This Is MS Multiple Sclerosis Community: Knowledge & Support

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Dr. Scott Rosa sincerely appreciates the patient interest in his observational study, but the increase volume of emails and telephone calls are disruptive to his normal practice. Because Dr. Rosa has a waiting list, he respectfully requests that patients not apply for the study at this time. Future study sessions have not been scheduled nor confirmed. If you previously contacted Dr. Rosa's office, you will be notified if selected to be in the study.

Thanks for your understanding.
Sharon

Hi all, yes I'm still just functional CPn/ABX and all.
Neava has posted this on her FB sight Dr F and it seems to be the issue in her case. Do you think that there is a possibility of confusion of cause and attempt to correct in this example and probably most surgical procedures for Chiara?
http://clinicaltrials.gov/ct2/show/NCT0 ... tis&rank=1
Quote;
"Purpose
The goal of this study is to establish the mechanism(s) of progression of primarily spinal syringomyelia (PSS). Our preliminary study of syringomyelia emphasized syringomyelia associated with craniocervical junction abnormalities (CCJAS), such as the Chiari I malformation. This new protocol will expand the scope of our investigation to include primarily spinal syringomyelia (PSS), which is defined as syringomyelia not associated with craniocervical junction abnormalities (CCJAS). Etiologies of primarily spinal syringomyelia include 1) intradural scarring which is post-traumatic, post-inflammatory, or post-operative, 2) intradural-extramedullary masses such as arachnoid cysts or meningiomas, and 3) extramedullary-extradural spinal lesions such as cervical spondylosis or spinal deformity.

Our hypothesis is the following: Primarily spinal syringomyelia (PSS), results from obstruction of cerebrospinal fluid (CSF) flow within the spinal subarachnoid space; this obstruction affects spinal CSF dynamics because the spinal subarachnoid space accepts the fluid that is displaced from the intracranial subarachnoid space as the brain expands during cardiac systole; in the case of primarily spinal syringomyelia (PSS), a subarachnoid block effectively shortens the spinal subarachnoid space, reducing CSF compliance and the capacity of the spinal theca to dampen the subarachnoid CSF pressure waves produced by the brain expansion during cardiac systole; the exaggerated spinal subarachnoid pressure waves occur with every heartbeat and act on the spinal cord above the block to drive CSF into the spinal cord and create a syrinx. Presyringomyelia, a recently described state of spinal cord edema associated with progressive myelopathy and obstruction in CSF flow, is a precursor stage to syringomyelia that is consistent with this hypothesis. Because of the importance of this condition to the pathophysiology of syringomyelia, we will also study patients with presyringomyelia in this protocol. After a syrinx is formed, the enlarged subarachnoid pressure waves compress the external surface of the spinal cord, propel the syrinx fluid, and promote syrinx progression.

Many neurosurgeons at prominent academic centers routinely use syrinx shunts to treat primarily spinal syringomyelia. This study should provide data that a surgical procedure that opens the spinal subarachnoid space corrects the underlying pathophysiology and resolves the syrinx and that invasion of the spinal cord is unnecessary."

Regards,
Nigel

Hello Nigel,
I am not sure if I understand your question. The study is on target regarding the cause of syringomyelia. The same mechanism of obstruction to CSF flow often applies in many cases to arachnoid cysts except that they eventually become isolated from CSF flow.

Thanks, I am thinking that in Neava's case that there is a compounded problem. The possibility of alignment impeding flow and the time factor and posture causing the Chiari being the start issue.
Having surgeries may have caused the cyst to repeat and ongoing flow capture of CSF in the spinal cord, my thinking is that the original issue wasn't corrected so the surgery has clouded the picture of what has developed?
I'm having problems getting my words to match my thoughts, sorry.

Nigel

Now I understand. You are correct. Syrinxes and arachnoid cysts can be caused by surgery due to scarring subarachnoid space. Furthermore, if there are any underlying mechanical problems in the spine, such as in the CCJ or spondylosis, scoliosis or stenosis in the lower spine that have not been corrected the abnormal hydraulics in the cord will continue and the syrinx or cyst could return.

Dr Flanagan could you have a look at my Fonar MRI that was done with Dr Rosa. I am wondering if something is going on with, perhaps my vertebral veins. I am wondering why I must tilt my head backwards to be able to do anything. The only other person I have met that tilts their head is Blossom. Plus I now suffer from tachycardia. I did not have this before my symptoms worsened. As my condition has progressed so has the tachycardia. Interesting enough whenever my veins were open and after an AO adjustment my pulse returns to normal.

Hello Dania,
I would be happy to look at your FONAR scans. It is unusual for people to feel better tilting their head backwards which compresses the vertebral arteries. Most people get light headed if they tilt backwards for too long. The fact that you feel better tells me that the cord is strained when you move your head into flexion (chin toward your chest). Neck flexion bothers Blossom because of the bone spurs. When she flexes forward the cord gets irritated and gets dragged over the spurs. She may have some adhesion of the cord and nerve roots to the spurs as well causing local tethering. I haven't seen your cervical x-rays but I can imagine what they look like. I suspect you have kyphosis similar to Blossom. POTS can be caused by displacement of the brain in the cranial vault and intracranial pressure problems. The AO adjustment apparently improves blood and CSF flow after the correction but the degeneration in your neck limits lasting correction.

TY Dr Flanagan. Looking forward to what you find. And I do believe I have intracrainial pressure problems as I have edema in my face, mouth, tongue etc. My nasal passages are always swollen. Stuffy nose.

Hello its embolization I am new to this site and I have been suffering from terrible pelvic venous congestion for year but my treatment was stopped due to cost and I was so close to being completely cured pelvic venous embolization has reduced the venous reflux in my pelvic and now I can stand and walk for long periods but I am still struggling with pelvic skin inflamation and I am trying to join others with this condition to explain that if embolization works if you can get treated by a good interventional radiologist hope you manage to communicate with people and learn how the community can advice and support other

Dania,
Do you have copies of the FONAR scans? Do you have any x-rays of your spine other than the AO x-rays?

I do not have copies of the Fonar MRI and no other X rays.

Dania,
Do you have any brain or cervical scans?

I have nothing other than what Dr Rosa did.

Anyone for tennis?
Hit the ball back and forward, oh wait there is no ball!

Dania,
If you have no brain or cervical scans how was it determined that you have MS?