Parkinson and MS cured by surgery (but not CCSVI)

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Cece » Thu Jun 03, 2010 11:09 am

Mutley wrote:InteThe scans I had done in Poland confirm that my Jugulars are being squashed by the sternocleidomastoid muscles in my neck, which is the sort of thing that is characterised in classic CTOS.

I've been looking into torticullis, which is a disorder of the sternocleidomastoid muscle...two of my three kids were born with this, although my youngest's case resolved easily and we still do stretches for my 5-year-old, who looks completely normal but sometimes says his neck hurts.

Torticullis, the congenital kind, is when the muscle had poor blood flow prenatally or a traumatic birth and therefore the muscle shortened or has a scar in it and doesn't not work as well; my son would always look to the left because of it, until his neck grew stronger.

Anyway this is the part that I think is of interest:
from wikipedia wrote:The condition is treated initially with physical therapy, with stretching to correct the tightness, strengthening exercises to achieve muscular balance, handling to stimulate symmetry. A TOT Collar is sometimes used. About 5–10% require "surgical release" of the muscle if stretching fails.[2][3]


I am wondering if this surgical release has any overlap with the procedure that's done to treat CTNVS/CTOS. I will continue looking into this... :)
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Postby Cece » Thu Jun 03, 2010 11:22 am

http://en.wikipedia.org/wiki/Sternocleidomastoids

http://en.wikipedia.org/wiki/Scalene_muscles

These links have a good picture of the scalene muscles and the sternocleidomastoids. And if you look at this one:

http://en.wikipedia.org/wiki/File:Gray384.png

it shows where the interior jugular is in relation to both of them.

Apologies if this has been posted already, I have yet to go back and reread this thread. :)
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Postby LR1234 » Thu Jun 03, 2010 11:25 am

Do you reckon there are any drugs or treatments (i.e massage)
That could really relax these muscles to give more room to the blood vessels?

I do find when I do stretching exercises using one of those sit up contraptions (for stomach muscles) that it helps with the "MS" maybe it is stretching the neck/back and loosening the muscles.
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Postby Cece » Thu Jun 03, 2010 11:34 am

looking into torticullis there was massage and botox injections as possibilities...I do not mean to draw too many comparisons, just to see what they do with this other neck muscle disorder...
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Postby Nunzio » Thu Jun 03, 2010 1:39 pm

I just found this paper:
Dilatation of the great vein of Galen secondary to obstruction to flow in the internal jugular veins in a patient with thoracic outlet syndrome (TOS) and migraine
James Douglas Collins1, Ernestina H. Saxton3, Theodore Q. Miller1, Samuel S. Ahn2, Hugh Gelabert2 and Alfred Carnes1

1 Radiological Sciences,
2 Vascular Surgery, UCLA, 10833 Le Conte Avenue, Los Angeles, CA, 90095,
3 Neurology, UCLA, 300 Medical Plaza, Los Angeles, CA, 90095

ABSTRACT

Magnetic resonance imaging (MRI), angiography (MRA) and venography (MRV) display venous and neurovascular obstruction in patients with thoracic outlet syndrome (TOS) and migraine ( Clin. Anat. 1995; 8:1–16[CrossRef][Medline] ; JNMA. 2003; 95:298–306 ). Costoclavicular compression of the bicuspid valves within the internal jugular vein and the veins of the neck and supraclavicular fossae results in venous congestion of cerebral dural sinuses secondary to increased intracranial, intrathoracic and intraabdominal pressures. Patients complain of upper extremity pain, numbness, tingling and edema; facial, back and lower extremity pain; visual blurring and "floaters", and syncope. Cerebral venous hemodynamics plays a role in the pain of migraine headache. Headache is prominent in TOS patients with venous obstruction. The great vein of Galen drains into the straight sinus, with drainage into the longitudinal, transverse and sigmoid sinuses into the internal jugular vein. Multiplanar imaging of the dural sinuses in suspected TOS patients was conducted on the 1.5 Tesla (GE Signa LX), 4.0 mm thickness, 512 x 256 matrix and saline water bags to enhance signal to noise ratio. Blood flow was displayed as changes in proton density without contrast. Dilatation of the vein of Galen secondary to costoclavicular compression of the bicuspid valves within the draining veins of the neck and supraclavicular fossae is displayed in this presentation.

The new thing for me was that TOS can affect the bicuspid valve of the internal jugular vein. So it is also possible that some of the CCSVI valve problems are also related to TOS/CTOS/CTNVS.
The two condition might be closer together that we think.
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Need Spanish speaker's opinion on Noda articles

Postby UncleB » Thu Jun 03, 2010 3:26 pm

I want to take the CTOS(CTNVS)/CCSVI idea to a local bilingual vascular surgeon or interventional radiologist to see if he/she will pursue it further by doing an examination of my wife who has Parkinson‘s disease and/or doing a study to look for vascular irregularities in PD patients.

Before I do that I need to get my ducks in a row. I need to find out how persuasive Dr Noda’s research is. I speak very little Spanish. From the Google translation of the 1996 article, I can’t tell how Noda’s articles would be received by an open-minded doctor. It would be great if an objective, generally skeptical, bi-lingual person could read Noda’s articles in Spanish and tell me what he or she thinks.

There are two main Noda articles that I am aware of: a 1996 article discussing the (then named CTOS) procedure on 1,300 patients, and a 2002 article discussing the (then named CTNVS) procedure on 1,600 patients. Links to the two articles are:

The 1996 article: “Neck and brain transitory vascular compression causing neurological complications. Results of surgical treatment on 1,300 patients.” http://www.ncbi.nlm.nih.gov/pubmed/10064369 The Spanish version is here: http://abdem.mforos.com/474058/2065490- ... aleno-ctos

The 2002 article: “New concept regarding chest pain due to hypoxia of the internal mammary arteries in more than 1,600 operated patients with cerebral thoracic neurovascular syndrome (CTNVS).” http://www.ncbi.nlm.nih.gov/pubmed/11887092
Does anyone know how to get the Spanish (or English) version of the full 2002 article?

As I read the Google translation of the 1996 article, it appears that Noda claims that his CTOS procedures have positive effects on MS, PD, Alzheimer’s and other diseases. How well are these claims supported by the article? Do they seem credible? I have the same questions as to the 2002 article.

If Noda’s articles appear to be helpful, I will stress those when I contact the local doctor. If not, I will stress the CCSVI research and argue, as best I can, how it supports the idea that Parkinson‘s, like MS, has a vascular component that needs to be investigated.

A 2006 follow-up on the 2000 D’Salud article on Noda cited by Nunzio at the beginning of this thread is found here: http://www.dsalud.com/numero21_3.htm
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Postby Nunzio » Thu Jun 03, 2010 4:13 pm

SammyJo wrote:I have friends with Parkinsons who are getting scanned per Dr Noda's theroy about CTOS. Will post everyone when I hear the results.

Hi Uncle,
you might want to PM SammyJo to find out more about what happened.
Good luck
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Postby frodo » Fri Jun 04, 2010 11:14 am

Correcting myself, I was wrong when I said that CTOS only deals with arteries and cannot have relationship with MS. In fact, CTOS is defined as higher than normal pressure in the neck, and some cases are known to affect veins.

http://en.wikipedia.org/wiki/Thoracic_outlet_syndrome

Maybe CTOS is just another possible cause of CCSVI, just like stenoses or defective valves.
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Postby Mutley » Fri Jun 04, 2010 11:32 am

frodo wrote:Maybe CTOS is just another possible cause of CCSVI, just like stenoses or defective valves.


I reckon you're right Frodo :D
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby Nunzio » Sat Jun 05, 2010 4:21 am

Nunzio wrote:
Dilatation of the great vein of Galen secondary to obstruction to flow in the internal jugular veins in a patient with thoracic outlet syndrome (TOS) and migraine
James Douglas Collins1, Ernestina H. Saxton3, Theodore Q. Miller1, Samuel S. Ahn2, Hugh Gelabert2 and Alfred Carnes1

ABSTRACT

Costoclavicular compression of the bicuspid valves within the internal jugular vein and the veins of the neck and supraclavicular fossae results in venous congestion of cerebral dural sinuses secondary to increased intracranial pressures.

.

frodo wrote:

Maybe CTOS is just another possible cause of CCSVI, just like stenoses or defective valves.


I reckon you're right Frodo Very Happy

As you can see from the shorter version of a previous post, TOS can affect the valves of the Internal Jugular Vein.
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Postby Zeureka » Sat Jun 05, 2010 9:42 pm

Any ideas on whether the headaches I have coming/going after procedure (end May) could have anything to do with this? I know all speculations...but I'm still wondering - should the headaches I have coming and going since 5 days relate to it - how blood flow dynamics may have changed in my brain to cause me those headaches...may it be a sign of decreased oxygenation instead of an increase? Or can a sudden increase also cause headaches?

I really rarely had headaches before, and was not a migraine person...I hope its transient...

Or may the headaches (that however did not have before) have to do with some anew activated spinal cord lesions that have in C1-C5 and C7 ?

Quote" TOS can affect the valves of the Internal Jugular Vein." I had a pathologic valve in my jugular. My most disabling MS relapse had been instability...when they diagnosed me they said the lesions in C area likely caused it...so I'm now wondering about link CTOS and MS and CCSVI...
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Postby Nunzio » Tue Jun 08, 2010 2:41 am

Zeureka wrote:Any ideas on whether the headaches I have coming/going after procedure (end May) could have anything to do with this?

Yes I think so; I do not think that a cervical lesion can cause headaches,
especially migraines. As you know the original theory on migraines is this:
What is a migraine headache?

A migraine headache is a form of vascular headache. Migraine headache is caused by vasodilatation (enlargement of blood vessels) that causes the release of chemicals from nerve fibers that coil around the large arteries of the brain. Enlargement of these blood vessels stretches the nerves that coil around them and causes the nerves to release chemicals. The chemicals cause inflammation, pain, and further enlargement of the artery. The increasing enlargement of the arteries magnifies the pain.

so you should be happy you have headaches because it means your brain blood vessel are dilating. I hope, once things stabilize, they will go away.
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Postby Zeureka » Tue Jun 08, 2010 3:58 am

Nunzio wrote:
Zeureka wrote:Any ideas on whether the headaches I have coming/going after procedure (end May) could have anything to do with this?

Yes I think so; I do not think that a cervical lesion can cause headaches,
especially migraines. As you know the original theory on migraines is this:
What is a migraine headache?

A migraine headache is a form of vascular headache. Migraine headache is caused by vasodilatation (enlargement of blood vessels) that causes the release of chemicals from nerve fibers that coil around the large arteries of the brain. Enlargement of these blood vessels stretches the nerves that coil around them and causes the nerves to release chemicals. The chemicals cause inflammation, pain, and further enlargement of the artery. The increasing enlargement of the arteries magnifies the pain.

so you should be happy you have headaches because it means your brain blood vessel are dilating. I hope, once things stabilize, they will go away.

Wow! Happy days then...today however my jaws both sides are hurting/swollen feeling in addition - but it could have to do with an unlucky combination with my teeth also - yesterday suddenly got tooth pain upper left side (did not notice before!) and have a lighter headache only left now and it is left-sided only...oh well...so I got appointment with dentist this afternoon, lets see what he finds...

Thanks already so much for the encouragement! The migraines I had in start (it was a different pain that had with pressure fluctuating around different places in my brain), indeed most likely related to vascular adaptation issues...
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Postby UncleB » Wed Aug 11, 2010 8:24 pm

This is an update on my looking into the role that the vascular system plays in idiopathic Parkinson’s disease.

I have found a Doppler technician in Tucson who does CCSVI work (he even went to Dr Sclafani’s NY symposium) and who is willing to do a CCSVI scan on my wife who has PD. In the next month or so, he will be scanning my wife for CCSVI. So we will have one more bit of data to test the PD-CCSVI theory. Hopefully, the PD controls in Zamboni’s two studies who did not have CCSVI were the exceptions.

The Doppler technician will also be using the Noda-Recarte Doppler protocol for CTOS/CTNVS which Dr Recarte emailed to me.

I have found a study, "Vascular pathology in patients with idiopathic Parkinson's disease" Ivan Rektor, 2007, which finds "significant correlation between clinical and cognitive status [in Parkinson’s patients] and intimomedial thickness [of the common carotid artery]" This refers to thickness of the artery wall. Dr Rektor’s study gives the Doppler protocol he used, so I may have the technician run that protocol too, though I don’t know if that condition is treatable. If any of these scans find any vascular abnormalities, we will go to a local vascular surgeon or interventional radiologist here in San Diego and have them treated if possible.
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Postby blossom » Wed Aug 11, 2010 8:50 pm

please keep us posted. there has got to be this missing link that why do some improve so and others don't. i hope the ccsvi dr.'s are looking at ctos as one of the possiblities. anyone know of any ccsvi dr.'s doing this?
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