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

[Marelica]

Hello folks,
I need help

I am in contact with Munich for upright MRI and I attempt to deal with them what kind of scan I need for a check-up with dr Gilete.
They offer me the following scan :

We examine the cervical spine and the head joints while sitting.
There are two different investigations.

Now, I am a little bit confused I thought that I must have only one scan with all this rotation, flexion, and extension - I have precise instruction from dr Gilete office.

Do I have to do two scans, one of the cervical spine and one for head joints?
Is there anyone here who was on upright MRI in Munich?

Thanks in advance for any hint

 

[Inara]

Do I have to do two scans, one of the cervical spine and one for head joints?
Is there anyone here who was on upright MRI in Munich?

Munich is billing as two scans (one scan for the cervical spine, another for the cervical junction which they count to the head), i.e. ca. 1500€ for a MRI as needed for Gilete. They should do the scan exactly as instructed by Gilete.

 

[Daffodil]

Hello folks,
I need help

I am in contact with Munich for upright MRI and I attempt to deal with them what kind of scan I need for a check-up with dr Gilete.
They offer me the following scan :

We examine the cervical spine and the head joints while sitting.
There are two different investigations.

Now, I am a little bit confused I thought that I must have only one scan with all this rotation, flexion, and extension - I have precise instruction from dr Gilete office.

Do I have to do two scans, one of the cervical spine and one for head joints?
Is there anyone here who was on upright MRI in Munich?

Thanks in advance for any hint

i had it done in USA and was billed for 2 scans

 

[mattie]

.

Munich is billing as two scans (one scan for the cervical spine, another for the cervical junction which they count to the head), i.e. ca. 1500€ for a MRI as needed for Gilete. They should do the scan exactly as instructed by Gilete.

Same in Hannover, I paid € 1800 in 01-2019.

 

[mattie]

@mattie I was hoping you would answer
Did you make two scans in Hannover?

yes.

 

[chger]

Munich is billing as two scans (one scan for the cervical spine, another for the cervical junction which they count to the head), i.e. ca. 1500€ for a MRI as needed for Gilete. They should do the scan exactly as instructed by Gilete.

Oh i thought the cervical Junction is visible at cervical Spine Scan. Is this not the Case?

 

[Marelica]

yes.

Well, I already sent you a private message
My question is :
I don't know if both recordings have to be with flexion, extension, and rotation.

The price in Munich is 1250 EUR each scan, in total 2500 EUR.

 

[mattie]

Well, I already sent you a private message
My question is :
I don't know if both recordings have to be with flexion, extension, and rotation.

The price in Munich is 1250 EUR each scan, in total 2500 EUR.

It was 1800 in Hannover, so that may be worth driving a bit further...
I just answered your PM with the quotation from Hannover stating the exact scans they did and costs.

 

[chger]

Wow 2500€ for ?20? Min Scan...

 

[Marelica]

It was 1800 in Hannover, so that may be worth driving a bit further...
I just answered your PM with the quotation from Hannover stating the exact scans they did and costs.

Thank you.

 

[melcomcosh]

Hello All:

Husband has suspected CCI/AAI (abnormal CXA (128mm) and Grabb-Oakes (8.6mm)) and like many of you has been asked to do home and PT manual traction as a diagnostic indicator.

Here's the problem.

He has:

1. A very large cranium (seriously - like size 8 in baseball caps)
2. hEDS diagnosed by a knowledgeable physician
3. TMJ issues with one side totally dislocated and held together with scar tissue
4. Type 2 TGN (atypical trigeminal neuralgia) on the right side

The combination of the upward pressure on his jaw and pressure on his face (from the harness) will likely make it impossible to discern if there's any benefit to cervical traction as it has, so far, increased his pain. His key complaint is facial pain and headache with some other weird neuropathies, vertigo, dizziness, clumsiness, tinnitus, fatigue (not PEM).

We've tried manual traction: hands (no improvement), manual traction: towel behind head (no improvement), over the door traction (no improvement), cervical air pillow collar (no improvement).

Last option is cervical collar (Aspen Vista) but I suspect the jaw pressure will be unbearable.

I'm thinking it will be impossible for us to discern this at home.

Any ideas what to do here? Or does this mean we're barking up the wrong tree?

Thanks,
M

 

[sb4]

@melcomcosh You may find it interesting to look up Dr Diana Driscoll thoughts on this. I remember her mentioning the link between EDS, large cranium size, and Intracranial hypertension. Something to do with if you have intracranial hypertension when young, your scull grows significantly larger to try to relieve some of the tension.

 

[suevu]

Hello folks,
I need help

I am in contact with Munich for upright MRI and I attempt to deal with them what kind of scan I need for a check-up with dr Gilete.
They offer me the following scan :

We examine the cervical spine and the head joints while sitting.
There are two different investigations.

Now, I am a little bit confused I thought that I must have only one scan with all this rotation, flexion, and extension - I have precise instruction from dr Gilete office.

Do I have to do two scans, one of the cervical spine and one for head joints?
Is there anyone here who was on upright MRI in Munich?

Thanks in advance for any hint

Go to Medserena in London, they have the best machine, more precise and more scans.

and reading your prices... also cheaper. and now that the pound is falling fast, even more affordable.

 

[melcomcosh]

@melcomcosh You may find it interesting to look up Dr Diana Driscoll thoughts on this. I remember her mentioning the link between EDS, large cranium size, and Intracranial hypertension. Something to do with if you have intracranial hypertension when young, your scull grows significantly larger to try to relieve some of the tension.

Thank you! I will. He has a really high IQ so we thought he just had a big brain ;-)

 

[Marelica]

Go to Medserena in London, they have the best machine, more precise and more scans.

and reading your prices... also cheaper. and now that the pound is falling fast, even more affordable.

Thanks for the suggestion.
Unfortunately, due to my medical condition, I can't go to London right now.

 

[Daffodil]

Hello All:

Husband has suspected CCI/AAI (abnormal CXA (128mm) and Grabb-Oakes (8.6mm)) and like many of you has been asked to do home and PT manual traction as a diagnostic indicator.

Here's the problem.

He has:

1. A very large cranium (seriously - like size 8 in baseball caps)
2. hEDS diagnosed by a knowledgeable physician
3. TMJ issues with one side totally dislocated and held together with scar tissue
4. Type 2 TGN (atypical trigeminal neuralgia) on the right side

The combination of the upward pressure on his jaw and pressure on his face (from the harness) will likely make it impossible to discern if there's any benefit to cervical traction as it has, so far, increased his pain. His key complaint is facial pain and headache with some other weird neuropathies, vertigo, dizziness, clumsiness, tinnitus, fatigue (not PEM).

We've tried manual traction: hands (no improvement), manual traction: towel behind head (no improvement), over the door traction (no improvement), cervical air pillow collar (no improvement).

Last option is cervical collar (Aspen Vista) but I suspect the jaw pressure will be unbearable.

I'm thinking it will be impossible for us to discern this at home.

Any ideas what to do here? Or does this mean we're barking up the wrong tree?

Thanks,
M

I would just get more opinions from other neurosurgeons to see if they think he has CCI / AAI

 

[Katka]

It was 1800 in Hannover, so that may be worth driving a bit further...
I just answered your PM with the quotation from Hannover stating the exact scans they did and costs.

this difference in prices looks crazy for me. I was booked in Koln for 950eur, unfortunatelly I was not able to make it. But it is huge difference. I asked them fo ran upright MRIs with flexion , extension and neutral views of my cervical spine.

 

[hezza]

We've tried manual traction: hands (no improvement)

I'm thinking it will be impossible for us to discern this at home.

If this was not performed by a trained PT that still may be an option to try, especially if you can find one knowledgeable about hEDS/TMJ. I wouldn’t consider it ruled out until you at least try that. I too have hEDS/TMJ but the PT was able to perform the traction very comfortably - in fact- it felt like heaven.

 

[hezza]

His key complaint is facial pain and headache with some other weird neuropathies, vertigo, dizziness, clumsiness, tinnitus, fatigue (not PEM).

Symptoms seem to line up more with CCI than ME. Keep pursuing it!

 

[melcomcosh]

If this was not performed by a trained PT that still may be an option to try, especially if you can find one knowledgeable about hEDS/TMJ. I wouldn’t consider it ruled out until you at least try that. I too have hEDS/TMJ but the PT was able to perform the traction very comfortably - in fact- it felt like heaven.

Sadly, manual traction was performed by a PT and an RMT. Not heavenly.