CCSVI and CCVBP

[uprightdoc]

Hello Robert,

Have you seen George yet? How are you doing with the neck pain, cracking sounds and dizziness?

[Robnl]

Hi doc,

Appointment with George was cancelled, 27th new appointment.

Neck stays the same; painful, dizzy, nausea in the morning....well i'll manage...

[Robnl]

http://www.radiologyassistant.nl/en/p4f ... pathy.html

[mystery1980]

Hello Dr. Flanagan and everyone else

It's been a while I was here because the thoracic surgery, and thanks to Robnl to give an update here about me

The thoracic hernia is gone, but at this point 7 weeks further, my boyfriend and I do not notice that the complaints are less then before the surgery. The physio says I "walk" different then before the surgery, but I do not feel or notice that.
The wound pain is finally getting less painful but my breast is still feeling very sensitive.

Now monday I have a appointment with the neurosurgeon and a X-ray from the thoracic section of the spine, and also the result from the spinal cord research for autoimmune diseases.

The neurosurgeon thinks that the thoracic hernia cause the syrinx.

When I know more, I let it know here.

Kind regards mystery

[uprightdoc]

Hello Mystery,

You are a very unusual and interesting case. You and Robert should both visit Dr. Francis Smith in the UK for Upright and Cine MRI.

Although thoracic stenosis has been associated with syrinx formation, it is uncommon. The most common cause of syrinx formation is Chiari malformations. Chiari malformations can be caused by inherited design flaws in the base of the skull and upper cervical spine such as an undersized (hypoplastic) posterior fossa. Chiari malformations can also be acquired due to traumatic injuries of the upper cervical spine. The motor scooter accident most likely injured the muscles and ligaments of the upper cervical spine in your case. The dura mater of the brain attaches to the foramen magnum of the cranial vault and to the upper cervical spine. Muscle and connective tissue injury can cause misaligment, instability and dysfunction of the upper cervical spine. Misalignments of the upper cervical spine strain the dura mater. Tension strains of the dura mater can cause Chiari malformations.

[Robnl]

So, when do we go Myst?

But seriously: i am thinking to go to London. Doc, would it be wise to make contact with dr Smith and ask him if october if possible, costs, how long i have to be there etc?
I will have to arrange flights, hotel...you know...

Robert

[uprightdoc]

Robert, It probably would be wise for you to contact Dr. Smith first so you can determine costs and make arrangements. Don't forget to bring a little extra money so your wife and the girls can go shopping. Tell Dr. Smith I strongly recommended that you see him and that you are a former high level amateur midfield soccer player with a hybrid case of MS and PLS. You need an Upright and Cine MRI and a competent radiologist to examine your upper cervical muscles, ligaments and dura mater for tears and misalignment.

Rather than from "heading the ball" as in your case, Mystery was probably born with a Chiari malformation and syrinix that was made worse by the motorscooter accident in which she most likely landed on her head and neck in a flexed postion that tore the muscles and ligaments of the craniocervical junction.

[Robnl]

I will send dr Smith an email tomorrow...

[mystery1980]

Hello Dr. Flanagan and everyone else

Thanks for the reply, today I have the appointment with the neurosurgeon I'm curious...
When I went to the neurosurgeon in the other hospital they make a MRI and said I had no Chiari.
I copy and paste a image from the MRI, but I don't know how I can post it here?

I will try to send it to you in a pm.

@ Robnl I don't know when to go to London ;)

Kind regards mystery

[Robnl]

you can do it via:
http://postimage.org/?lang=dutch

Doc, when i mail doc smith i'll put you on cc, ok?
(you know doc smith, right?)

[uprightdoc]

Doc, when i mail doc smith i'll put you on cc, ok?
(you know doc smith, right?)

Robert,

Yes. Put me on the CC.

I do not know Dr. Smith personally. I know of Dr. Smith through Dr. Harshfield. He may or may not recognize my name but mention it and why I suggested that you see him.

[uprightdoc]

... I'm curious...
When I went to the neurosurgeon in the other hospital they make a MRI and said I had no Chiari...

Hello Mystery,

As I recall you have a Chiari 0 in which you have a decrease in the retrocerebellar space (cisterna magna) when you are recumbent. Chiari malformations tend to get worse in the vertical (upright) position, which is why cases such as yours need to have Upright and Cine MRI done to check for cerebellar tonsillar ectopia and blockage of blood and CSF flow. Blockage of CSF flow between the cranial vault and spinal canal cause it to seek other outlets such as the central canal of the cord, which can cause a syrinx.

Please post your images here if you can or send them PM to me.

[Robnl]

Doc, when i mail doc smith i'll put you on cc, ok?
(you know doc smith, right?)

Robert,

Yes. Put me on the CC.

I do not know Dr. Smith personally. I know of Dr. Smith through Dr. Harshfield. He may or may not recognize my name but mention it and why I suggested that you see him.

Mail is sent...

rgds,

Robert

[uprightdoc]

Hello Mystery,

I reviewed the MRI you sent PM. It would be helpful to see more of the images but the sagittal view you sent looks normal. Unfortunately, it was done in the recumbent position and it does not include the craniocervical junction. You need and Upright (vertical) and Cine MRI as well as close examination of the muscles, ligaments and dura mater of the craniocervical junction as well as its alignment. It would be helpful to see more

[uprightdoc]

That's good news Robert. Ask him if he is aware of the study involving the Italian Soccer Players and ALS and that Fernando Ricksen from Holland, which you pointed out to me was recently diagnosed with ALS.

http://www.dailymail.co.uk/sport/footba ... sease.html