CCSVI and CCVBP

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

Postby uprightdoc » Mon Oct 18, 2010 4:59 am

Nigel, bending over gardening increases intraabdominal pressure,which is a Valsalva like maneuver. Consequently, it puts back pressue against the vertebral veins and brain. You have circulatory problems to begin with due to degenerative changes in your spine and you have low BP so bending over just compounds the problems. Don't stop gardening just don't stay bent over for prolonged periods. There is no need to do so with proper garden equipment.

You have significant vascular risk factors in the family you need to be aware of that predispose you to strokes and neurodegenerative diseases and you have low BP. Your problems right now, however, are predominantly structural and you have no lesions in the brain, just the cord as I recall.
Last edited by uprightdoc on Tue Oct 19, 2010 7:55 am, edited 1 time in total.
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Postby Vii » Mon Oct 18, 2010 10:54 am

Dear Dr. Flanagan,

I had Decompression surgery in 1999 for Arnold Chiari malformation. Prior to the surgery, my only complaint was sensory changes of left arm. MRI showed demyelinating lesion on C4. (Radiologist said lesion consistent with MS). Brain showed no lesions, just the ACM. Neurologist believed C4 lesion was related to ACM and said get the decompression surgery done. (my 19 year old daughter had been diagnosed with MS 6 months prior, and my sister had surgery for ACM)

In the post-op period I had a surge of neurological symptoms including drop foot and dragging left leg, so more MRI's were done. This time my brain had multiple demyelinating lesions, so neurosurgeon sent me back to neurologist, saying I had MS, too. I went on to have classic MS relapses, including Optic Neuritis multiple times. Was going downhill on the interferons, but have been stable on Tysabri for 3 years.

If I pursue Upper Cervical adjustments, do you know if the ACM surgery and the "carve out" on the C1 and C2 may leave me vulnerable to injury from the adjustment, or make diagnosis more difficult?

I have ordered your book from Amazon to learn all I can about this, since you make a connection to Chiari malformation, but wonder if the surgery has maybe left me beyond help. The area where they removed a section of skull is very sensitive and I don't like anyone to touch it or put pressure on it.

Thank you in advance for any info you can provide. If you know any good upper cervical specialists in Florida, I'd appreciate that info, too.

Vii

Since a "carve out" of the c1 and C2 were done
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Postby uprightdoc » Mon Oct 18, 2010 11:13 am

Hello Vii, I don' know how much of the posterior arch of C1 and C2 that they carved out but an experienced NUCCA or AO doctor should be able to handle your case.
Your family history and your surge in symptoms after a Chiari decompression sound suspicious of a possible tethered cord syndrome which has a significant correlation with Chiari malformations.
So tell me a little bit more about your case. What is your ethnic background? Are you tall? Do you or your sister or daughter have scoliosis or other abnormal curvatures? Do you have an low back or leg complaints?
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Postby Vii » Mon Oct 18, 2010 11:49 am

Thanks for your reply....

I am a 51 year old female, Hispanic (born in Cuba) I am 5'4" tall. I don't have any low back or lower leg complaints. (except for drop-foot, left leg which came after the surgery) My daughter does not have scoliosis, is 5'2" tall. None of her MRI's have mentioned Chiari. My son, who is 5'8" tall has also been diagnosed with MS, and one of his MRI's did mention Chiari, but he has not had any surgery.

When I went back to my neurologist after the Chiari surgery and with MS brain lesions, he did more MRI's and ruled out tethered cord. I have had thoracic lesions as well, over the years.

There was no history of MS in my family at all. My husband had an uncle with
MS. I have 3 paternal aunts with Alzheimers D., and my father, who is 88 is showing signs of dementia, but is in great physical shape, as he exercises regularly.

Do you think Upper Cervical adjustments may help me after the surgery I had.....scarring and adhesions. etc. that may be present?

Vii
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Postby NZer1 » Mon Oct 18, 2010 12:18 pm

Hi Dr. thanks for the reply it makes so much sense.
Yes I am aware of the Stroke risk and I have been asking my GP what I need to do to keep on top of this if possible.
Its been about 18 months since my last MRI and I think from memory there were about 6 lesions in the brain that showed after the Cord lesion MRI, I am keen to get another MRI sometime, our health system should I hope enable that. I have been wanting to educate myself on the MRI testing in CCSVI so I can ask for any extra investigation at that time rather than shelling more money for testing. Most of my dx costs I have paid for because it takes too long through the system. If you are urgent you receive help quite quickly but for the dx of things like MS its a long and worrying journey.
Thanks Dr, Nigel
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Postby uprightdoc » Mon Oct 18, 2010 12:31 pm

Vii, you are precisely the sort of case Dr. Haake believes should have MRA and MRV scans of your arterial and venous systems. It sounds like the decompression surgery made the Chiari situation worse. The fact that you have cervical and thoracic lesions sounds highly suspicous of decreased blood flow to the cord. Secondarily, after decompression you develped additional lesions in the brain. Your son has MS and you have aunts your father with a history of dementia. It sure sounds like you have circulatory problems to the brain and cord and it seems the grearter problem is on the posterior vertebral blood supply routes. You might discuss MRA and MRV scans with your neurologist. There may be design problems in the circulatory system. I would certainly talk to a well seasoned highly experienced NUCCA or Atlas Orthogonal upper cervical chiropractor. The container has been radically altered at this point. Nonetheless, it may still help to restore flow as much as possible. You have an interesting case so keep me in the loop.
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Postby uprightdoc » Mon Oct 18, 2010 12:37 pm

Nigel, where are the six brain lesions?
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Postby Vii » Mon Oct 18, 2010 12:45 pm

Thank you, Doctor....I will pursue the venous diagnostics, too.
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Postby uprightdoc » Mon Oct 18, 2010 12:59 pm

Vii, talk to the neuologist about possible vascular exams I discussed. Let me know if you want me to find a uc chiro for you. If you find someone on your own let me know who and what their background is. You have a serious case that needs extra special care. Also discuss with your neuro possible plain view x-rays and a cervical MRI. You may have some stenosis in the cervical spine.
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Postby NZer1 » Mon Oct 18, 2010 1:17 pm

This feedback Dr. F reminds me of my time 5-6 years ago when the Muscular Skeletal Dr sent me to the Physio pair who assessed me in a whole person exam. They found that my lumbar and pelvic floor was unusually week and gave me exercises to build up that area as well as working on my torn rotator cuffs. After many months of concentrated effort they could not increase the lower muscles and the push for MS testing increased. At this time I had muscle weakness and a patch of feeling loss in my right abdomen which the Neuro could measure and in hind sight is what is called the MS hug.
Nowadays it is more obvious even visibly the right side is in cramp and smaller than the left and must effect my diaphragm. I now see the importance with the breathing and BP type issues I experience. I do daily exercises to keep myself as mobile as possible and use a treadmill and exercycle as well which I believe is the only reason I am still walking unaided. I daily meditate and rest/sleep as my body tells me.
Thank you for your insight. I feel better knowing what is happening rather than living in fear, something we PwMS live with everyday. The what if and whats happening to me part of this disease is a battle in itself on top of dealing with the actual symptoms.
It is becoming more obvious to me that your input with Dr. Haacke and I hope others e.g Dr. Zamboni is going to be vital.
Thank you for you help, Nigel
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Postby NZer1 » Mon Oct 18, 2010 1:21 pm

Dr. I will have to look back through my growing pile of tests it could take a while and I am out of town tomorrow at our National MS Society AGM, duty calls for our branch to have a voice at the top. I will let you know as soon as I can go through the results.
Regards Nigel
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Postby NZer1 » Mon Oct 18, 2010 1:45 pm

Amazing my filing system works.
I have had 3 MRI (2 x 2007 and 1 x 2008) In the first two they noted the disc degeneration and the disc bulges and in the 2008 they found the lesions, below plus the previously mentioned cord lesion.
"Two foci of white matter hyperintenity have developed as shown on flair and T2 imaging. There is a 2-3mm focal elipical area anteriorly in the left centrum semiovale and a more confluent area of white matter hyperintensity adjacent to the lateral aspect of the atrium of the left lateralventricle. This measures 11mm in maximum diameter. No enhancement occurs on administration of Gadolinium."
When the Neuro reviewed the films with me when I asked what areas would be affected by these lesions and the cord lesion he pointed out four other lesions which I could also clearly see when he indicated where they were. Sadly he did not write down the positions of the extra four found. And more to my disappointment he did not talk about the areas that could be effected by the positions of any of the lesions, because of my technical mind I was deeply disappointed by this.
Sorry this all coming out in patches of info, doesn't help you to form a picture but then again it is a disjointed story for most of us to achieve a dx over the years. Some times it may be better to get the pieces by association and then form an overall masterpiece. :lol:
Thanks again, Nigel
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TOS & CCSVI

Postby NINOU » Mon Oct 18, 2010 1:52 pm

Dear Doctor,
I would like to know what you think about this MRI : http://ivcc.fr/images/ccsvi_jcm.jpg.
I'm 50 with a secondary progressive MS , edss from 2 to 7 in 5 years.
One doctor has detected a Thoracic Outlet Syndrom.
What is it possible to do ? liberation treatment ? surgery ? Other ?
I'm living in Europe.
Many thanks for your advices.
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Postby uprightdoc » Mon Oct 18, 2010 2:26 pm

NINOU, what are your signs and symptoms? Do you get migraine-like headaches? How is your balance? What other tests have been done?
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Postby NZer1 » Mon Oct 18, 2010 10:23 pm

Dr's F and K, I have had a realization!.
With your skills knowledge and training you may be the missing link in MS in more ways than one. With the resistance from Neurology with Vascular involvement in MS, it has become near impossible to have a team onside for evaluations before and after treatment of veins and for the follow up assessments.
Are you able to do assessments of patients?, I was involved in developing the surveys for Dr. Scalafani and we were very aware that the options used currently by 'Specialists' are not addressing the disabilities in MS, and not transferable and cost effective.
Can you both give this some thought and let me know please.
Regards Nigel.
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