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

Daffodil

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Halo is invasive Bc it involves screwing something into your head. Invasive cervical traction in a hospital would use a device like that but not wearable
oooh. so you could only get that after surgery then? is there any way i could try a halo device now?

i bought a rigid collar but it says your arms have to be down and a medical professional has to put it on you....so it is just sitting there cuz i dont know whom to ask to put it on me

i tried a soft collar my chiro wanted me to wear but it does nothing
 

Diwi9

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oooh. so you could only get that after surgery then? is there any way i could try a halo device now?

i bought a rigid collar but it says your arms have to be down and a medical professional has to put it on you....so it is just sitting there cuz i dont know whom to ask to put it on me

i tried a soft collar my chiro wanted me to wear but it does nothing
It's probably safer to have your collar evaluated, but when I brought mine into the PT, she was totally fine with how I had it adjusted. I can't speak for your situation, but for me, it's a neutral position and not putting the collar on too tight, which can constrict arteries. That said, I still have a difficult time wearing it for more than 30 minutes straight. When I need it, I wear it, then take a break, and put it back on. I just can't get comfortable wearing it unless I'm in a seated position.
 

Daffodil

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It's probably safer to have your collar evaluated, but when I brought mine into the PT, she was totally fine with how I had it adjusted. I can't speak for your situation, but for me, it's a neutral position and not putting the collar on too tight, which can constrict arteries. That said, I still have a difficult time wearing it for more than 30 minutes straight. When I need it, I wear it, then take a break, and put it back on. I just can't get comfortable wearing it unless I'm in a seated position.
Thanks Diwi9. Is it helping your CFS symptoms at all?
I understand you arent supposed to wear it too long or the neck muscles weaken..
Daff
 

Daffodil

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I wanted to report that I have been to the chiropractor about 5 times now and have been trying atlas orthogonal. I noticed something slightly interesting the first time but did not feel better later on. After the 4th time, I felt worse. So the last visit, he did another x-ray and determined that we needed to change the angle of the machine....and did another treatment.

When I woke up the next day, the inflammation/swelling/blockage in my sinuses, which I have had for most of the disease, started receding. It has done this before but it never lasts long; this time, it lasted all day (yesterday) and the inflammation is significantly less today too.

My head may be just a tiny tiny bit clearer but hard to say.

Strangely, I find I need more sleep due to this treatment.

xo
 

Fogbuster

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https://www.aecc.ac.uk/patients/treatment-and-services/open-upright-mri-scans/

What do you guys think of this place to get an MRI? I just called them up and they said that I wouldn't actually be upright during the scan even though its advertised as an upright MRI....but apparently I'd still be able to do the flexion, extension and neutral position. Does this sound right, or will it affect the results compared to a normal upright MRI scanner? To get the best scan coverage possible of the upper cervical area, surely it would be wise to pay for both brain and cervical spine areas to be scanned to look for Chiari and CCI/AAI, instead of just having the cervical area scanned? Thanks

Open MRI scanner costs

The following scans are available at AECC University College's Bournemouth Open Upright MRI.

  • Lumbar spine
  • Cervical spine
  • Thoracic spine
  • Shoulders
  • Elbows
  • Wrist and hand
  • Knees
  • Foot and ankle
  • Brain

The open upright scanner service is a self-pay service. This means that the patient pays before their scan. We are happy to accept insured patients where funding has been previously arranged. Please note there will be an administration fee, if we need to share information.

There is a fixed rate for open upright MRI scans.
Each part costs: £285.00
 

Silencio

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If you plan to send your images to Dr. Gilete in Barcelona, their direction is to not use one of these not fully upright scanners. They want fully upright images, and they say that the only ones they trust are Medserena in Manchester and London. They quoted me two different prices for the same package (Craniocervical Junction Syndrome (CCS) Package). 1300GBP and 1395. I haven’t scheduled so not sure which price was correct.
 

Fogbuster

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If you plan to send your images to Dr. Gilete in Barcelona, their direction is to not use one of these not fully upright scanners. They want fully upright images, and they say that the only ones they trust are Medserena in Manchester and London. They quoted me two different prices for the same package (Craniocervical Junction Syndrome (CCS) Package). 1300GBP and 1395. I haven’t scheduled so not sure which price was correct.
Thankyou. The difference in price is quite huge, but its clear from the email I just received from Medserena, that they're a much more professional place to get the scan.
 
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Daffodil

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the more I think about this, the more this is making sense. when I got sick, the brain fog was the first horrible symptom...then fatigue... after a few months, the nausea and vomiting, then diarrhea...then gradually immune system problems...more inflammation....it was a gradual progression and this totally fits with what compression in the brain stem would cause over time. I don't want to get too hyped up about this, but ...omg. can you imagine if a chiropractor an hour away from me can help me so much, when I have spent what my mother spent her entire life saving, crawling all around world, country to country?? I wouldn't know whether to laugh or cry!

something tells me that atlas orthogonal will not be all that I will need, though....
 
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LJS

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This is so fascinating. I have been slowly reading through many of the posts in this thread, it has taken days. All my symptoms came on a few days after getting whiplash and the flu in short succession. I have had CFS or a CFS like illness for 11 years now. I always thought the whiplash was coincidental after I did PT with no help and a MRI of my neck didn’t show anything early on. I have constant dizziness, pressure headaches, tinnitus, brain fog, tightness in my neck, and am always holding my head up with my hand when sitting.


I have an appointment on Thursday with my CFS doc that I am going to ask to order the MRI. @jeff_w It would be a huge help if you could help me clear up a few questions.

1) I am a bit confused with just needing a supine 3T MRI to diagnose CCI, how does the doctor get all the angle measurements without flexion and extension?

2) Can you do a supine 3T with flexion and extension?

3) Your website says the order should say Upright MRIs with flexion, extension, and rotational views. Does the doctor need to specify MRI of skull and neck or is that just implied?

4) Does the MRI prescription need to request an evaluation for anything for insurance to pay for it? Every MRI script I have had says MRI of X to evaluate for X

5) In earlier posts you said you did something wrong in your first MRI and had to redo it, what did you do wrong on your MRI?

6) There is a local spine and neurosurgery clinic that has a upright MRI but I am unsure if their doctors have to order the test. Is there an easy way online to lookup where upright MRIs are located?
 

Daffodil

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@LJS i am not jeff but i can answer a few things i learned from jeff

dr. bolognese requires a 3T supine MRI with flexion and extension, which can be done

dr. gilete in spain requires an upright MRI of the cervical spine with flexion, extension, and rotation....and MRI of the craniocervical junction. they told me at the MRI place that that counts as 2 MRI's

your doctor can put anything under indication: neck pain, whiplash, etc etc, for your insurance

jeff had to re-do his MRI because he didnt extend and flex all the way...so you should bend your neck as far as you can.

you can google "upright MRI near me" and that will usually work.

good luck!
EDIT: dr. gilete also wants scoliogram and DMX
 
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Daffodil

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update: i feel as though my neck went back to the way it was before the last atlas orthogonal treatment. in fact, I am sure of it...how does this work if it keeps going back?

i have read some forums where others also say that it helps but it keeps reverting to the prior position.
xo
 

GypsyGirl

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@LJS Do you know which neurosurgeon you want to see yet? Because they sometimes have slightly different preferences, that may help you choose between specific imaging requests. I think they all need full cervical spine and skull because there are reference points on the skull used in the measurements to check for instability. Office staff at a neurosurgeon's should be able to tell you the doctor's preferences. I've never found a single source to direct to upright MRIs, only google and time.

update: i feel as though my neck went back to the way it was before the last atlas orthogonal treatment. in fact, I am sure of it...how does this work if it keeps going back?

i have read some forums where others also say that it helps but it keeps reverting to the prior position.
xo
Alas, I've read about this too and I'm sorry to hear it. Have you been strengthening the area where you're receiving adjustments?
 

Daffodil

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@GypsyGirl no, he didnt tell me to do that...but he did tell me to wear a soft collar when i am chopping/cooking or travelling and i have been forgetting that

he is making me use a higher and harder pillow than i am used to and although he told me in which position i should sleep, i go back to my old ways while asleep

at least this treatment is showing me that the cervical spine could really be a problem if not THE problem for me..which is huge ..

xo
 

Strawberry

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update: i feel as though my neck went back to the way it was before the last atlas orthogonal treatment. in fact, I am sure of it...how does this work if it keeps going back?

i have read some forums where others also say that it helps but it keeps reverting to the prior position.
xo
This also was my issue when I was having atlas treatment. Maybe it has less to do with being out of alignment and more to do with collagen instability? Sorry, I have no advice. I was hoping you would be helped!
 

GypsyGirl

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@Daffodil Muldowney (the physical therapist who created a PT program for EDS-ers) is adamant that one strengthens the area that's being adjusted. 1) Generally strengthen (work on the exercises regularly, daily if possible) and 2) do the exercises right after each adjustment (which increases the chance of holding the adjustment).

Essentially - if there is ligament laxity or damage, the ligament laxity can't be repaired by manual adjustment to bones. The muscles have to be trained to hold the bones in position since the ligaments are unable to. The muscle strength may be able to adequately compensate and hold the bones in their correct placement (depending on severity). That's the working theory, at least.

Moving the bones without strengthening muscles is like building a house without a foundation - there might be some initial relief, but the bones are likely to move back because there's nothing to hold them there.

I don't mean to be discouraging! Only to share the underlying logic to help explain how it might not work, or how to increase your chances of success based on what is known.
 

Daffodil

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@Strawberry did you give up on the treatment? will you have surgery?

@GypsyGirl thanks for telling me this. i will ask the chiro this at my next appt. if he doesnt know about it, i will try to look up the exercises online.
 

GypsyGirl

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@GypsyGirl[/USER] thanks for telling me this. i will ask the chiro this at my next appt. if he doesnt know about it, i will try to look up the exercises online.
You're welcome! There's an (unofficial) Muldowney group on facebook that shares tips. The book is about $50 from Amazon and even has a section for physical therapists to read (that might be useful to share with your chiropractor).
 

Strawberry

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@Strawberry did you give up on the treatment? will you have surgery?
Yes I gave up on treatment. I'm not sure what I'm going to do! I don't think I need surgery as I'm only mild-moderate CFS and still working full time (but unable to cook or clean for myself). But not sure what will help me, or even how much my neck is the contributor. Surgery is too big of a risk for me when I'm still functioning.
 

Gingergrrl

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why thanks.....yea that chart is bit einstein for moi at this time of day but will recheck later ;)
I didn't understand the chart either @xrayspex but is there a relationship or connection between abnormal calcium channels (channelopathy) and CCI? I wasn't sure if I understood that part but am now very curious.
 

LJS

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Thanks for the replies. How is flexion and extension done with a supine MRI? I have had a few MRIs in the past and they always put a brace on my head to keep it from moving during the scan. Is there a chance of the upright scan picking up something the supine will miss? I guess I am confused what upright is used for if the same conditions can be seen in supine.

@GypsyGirl, I am planning to send my scans to probably two neurosurgeons to review. Since I likely can do a upright MRI locally I feel I probably should do that as I have never had one done, it may show things that were missed in my neck MRI years ago. Though if flexion and extension can be done supine then it may not matter.