My ME is in remission

J

JenB

Senior Member
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269
For eight years, I have mostly bedbound, homebound or a wheelchair user. It has been a sometimes wonderful, but often unbelievably difficult journey. I wanted to share that thanks to three neurosurgeries, all of my ME symptoms are now in remission.

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Medium post: https://medium.com/@jenbrea/health-update-3-my-me-is-in-remission-dd575e650f71

Reddit discussion:
https://www.reddit.com/r/cfs/comments/br01c4
 
P

perrier

Senior Member
Messages
1,254
Were you ever able to have Dr Davis' stress test? The one that will be used to diagnose ME?

What also puzzles me is why weren't symptoms more apparent in youth, or in teenage years?

The other thing all this raises is the possibility that CFS/ME is an end point of a series of different problems in the body?

I really find it quite astonishing that you had the symptoms of PEM ; I saw your excellent film, and it quite looked like CFS/ME to me.
 
J

JenB

Senior Member
Messages
269
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.
 
jeff_w

jeff_w

Senior Member
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558
perrier said:
The other thing all this raises is the possibility that CFS/ME is an end point of a series of different problems in the body?
Click to expand...

Yes!

perrier said:
I really find it quite astonishing that you had the symptoms of PEM ; I saw your excellent film, and it quite looked like CFS/ME to me.
Click to expand...

Isn't it the case that PEM (and by extension, ME) must have *some* underlying cause?

If we work with the assumption that yes, there is an underlying cause, then Jen (and I, and @mattie, and possibly @StarChild56 ) have found and addressed the underlying cause of our ME. In our cases, ME was being caused by brainstem compression resulting from craniocervical instability (CCI).
 
i-lava-u

i-lava-u

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692
Location
Utah, USA
I have seen the posts about CCI about special imaging needed for diagnosis...how is tethered cord diagnosed?
And, is there any relation to scoliosis?
 
Hip

Hip

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Messages
18,109
Absolutely fantastic @JenB! Congratulations! It was a brave thing to go in for the surgery, but the decision seems to have paid major dividends.

Your success is definitely going to help open up new treatment possibilities for other patients too: one CCI/AAI patient (@jeff_w) recovering through fusion surgery could have just been an idiosyncratic response; but now with two patients recovering, it's starting to look like there's something to Jeff's original CCI/AAI theory and discovery.
 
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P

perrier

Senior Member
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1,254
Dear Jeff,
Thanks for being there, and you too Jen.

Did you have headaches regularly? Did you have daily pain behind the eyes? Was your gait a bit odd?

This of course raises other issues: how to get at the root of the problem? Where does one go? If it isn't tethered cord, and is other things, how in heaven's does one find that needle in the hay stack.
 
Hip

Hip

Senior Member
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18,109
ljimbo423 said:
Do you have an idea of how the viral infection you had could have triggered/caused your CCI, or if you think it did?
Click to expand...

In this post I speculated that connective-tissue degrading enzymes, a set of enzymes that viral infections may induce, might possibly explain the weakened connective tissue that leads to CCI/AAI.

Coxsackievirus B is also known to chronically infect fibroblast cells. These are the cells which make the collagen and elastin of connective tissue.
 
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Rachel Riggs

Rachel Riggs

Rachel Riggs
Messages
62
Location
San Diego
@JenB

When you had issues post thyroid surgery, I realized that my neck issues started immediately after 6 months of PT for frozen shoulder which involved some painful neck exercises. Since then I have not been able to lie on my back - I get an excruciating occipital headache with pain behind my eyes and the longer I hold that position the more disoriented I become. Since it's positional, I just avoid that position as much as possible and sleep on my right side, which is now the only sleeping position I tolerate.

I am also a Kaufman patient, and have emailed Dr. B who will consult with me if I send him all the required forms.

But I fear I am actually not well enough to pursue this, and possibly too fragile for surgery. I am mostly housebound, and in a bad crash at the moment. I live in San Diego and am in the process of obtaining new MRI images and also getting a brain flow study - did you have a FLOW study? What type of image is the most elucidating in this situation?

I should add, I've known for years that I have pretty severe cervical spinal stenosis at c4-c7.

While the possibility of feeling better is exciting, I'm paralyzed with fear and wonder if I have the infrastructure (no family) to even support such a surgery or surgeries. Also, at 53 I do not have youth on my side as you do. ANY insights on my situation, including San Diego resources would be appreciated.

I'm SO thrilled you have returned to health!!!

Thank you,
Rachel
 
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rel8ted

rel8ted

Senior Member
Messages
451
Location
Usa
jeff_w said:
Why would they be? CCI/AAI can develop at any age. A tethered cord is congenital, but it is not always symptomatic, and it can become symptomatic later in life.
Click to expand...
I had wondered about the possibility that there was some degree of CCI/AAI from the beginning, therefore magnifying tethered cord symptoms after the surgery. In other words, the tethered cord was not really such a big nuisance until the head was properly placed on the spine.
 
frozenborderline

frozenborderline

Senior Member
Messages
4,405
Hi, @JenB , I do have a couple questions. What was your “sun allergy” like symptom wise? How did that impact your traveling in the desert, when you decided to try hard core mold avoidance ? Did you tolerate the sun in Moab okay?

I have cci as well as mold exposure and I have severe sun sensitivity but it has little to do with heat or light in general, ans is unrelated to any skin symptoms.

It basically manifests almost like going into shock from sun exposure.

Second question: when you discuss your mcas as related to the surgery, do you think that there’s some environmental factor upstream of both mcas and connective tissue issues, since you didn’t have congenital cci or ehlers Danilo’s? I understand if you don’t want to speculate too much publicly on this, but this is a forum where we all love to do wild speculation :)
 
Hip

Hip

Senior Member
Messages
18,109
In case anyone wants to do some background reading, here are several forum threads on craniocervical instability / atlantoaxial instability (CCI/AAI) in ME/CFS:

Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS
20 patients now found positive for CCI / AAI, there must be many more...
Tracking CCI / AAI MRI & Treatment outcomes
Regenexx for craniocervical instability: my experience
Update: CCI Surgery
Pursuing CCI/AAI, have questions, former high jumper & figure skater
Jeff anyone who have consulted with Dr Bolonesse ... help confused!
 
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