CCSVI and CCVBP

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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uprightdoc
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Re: CCSVI and CCVBP

Post by uprightdoc »

Thanks for the links Dania but patients shouldn't take it as an endorsement. Patients with MS and other neurodegenerative conditions should be very careful in choosing a professional to work on the upper cervical spine. You will notice on the Atlantotec website that one of the contraindications of an upper cervical adjustment could be a Chiari malformation. Many patients with MS and other neurodegenerative conditions have Chiari malformations. Doctors need to be fully informed and well trained to handle neurodegenerative diseases and complex cases.
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Re: CCSVI and CCVBP

Post by blossom »

quote dr. flanagan >Doctors need to be fully informed and well trained to handle neurodegenerative diseases and complex cases

this to me is the hardest thing to accomplish. through the yrs. i may have done more harm to myself than good. now that i know more of my need and finding such a dr. "at least here" seems like mission impossible. when it comes to this it's not like playing a game of horse shoes.--almost doesn't count.
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Re: CCSVI and CCVBP

Post by NZer1 »

http://www.westernimaginggroup.com.au/

Found these guys who are in Sydney at the same place as the Doppler testing
Dr Gregg and the AO chiro is not to far away.
I have sent some emails to see what can be arranged.

I do believe in Syncronicity so I have sent some emails and hope that most of all there is interest from Joesph Ierano, there may be a possibility of creating an Australian link to Dr Rosa' study?

Nigel
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dania
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Re: CCSVI and CCVBP

Post by dania »

uprightdoc wrote:Thanks for the links Dania but patients shouldn't take it as an endorsement. Patients with MS and other neurodegenerative conditions should be very careful in choosing a professional to work on the upper cervical spine. You will notice on the Atlantotec website that one of the contraindications of an upper cervical adjustment could be a Chiari malformation. Many patients with MS and other neurodegenerative conditions have Chiari malformations. Doctors need to be fully informed and well trained to handle neurodegenerative diseases and complex cases.
I agree 100%. Not all doctors are made equal. My first chiro was fantastic. Now I am going back 20 years. He was a small man an ex Olympic diver whose wife had MS. I tried 2 others after and I knew that within minutes neither one had the knowledge and technique that my first one did. I just shared those sites ONLY BECAUSE OF THE DIAGRAMS AND VIDEO. I am a visual person and when I see it, I get it immediately.
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Re: CCSVI and CCVBP

Post by Liberation »

,,
Last edited by Liberation on Fri Apr 05, 2019 8:24 am, edited 2 times in total.
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irishmum
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Re: CCSVI and CCVBP

Post by irishmum »

Hi Dr Flanagan

I have been following this thread and indeed others regarding the atlas misalignment. I sustained whiplash in a car accident 2001and I had first symptoms in 2002, very minor nothing showed on mri except spondylosis in neck. Then seven years later had more severe relapse and mri showed a couple of lesions nero said it was cis but prescribed copaxone which I have been taking. I feel I am in gradual decline though still mobile, I sufer neuropathic pain and neck pain daily. My neck makes cracking noises when I turn it sometimes especially in the evening. I have always noticed in pictures of myself that my left shoulder is lower and my left leg is longer in jeans. I was interested in ccsvi as my brother was diagnosed with Hughes syndrome and when examined was found to be missing veins in his abdominal area and had collaterals that were doing the work but not as efficiently so that lead to blood cloths in each leg for him. I have been tested for Hughes but they came back negative. Does Doctor Rosa take paying patients at the moment for atlas realignment? Are there any people in Britain using the AO for treatment that you know of?

Thanks for all the time you put into the forum here.

Regards
Marie
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Re: CCSVI and CCVBP

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Re: CCSVI and CCVBP

Post by uprightdoc »

Liberation wrote:...I just sent you recently an email with a picture taken during a posture examination. It looks to me that I have a scoliosis. I am just wondering if this problem might be connected to upper cervical disalignements. Do you think this is the case? What kind of treatment would you suggest in this case? Is it enough to focus only on upper cervical treatment, like toggle recoil or a different approach should be taken?
Hello Liberation,
I haven't recieved your email or images. That said, scoliosis is a complex topic too lengthy to go into here. The short answere is that I always worked on the full spine in all cases including scoliosis. Suffice it to say that scoliosis has many known and suspected causes such as: actual (genetic) and acquired (fractures) differences in leg lengths; malformed vertebrae; possibly genetically short (tethered) cords; aging; osteoporosis; and neurodegenerative diseases. Females are effected far more frequently than males. There are many theories regarding scoliosis and its treatment. So far, no one has solved the problem using heel lifts, special belts, body casts or surgical rods. On the other hand, many patients with scoliosis are perfectly healthy. It is my opinion, however, that scoliosis plays a role in neurodegenerative conditions due to its impact on blood and CSF in the spinal canal. It depends on many factors.
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Re: CCSVI and CCVBP

Post by Sharon »

Hello Dr. Flanagan,

You are doing a terrific job answering everyone's questions ...it is quite an undertaking to keep the Internet hype accurate and balanced- thanks for supporting the TIMS community.

I enjoyed meeting you at Dr. Rosa's last week and was excited to observe the study as well as talk with some of the patients. The work being done by Dr. Rosa (based on your hypothosis) will, I hope, continue to answer the many questions surrounding neuro degenerative disease.

I know that you have cautioned readers but I would like to remind everyone that Dr. Rosa is the only AO doctor in the United States who is using image guided treatment of the Atlas....until the study is completed and until more doctors are trained, patients should be very cautious about seeking treatment.

Sharon
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uprightdoc
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Re: CCSVI and CCVBP

Post by uprightdoc »

irishmum wrote:...I have been following this thread and indeed others regarding the atlas misalignment. I sustained whiplash in a car accident 2001and I had first symptoms in 2002, very minor nothing showed on mri except spondylosis in neck. Then seven years later had more severe relapse and mri showed a couple of lesions nero said it was cis but prescribed copaxone which I have been taking. I feel I am in gradual decline though still mobile, I sufer neuropathic pain and neck pain daily. My neck makes cracking noises when I turn it sometimes especially in the evening. I have always noticed in pictures of myself that my left shoulder is lower and my left leg is longer in jeans. I was interested in ccsvi as my brother was diagnosed with Hughes syndrome and when examined was found to be missing veins in his abdominal area and had collaterals that were doing the work but not as efficiently so that lead to blood cloths in each leg for him. I have been tested for Hughes but they came back negative. Does Doctor Rosa take paying patients at the moment for atlas realignment? Are there any people in Britain using the AO for treatment that you know of?...

Hello Irish,
The only signs you describe are MS lesions but you didn't say where they are located. The only symptoms you describe is neuropathic pain but you didn't describe the type of pain or where it is located. Based on your description, it sounds as though you had preexisting degenerative changes (spondylosis) and possibley scoliosis (abnormal curvatures) in the spine. Spondylosis alters the normal design and mechanics of the spine. It can cause joint laxity (looseness) and instability. Conversely, it can cause fused, stiff and arthritic joints. Moreover, connective tissue degeneration often invades the spinal canal and compresses the epidural space which contains the vertebral veins that are used to drain the brain and cord. As for trauma, spondylosis weakens the spine and makes it less capable of withstanding whiplash forces. The popping sounds you hear in your neck are due to degenerated and dry connective tissue as well as joints that are under abnormal mechanical loads.

I don't know any Atlas Orthogonal doctors in the UK, but Dr. Heidi Grant is in London. Dr. Grant uses the NUCCA specific upper cervical method and she is highly recommended by Dr. Chuck Woodfield of NUCCA's research division. Dr. Grant has treated Silverbirch (aka Twisted Sister) and several other TiMS members.
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dania
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Re: CCSVI and CCVBP

Post by dania »

Having been treated by Dr Rosa and doing research, I am now, more aware how much posture plays a part in all of this. I am making a conscious effort to sit up straight. I am getting stronger. I can do things I was not able to do before being treated. The woman who comes 3 times a week to help me has noticed the improvements and is amazed. Also, thinking back, I did incredibly well for the first 17 years after being diagnosed, and I started to deteriorate when I stopped going to the gym. I use to lift weights 5-7 times a week. I was able to leg press over 400lbs. Heavy weight lifting and I never felt better when I did this. So I now wonder if working out, kept my body better aligned?
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Re: CCSVI and CCVBP

Post by uprightdoc »

Sharon wrote:...You are doing a terrific job answering everyone's questions ...it is quite an undertaking to keep the Internet hype accurate and balanced- thanks for supporting the TIMS community.

I enjoyed meeting you at Dr. Rosa's last week and was excited to observe the study as well as talk with some of the patients. The work being done by Dr. Rosa (based on your hypothosis) will, I hope, continue to answer the many questions surrounding neuro degenerative disease.

I know that you have cautioned readers but I would like to remind everyone that Dr. Rosa is the only AO doctor in the United States who is using image guided treatment of the Atlas....until the study is completed and until more doctors are trained, patients should be very cautious about seeking treatment...
Hello Sharon,
It was a pleasure meeting you and Barbara. I look forward to seeing your scans. What is becoming apparent, and one of the major questions being answered by the study is the role of obstruction to CSF flow in neurodegenerative diseases. The upright scans of the craniocervical junction paint a very clear picture thanks to the hard work of Dr. Rosa working with Dr. Damadian and FONAR. The images of the craniocervical junction and CSF flow are outstanding.
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Re: CCSVI and CCVBP

Post by uprightdoc »

dania wrote:Having been treated by Dr Rosa and doing research, I am now, more aware how much posture plays a part in all of this. I am making a conscious effort to sit up straight. I am getting stronger. I can do things I was not able to do before being treated. The woman who comes 3 times a week to help me has noticed the improvements and is amazed. Also, thinking back, I did incredibly well for the first 17 years after being diagnosed, and I started to deteriorate when I stopped going to the gym. I use to lift weights 5-7 times a week. I was able to leg press over 400lbs. Heavy weight lifting and I never felt better when I did this. So I now wonder if working out, kept my body better aligned?
You can't beat exercise for maintaining health. When it comes to patients with neurodegenerative diseases and co-morbidities such as orthopedic and neurological issues, some exercises are better than others. I will be covering more on exercise as my website develops.
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Re: CCSVI and CCVBP

Post by mtf »

Dear Dr.,

I now have pics , how can I send to you?
mtf
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uprightdoc
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Re: CCSVI and CCVBP

Post by uprightdoc »

Do you have copies of the x-rays or digital images?
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