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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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

Daffodil

Senior Member
Messages
5,873
Hi,
I have good news! Well, I think it’s good news. I sent in my supine 3T MRI scan to Dr B. However I haven’t been able to try traction since I live in the U.K. (have written a post explaining a few posts back).

Your MRI imaging is quite normal in appearance.

Try cervical traction with your local physical therapist.

If you obtain dramatically positive results with the traction, then email me back about your feedback, and we will select you for a visit or a videoconference.

If the traction does not provide dramatically positive results, then proceeding with the next steps is not indicated.”

My question is, if the MRI looks normal, why would I try traction? Its made me confused and panicky :/ (i have severe anxiety and ocd so.. yeah).

Edit: but I’m so happy my MRI results are normal. As I’ve been very mentally unwell from this as well as very physically unwell (I have severe M.E) from the stress. Let alone the fact I can’t travel to America now or the fact I don’t have any money for surgery either!! I’ve got a lot of other issues anyway which I want to address. Copied from another thread where I posted: I have severe M.E btw, and I don’t have EDS. I don’t have normal PoTS, I have the hyperadregenic type if I have it. No hypermobility except the absolute slightest in my elbows which may not even be enough to say elbow hypermobility. I was however born with nervous system “fight or flight problems”, autism which requires a lot of daily reassurance (which wasn’t diagnosed until I was 27) and severe sensory processing difficulties which I never had help for. Just Incase anyone’s interested. :) )
the doctor probably feels that there still could be craniocervical issues despite normal seeming MRI. perhaps that is why some doctors want a DMX, Upright MRI, etc etc:)
 

JES

Senior Member
Messages
1,318
Hi,
I have good news! Well, I think it’s good news. I sent in my supine 3T MRI scan to Dr B. However I haven’t been able to try traction since I live in the U.K. (have written a post explaining a few posts back).

One option is to buy a traction device, either a neck collar type or one mounted on a door with a counterweight or gear mechanism, such as this one sold in UK. I tested several traction methods briefly a year ago. The neck collar didn't apply enough traction to be much useful IMO, but the door mounted device can provide quite a bit traction once you get it set up correctly.
 
Messages
30
I had severe PEM for years, the classic ME/CFS differentiating type. Sometimes, even while lying flat, just watching a TV screen would cause severe PEM. I also had EBV (positive IGM and PCR) as well as low NK Cell function. At my worst, I couldn't speak, due to exhaustion. Overall, I've had severe POTS, MCAS, and CFS/ME. I've been hospitalized multiple times for MCAS.

It turns out that I have cranial settling, with my skull sinking downward onto my spine, causing brain stem compression. This sinking downward isn't outwardly visible, so you couldn't tell from just looking at me. (This sinking downward also is not a Chiari Malformation, but it is similar, as it can result in cerebral spinal fluid problems as well as autonomic nervous system issues.)

I needed an upright flexion-extension MRI to find the problem, and I then needed to send the MRI image to a knowledgeable neurosurgeon, as the radiology report was negative. The MRI revealed to the neurosurgeon that my skull has been sinking down into my spine, due to lax ligaments from Ehlers-Danlos Syndrome (EDS). The result is brain stem compression. My spine is protruding into my skull, touching my brain stem and compressing it. This is not supposed to happen! This causes many neurological problems, such as in fatigue (PEM-type), POTS, etc.

As for the immunological signatures unique to CFS/ME, it could be that neurological compromise results in specific immune disruption. Our nervous system and immune system are intertwined. A deficit in one system can result in the other system becoming abnormal.

At any rate, my craniocervical problem is entirely correctable with neurosurgery. I'm scheduled for surgery at the end of the month. But for now, I'm in a halo vest that's keeping my head from sinking onto my spine.

In the halo, I no longer have POTS. I no longer have PEM. My ME/CFS might have been, all along, a neurosurgical/structural problem.

Since my severe onset in 2014, I had angrily wished that this disease were curable with surgery or chemo. Well, it now seems like it is. At least the type that I have.

And how many others are just like me, but undetected?
Hello,
I just want to ask you were had your MRI done (which clinic). I understood that there is a private clinic in London.
Thank you and wish you all the best.
 

frozenborderline

Senior Member
Messages
4,405
i've had a lot of imaging so i guess i may as well look into going to colorado sooner rather than later. i assume most people go to the regenexx people. the woman i met on FB didnt even get stem cells..she got the cheaper PRP locally and was still very pleased with the results. and hers didnt even sound like a very mild case either. she also swore by osteopathic manipulations.
I am also looking at prolotherapy and stem cells even though they would ne more expensive than the surgery for me. One woman w cci has had very good results with stem cells. But I don’t know why these are talked about as necessarily lower risk than surgery. It seems like there’s less published on the benefits and risks of prolotherapy and it’s considered alternative medicine, which isn’t necessarily bad but may be less vetted than surgery. The stem cell injections have not even bad one clinical trial yet and the technique is new, they used to have to do these alar and transverse ligament injections through the back of the throat!! Now they have figured out some way to do them through the back of the neck but there is still considerable risk and pain involved in this process and stem cells in general is a fairly unregulated field, although the regenexx people seem to be doing a specific types of targeted use of stem cells that is less scammy than the use of them intravenously. Also I don’t think they use anesthesia for this procedure. I personally don’t even know if id have the stomach For it even though it carries some benefits over surgery, like range of motion and the fact that if it’s works it’s not having an irreversible hunk of metal in you and is preferable
 

Daffodil

Senior Member
Messages
5,873
@debored13 i did speak to a woman who said dr. B said surgery was very much recommended for her but she still refused it and went for prolotherapy. she said she attained i think 90% improvement in her symptoms. if i remember correctly.

none of the people i communicated with had a CFS Dx though....i think they had some kind of EDS or hypermobility....but they had a lot of neuro symptoms such as headaches, pain, seizures, etc

i am not too concerned with the pain or the possible side effects because i have no other choice other than to live the way i am now. it is true that it is new though....but as long as i am not the first one eh lol
 

frozenborderline

Senior Member
Messages
4,405
so I have been reading some stuff and it appears that I might have to abandon the ides of surgery. If we take out a loan and I get surgery done, there a large probability I will need revisions or more surgery on adjacent joints, which there is no way I will be able to afford. One person needed additional surgery in as little as 6 weeks!
i don’t think anyone should be going fully off anecdotes whether positive or negative, but it seems true that many people do need subsequent surgeries. However, part of that seems due to EDS impairing healing and creating global issues w collagen. I’m not sure thid is As much of an issue in people that have cci but not EDS. It’s definitely a concern in my mind though. This is why I wish that there was more research into cci and ME/CFS
I might have to just hope that prolotherapy might help....I just don't know.
My concern w prolotherapy , especially as opposed to stem cells or surgery, is that it’s theoretically supposed to help by using the patients immune system to heal, by prodding it with damage. IT seemsthat in many me patients the immune system is not functioning properly and healing Is impaired.
 

frozenborderline

Senior Member
Messages
4,405
i am not too concerned with the pain or the possible side effects because i have no other choice other than to live the way i am now. it is true that it is new though....but as long as i am not the first one eh lol
You mentioned a ton of brain inflammation/brain fog, and there’s a theory that mcas can Be the cause of collagen issues. Have you had treatment or testing for mcas, and also hows your home environment?
 

jeff_w

Senior Member
Messages
558
Hi @Daffodil -

so I have been reading some stuff and it appears that I might have to abandon the ides of surgery. If we take out a loan and I get surgery done, there a large probability I will need revisions or more surgery on adjacent joints, which there is no way I will be able to afford. One person needed additional surgery in as little as 6 weeks!

I know the person you're referencing, who needed additional surgery after 6 weeks. He's a teenage boy with Klippel Fiel Syndrome (now in his early 20's). His circumstances are unique. He didn't have ME or EDS.

I hear your concern though. Some people will need additional surgeries, while others won't. A lot of it depends on how your other spinal joints are holding up pre-fusion. Some people have severe hypermobility all throughout their spines. Others have problems localized primarily in the craniocervical junction.

I read that you're going to be trying stem cells for your CCI? I'd love to know how that goes! Wishing you all the best!
 

Daffodil

Senior Member
Messages
5,873
@jeff_w thanks:) i didnt know that that person had that syndrome. still, it just seems so common for people to need some kind of procedures again and there would be no way for me to get any follow-up work done. Furthermore, I would be getting my entire neck fused...God knows what could happen. I also have back issues already..herniated discs etc. Some people in that group have their entire spines fused!
xo
 

Daffodil

Senior Member
Messages
5,873
You mentioned a ton of brain inflammation/brain fog, and there’s a theory that mcas can Be the cause of collagen issues. Have you had treatment or testing for mcas, and also hows your home environment?
unfortunately, i have never looked into MCAS although I hear about it all the time online. I dont even know what it is. how would this is related to my home environment?
 

Daffodil

Senior Member
Messages
5,873
i don’t think anyone should be going fully off anecdotes whether positive or negative, but it seems true that many people do need subsequent surgeries. However, part of that seems due to EDS impairing healing and creating global issues w collagen. I’m not sure thid is As much of an issue in people that have cci but not EDS. It’s definitely a concern in my mind though. This is why I wish that there was more research into cci and ME/CFS

My concern w prolotherapy , especially as opposed to stem cells or surgery, is that it’s theoretically supposed to help by using the patients immune system to heal, by prodding it with damage. IT seemsthat in many me patients the immune system is not functioning properly and healing Is impaired.
yes, i have that concern too. i also wonder how my being on antibiotics and anti inflammatories might impact healing. i guess i will find out!
 
Messages
30
Could someone recomande which MRI center from London is best Medserena or Upright MRI London. My sister would need this type of MRI and I don't which center to choose.
Do you know how much time it takes until the appointment?

Thank you and wish you all the best.
 
Messages
30
I found on internet that there are two MRI center, they have two different site pages.
But I think Medserena would be the right one from the description ( they write on their web site that they do the flexion-extension MRI).
I will try to contact them see how long it takes to get your appointment.
 

frozenborderline

Senior Member
Messages
4,405
e. I dont even know what it is. how would this is related to my home environment
Mast cell activation syndrome is an immune condition where your mast cells can become activated by a number of triggers without having any kind of fixed IgE allergy, and they release inflammatory mediators, causing everything from brain fog to anaphylaxis to food intolerances. How it relates to your home environment is that you may have mold or other similar stuff in your home environment that could cause this inflammation and brain fog.