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

[Mrs Stellar]

This all looks very interesting. Is the theory that CCI would only be for people who have severe ME and a diagnosis of POTS?

I definitely think that there is something going on with my spine, even if it isn't CCI. I'm in Canada so much harder to get access to testing that is not the norm.

 

[ScottTriGuy]

I'm in Canada so much harder to get access to testing that is not the norm.

Where in Canada?

I'm getting mine done at St Mike's, Toronto.

But I know there is a stand up MRI in BC.

 

[Mrs Stellar]

Where in Canada?

I'm getting mine done at St Mike's, Toronto.

But I know there is a stand up MRI in BC.

Good to know! I'm just outside of Vancouver so likely close to one. Are you doing yours privately or through OHIP?

I'm new to actually pursuing medical treatments for my ME. For many years I just dealt with it and found a rhythm but I had a major crash a while back and need some major intervention beyond 'pace yourself'.

Also, I think I follow you on twitter @ScottTriGuy- thanks for all your advocacy work!

 

[jeff_w]

This all looks very interesting. Is the theory that CCI would only be for people who have severe ME and a diagnosis of POTS?

I don't think CCI exists only with severe ME and POTS. I think it can be present in mild ME without POTS.

I had mild ME without POTS for 2 years before developing severe ME with POTS. As you know, my CCI surgery gave me my life back. So it's clear to me now, looking back on my own experience, that my mild ME without POTS was due to CCI. I simply had no overt neck symptoms then, which is actually quite common in the early stages of CCI.

 

[Mrs Stellar]

I don't think CCI exists only with severe ME and POTS. I think it can be present in mild ME without POTS.

I had mild ME without POTS for 2 years before developing severe ME with POTS. As you know, my CCI surgery gave me my life back. So it's clear to me now, looking back, that my mild ME without POTS was due to CCI. I simply had no overt neck symptoms then, which is actually quite common in the early stages of CCI.

Thanks for your info! I do find some of this quite compelling. I don’t know if it is CCI for me but I do know that I have symptoms obviously directly tied to my spinal cord, including a full body spasm that happens a few times a day (at one point was every couple seconds). This is definitely worth investigating for me.

Thank you for sharing so much of your own health story.

 

[ScottTriGuy]

Are you doing yours privately or through OHIP?

Via OHIP, but I went for the MRI last week and in spite of my GP ordering flexion, extension, rotational, the radiologist left instructions for the technician to do only a flexion view.

I had to call the head of the MRI dept who then had the radiologist call me and she was pretty adamant they could not do rotational (because of the 'coil') and she wanted to do a CT rotational, but I kept saying that the 4 leading neurosurgeons wanted the MRI - she finally acquiesced and professed not to be confident that the rotational images would be clear.

They will also take a look at my pituitary again as 7 or so years ago I had an empty sella (meaning the spinal fluid has pushed into the pituitary gland flattening it so it looks 'empty').

I have mentioned my empty sella numerous times to different physicians as a potential factor in my ME symptoms but it gets dismissed or met with a shrug.

 

[Revel]

CCI in the UK news this weekend. This lady is looking to raise funds for surgery that the NHS appears to be reluctant to provide:

https://www.dailymail.co.uk/news/ar...living-knife-edge-rare-genetic-condition.html

 

[MEPatient345]

Am just in process of looking into the options for Medserena upright imaging. Gilete’s office prefer scans from London center, does anyone know why? Are the machines in Germany and Manchester not as good?
They say if you don’t go to London, they want a rotational 3D CT as well as upright MRIs.

While researching, found this about Dr Francis White, just FYI.
https://www.scotsman.com/news/radiologist-is-cleared-of-missing-patients-cancer-1-631453

 

[Gingergrrl]

Yes, soon hopefully, I almost have the website ready then I can start releasing the podcast interviews. I doubt I will have the time / energy to type out the interviews though, so audio / video only.

This sounds great and I am looking forward to listening to your podcast once it goes live!

CCI in the UK news this weekend. This lady is looking to raise funds for surgery that the NHS appears to be reluctant to provide:

Thank you for sharing this and it sounds like (from the article) that she had years of misdiagnosis but now the NHS confirms that she has EDS and CCI but will still not approve the surgery? She sounds like a good story for Scott's podcast!

 

[mattie]

Am just in process of looking into the options for Medserena upright imaging. Gilete’s office prefer scans from London center, does anyone know why? Are the machines in Germany and Manchester not as good?
They say if you don’t go to London, they want a rotational 3D CT as well as upright MRIs.

While researching, found this about Dr Francis White, just FYI.
https://www.scotsman.com/news/radiologist-is-cleared-of-missing-patients-cancer-1-631453

Scroll down to bottom of this page:
https://www.medserena.com
All german clinics are part of Medserena AG.
The machines are identical to London. Manchester is also part of Medserena. Again same machine.
Dr. Gilete diagnosed me with scan from Hannover.

 

[MEPatient345]

Hi Mattie, ok, I don’t know why they told me they prefer London, and that if I didn’t go to London I would need an additional 3D CT.. did you get a 3D CT? I will ask them to clarify too, thanks. I would prefer to travel to a smaller city in Germany as London is so hectic and polluted. But don’t want to have to do a CT.

 

[talkinghead]

@Silencio I'm in the process of getting the MRI and they didn't tell me anything about 3D CT if I don't go to London. Can you please update this thread after you get the clarification from Gilete's office?

 

[frozenborderline]

Mold can also raise mmp-9 which can degrade collagen

 

[mattie]

Hi Mattie, ok, I don’t know why they told me they prefer London, and that if I didn’t go to London I would need an additional 3D CT.. did you get a 3D CT? I will ask them to clarify too, thanks. I would prefer to travel to a smaller city in Germany as London is so hectic and polluted. But don’t want to have to do a CT.

You do not need the CT for diagnosis. Amy told me they had some problems with other clinics than London. But all Medserena clinics are capable of producing the correct MRI’s. Just be very clear that you need flexion, extension, rotational( left and right) and neutral.

 

[Wayne]

I recall somebody posting a link to a vdeo neck exercises that I've been looking for (about a month ago). I'm not certain it was on this thread, but I think it was. It was one of those things I was definitely going to check out, but as happens too often, I spaced it out for too long, and then I could no longer find the link. If this video/link sounds familiar to anybody, and think you may know what I'm referrring to, could you please steer me in the right direction? -- Thanks!

 

[Strawberry]

Alas, I don't know yet, as I haven't dug into researching supplementation for collagen comprehensively. If it's useful to you or others, I'm happy to check back in and share sources/resources/opinions after I do.

Please do!

 

[Mrs Stellar]

Has anyone who is interested in this theory but waiting to get their MRI, bought a cervical collar to see if it helps? Sorry if this is earlier in the thread but I couldn't find it. I don't currently have severe symptoms like Jeff or Jen did when they got their diagnosis so I'm wondering what I would be looking for in terms of relief when I put on the collar. Vice versa, did anyone experience any unpleasant reactions to positioning the neck in a new way, such as headaches or nausea?

 

[Strawberry]

@Mrs Stellar I was going to buy a collar, but had a bad experience with very mild traction and decided I am not doing any more until I get the MRI and diagnosis. Unfortunately it will be a ways off until I can get my MRI. Thankfully I am just mildly affected. But for the record, the traction (just mild pulling (if it can even be called pulling) by a massage therapist for a few minutes) and I had headaches and far more issues than normal for 3 or so weeks.

 

[Mrs Stellar]

@Mrs Stellar I was going to buy a collar, but had a bad experience with very mild traction and decided I am not doing any more until I get the MRI and diagnosis. Unfortunately it will be a ways off until I can get my MRI. Thankfully I am just mildly affected. But for the record, the traction (just mild pulling (if it can even be called pulling) by a massage therapist for a few minutes) and I had headaches and far more issues than normal for 3 or so weeks.

Good to know @Strawberry! I tried on a collar briefly and immediately felt a little off but I'm so sensitive to changes that I didn't know if it was an adjustment thing, making things worse or just entirely unrelated. It is nice to be able to pursue this as a line of inquiry even if I can't find small fixes in the meantime.

 

[Strawberry]

Good to know @Strawberry! I tried on a collar briefly and immediately felt a little off but I'm so sensitive to changes that I didn't know if it was an adjustment thing, making things worse or just entirely unrelated. It is nice to be able to pursue this as a line of inquiry even if I can't find small fixes in the meantime.

It would be nice to get some relief, but I am not risking it any more. So unless a dr says to do it I'm not touching it!