CCSVI and CCVBP

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
uprightdoc
Family Elder
Posts: 1995
Joined: Thu Sep 30, 2010 2:00 pm
Location: USA
Contact:

Post by uprightdoc » Tue Jun 21, 2011 11:46 am

Hello Colapesce,
I have had other people ask the same question. As far as I can determine it was recently started by massage therapist. His theory is that rotational misalignments of atlas cause major health problems. As far as I can determine he uses posture analysis and palpation to determine the misalignment. He uses soft tissue massage to make the correction. He claims that once corrected you will hold your adjustment and not require further care.

All I can say is the theory is not new but the method is brand new and based on one persons very limited experience, training and knowledge. The claim about holding adjustments indefinitely is absurd. What about patients with genetic design flaws such as fused vertebra. What about patients with spondylosis (degeneration), scoliosis (abnormal curvatures) and stenosis (narrowing of the spinal canal) What about rheumatoid arthritis and EDS with atlantoaxial instability and excess motion in the upper cervical spine. What about Chiari malformations and undersized (hypoplastic) posterior fossas. That's the short list.

User avatar
colapesce
Family Elder
Posts: 156
Joined: Thu Dec 10, 2009 3:00 pm
Location: London, UK
Contact:

Post by colapesce » Tue Jun 21, 2011 11:56 am

Thanks Dr F for your speedy response. I'll pass on what you've said. It worries me because I remember Dr Heidi was very against it and said she's had to see people purely because the profilax method had made them worse.

Thanks again for your reply :)

User avatar
Drury
Family Elder
Posts: 237
Joined: Sun Mar 28, 2010 2:00 pm
Contact:

Post by Drury » Tue Jun 21, 2011 7:08 pm

Hello Dr. Flanagan,

Unfortunately I have not been around for some time and have been frantically trying to read as much as possibly to catch-up.

I thought I left an update here a while ago on my daughters progress but it seems not to be here. I will try again as best I can remember.

She has been seeing Dr. Cindrich now for several months and he has helped her in various ways. She has TMJ from her accident and prior to seeing Dr. C we saw a new TMJ doc who prescribed 2 mouth pieces at a huge sum of $5000 for the two. She had an accident shortly after at end of Feb where she tripped and fell heavily and hurt her cheekbone, mouth, chin etc. pretty badly and another concussion. Dr. C did some serious manipulation where he and another woman held her head and he pulled and realigned her(much to my daughters horror). She continued to see him for several more weeks and did not wear the mouth pieces at all. Dr. C also manipulated inside her mouth and pressed down (painfully) on various points etc. and when she finally had an appointment to see the TMJ doc he said that there was a big change in her bite and that both the mouthpieces needed a lot of adjustment. She did not say anything as she had only worn them for about a week before she fell in Feb so clearly Dr. C's treatment had been working.

Another area that has improved dramatically is her head. Since her accident in 2005 when she suffered brain trauma etc., she has not been able to put any pressure - let alone touch the area on top left side of her head that literally smashed the windshield when she was thrown onto the cab.

Her knees and ankles still go out a lot and I forgot to ask if she is still wearing the hip belt during the day. She has been going back every week for adjustments but her head looks more in alignment and Dr. C continues to adjust her head, back of neck etc., when necessary. He even put his finger up her nose and pressed hard which freaked her out (sorry if too graphic).

She has not seen the AO for a while and is not sure what to do about her TMJ doctor as she has not been wearing the mouthpieces.

Unfortunately she had Strep throat about 12 days ago and experienced pins and needles in her right arm and hand a few day later which are new symptoms along with numbness that spread up to her shin in her right foot. She got really scared and is afraid it is disease progression. She had her monthy Tysabri infusion on Tuesday last week after a course of antibiotics and sees Dr. C weekly to date.

I am sure I have missed out some other important things but I wanted to fill you in as best I could.

Thank you as always.

Drury

User avatar
uprightdoc
Family Elder
Posts: 1995
Joined: Thu Sep 30, 2010 2:00 pm
Location: USA
Contact:

Post by uprightdoc » Wed Jun 22, 2011 12:43 am

Hello Drury,
Thanks for the update. You did post a previous update when you first started with Dr. C and I remember it well.

Considering that the accident occurred over five years ago in 2005 I would say your daughter is progressing fairly well with Dr C and SOT. Your daughter suffered a traumatic head, neck and brain injury. It makes sense to get the head and neck straightened out first before undertaking TMJ correction if needed. The $5000 charge is a ridiculous price for a simple orthotic.

While there are several craniopathic maneuvers that work inside the mouth I personally don't know of any that go inside the nostrils. The doctor was probably working on the side of the nose or inside the mouth on the pallate pressing up toward the nose.

You say your daughter's knees and ankles still go out a lot and she continues to wear a sacroiliac/trochanteric/hip belt. Does the doctor test her leg muscles and does he use pelvic blocks? The pins and needles in the right arm/hand and numbness in the right lower leg/foot started at the same time following the strept throat. It's a good possibility they are related to her spinal condition and not necessarily progression of MS. See how she does after her next visit to Dr. C.

User avatar
civickiller
Family Elder
Posts: 558
Joined: Thu Feb 04, 2010 3:00 pm
Location: Hawaii

Post by civickiller » Wed Jun 22, 2011 9:48 pm

This sucks, I thought my alignment was holding but it's not. Although I did fall Kinking my neck so that probably caused my alignment to be off. So I didn't get new xrays, I guessi have to wait till I hold my alignment for a few months

Anybody saw montel Williams and his UCC experience?
I'll see if I can find the YouTube video

User avatar
uprightdoc
Family Elder
Posts: 1995
Joined: Thu Sep 30, 2010 2:00 pm
Location: USA
Contact:

Post by uprightdoc » Thu Jun 23, 2011 2:13 am

Hang in there Civickiller. You are on the right path. You can't go wrong getting your neck corrected.

User avatar
Kathyj08
Family Member
Posts: 74
Joined: Fri Jan 08, 2010 3:00 pm
Location: Indiana, USA

Post by Kathyj08 » Fri Jun 24, 2011 4:27 am

Hello Dr F.
I believe it was a couple months back I read where you were suggesting one of tims members to do a LDN flush?
I think it was on your thread and am curious. I have been wanting to give it a break lately and didn't know if it was a big deal to start and then stop and then start again.
I have been taking 3mg. for about 9 mo. now. I really don't have any problems with it, but it seems I've heard it mentioned before to clear your body of it from time to time.
My gp that prescribes it for me has no other patients she prescribes it for so she has only the knowledge of what she has looked up on the internet.
Was that you and if so, what was the reason?
Thank you Dr.
Kathy

User avatar
uprightdoc
Family Elder
Posts: 1995
Joined: Thu Sep 30, 2010 2:00 pm
Location: USA
Contact:

Post by uprightdoc » Fri Jun 24, 2011 8:00 am

Hello Kathyj08,
Some physicians prescribing LDN suggested giving it a rest mostly to prevent patients from getting used to it and the drug becoming less effective. In some cases, however, patients seem to get more sensitive to it as they continue to take it. More recently, others physicians say it isn't necessary to give it a rest and flush the system. What's more, it seems most people have more symptoms initially when first adjusting to and attempting to find the right dose to take long-term. Some doctors feel low dose should be 1.5 - 2mg and moderate 3-5mg. 4.5-7 is high dose for MS.
In brief, it sounds more like a hit and miss situation so it is good to work with your prescribing doctor and keep a diary. Some people do better with a very low dose and some require more while other require a break from time to time. Ironically, muscles spasms and joint pain are one of the more common side effectst to watch for clues about tolerance and dosage.

User avatar
uprightdoc
Family Elder
Posts: 1995
Joined: Thu Sep 30, 2010 2:00 pm
Location: USA
Contact:

Post by uprightdoc » Mon Jun 27, 2011 4:09 am

Hello all,
For those of you who are interested, the link below is to my wordpress blog. At the bottom of the page in the comments and replies section is a series of exchanges between Dr. Schelling and myself. This is the kind of professional dialogue we need to move this research forward.
http://uprightdoctor.wordpress.com/zamb ... schelling/

User avatar
uprightdoc
Family Elder
Posts: 1995
Joined: Thu Sep 30, 2010 2:00 pm
Location: USA
Contact:

Post by uprightdoc » Mon Jun 27, 2011 8:37 am

TiMS member Johnson contacted regarding his case and granted premission for me to post his history. I am posting it because of its relevancy to MS and trauma.

I am a 50 year old male. I am 6'1" tall. I'm not sure if I can relate my symptoms ("MS") to UC issues or not. I do have stiffness in my neck, with crunching and cracking when turning my head. My head is cast forward when walking or standing.

Being male, I have had my share of head and neck trauma throughout my life. One instance stands out in my memory: when I was about 11 years old I fell through a rotted barn floor. My chin hit a beam on the way through and my head snapped back and the back of my head hit an opposing beam. I fell about 9-10 feet, and was briefly unconscious. I do not recall any other overt whip-lash type situations. Posture is an issue for me (it is not terrible, but not great either. I have no back pain at all. I have a strong back and worked hard in my younger years.

I had severe TMJ dysfunction that started when I was about 15 years old and by age 33 I had all wisdom teeth removed along with all mercury amalgam fillings as a result. The TMJ problems did seem to very slowly resolve, but I don’t think it was in response to the removal of the wisdom teeth.

I was about 25 years old when I woke up one morning about 25 years ago with my chin locked onto my left shoulder. I couldn’t move it from that position. When I tried to move it, it felt as if it would break. I went to hospital ER, where the attending MD grabbed my chin and twisted my head, causing excruciating pain. I felt lucky that he did not paralyze me. I went to a chiropractor that afternoon and discovered that two vertebrae were locked in a turned position. They told me that likely, I had turned my head in sleep, and when I turned it back, those two vertebrae (I believe it was C2, C3) had remained in the turned position.

I had severe and continual headaches in the couple of years before the first “MS” symptoms manifested. I do not get headaches now. I haven’t had them for about 17 years. In addition to the headaches, it is interesting to note that at the onset of all of the “MS” phenomena, I had a pink/brown fluid discharge spontaneously from my nose and right ear. I described it as synovial fluid (for lack of medical expertise and terminology), and no otologist, neurologist or MD has ever found that to be remarkable. I have never had a recurrence of that discharge. Of further note, it was before any “MS” symptoms that the ear trouble started. I got a “cold” in Lisbon, and flew to the island of Madeira. My ears would not clear from the pressure during the flight, and took almost a week to resolve after landing. The onset of “MS” was about two years after that. Neurology says that it is ontological, otology says it is neurological. Neurology has finally admitted that it might be a brain stem manifestation, which fits with some of what you are saying..

About six years after the episode of the severe stiff neck, at the age of 32, I had my first "MS" symptoms. My first symptom was left side ON. There was also a strong nystagmus (lateral) especially on the right lateral gaze. I did have an unremarkable ON begin in my right eye about 4 years after the onset of “MS” symptoms, which I resolved very quickly (24 hours) with the intake of massive doses of grape seed extract, and fresh carrot/beet juice. It was mostly a “pulling and heaviness” in the right eye, which never developed into a full ON.

I have had 3 PTA treatments, with the last one employing IVUS. It was found that I have septa and duplication in my IJVs - certainly not caused by spinal misalignment, but the PTAs do not wholly resolve the symptoms either such as: ON, nystagmus and diplopia, current dizziness, falling to the right, fatigue and minor digestive issues described as a lack of motility in the organs by a cranio-sacral massage therapist. I do not feel that venous stenosis is the whole picture, as my venous malformations are congenital, and my first "MS" attack was at the age of 32. I believe there is a constellation of issues that add up to "MS", and believe that cervical issues might well play a part in my own case.

My neck still "locks" sometimes and I need to be careful how I turn my head. I have had chiropractic adjustments over the years - when the situation is "critical". The DC has adjusted the Atlas, but he is a standard DC (though a good one). I am also curious about benign paroxysmal positional vertigo (BPPV) as tilting my head back to look up, lying down, and other positions exacerbate my dizziness. I am completely deaf in my right ear after years of minor ear infections. The loss of cognition is my most egregious symptom, at this point. My brain feels as if it is swimming in molasses.

User avatar
Interrupted
Family Elder
Posts: 240
Joined: Sun Jan 14, 2007 3:00 pm
Location: UK
Contact:

Post by Interrupted » Mon Jun 27, 2011 3:19 pm

Sorry to be a slow one UprightDoc, but as I don't stand a hope in whatsit of reading 81 pages, is there a summary of the majority of this thread anywhere for us cogfoggers? And a lowdown of what specific type of chiro is needed to talk to and pass the info on to?

Thank you in advance :roll:
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.

User avatar
uprightdoc
Family Elder
Posts: 1995
Joined: Thu Sep 30, 2010 2:00 pm
Location: USA
Contact:

Post by uprightdoc » Tue Jun 28, 2011 1:44 am

Hello Interupted,

I remember your case well and have it in my notes. You fall into the migraine variant category and have tried many different types of alternative health care.

Migraines and female problems such as yours are complicated and require careful attention to details to get to the causes. Nonetheless, specific upper cervical is a good place to start in managing cases like yours. It will help with blood and CSF flow going into and out of the brain. There is only one upper cervical doctor I know of in the UK and that is Dr. Heidi Grant in London.

User avatar
NZer1
Family Elder
Posts: 1624
Joined: Thu Feb 18, 2010 3:00 pm
Location: Rotorua New Zealand

Post by NZer1 » Tue Jun 28, 2011 2:00 am

http://www.erinelster.com/articles.aspx?ArticleID=278

No doubt this will have been seen on other threads thought it should be here as well.

Picking up my CD of the xrays tomorrow, and the Radiologists opinion as well I guess.

User avatar
uprightdoc
Family Elder
Posts: 1995
Joined: Thu Sep 30, 2010 2:00 pm
Location: USA
Contact:

Post by uprightdoc » Tue Jun 28, 2011 6:06 am

Good luck Nigel,
It will be interesting to see the results.

User avatar
HappyPoet
Family Elder
Posts: 1414
Joined: Thu Jul 09, 2009 2:00 pm
Contact:

Post by HappyPoet » Tue Jun 28, 2011 10:19 am

Hi Dr. Flanagan,

Reporting in with an update:

My last adjustment held for 2.5 months before reappearance of numbness in feet and painful torso symptoms ('MS' Hug). My appointment resulted in something quite interesting...

I participated in a randomized, double-blinded study of 41 patients that my Atlas Orthogonal (AO) chiro, Dr. Craig Wehrenberg, and three other doctors are doing that measures, via US, blood flow velocity through the carotids and jugulars and measures, via upright MRI, CSF flow before and after AO upper cervical chiro (UCC) adjustment.

Immediately after my adjustment (not sham arm), a notable increase in CSF flow was measured. I sure do want my CSF flowing properly!! Also, all the tender, sore areas on left side of my neck immediately, completely disappeared just like magic.

Two days after the adjustment, the numbness in my feet had receded 100% and the spasticity in my torso muscles had been reduced 75%.

UCC works, so stick with the program, everyone. Over several months, I went from needing adjustments every 2-3 days to needing them every 2-3 weeks to needing them every 2-3 months now = the best investment of time I ever made.

Dr. Flanagan, in my treatment plan with you, when do I take the next step toward overall spinal health, and what is that next step? A quick reminder: 1) You have my CD with X-rays done by Dr. Wehrenberg, 2) In addition to my head tilt, you said I have spinal stenosis, scoliosis, and spondylosis, 3) I have ON, T4-T9 lesions, and many brain lesions, 4) I had CCSVI venoplasty with improved balance and color vision and acuity, and 5) I have missing/attenuated intracranial dural sinuses.

Thank you very much! :D

~~~~~~~~~~~~~~~~~

Hi Johnson,

Dr. Flanagan will be able to help you. Thank you very much for sharing your story which will help many others who are still searching for help with their neurological symptoms. Trauma can play a large role in our "constellation," and we'll need multiple disciplines to solve our problems.
I look forward to reading your updates! :D

~~~~~~~~~~~~~~~~~

Hi Interrupted, I hope the following is helpful...

This post on page three gives an overview of CCVBP (and other conditions): http://www.thisisms.com/ftopicp-136699.html#136699

My attempt at a written summary of CCVBP: A misaligned Atlas vertebra (C1) and/or Axis vertebra (C2) can slow CSF flows and compress nerves, veins, and arteries resulting in brain and spinal lesions due to forces of venous back pressure. UCC corrects the misalignment between the bottom opening in the skull and the top of the spinal column using quick, painless adjustments of the vertebra. I use Atlas Orthogonal (AO), which is one type of UCC, and I love having my head on straight. :D

~~~~~~~~~~~~~~~~~

Hi Nigel,

Thank you for keeping us up-to-date with Dr. Flanagan's blog.

:D

Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”