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Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

Sushi

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you had atlas profiliax?? what made you try something that aggressive? i thought that was supposed to hold a lot better than AO
That was over 20 years ago. I didn’t even have a diagnosis and it isn’t really aggressive—just a tap. No effect on ME/CFS symptoms though neck was better for a bit.
 

rel8ted

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I don’t know if I have CCI but I do have hEDS and cervical degeneration.

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@Sushi have you ruled out cervical myelopathy? I thought CCI was a possibility for me, but it turned out I had such instability in my C-spine that it was compressing my spinal cord on flexion & extension. https://www.hopkinsmedicine.org/health/conditions-and-diseases/cervical-myelopathy

I had a lot of odd neuro symptoms & degenerative disc disease in C5 so bad that it had to be removed. I cannot say that I gained a lot from the surgery at this point other than I do not have pain in that area of my neck anymore, but I am also very slow to heal, so time will tell. There are other spine issues that need to be addressed, but my surgeon wants me to take more time and see how I recover first - he is pretty conservative.
 

Sushi

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@Sushi have you ruled out cervical myelopathy?
Wow, sounds like you have had a rough time--so sorry. I don't have the symptoms of cervical myelopathy, so I think that it is unlikely that this is my diagnosis. Thanks for bringing it up though and I really hope that time will be kind to you in healing.
 
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Had 5 kg of traction with a machine at a PT yesterday and it definitely did not feel good.

The PT started by pulling on my neck with his hands slightly and that felt okay.

He then put me on an intermittent traction machine at 5 kg force. I started to get some discomfort in my jaw, which wasn't too bad but then I started feeling queasy and dizzy.

The dizziness was quite worrisome as it has never been a symptom of mine. So I immediately stopped.

Mild dizziness persisted which took some time (1-2 hours) to subside completely.

My instincts are telling me not to go through with this so I'm going to table it for now.

Will get an ophthalmology test soon. Along with the MRV I hope to pursue an IH diagnosis with Dr. G.
 
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I thought I might post some pictures of my MRV in case someone has any insights.

The MRV report indicates hypoplastic left jugular vein and hypoplastic left transverse sinus vein.

Looking at the MRV it does seem like one side is underdeveloped, but I'm not sure how significant or common this is, or how much it might contribute to a potential diagnosis of intercranial hypertension. I hope the consultation will shed some light on this.
 

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rel8ted

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Wow, sounds like you have had a rough time--so sorry. I don't have the symptoms of cervical myelopathy, so I think that it is unlikely that this is my diagnosis. Thanks for bringing it up though and I really hope that time will be kind to you in healing.
Thanks. It's coming along slowly. Glad you don;t have that issue!
 

Daffodil

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What is weird? I'm not sure what you mean?
its strange that something like atlas profilax would have no affect on the ME/CFS...i mean it is really starting to look like there is a connection between CCI and this disease for many people
 

Daffodil

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@Sushi have you ruled out cervical myelopathy? I thought CCI was a possibility for me, but it turned out I had such instability in my C-spine that it was compressing my spinal cord on flexion & extension. https://www.hopkinsmedicine.org/health/conditions-and-diseases/cervical-myelopathy

I had a lot of odd neuro symptoms & degenerative disc disease in C5 so bad that it had to be removed. I cannot say that I gained a lot from the surgery at this point other than I do not have pain in that area of my neck anymore, but I am also very slow to heal, so time will tell. There are other spine issues that need to be addressed, but my surgeon wants me to take more time and see how I recover first - he is pretty conservative.
did you have brain fog before and if so, how is it now? ok i am sure i have asked this before lol
 

rel8ted

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did you have brain fog before and if so, how is it now? ok i am sure i have asked this before lol
Yes, and I do still have cognitive issues. I have been told to expect improvement over a year from my surgery, but my research indicated that the best chance of healing from a spinal cord injury is to have the repair within 6 months if the onset. I could hardly get a doctor who didn't think I was psychosomatic for 24 years!
 
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Having researched patient stories before committing to the procedure, this is what I often read was reported. It makes no sense to me, since the treatment is supposed to permanently re-align the atlas to its correct position. So either

a) the science about the treatment re-aligning the atlas permanently is wrong,
b) the treatment is working through some other effects than atlas re-alignment or
c) it's mostly based on placebo.
I see an option d) here: It is permanent in healthy people, but for certain patients it is not.

I'm thinking root causes, like tissue problems, that just causes the problem to show up again. Presumably most people seeking out the treatment would fall into this category? Which isn't to say this group is the one it's been tested on originally.
 

Ecoclimber

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New injection technique may boost spinal cord injury repair efforts

Date:
January 29, 2020


Source:
University of California - San Diego


Summary:
Researchers describe a new method for delivering neural precursor cells to spinal cord injuries in rats, reducing the risk of further injury and boosting the propagation of potentially reparative cells.


Body:

NSCs hold great potential for treating a variety of neurodegenerative diseases and injuries to the spinal cord.

The stem cells possess the ability to differentiate into multiple types of neural cell, depending upon their environment. As a result, there is great interest and much effort to use these cells to repair spinal cord injuries and effectively restore related functions...

...Marsala, senior author Joseph Ciacci, MD, a neurosurgeon at UC San Diego Health, and colleagues suggest that subpially-injected cells are likely to accelerate and improve treatment potency in cell-replacement therapies for several spinal neurodegenerative disorders in which a broad repopulation by glial cells, such as oligodendrocytes or astrocytes, is desired.

"This may include spinal traumatic injury, amyotrophic lateral sclerosis and multiple sclerosis," said Ciacci....

https://www.sciencedaily.com/releases/2020/01/200129125606.htm?utm_source=dlvr.it&utm_medium=twitter

Still aways off but they are looking at it...

Eco[/SIZE]
 

valentinelynx

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swedish article about me/cfs and cervical issues, follows patient who had surgery in barcelona: you can translate article on google, its worth it

https://www.vg.no/forbruker/helse/i...5Whz3p2OR9DMDo1UkpaaaCrI9Q0vzNghIm2IIaU8NP1uI
Interesting article. Typical journalism, asking the wrong people. Here's a quote to raise your hackles::

"Professor Bratholm Wyller does not recommend neck surgery to ME patients until further scientific studies are conducted.

- I would strongly warn against giving such treatment before you have very good scientific documentation. Neck surgery is not without risk and should of course only be used when you are absolutely certain that the benefit is greater than the risk of side effects. There are far too many examples of undocumented treatment being given to ME patients - which have subsequently proven to have no positive effect.

He says that there are therapies with documented benefit in ME patients, namely cognitive behavioral therapy and graded activity adaptation.

- These therapies have little risk of side effects and can be recommended for all ME patients. Of course, that does not mean that everyone benefits equally, he says."

"Little risk of side effects" my patootie! :bang-head:
 
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swedish article about me/cfs and cervical issues, follows patient who had surgery in barcelona: you can translate article on google, its worth it

https://www.vg.no/forbruker/helse/i...5Whz3p2OR9DMDo1UkpaaaCrI9Q0vzNghIm2IIaU8NP1uI
It's Norwegian, not Swedish, although they interview a Swede - Scandinavia can be like that sometimes, confusing, I know.

VG is one of our main tabloids, and this is just a side to a far bigger article on Saturday, but behind a paywall. Then we had the usual argument (it's not a real disease, lol) on Monday, and then today, Tuesday, there's another, an interview with a lady who got fused down to c7 and got her life back.

My mother sent me pictures of the whole thing as I can't get the actual paper, but somehow my brain isn't up for figuring out how to turn them the right way around. I can send them to someone by email.

But they asked a lot of people in addition to all the wrong ones, so that's good. This is, in fact, the most positive ME coverage I have seen in the tabloids ever. They're actually discussing whether Norway should buy a machine for standing MRI, which is big for so many people, not just us. It's GREAT.
 

Daffodil

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It's Norwegian, not Swedish, although they interview a Swede - Scandinavia can be like that sometimes, confusing, I know.

VG is one of our main tabloids, and this is just a side to a far bigger article on Saturday, but behind a paywall. Then we had the usual argument (it's not a real disease, lol) on Monday, and then today, Tuesday, there's another, an interview with a lady who got fused down to c7 and got her life back.

My mother sent me pictures of the whole thing as I can't get the actual paper, but somehow my brain isn't up for figuring out how to turn them the right way around. I can send them to someone by email.

But they asked a lot of people in addition to all the wrong ones, so that's good. This is, in fact, the most positive ME coverage I have seen in the tabloids ever. They're actually discussing whether Norway should buy a machine for standing MRI, which is big for so many people, not just us. It's GREAT.
WOW that is amazing.....it is unusual for this disease to get that kind of coverage. it is sad that after this long, there are still so many people who think it is psychological
 

winterschlaf

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Interesting article. Typical journalism, asking the wrong people. Here's a quote to raise your hackles::

"Professor Bratholm Wyller does not recommend neck surgery to ME patients until further scientific studies are conducted.

- I would strongly warn against giving such treatment before you have very good scientific documentation. Neck surgery is not without risk and should of course only be used when you are absolutely certain that the benefit is greater than the risk of side effects. There are far too many examples of undocumented treatment being given to ME patients - which have subsequently proven to have no positive effect.

He says that there are therapies with documented benefit in ME patients, namely cognitive behavioral therapy and graded activity adaptation.

- These therapies have little risk of side effects and can be recommended for all ME patients. Of course, that does not mean that everyone benefits equally, he says."

"Little risk of side effects" my patootie! :bang-head:
Ha! Yeah. Reading this part mildly squashed my morning yesterday.

I actually woke up having an internal argument with Prof Wyller (as proxy for many clinicians I have met, and some family members) again today.

More fool me for reading this while in a delicate frame of mind! We've still a long way to go.
 

Daffodil

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@winterschlaf can you imagine trying to deny the existence of CFS/ME for fear it will cost the govt billions in healthcare costs and disability payouts, for decades.....and then to hear that the probable treatment for it will be expensive neurosurgery??? lol not an easy pill to swallow for the deniers.
 

Daffodil

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hi all. has anyone had experience with sacro occipital technique? its some kind of chiropractic treatment. thanks