS symptoms, such as fatigue and PEM improved after the surgery. Apparently, spinal chord compression can cause not only fibro-pain symptoms, but typical ME / CFS ones as well. Often times we hear of ME / CFS patients suffering from cervical myelopathy (spinal chord compression) and being reassured that it cannot be the root cause of their disease. I think it is time we started to reconsider that way of thinking.

What is even more striking is that this study is from 2007! And as far as I can tell it has not been followed up. A similarly designed study for ME / CFS sufferers is sorely needed!

 

[pattismith]

I read the article @pattismith

It is striking how many typical ME / CFS symptoms, such as fatigue and PEM improved after the surgery. Apparently, spinal chord compression can cause not only fibro-pain symptoms, but typical ME / CFS ones as well. Often times we hear of ME / CFS patients suffering from cervical myelopathy (spinal chord compression) and being reassured that it cannot be the root cause of their disease. I think it is time we started to reconsider that way of thinking.

What is even more striking is that this study is from 2007! And as far as I can tell it has not been followed up. A similarly designed study for ME / CFS sufferers is sorely needed!

Yes, the table is out of this article (free access)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2200733/


And the other article at the top shows how ME/CFS symptoms improve after cord compression surgery (2017 study).

I can't understand why spinal stenosis and cord/brainstem compression has not been identified earlier as trigger causes of ME/CFS and Fibro….Are the psycho hypothesis responsible for this late awareness?

How can we advocate for a quicker recognition of this link among medical community?

 

[lafarfelue]

How can we advocate for a quicker recognition of this link among medical community?

This is a ('the'?) big, important question. @JenB, are you and/or ME Action working on it or parts that can contribute to increased recognition of spinal links? I know you're writing successive articles about your experience and treatment, just wondering if there's something more of us might contribute to..? (Working on getting an understanding of ME out there is probably enough of a project? 😅)

Either way, it may be worth a separate thread on how to work to achieve this? (I'd start one but I'm probably not well or resourced enough to contribute or carry anything forward)

 

[pogoman]

Interesting the spine may have involvement in dissimilar diseases.
My new neuro thinks I have a lumbar radiculopathy (pinched spinal nerve root) that is the cause of my myopathy and maybe all the other issues.
Scheduled to do ECG and nerve conduction study in 3 weeks.

 

[Gingergrrl]

My new neuro thinks I have a lumbar radiculopathy (pinched spinal nerve root) that is the cause of my myopathy and maybe all the other issues.

@pogoman Do you mean that your new neuro thinks that you autoimmune myopathy/ neuromuscular issues are somehow caused by lumbar radiculopathy?!! Did he explain what the connection is?

I have cervical radiculopathy (past & current) plus serious autoimmune neuromuscular issues (prior to my treatments) but I continue to assume that these two things are unrelated. All of this new info is fascinating to me (and I really appreciate all of the smart people who are able to sort through it and figure out the connections... which is not me )

 

[pogoman]

@pogoman Do you mean that your new neuro thinks that you autoimmune myopathy/ neuromuscular issues are somehow caused by lumbar radiculopathy?!! Did he explain what the connection is?

I have cervical radiculopathy (past & current) plus serious autoimmune neuromuscular issues (prior to my treatments) but I continue to assume that these two things are unrelated. All of this new info is fascinating to me (and I really appreciate all of the smart people who are able to sort through it and figure out the connections... which is not me )

The rtx seems to have stabilized the muscle loss in my right thigh where the myopathy is.
He didn't say anthing about the autoimmune connection but he is continuing the rtx treatment, I'm due this month so Kaiser should be calling this week to set the date.
I also asked him if the tissue loss could be from a lipodystrophy instead but he was positive its quadricep muscle loss.

He thinks the myopathy in my right leg is due to overcompensating for my prosthetic left leg causing neuro and pain issues at the end of work and at night time.
A damaged nerve can cause atrophy to the muscle it goes to.
He also said radiculopathy symptoms can be worse during sleep and he also asked about neck issues in the past, before all this started I did have a stiff neck for a few years.

This is a different doctor than the one I saw in April, was not impressed with that one so I requested another doctor.
This doctor actually read my medical file before meeting me, he knew all about my medical issues beforehand.

 

[Cam Newton]

Just took a look at that chart. 50% of people found an improvement in fatigue after exercise and 8% found a worsening of fatigue after exercise. Considering fatigue after exercise is probably the main physical trait of ME/CFS, it seems impossible that this spinal issue causes ME/CFS broadly.

Not to mention placebo control is impossible, and these are patients who were diagnosed to have these certain spinal issues - not a random assortment of ME/CFS patients.

 

[cigana]

Often times we hear of ME / CFS patients suffering from cervical myelopathy (spinal chord compression) and being reassured that it cannot be the root cause of their disease. I think it is time we started to reconsider that way of thinking.

This is my latest line of thinking too, good to know there are others.

 

[starlily88]

Interesting the spine may have involvement in dissimilar diseases.
My new neuro thinks I have a lumbar radiculopathy (pinched spinal nerve root) that is the cause of my myopathy and maybe all the other issues.
Scheduled to do ECG and nerve conduction study in 3 weeks.

I found out after complaining for years that I have thoracic Radiculopathy - which is the most uncommon of the three - it being in middle of my spine. I had hour testing by my Electric conduction Physiatrist - it was awful hearing the weird, different sounds when he hit my mid spine - he told me to listen.......... my nerves were "not working", pinched, sticking out of my spine, and inflamed.
How does one go about going to a Dr and asking to be tested for cervical myelpathy?
So if I have Thoracic, not cervical radiculopathy - does that mean, am I not a candidate? Starlily88

 

[pogoman]

I found out after complaining for years that I have thoracic Radiculopathy - which is the most uncommon of the three - it being in middle of my spine. I had hour testing by my Electric conduction Physiatrist - it was awful hearing the weird, different sounds when he hit my mid spine - he told me to listen.......... my nerves were "not working", pinched, sticking out of my spine, and inflamed.
How does one go about going to a Dr and asking to be tested for cervical myelpathy?
So if I have Thoracic, not cervical radiculopathy - does that mean, am I not a candidate? Starlily88

I saw my neuro yesterday for the EMG and nerve conduction tests.
Afterwards he said the myopathy in my leg is separate from the radiculopathy so there goes that theory for me lol.
It is weird listening to the static noise as he sticks you with needles and you flex certain muscles.
When he did the muscle where I had myopathy it sounded like a machine gun, also did the same sound in my upper ankle and he said the myopathy is there too.

For the radiculopathy he is recommending physical therapy first so I have a referral to Kaiser PT dept.

 

[starlily88]

I read the article @pattismith posted and found this table, summarizing the improvements in symptoms after spinal surgery:

It is striking how many typical ME / CFS symptoms, such as fatigue and PEM improved after the surgery. Apparently, spinal chord compression can cause not only fibro-pain symptoms, but typical ME / CFS ones as well. Often times we hear of ME / CFS patients suffering from cervical myelopathy (spinal chord compression) and being reassured that it cannot be the root cause of their disease. I think it is time we started to reconsider that way of thinking.

What is even more striking is that this study is from 2007! And as far as I can tell it has not been followed up. A similarly designed study for ME / CFS sufferers is sorely needed!

Yesterday August 7 2019 I was diagnosed with Cervical stenosis. I have been suffering so much every day/nite with no relief for last 14 months. Don't laugh - but I saw a well known Podiatrist. I was surprised how he knew where to touch on my feet, legs, hips, etc - and me reacting with such pain.
He wants me to see an 'academic" neurologist - told me I have cervical problem in left neck, and Lumbar spine nerve problem causing all my symptoms. So all my very painful symptoms is from Cervical spine/Lumbar spine nerve problem.
What kind of Neurologist do I see? I don't find neurologists warm, fuzzy, or kind - so don't want to have to see 5 -10 Neurologists for absolutely nothing.
Starlily88

 

[pattismith]

Yesterday August 7 2019 I was diagnosed with Cervical stenosis. I have been suffering so much every day/nite with no relief for last 14 months. Don't laugh - but I saw a well known Podiatrist. I was surprised how he knew where to touch on my feet, legs, hips, etc - and me reacting with such pain.
He wants me to see an 'academic" neurologist - told me I have cervical problem in left neck, and Lumbar spine nerve problem causing all my symptoms. So all my very painful symptoms is from Cervical spine/Lumbar spine nerve problem.
What kind of Neurologist do I see? I don't find neurologists warm, fuzzy, or kind - so don't want to have to see 5 -10 Neurologists for absolutely nothing.
Starlily88

Not sure I understood you well starlily... do you mean that you got a cervical stenosis diagnosis yesterday by a podiatrist?

 

[Gingergrrl]

He wants me to see an 'academic" neurologist - told me I have cervical problem in left neck, and Lumbar spine nerve problem causing all my symptoms.

What kind of Neurologist do I see?

I am assuming that he meant a neurologist who works in a University setting in academic medicine (but I could be wrong). Can you ask him what he meant and if he has any potential referrals? My worst doctor experience of all time was with a Neuro in academic medicine but of course every doctor is different. I also saw two other Neuros shortly after that who were not in academic medicine and they were (almost) as bad.

 

[rel8ted]

He wants me to see an 'academic" neurologist

I would be less inclined to care about the “academic” part & more inclined to look for a specialist in cervical stenosis.
2 important points here
1. A podiatrist told you that you have stenosis. Unless he has a working relationship with someone he is referring to, that is likely to be called poo-poo

2. He make be wanting you to see the wrong specialty. It happens. Neurology normally deals with nerve disorders. Neurosurgery, physical therapy, or possible an orthopedic surgeon with spine expertise seems more viable.

Just my 2 cents. Like @Gingergrrl, I’ve had more than my share of awful neuro visits.