This Is MS Multiple Sclerosis Community: Knowledge & Support

After reading Dr. Flanagan’s book and communicating with him, I had x-rays taken and learned that I had a rather complex constellation of structural cervical conditions that impede the flow of cerebrospinal fluid in addition to impeded blood flow in both jugular veins. UCC finally has given me the relief that I did not get with venous angioplasty of both veins. I wish I had done UCC first and then investigated my veins. I had the cart before the horse. After a few months of cervical stability, I will take stock of my status and get new images of my veins.

I am starting a separate thread so as not to get lost in the many pages of Dr. Flanagan’s thread. My purpose is to strongly encourage any of you with symptoms involving the head and neck (dizziness, brain fog, etc.) to try upper cervical chiropractic prior to angioplasty (orthogonal, NUCCA and Blair are the ones I know about.) It is simple, gentle and in my case very effective. While UCC appears to help other CCSVI symptoms for some people, I can speak only for my own rather severe head issues. While my peripheral numbness, bladder problems, etc have not yet improved to the degree that my dizziness, cog fog and pressure have, I am once again feeling optimistic and hopeful. I have a life again.

I would also like those who are interested in researching UCC to know that it is not a quick fix. It may take weeks or months to optimally affect structural defects. Also, I would like to encourage use of a chiropractor who specializes in upper cervical work. Hopefully one who has enough interest in your case to take the time to read Dr. Flanagan’s book and learn more about CCSVI and why UCC care may be important in your specific case.

I am deeply indebted to Dr. Flanagan. His insight has been a life-saver for me and I hope that interventional radiologists and vascular surgeons working with CCSVI patients will take structural issues of the head and neck into serious consideration as they evaluate patients. A set of X-rays added to the testing protocols could provide significant diagnostic information not otherwise available.

My best to each of you seeking solutions.
Montana

Montana,

Welcome, I found your post very interesting. I too am from Montana.

My background is that I had an MRI & MRV done at Stanford University, in California, in 2010 and Dr. Dake said that the findings infer the possibility of valvular abnormalities.

I have not had the procedure yet, and I’m still holding some hope of receiving a call from Stanford to be a participant in the trials. I believe Joan said the Stanford Trials were a GO.

In the meantime I have been seeing a UCC also and have received some improvement in mental clarity and my vision improved some. It got less dark & foggy, not that it got clearer or that my RX changed, just brighter and clearer, like more light was getting through.

While I continue to wait and see if the Liberation Procedure is in the near future for me, this is an alternative that does seem to be helping.

Lora

Having used UCC since Nov/2010, I definitely had structural changes - after the first adj actually. My trunk and hips were slightly rotated and I sat very crooked in my wheelchair. Now I'm definitely straighter - not perfect but MUCH better. My hips were 7.5 degrees out and after first adj went to 2 degrees out. Adjustments are painless.

While the Liberation procedure - Sept. 2, 2010 - and UCC haven't helped with my symptoms (some numbness, weakness, bladder problems) as yet - who knows down the road.

montana, first let me tell you how happy i am for you that you are seeing improvements. in fact if i could jump i'd be jumping for joy.

this is not about putting ccsvi down or pitting chiro. against ir's or vasc. dr.'s. all these great doctors will always be our hero's. and the fact that they took on a disease that they really knew little about--only that their procedure was helping some people that had symptoms that had been named ms. and, they are still trying to figure out the safest and best way to do it. and, i still feel they truly want to help us. but, if they have dr. flanagan join the ranks, maybe they will get a better understanding.

my hope as yours is that they are more open minded than what other main stream medicine has been. if they are going to do this procedure-then they should take into consideration the fact that there could be different reasons these veins are like they are before doing it at least rule out these things. they may have more success at keeping these veins open and they could work together at getting the best results--even if at this point it is what is called "theory." ccsvi was a "theory" a short time ago.

i too put the cart before the horse. and, i had been seeking answers
for 20 yrs. my first trip anywhere after i had a bad trauma was to a chiro.
but through the yrs. i did not realize that there were so many kinds of chiro.'s etc.

then because of ccsvi, dr. flanagan, comes to light here on tims. everything makes sence and i am so grateful that "costumesnational"got him to bring his knowledge here. my bones have been screwed up a long time and hopefully it's not too late for me. but, it isn't too late for a lot of people here and i think we owe it to ourselves to check it out.

dr. flanagan is not doing this i feel for any other reason than- he has done the research not makeing a dime-he understands it-he's seen the results-he believes in it-he "can actually explain a lot of stuff, and on and on.

it really is the chance of a lifetime here to "finally" do what should have been done yrs. ago-and that is to bring what a skilled chiropractor "who is normally poo-pooed by mainstream medicine-into the picture right along with the shall we say "acceptable" way of treatment. it's cost effective-safe-and it makes sence. "maybe that's been the problem!!"

i am soo grateful to dr. flanagan for shareing his knowledge and advice with me. i have never had the pleasure of a dr. of any sorts take such an interest in "me" and "listen" and "advise". "he actually listened". and though his advice i am with a chiro. "craig weimer"that i feel "truly" wants to help me. and, when i go as far as i can with this--i know any advice given me will be for my benefit--not to make them rich.

so, montana, your testimony, is not going to go unnoticed. it will not get a shoved under the shelf and ignored. we won't let it "WE HAVE THE INTERNET. "

oh, and the only "Side Effects" you got from these upper cervical treatments were that "You Are Feeling Better And Some Of Your Symptoms Have Gone Away." remarkable, you got that much relief from a treatment that has never been allowed access to a penny of the cabillions of dollars out there spent on all these worthless drugs and research that is deemed by mainstream, fda approved with tons a tons of paper work -- that hasn't done squat--but make people sicker and keep people coming back.

thank you again Montana, and may you continue to heal!!

even after my windy post, i have got to add this--and i'm sure most already know that have been to chiro.'s. most insurance i know of pays little towards chiro. if any. this ticks me off because it is the same deal it makes it tough or impossible for some to do it. but, if any way possible check it out. it's not near or even close to the cost of treatments ins. does pay for. sounds familiar right?

Interesting post - glad you've found some relief!

I'm doing things the other way around - I've been seeing a chiro since January '09. I had quite a curvature of the spine and my cervical spine was straight instead of gently curved.

These things are much better now but my cervical spine never holds it's position so I get adjusted about once a month.

I always feel some relief after the adjustment but it never lasts very long.

Once when my usual chiropractor was away on holiday someone else did my adjustments for me and it was horrible. She snapped my neck around quite violently and I felt a horrible surge in my symptoms for about a week until my normal lady 'put me back' into position.

She usually takes a gentle approach with me and knows what I can and cannot tolerate.

Chiro alone is not giving me full relief from my symptoms but perhaps if I had the angioplasty then the comination of the two would work?

Maybe the chiro wouldn't have worked as well for you if you hadn't had the liberation procedure done first?

Interesting post!

CindyCB

_________________
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.

Glad you see improvements.

In my case a heel lift -"blessed" by Dr. Flanagan- has done wonders for my L'hermit. I can now bend my head without noticing the buzzing sensation.

Some improvements have developed lately after 4 months of wearing the lift. My legs used to have a little burning sensation. Now its frequency and intensity have been reduced in - i would say- 90%.

Although my chiropractor is not specialized in the upper cervical area she handles me so well and puts me back into position every time I go see her. Just recently I have noticed that every time I had a dizziness problem my C1 (Atlas) needed adjustment (she uses activator), and after adjustment dizziness simply disappeared.

bump

Hello Again,
I’ve had a number of PM’s in response to my original post. Each had similar questions related to this thread, so I thought perhaps it might be helpful to add a few things. Yes, I do have MS. Diagnosed 23 years ago, but only after it became so severe that my symptoms could no longer be dismissed as “psychosomatic.” I recall episodes as far back as age 16 that I now recognize as MS symptoms. That is approximately two years after a traumatic diving accident that I now know from my cervical x-rays injured C5 & 6. The resulting damage and fusion in C5/6 is very old. I have another more recent fusion at C2/3. C 1 is prone to movement that interferes with the flow of CFS leaving my head. All of this probably indicates stenosis in the upper spine. If you saw my x-rays you, too, would suspect this. My cervical spine is almost straight with minimal natural curve and I have little range of motion in my neck. Thus pressure in my skull, dizziness, headaches, shortness of breath are markedly alleviated as long as my cervical spine remains in alignment. It is touch and go keeping it in there, however. I’m a tough case. If it is in good alignment, I feel great. If it’s not, I feel like doggy-do.

I’ve had an athletic (if somewhat clumsy) life with lots of mishaps and recall traumatic incidents involving my head and neck such as a reckless toboggan run that cold-cocked me, a scary ski accident, three automobile whiplashes, several bad falls in mountainous terrain and more. My neck took the brunt of much of it.

One person asked me if a chiropractor told me that my cervical problems caused MS. No chiropractor has told me my MS or CCSVI is caused by the cervical problems...no one knows this. I suspect it is like a stack of dominoes, one thing goes down and others follow in time. Which comes first the chicken or the egg? Heredity, head & neck trauma, virus, congenital issues?

My purpose in posting is to draw your attention to the possibility of cervical problems impeding CSF flow in addition to the possibility of venous problems impeding blood flow. Either can cause neurological problems. Again, I suggest Dr. Flanagan’s book THE DOWNSIDE OF UPRIGHT POSTURE. I will also tell you that I had to read it carefully twice with a highlighter in hand to absorb it all. His knowledge of the anatomy and physiology of the head and neck are impressive.

May I also suggest another book: THE EMPOWERED PATIENT by Elizabeth Cohen, Senior Medical Correspondent for CNN. It is a quick read. She advocates we employ unyielding curiosity and be unrelenting in our research for answers outside the box. Together we can be an educated force for change in how medicine thinks of MS and CCSVI. Power to the people and the CCSVI Alliance. The latter is doing an absolutely amazing job of educating physicians who will help us unlock the mysteries of our bodies. Please support the Alliance with your contributions.

i am seeing a ucc chiro here in hawaii since 12/10. i wanted to get ucc before being liberated. my first 4 visits showed improvements but my last 3 showed no improvement and my atlas is still off. i am gonna continue seeing him once a week and tell other pwms about ucc. i believe in it so much that im gonna pay for my mom who has tmj, fibromyalgia and my friend who has ms to see the ucc dr i go to

montana, thanks for keeping us posted. i like that it is bringing in the testimonials of others also who are following flanagan and trying this.

i agree power to the people and don't quit looking outside the box. i also agree ccsvi alliance is doing great things and should have our support. i know cheerleader acknowledged dr. flanagan. i know of nothing else i could be wrong. what i hope to see someday soon is dr. flanagan and his research -and knowledge- included equally-as important- as the other things- being studied-and accepted- in the scheme of things since ccsvi came on the radar. chiro.'s in general are poo pooed by mainstream even ins. co.'s. but his research goes far beyond the usual norm of chiropractics in general. i would hope that soon the out of the box thinking and ccsvi alliance includes him. he is needed in this research if we are to ever get these symptoms called ms figured out.

you and others are liveing proof of that.

Hello Everyone,
I started to see an Upper Cervical Chiropractor in Montana before my husband and I left in November for California in our motorhome. I was keeping a journal and noted feeling some good improvements in my cognitive function as well as increased function in my right hand. I was actually able to hold a pen and write my name legibly. It also was helping the discomfort in my lower spine and diminishing the MS hug. The UC Chiro’s only adjust the Atlas at the top of the spine. The problem is it’s a very specialized field and UC Chiro’s are not as easy to locate as a regular Chiro. So I’ve lost what I gained since we’ve been here in Napa, California. But I am definitely planning on continuing my UC care upon returning to Montana.

According to what I’ve read at Tim’s the Stanford trials have started or are do to start anytime, I’m not sure which as they have not contacted me personally. It’s OK, even though I have my MRI & MRV from Dr. Dake we have been here now for 4 months and are anxious to head down to Arizona for the next few months. If I’d just be a good girl and watch what I eat, exercise and get proper UC Care I’d probably do better. But eating well is hard to do when there are such wonderful desserts around at the Holidays along with world famous restaurants and fantastic wines everywhere around me here in the Napa Valley. I guess if I made better selections off the menu’s and passed on the wine and desserts with dinner I’d do better. But I’ve been a little lax lately and am paying the price. Can’t blame that on anyone but myself.

Lora