This Is MS Multiple Sclerosis Community: Knowledge & Support

thanks blossom. Actually, I ll upload another upbeat cheesy tune later today. I am producing a techno - trance demo cd but it can get very complicated in the mixing process so, I take a break every now and then, writing some electro melodies that come into mind.

hopefully i wont be the only one who gets some relief from this monster but soon all of us will. that's why i am trying to share every thing i consider of some importance.

again, i believe CCSVI is a fact. my brain issues have subsided considerably but it seems that in my case there are more factors contributing to my progression.
never stop to look what may be wrong with your body. never stop. there IS a reason that it misbehaves other than bad luck.

I think there is a connection here for me as well with a history of neck injuries. I wrote on George Jelinek FB site to get his opinion and I also put a link on Ashton Embry's FB site, and a mention on DrS's page here on TiMS. I personally think there is more to be learned here and hope that the people I have linked will look into the possiblity of a CCSVI connection. The restriction to the thecal sack must have an influence on blood flow through the cord area.
GayleandNigel Wadham Hi George I have been looking at the comments made by Dr Flanagan about the injuries of a person on the bottom of this link. Costume national has similar problems MS to the problems I have as a dx of PPMS.
http://uprightdoctor....wordpress.com/about-ccsvi/
To continue,I have problems at C2 and disc degeneration at C5/C6 that has a compression of the thecal sac which is described in the dialogue back and forth from Costumenational and Dr. Flanagan. I had treatment for the neck problems by a M...uscular Skeletal Specialist who also sent me to a Cranio Sacral therapist, who said there were problems with fliud flow in my spinal cord near the area in question. When I had a lumbar Punch soon after to help with MS dx I had severe Head Aches for six weeks plus which eventually over months subsided.
The Musc/Skel Specialist said they did as much as they could for the neck and rotator (both sides) tears and I would have to live with the residual problems and to continue with the search for an explanation of the MS type symptoms. It took a further 18 months before a 20mm legion was found on the C2 area as well as 4 lesions within my brain.
After reading the situation with Costumenational I am interested in your opinion of my situation and any recomendations for me. Thanks in advance, Nigel.

I understand that you don't have enough info to give an opinion of substance, I am interested to know if I should follow up on what was originally found with my neck injuries. At present the DHB Neuro has told my GP there is nothing more he can do, and to contact if anything dramatic happens to indicate a relapse type situation, whereby I would be put on IV Seriods. This was tried when my eye sight started to become slowly effected, and VEP's indicated slowed reaction from my right eye, it had no benefit at all.See MoreAbout CCSVI | Alzheimer's, Parkinson's and Multiple Sclerosis
uprightdoctor.wordpress.com
Apparently Zamboni and others have been having significant success, so much so that research is currently underway around the world, including the University of Buffalo in New York. Justification for the liberation procedure is based on ultasound scans showing evidence of venous stenosis. There are ...

I am glad you are searching for a connection between your problems and your neck injuries. That is what i was hoping for when i shared my news.

Neurologists told me 2 years ago that i was RRMS but obviously this is not the case. I am convinced that pressure on the brain stem will contribute greatly in my progression as years go by, thus i am going to do everything possible to fix that serious C2 misalignment. With the hope that the rest of my neck problems lower will somehow resolve also.
Chiropractors tend to believe that if you help your body, it will most probably help you back. Wishful thinking? Maybe, maybe not.

I strongly suggest that you should contact Dr. Flanagan.
If a chiropractor cannot help you or me we are in deep shit. I only say this cause decompression surgical laminectomy is the only alternative which is a very risky procedure that can cripple us. Not to mention that there is no doctor crazy enough to do it just because we have MS.

Good luck and keep us posted.

That sack compression of mine could indeed press my vertebral plexus causing CCSVI. Dr Flanagan is convinced that this is the case.
Today it s my first session with Dr Koontz. I ll update this thread asap.

Forgive me for posting this in the CCSVI thread. I do it because improvements after my liberation are only partial. Yes, CCSVI helped a great deal so far but not to the point to convince me that it was my only problem. Especially when i realized that my legs had started to deteriorate even though the rest of my improvements are stable to date (mostly brain issues but not only). And of course there are no new lesions in MRI but i never thought it really matters anyway.

ok here goes:

Yesterday i found out (actually i saw) that apart from the axis my atlas is misaligned also. Dr Koontz consulted on my x rays with two other Chiropractors abroad and decided to start by adjusting my atlas (C1) even though the problem is not as serious as the problem with my axis (C2). Because of its greater importance in the anatomy of the spine, the adjustment he did hopefully will help with my axis misalignment. If not, he will go ahead and try to fix it.
All i can say at this point is that the crack i heard when he pressed that bone was not something i would have expected.
Dr Koontz is the most caring person i have met since my battle with MS started. The way he explained things to me just make sense, exactly like CCSVI theory does. And of course he knows what he is doing.
If indeed these upper cervical problems are pressing my brain stem then it shouldn't take more than 6 months for me to begin to see some improvements. I ll keep you posted.

Just for the record, as with CCSVI, chiropractors SHOW the problem to you instead of trying to explain something they dont have a clue about and they see serious vertebrae issues as one more possible reason one would suffer from CCSVI.

I realize that this whole chiropractic thing is not exactly what one should call "BIG NEWS". But Dr Koontz told me that the medical association was trying really hard to put the breaks on them for the last 60 years. This is the main reason that their work is not well recognized according to him. For some strange reason... i believe him.
Hopefully this will change since now they are free to practice in the states.

I also realize that whatever i suffer from wont cease to exist. But if i manage to take out of the equation the mechanisms that worsen it then there are some chances for me to have a life closer to normal.

At some point i felt like i was on a witch hunting i must admit. I then thought the alternative. Drugs. And i was right back on track.

Thank you for the up date I have been reading more of Dr Flanagans writings, I think he has part of the answer that CCSVI is not able to answer. I believe the CSF is also part of the equation and the way fluid supports the brain and if the Brain stem or cord are in contact with the spinal column there will be problems with the veins within the spinal cord as well. The way that venous drainage is effected by the skull and spinal column is very important news for CCSVI. Please let us know how you go! PS I ordered Dr. Flanagans book.
Nigel
CCSVI in New Zealand (Facebook)

Nigel, yes, Dr Koontz talked to me about CSF and they way they think it's flow could be altered by vertebrae issues.
Please have in mind that most probably the greatest portion of ms patients has no upper cervical spine issues but still they suffer. On the other hand, Zamboni managed to find a link between most of us.
I respect Dr Koontz because he admits that apart from what he can see he knows only a little about how each patient's body reacts in every triggering mechanism. Of course that goes for neuros too but they wont admit it.

Dr Koontz told me that he really thinks that the condition of my cervical spine is bad enough to give me problems. He is convinced that if it wasn't ms it would be something else, less important or more. Now or later. It s kind of generic if you ask me, but combined with a picture it can be very persuasive.

I really hope that many of us including myself will be benefited from upper cervical spine adjustment. But with MS it s a lot more complicated than seeing a chiro for headaches.

If you have neck pains, a serious head or neck trauma or you simply suspect that your upper cervical spine needs inspection then go ahead and check it out. Like Dr Flanagan says, there is nothing to loose and potentially a lot to gain
I am not saying that i will be cured. But i am convinced that that damage is what brought me in this condition along with blocked veins. Hopefully by fixing it 10 years later i ll have some further relief.
I ll keep you posted.

i soooo wish you the best. as i've always said for "me" it was the fall. i've been snapped i've been popped i've been jerked and twisted fought with neuro's you name it. if only i would have the access to info. back then and could have come across someone like dr. flanagan. but it is what is right now. so, i feel no apology from you is needed for bringing this info. here. "thank you". this is about ccsvi. whatever helps. please please keep posting. i hope somehow i find a "qualified" chiro. like you found. i'm not knocking any chiro. but just like the dr.'s that are doing the ccsvi it can make a big difference when it comes to specialist and experience in any field as to your outcome. and one of rhe most important things is the passion like your dr. has or dr. flanagan, shelling, zambonni, sclafani, hubbard and these kind of dr.'s are gonna make the difference for us. thanks again.

Thanks for you feedback.
The more you have made me think about this the more I am able to understand my reasoning. The co-incidences that are emerging from the work of Dr. Flanagan and his speciality are in my view important in some way. The cross over between MS symptoms and the symptoms associated with clavicle/thoracic alignment and other connections that Dr. Flanagan has offered is in my view important to the whole understanding of MS.
There is too much coincidence with lesions on the spinal cord and spinal alignment not to look into this more. Yes it could be said that the two processes have the same outcome and it is also caused by two differing actions. One is permanent and the other not. The key thing I think is that there are times when the two co-exist, and there will be times when a PwMS's posture will compound their symptoms because of a different cause, but at the same sight.
If a PwMS has a lesion on the cord at C2 for instance and their posture is effected by the 'MS hug' there could be alignment putting pressure on the lesion and exacerbating the lesion because of alignment.
The CSF pump effect is something that I had experience with prior to my dx of MS and it was because of an injury at the same time. I had a specialist helping me with Rotator cuff tears and neck alignment at the same time as my MS symptoms became distinguishable. She had trained in Cranio Sacral therapy and told me there was a restriction in the flow in my clavicle/thoracic region. At the time this did not mean anything to me or the Muscular/Skeletal Specialist. Reading Dr. Flanagans work has linked the research I did at the time in a way I could hypothesize there could be a connection to lesions and CSF flow restrictions.
Because I have C2 lesion 20mm and C5/C6 disc bulge and disc degeneration plus other compression issues it is hard not to speculate. And I know that others will not have these issues though the CSF flow and cord lesions may be a connection to progression only, as we loose posture because of our disease.
Looking forward to hearing your updates.
Nigel

costumes,gave me a good laugh.

I feel that here is absolutely a connection with CCSVI, and I believe another connection is chronic bacterial infection, and combinations thereof.

For the cervical angle; if your vertebrae are impinging on your vertebral veins, that might well cause stenosis in other veins far distant. I think of Mr. Fletcher's (IBT) demonstration with the tubing, and all the stenoses that showed up in that tube. Is it a coincidence that you have lesions at sites where there are osteo-pathologies? I don't think so.

I have been on the cervical thing since before CCSVI came along, and the bacterial angle. To me, CCSVI is the lock of "MS", and cervical, bacterial, and I'm sure a few other things are the mechanisms of the lock. I suppose we are the keys that will unlock it.

The first thing that I wondered when hearing of CCSVI was "what causes the stenoses?" I am not satisfied that congenital malformations cause it - though, my three year old has a very hot head, and a lot of symptomology that I recognize (he's pretty clever, so maybe it is the cerebral work-out). My wife works outside, and so had tons of Vit. D synthesis going on during pregnancy. I think that there may be a congenital propensity, but not caused by maternal Vit. D deficiency in exclusion - as has been proposed by experts more expert than I (I don't quite understand how they can be so sure about that).

I like your style, S., and I like your tunes too.

_________________
My name is not really Johnson. MSed up since 1993

I completely believe that my darling man's broken neck and subsequent neck surgeries contributed to his PPMS. I also believe CCSVI is a big part of the problem. Since having the procedure, on Tuesday, he told me again tonight that he's starting to feel his feet and toes again. They've been numb for years.

Unfortunately, I'm not sure if he can pursue other avenues because of the surgeries. His neck vertebrae are completely fused. He has no range of motion in his neck at all. The last surgery, in 2005, finished the job. Interestingly, his symptoms got worse, and two years later he got the MS diagnosis. I don't believe in coincidences.

Cosumenastional writes

No, Costumenastional, it is NOT changing in the states--you say they are free to practice--yes, BUT the insurance companies, esp our "national" one, medicare, do not recompense at the same level as for medical doctors--with medicare (which is for the disabled and those over 65), chiropractors are not reimbursed AT ALL for the initial visit (with MD's, they get full reimbursement, and the fee for intial visit is usually at least twice what it is for followups)--and they are given only about $50 per visit, whereas regular MDs get about $100 per visit from medicare. So, I would say, there is still great discrimination against chiropractors here in the states. Even in NYC I am having trouble finding a good chiropractor that will accept my insurance--many run of the mill Chiropractors (just like regular MD's) accept the "lesser" insurance, but quite often give poorer treatment. And most MD's will not consult with your chiropractor--they do not consider them to be at their level.
When I first got so ill, after severe head and neck trauma, I was told by MD's that I would end up with a broken neck if I saw a chiropractor! So, for a number of years, I saw just regular MD's, and of course, got only worse.

sbr487
do you have some sort of Chiropractic Association for your state or province?
that type of organization should be able to direct you to chiropractors who deal with upper cervical problems.

Yes, Shye. I was looking at the local franchises associated with international chiro ... I have found couple of them. Right now there are only 4 (they look authentic to me). Unfortunately, they are not in the same city where I live.
But city of Bangalore is not very far from where I stay ...

_________________
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck

Hi all,

I started seeing a new chiropractor in Feb., 2007 after reading this:

http://www.meningealrelease.com/index.p ... &Itemid=80

I went twice a week for the first year and once a week since then. I am SPMS, at EDSS 8.0+. He adjusts my neck and my lumbar & thoracic areas as well, stretches my legs for me, and gives me a 20 minute acupuncture treatment designed to increase circulation in the upper spine and brain.

I had progressed from perfect health to EDSS 8.0 in just eight years before I started seeing him. Although I haven't improved, the rate of progression has slowed to a standstill. It may be a coincidence but, even if it is, I believe it is important to keep my skeleton as supple as possible, seeing as I spend my life in a wheelchair.

My insurance covers about half of his fees (but I wonder sometimes if he has taken me on as a challenge for his fees are very reasonable).

I also had angioplasty on my right jugular vein 3 months ago with no noticeable improvement yet.

I started looking at alternatives when the neuros gave up on me - I wish they would have let me go sooner!

finding a chiro. that is well versed in upper cervical and the whole body is tough. there are not many flanagans running around. not here anyway. but the hunt is on again for me. i have a nucca dr. not far but he will not treat anything else and i need both because of the type of trama i had. i've been down this road and they all say they can do this and that and for somethings that's ok. but, just like anything you hope the ones we find really are capable of this. my history is long and being older i hope things aren't permanent by now but i just know and always did that this is the big picture for me.

when i explained my injuries to dr. flanagan he said that the hard hit i took to my r. knee unless corrected properly could -guess what- effect the "thoracic" and "neck". plus my neck took a whooping too. if he were treating me it would be neck, spine and pelvic.

just telling you guys so if you find someone that does it all be sure and explain what your trauma's all involved. it may not all be about the neck like i'd thought for me. so, no wonder for me anyway the nucca helped some but with a bad foundation and a screwed up top plus a bad middle how could i get the full effects. makes sence. plus yrs. ago ago when this was my main focus i remember the xrays of my neck and back. it looked like a railroad track that had been in an earthquake. now from yrs. of not walking properly and my posture is like a bent and twisted branch and wheelchair and all and i'm sure a lot of you understand. but, the fact that i did have stenosed veins "thoraci"?? would that be the cause of ctos? i did try ccsvi-no real help for long "if i have pressure on thoracic really how could it last?" and that the nucca did have some positive effects and all this impacts "blood flow" "and nerves".

i have yapped about the fall and trauma being the start of my nightmare and even form the start of my post here i always focused on my fall. in no way saying i knew it all cause i don't. i'm so grateful for this ccsvi sight-look at where it is leading- that everyone is willing to discuss and share their story and info. and ccsvi is still the focus but maybe soon this "dirty little secret" that this monster called ms has been keeping will finally come out of the closet.

but, i do believe ms is only the name that was picked to kinda group us into a package deal and easer to market in a drug run world. look at us ppms-why are we so different why no drug for us? look at how many of us have unjuries and our symptoms started. no wonder drugs help some a little, diets help some, ccsvi helps some, on and on.

hope to hear more good news from you so talented little costume.