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

[Daffodil]

@mattie wow good luck! i get my MRI done on the 16th.

i have really been thinking about this....26 yrs ago....the mono....the horrible neck pain.....maybe brain stem compression? .....the onset of the brain fog......compression of brain stem causing delayed gastric emptying...inflammation? and whatever else.....change in gut flora?......vomiting phase....diarrhea phase......leaky gut.....immune system depression.....omg.....could this unlikely scenario be it??? no no no dont get hopes up again!

 

[mattie]

@mattie wow good luck! i get my MRI done on the 16th.
...omg.....could this unlikely scenario be it??? no no no dont get hopes up again!

Good to hear you have the MRI coming up soon.
Could this be it? Yes this could be it. I really never expected the MRI to show a positive result. Just wanted to rule this one out.
Keeping hopes down until results have been analysed / confirmed by specialist.

I think it's time to keep track of this in a more structured way, so I've created a separate thread for this purpose:

https://forums.phoenixrising.me/index.php?threads/cci-aai-mri-treatment-outcomes.62720/

 

[Daffodil]

Good to hear you have the MRI coming up soon.
Could this be it? Yes this could be it. I really never expected the MRI to show a positive result. Just wanted to rule this one out.
Keeping hopes down until results have been analysed / confirmed by specialist.

I think it's time to keep track of this in a more structured way, so I've created a separate thread for this purpose:

https://forums.phoenixrising.me/index.php?threads/cci-aai-mri-treatment-outcomes.62720/

but....even if you have CCI....you have to have some pressure on the brain stem or something....for this to be the cause of the illness, right?

 

[Daffodil]

@mattie i looked at the other thread: good idea!

dr. henderson, another specialist, doesnt do the same tests i dont think. he does CT's (and maybe MRI?) and i think some kind of X-ray called digital motion Xray.....or something

 

[mattie]

@mattie dr. henderson, another specialist, doesnt do the same tests i dont think. he does CT's (and maybe MRI?) and i think some kind of X-ray called digital motion Xray.....or something

Correct. Also 3T supine MRI is used (dr.Bolognese). Updated text in other thread.

but....even if you have CCI....you have to have some pressure on the brain stem or something....for this to be the cause of the illness, right?

Craniocervical instability (CCI),may lead to deformation or compression of the brainstem, upper spinal cord, and cerebellum.

 

[frozenborderline]

I had my upright mri. Radiologist told me that I didn’t move too much and images weren’t blurry. Will be sending CDs to all four neurosurgeons. Have looked at images a little but don’t know what I’m looking for. Praying I don’t have to redo them. I handled it okay with wheelchair and saline pre-trip , plus a lot of Ativan (which helps with vertigo too).

 

[percyval577]

Have looked at images a little but don’t know what I’m looking for.

I too looked at mine and couldn´t detect anything intersting, maybe these white clouds?
Then I handled the images to a neurologists, she looked at me - not at them! - and said: "Didn´t they handle you a descirption over?"

 

[bjl218]

That sounds like a great combination @Wayne. I tried undiluted DMSO which helped a bit, but was way too harsh on my skin. My neck pain is definitely a bit better today so that's encouraging. I'm going to try your formulation to see what happens.

I first dilute 100% DMSO: -- 2 parts DMSO to 1 part purified water (creates a warming sensation for a few minutes). I then mix this diluted DMSO mixture with magnesium oil (1:1). I think both the DMSO and magnesium oil are really good for all kinds of muscle aches and pains, and the inflammation that generally acompanies those pains. I believe that same combo has been responsible for some improvements in my POTS / OI, probably mostly from relieving inflammation in my neck,and my cranial nerves as well.

 

[toyfoof]

I have my official results back from Dr Bolognese: NO CCI. They reviewed my case and I do not meet their practice's criteria. So there you go, another example of them not just welcoming anyone in.

This search has been very fruitful for me, though. While I don't have CCI (or Chiari), I do have several very serious neck issues, including a fracture on C6. I am now going to be receiving help for these issues, and I am very glad to know what is happening in my body and have a plan to start correcting it. And these issues still could be causing many of my ME problems (especially pain) so I have some hope for some relief.

I detailed my MRI results in my thread here if anyone is interested in reading more details:

Migraines, MRIs, and mutts: my ME/CFS experiences

 

[frozenborderline]

What I’m most nervous about is not CCI not showing up but getting a false negative, because of the upright mri images being too blurry or something. I have heard from one person who said Bolognese initially said he didn’t see CCI and her upright was too blurry and then she had to do a supine. I just want to very thoroughly rule this out.

 

[frozenborderline]

I also wish that more of the neurosurgeons besides gilete and Bolognese did remote consultations.

 

[toyfoof]

What I’m most nervous about is not CCI not showing up but getting a false negative, because of the upright mri images being too blurry or something. I have heard from one person who said Bolognese initially said he didn’t see CCI and her upright was too blurry and then she had to do a supine. I just want to very thoroughly rule this out.

I had a supine 3T MRI, which is what Dr. B requested, and the tech told me it turned out very well (well enough for the doctor who wrote the report to write some very detailed things). So I'm not so concerned with a false negative, myself. Dr. B did tell me, when I emailed him before my MRI asking exactly what to get, that if he felt he needed more scans, he would order them himself. So hopefully if your image is not enough for him, he'll do what he needs to to give you a very well-informed answer.

 

[frozenborderline]

I had a supine 3T MRI, which is what Dr. B requested, and the tech told me it turned out very well (well enough for the doctor who wrote the report to write some very detailed things). So I'm not so concerned with a false negative, myself. Dr. B did tell me, when I emailed him before my MRI asking exactly what to get, that if he felt he needed more scans, he would order them himself. So hopefully if your image is not enough for him, he'll do what he needs to to give you a very well-informed answer.

Hopefully yes! I did talk to one woman who had a sort of false negative with a blurry upright mri that the tech told her was fine. Although now that I think of it I’m not sure whether Bolognese told her initially she didn’t hae cci or just that the images were too blurry. Now has had supine mri that shows probably cci

 

[brando]

Anyone who wants opinions on scans - request to join the Beyond The Measurement Facebook group.

I sent friend requests and messages to every moderator until one messaged me back and asked me some questions - now I’m in and it’s been invaluable.

 

[Gingergrrl]

i get my MRI done on the 16th.

Good luck w/your MRI @Daffodil and it is coming up soon! Please keep us posted.

I think it's time to keep track of this in a more structured way, so I've created a separate thread for this purpose:

I agree and I am glad that you started that thread @mattie. I will not post in it (to keep it for those who definitively have this diagnosis) but I will be following it for sure. I now believe that my neck injury and pain was connected to my overall illness vs. it being a completely separate and unrelated issue (even though I do not have CCI).

I had my upright mri. Radiologist told me that I didn’t move too much and images weren’t blurry. Will be sending CDs to all four neurosurgeons.

That is great @debored13 that you will be sending the images to all four neurosurgeons and I am looking forward to hearing the results. Have you already posted them in another thread and I missed it? It is so hard to keep track of all the threads on this topic!

Then I handled the images to a neurologists, she looked at me - not at them! - and said: "Didn´t they handle you a descirption over?"

I totally relate to this and thought it would be very easy to get both the written report and the images of my current cervical MRI (from Dec 2018) and my prior MRI from July 2010 (as a comparison). It ended up being much more challenging that expected and they mailed my doctor the written report without the images and sent ME the images. I have no way to view the CD and even if I did, it wouldn't mean anything to me! I now have everything and prepared it to mail to my doctor as soon as I can get to the post office which will hopefully be tomorrow.

I detailed my MRI results in my thread here if anyone is interested in reading more details:

Thank you so much for that detailed update and I read it several days ago but now cannot remember if I replied! I am planning to check (and will definitely reply there if I haven't already) and also to your PM.

 

[frozenborderline]

Good luck w/your MRI @Daffodil and it is coming up soon! Please keep us posted.



I agree and I am glad that you started that thread @mattie. I will not post in it (to keep it for those who definitively have this diagnosis) but I will be following it for sure. I now believe that my neck injury and pain was connected to my overall illness vs. it being a completely separate and unrelated issue (even though I do not have CCI).



That is great @debored13 that you will be sending the images to all four neurosurgeons and I am looking forward to hearing the results. Have you already posted them in another thread and I missed it? It is so hard to keep track of all the threads on this topic!



I totally relate to this and thought it would be very easy to get both the written report and the images of my current cervical MRI (from Dec 2018) and my prior MRI from July 2010 (as a comparison). It ended up being much more challenging that expected and they mailed my doctor the written report without the images and sent ME the images. I have no way to view the CD and even if I did, it wouldn't mean anything to me! I now have everything and prepared it to mail to my doctor as soon as I can get to the post office which will hopefully be tomorrow.



Thank you so much for that detailed update and I read it several days ago but now cannot remember if I replied! I am planning to check (and will definitely reply there if I haven't already) and also to your PM.

I actually will only be sending mine to one neurosurgeon atm since only two do remote consults and it’s costly. I am fairly sure I have cci though so I will send the results to other neurosurgeons if bolognede thinks I don’t have it, for a second opinion.

 

[frozenborderline]

Here are my scans if anyone wants to take a look https://drive.google.com/drive/folders/1MloR-NB_09ojoD2sW9_tw5z4dFqbYf_l?usp=sharing
I would post in the beyond the measurement group but can not get in, not can my sister, they have repeatedly denied her requests. It’s a pain in the ass

 

[mattie]

but can not get in, not can my sister, they have repeatedly denied her requests. It’s a pain in the ass

Same here. Contacted all moderators multiple times. No response at all.

 

[frozenborderline]

Same here. Contacted all moderators multiple times. No response at all.

Ugh we should form a group “people who have been denied access to ‘beyond the measurement’ “

 

[frozenborderline]

https://drive.google.com/open?id=1dkZEXxOwM_1KLZscDHqmKeKmal-1g6R3
https://drive.google.com/open?id=1OKVbKOAf7MM4Xu6_NAYAPWJy5Du9cd2l
https://drive.google.com/open?id=1kJ8jz1jBv2ZDP4JRhZYu6pA5Dcc24lRD
https://drive.google.com/open?id=18ZE1vK61SkhGwDQ4qFW9bYABmTDcpIek

https://drive.google.com/open?id=13kR0TnbVbAsST-O3YIK8TJaENZoyNvku

Here the images all are as jpgs, in case you don’t have a windows computer and want to look at them.

If bolognese does not see cci based on these scans I will be seeking more imaging and a second opinion, for sure. Perhaps digital motion x rays if I can figure out where to get them, and a rotational cat