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

[Daffodil]

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]

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.

 

[Bowser]

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.

 

[Bowser]

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.

 

[StarChild56]

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.

That is good news indeed

 

[ruben]

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]

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.

 

[Waverunner]

I just wanted to let you know that Dr. Gilete has lots of patients right now, the number quadrupled during the last months. So when you send him MRI results it will take around 3 months to get a diagnosis. But quality is very important for him, so better this than quantity.

 

[emmers]

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!

 

[Bowser]

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.

 

[CantThink]

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.

I'm interested too. I'm in Essex.

I read this:

At present in the UK there is only one upright scanner facility suitable for diagnosing CCI which is based in London. Please click the link which will take you directly to the facilities website.
Click the link for upright MRI facility website
On:
https://zebralife.blog/what-is-craniocervical-instability/

I need to find out the cost of the MRI.

 

[winterschlaf]

I'm interested too. I'm in Essex.
I need to find out the cost of the MRI.

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.

Hi @ruben and @CantThink

I'm based in Scotland and am going through the evaluation process w Dr G right now.

Have been posting info on the process of obtaining the diagnostic scans here:

https://forums.phoenixrising.me/thr...d-nhs-funding-for-medserena-manchester.78361/

Hope it might be of some use to you.
W

 

[Bowser]

Can anyone recommend some good neck strengthening exercises that improve the situation and not further compromise the CCI situation? I seem to have developed some degree of neck pain where I had none before.

Jeff said on his website that range of motion exercises are not recommended since range of motion is the entire problem with CCI. So what are some strenghthening exercises I could do instead?

 

[Jyoti]

As to neck strengthening exercises, I was afraid to start anything on my own, without a PT to oversee. I know you have a fair amount of stuff going on in your neck @Bowser, right? Same here. And I remain concerned even now because precisely what is still to be determined. I have been doing exercises given me by my PT for about two months and while I do believe some muscles are stronger I am not better at all. In any way.

So.... I would be very cautious with what you do with your neck. Just me, but after instruction from a really good PT I am not at all certain I should be doing what she suggested. So little space, so many critical bits and bobs and the wrong move could pinch something you were desperately trying to release. However, if you are interested, @pattismith posted this link on another thread: https://treningogrehab.no/atlas-joint-instability-causes-consequences-solutions/ It is lengthy and meaty. A lot of anatomy and a number of videos demonstrating exercises this guy (a PT) recommends. I loved reading it--so much useful info. And the exercises were intriguing. It is clear he has some ideas about how to address cervical issues that are not the in mainstream. Which is probably good, given how helpful that has been to most of us.

Anyway--you can always take a look and make an assessment as to whether it feels worth a try for you.

 

[frozenborderline]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3751012/

 

[Murph]

Another high profile ME/CFS sufferer is going under the knife.

Julie Rehmeyer has announced she will get craniocervical fusion surgery.

https://twitter.com/i/web/status/1201981669936422912

Far as I can tell she's going with Dr Bolognese in New York.

"
At first, I didn't think this could have anything to do with me, since I had no overt neck symptoms. Plus, I only had really bad symptoms when I got exposed to mold -- then I'd get paralyzed. Didn't seem like that could have anything to do with my neck.

But I looked into it anyway. First, I asked my husband to give me traction during one of my paralysis episodes -- in other words, to pull on my head. The idea was that if I had craniocervical instability as Jen did, this would get my spinal column out of my brainstem and make me feel better. And, it turned out, traction ended my paralysis episode, instantly. Hmm...

Next I had an upright MRI, and I sent this imaging to an expert neurosurgeon. The imaging showed that indeed, my spinal cord is pushing into my brainstem. That's the picture shown here -- the angle drawn in is just under 135 degrees, which is considered pathological. The average such angle is around 150 degrees.

I tried various things over the summer and fall to address this, including stem cell injections into the ligaments of my neck, which theoretically could tighten them and solve the problem. But none of what I tried worked for me, and indeed, I continued to get worse. During the upright MRI, I had to tilt my head back and hold it in that position for five minutes, and ever since, tilting my head back will send me into a paralysis episode. And now, not only do I get paralyzed, I become unable to speak and have difficulty breathing. And at this point, many things can send me into an episode -- a mold exposure, my neck getting out of whack, loud sounds, or even just having two conversations going on around me at once.

So now I'm going to have fusion surgery, the same surgery Jen had... (more at link)"

 

[Jessrose21]

I got my CT scan and have the discs with images on it. Is there a way I can save the images on my computer in a file and email it to the neurosurgeon so I don't have to mail it? Thanks!!

 

[Daffodil]

I got my CT scan and have the discs with images on it. Is there a way I can save the images on my computer in a file and email it to the neurosurgeon so I don't have to mail it? Thanks!!

ya you can use dropbox

 

[Daffodil]

hi all.

I had alar, transverse, and accessory ligaments injected with stem cells 10 days ago. Yesterday and today, I noticed my head feeling just a little less "heavy". Don't want to say much else yet.

I have also decided to try and get the MRI with contrast in a few weeks rather than several months (as is the usual in Canada). If you read a previous post on my other thread, I mentioned that the 3T Supine MRI I had done just before this stem cell treatment showed a small nodule which they thought could be a "nerve sheath tumor" near C1. This was a little troubling because CFS/ME patients lack p53. I have also had a stem cell treatment in the area before.

I spoke with a stem cell researcher who advised me to get the imagining sooner rather than later, despite any possible affects the gadolinium dye could have on the stem cell treatment. My previous reasoning was that since I spent so much on the treatment, I should wait 5 months before I get the imaging because the prognosis is grim for malignant nerve sheath tumors anyway, even if caught early.

But now I have decided it is probably better to know soon...also, most stem cells, according to researchers, dont stick around more than a few weeks.........

And gadolinium dye shouldnt really do anything much....because they have been using it to try and tag stem cells in experiments. .....but the doc at the stem cell place felt that it was possible...so i dont know

I was thinking how much it would suck to start to finally feel better after 27 yrs only to find out i have terminal cancer

:-/ I know it is very unlikely but.....can't help sometimes expecting the worst after so many years of suffering, you know?

But it is accepted that stem cells can promote tumor growth....

Anyway, I should get the imaging done before I start to get carried away with worry. Maybe it is just a lymph node.

 

[Daffodil]

re: surgery. from images alone, i have tentatively been diagnosed with CCI and probable AAI by one surgeon and with just mid-cervical instability by another. Apparently, even just mid-cervical instability can cause these symptoms.

I was previously under the impression that the subjects in the Rowe paper all had CCJ issues and some kind of fusion but that is not the case.

A 3rd neurosurgeon also has my images but I have not contacted him yet.

Although I cannot afford surgeries of this sort at the moment, I think it is probably worthwhile to be assessed. I do have clear disc degeneration. There are no reliable stem cell treatment for this issue and replacements for multiple levels is very iffy.