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

Daffodil

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Another thing I wanted to add is, I sometimes feel a tightness in my forehead, as if a band is squeezing the inside in that area. Maybe a feeling of lack of blood or something? This struck me as interesting because the surgeon said he thinks it is possible that my mid-cervical instability could be causing pressure on my frontal lobe
 

StarChild56

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What exactly did you use to acheive flexion and extension positions while supine? Dr Gilete's office sent me some pictures. It seems like they use some cloth and what looked like a bundle of paper, but I'm not completely sure what it was from the picture.
I'm sorry this response is so late. I have not been on in a long while.

So it probably won't even matter but I don't recall much. Just lifting my chin when told to, and pulling it down when told to...

Sorry to be both late & probably not helpful. It has now been well over a year since having had that MRI done.
 
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Another thing I wanted to add is, I sometimes feel a tightness in my forehead, as if a band is squeezing the inside in that area. Maybe a feeling of lack of blood or something? This struck me as interesting because the surgeon said he thinks it is possible that my mid-cervical instability could be causing pressure on my frontal lobe
I’m not sure if I should describe it as a tightness but I do have generalized facial pain/ache on the forehead, on the cheeks and around the mouth. It’s usually worse when the fatigue is on the higher side, which is about 30% of the time.
 
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I'm sorry this response is so late. I have not been on in a long while.

So it probably won't even matter but I don't recall much. Just lifting my chin when told to, and pulling it down when told to...

Sorry to be both late & probably not helpful. It has now been well over a year since having had that MRI done.
Hey no problem. The MRI technicians were already knowledgable on how to do this. They used some cushion thingies to support my head in those positions. I’ve sent my scans to Dr. Gilete.
 
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Hi there. There's obviously a lot to go through on this topic of CCI. Just wondered if anyone in the UK has been down this root and if so where did you start. I'm in Suffolk so around 70 miles from London. Any info much appreciated.
 

JenB

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I’ve started a thread on S4ME for discussion these conditions. The old frame was “Concerns about surgery.” I thought it could be good for people to actual, concrete experiences with diagnosis, nonsurgical treatment, surgery, recovery etc. Some forum members are neither on FB on PR and so may not have access to this perspective:

https://www.s4me.info/threads/neuro...disorders-your-experiences.12329/#post-217633

EDIT: this thread was original in their “connective tissue disorders” subforum but was moved to the “members only” forum so you will not be able to read it unless you are logged in.
 
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Try sending Dr. B your scans. If they show significant pathology it is possible he may allow a consult on that alone.

I sent him my scans and he replied within one hour. He said my scans aren't impressive enough on their own and I'd need to report positive result through traction to get in.
Hi @Bowser, I had a 3T supine MRI scan, and am interested in getting a second opinion from Dr. B. Could I ask you a few questions about the process?
(1) Did you need a referring provider? I believe one intake form asks for a referring provider's name.​
(2) Other than the MRI scans, did you release any other medical records to Dr. B (such as those showing an official CFS or ME diagnosis)?​
Thank you so much!
 
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Hi @Bowser, I had a 3T supine MRI scan, and am interested in getting a second opinion from Dr. B. Could I ask you a few questions about the process?
(1) Did you need a referring provider? I believe one intake form asks for a referring provider's name.​
(2) Other than the MRI scans, did you release any other medical records to Dr. B (such as those showing an official CFS or ME diagnosis)?​
Thank you so much!
Hello @emmers. No it was a very informal and brief correspondence over email. He gave me the instructions to book a formal appointment if I was able to gain a positive result via traction, which is a prerequisite for getting a consultation with him.

Additionally I sent the scans and received a short reply. If he looks at your scans informally over email it is only to deduce whether you fall into his clinic's parameters. He will most likely still require the positive traction result unless your scans show severe enough pathology for the appointment to be booked right away.