CCSVI and CCVBP

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

Postby Interrupted » Tue Oct 05, 2010 9:20 am

uprightdoc wrote:Interupted, Based on what you told me, you only have possible MS at best. I could get you fixed in no time. You definitely have circulatory problems. You have cervical problems that are affecting the vertebral arteries that enter the brain right where you feel those lumps and bumps that due to muscle tension. I could be wrong but I picture you as on the lean side. Do you have low blood pressure as well? How is your pulse rate?


I have normal blood pressure and a normal pulse every time they are measured. Normal oxygen levels allegedly too (though I really don't feel any of these are ever correct, but obviously they are what they are despite what I feel). That's the thing, every test i've ever has done for anything comes back as fine. Except for the lumbar puncture being positive and a couple of small lesions evident on MRI for confirming MS. Yet i'm oddly more disabled than a lot of seriously disabled people because I can't see properly, don't feel like i'm alive, can't quite get my brain to connect to the rest of me, am very dizzy, have no energy, always feel sick, always have viruses and bugs, and am very very weak.
I would be a little lean and very muscular if it weren't for the fact that i'm a sugar addict and overeat in compensation of fatigue. Thus i'm a fairly normal bodyweight. Not really fat or thin.
Interesting that you mention female problems as I have just found out that I have PCOS, which I didn't know before.

So wow, solid advice in relation to an interesting avenue, thank you. I'm disappointed in myself now that i've never pursued this avenue. It's one of very few that I haven't. Homoeopathy/Reiki/Acupuncture/BFD/Physio/Bowen/Kinesiology/CBT... all tried and failed! If it turns out i've been stuck indoors in pain, dizziness, upset, and sick as a dog for the last 10 years when a visit to a chiro could have sorted me out all along i'll definitely be kicking myself! lol
If having the Lib' procedure doesn't work for me next week, i'll be getting on a plane to see you! :roll:
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
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Postby PCakes » Tue Oct 05, 2010 9:57 am

uprightdoc wrote: The difficult cases are the ones with classic lesions.

Hello again,

What defines a 'classic' lesion? The reason I ask as previously noted, my diagnosing neurologist suggested that lesions, unrelated to MS, develop in the vast majority with age. ('unrelated to ms' I now question as my personal theory is in some cases MS is really accelerated aging due to CCSVI)

Do you suggest that some lesions may be the collateral damage of 'silent' migraines suffered due to spinal injury/malformation/curvature?

I also ask this as I have just read your response to 'interrupted' including..
I could get you fixed in no time.

and am unable to find where you have requested her lesion load? if any? Would the other symptoms trump lesions in this case?

Last question.. does your therapy include 'cracking' of the spine? apologies for the barbaric reference.. I am not familiar with the proper therapeutic term.

Thanks again,
pCakes
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Postby Ruthless67 » Tue Oct 05, 2010 10:19 am

Hi all,

Since the onset of MS symptoms I have been seeing Lower Spine Chiropractors. In the beginning, before my MS diagnosis, when I would have numbness traveling from my feet up my legs, the adjustments seemed to help. For the last 15 years or so, that has not been the case. I still would go to the chiro’s because I got some overall benefit and I have always felt that it helped my nervous system pathways because my feet would tingle as I drove home from my adjustments.

Recently costumenastional has brought Dr. Flanagan here to TIMS, what a wonderful addition to our discussions and research, Many thanks costumenastional and Dr. Flanagan for joining us and sharing your vast body of knowledge & research.

Dr. Flanagan gave me the name of an Upper Cervical doctor in my area, albeit, a 100 mile roundtrip, that I contacted and have now had 4 visits with. I hit the jackpot as Dr. Jarrod Fancher! He is a young Upper Cervical Chiro with an open and very curious mind.

The 1st visit consisted of the exam and x-rays and a brief history. During that 1st visit I told the doctor how I ended up there, about my injuries, my MS diagnosis, past history with Avonex, and presented him with a fist full of papers (Off the internet, no less) on CCSVI. Most doctors when confronted with such a stack of internet printout immediately stop hearing anything further you have to say. But not Dr. Fancher. He listened and took the papers and said he’d recently read something along these lines.

When I came back for my 2nd visit he went over my X-rays, which he will e-mail me so I can share them on TIMS, and we talked about treatment. He also found the paper he had read, http://uppercervicaldocs.com/upper-cerv ... tion-2010/ Then I received my first Atlas adjustment and we set up my treatment schedule.

He asked me to keep a journal which I have.
09/29/10 - 1st & 2nd apt. on same day. Atlas was adjusted, there was no twisting of the neck, no fast jerks, no sound of popping bones, no discomfort whatsoever. The rest of the day and evening there was no noticeable discomfort or changes.
09/30/10 - Woke w/slight headache, took 2 reg. aspirin. Later that morning noticed I felt less “brain fog” and more in the moment.
10/01/10 - 3rd apt. No adj., prior adj. still holding. Misplaced something and remembered where I had left it!! This is Huge for me!
10 /02/10 - Still clear headed, fatigue has not been an issue today, but am still “wading through thigh high water” and still have balance issues.
10/03/10 - No L’HERMITTES!! No TINGLES when I drop my chin to my chest!
10/01/10 - Left home at 8:00 AM with a friend and I drove the 50 some miles to my 4th apt. The original adj. is still holding! Yahoo!! We shopped all day and then I drove the 50+ miles home. Although I opted not to make dinner, I was not totally done in.

I have not had any major improvements, so who know where it will go from here, it certainly has not been a negative experience and I plan on giving Upper Cervical adjustments a fair chance. And hopefully I’ll be a patient in Dr. Dake’s CCSVI trials later this year. I will continue my anti-candida diet ans stay off the MS drugs and hopefully out of a wheelchair.

Like one of my friends with MS has said many times. “We need to continue to follow the bread crumbs in our search for answers” And as Dr. Zamboni says, there are many pieces to this puzzle that is MS.

Lora
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Postby uprightdoc » Tue Oct 05, 2010 11:42 am

Interupted, where are the lesions located? Are they in the upper or lower brain area? From what I recall there are some good SORSI chiropractors in the UK. A good female SORSI DC may help. PCOS causes pelvic irritation that can can cause all sorts of problems. In TCM tumors and cysts are indicative of stagnacy. Watery cysts such as PCOS are considered to pancratic/spleen signs and one of the chief causes of problems with females holding water in the arms and leg is caused by sweets. They lead to dampness conditions. Heavy feeling in the extremities is another classic sign. The way you describe weakness in relationship to other symptoms sounds more like fatigue. People get weak when they are tired. Soilder's collapse during forced marches. Many of your symptoms are similar to migraines which screw vision up either at the sources as in retinal migraines or in interpertation of signals in the occipital lobe. Occipital migraines cause auras and illusion type misinterpreted signals. Retinal type migraines cause mosaic and jigsaw type patters or loss of vision. Did they do a plethymography or just a doppler scan.
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Postby uprightdoc » Tue Oct 05, 2010 11:57 am

PCakes, Classic lesions would be defined by location according to the way I was learned it. Radiologists make the determination based on the location as well. Radiologists can tell the difference between a stroke caused by arterial rupture versus an MS lesion located near veins. On the other hand sometimes its not so clear cut and they have to make a judgement call. They can be a sign of aging and if you have no symptoms they are often insignificant. Migraines and mini strokes definitely cause hyperintensity signals. Classically you should have at least two or more supratentorial lesions above the posterior fossa. Symptoms are major in making the diagnosis.
Diversified cracking methods of the cervical spine, although widely used successfully in family style chiropractic practices are only a small portion of a wide array of techniques used in chiropractic. The activator hammer was mentioned in a previous post. SORSI SOT doctors use almost no force. There are flexion distraction tables and tables with special drops. Then there is upper cervical which is unto its own. Anyone diagnosed with a serious illness such as MS should carefully investigate any doctor the use. Many of you require kid glove treatment. Poet has a healed neck fracture and Costumenational almost broke his neck. I wouldn't let just anyone practice on case like these. They should be treated by senior doctors with plenty of experience.
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Postby uprightdoc » Tue Oct 05, 2010 12:03 pm

Lora, I am confused. You remain clear head and have no Lhermitte's and no tingling when you drop your chin to your chest. Were you experiencing those signs previously? By wading through thigh high water do you mean resistance to walking. Tell me more about the dizziness. Do you have lesions and where are they? Did you get a picture of your cervical x-rays?
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Postby Interrupted » Tue Oct 05, 2010 5:25 pm

uprightdoc wrote:Interupted, where are the lesions located? I don't know, they only ever scanned my brain and not my spine, but exactly where the lesions were located I do not know. Useless I know, but I never seemed to have things properly explained to me with regards MRI results.
From what I recall there are some good SORSI chiropractors in the UK. If you can recommend anyone I would be very grateful as it's very hard to discern who to put trust in without professional recommendation on such a subject.
The way you describe weakness in relationship to other symptoms sounds more like fatigue. Absolutely. I assume this is why they also label me as having Chronic Fatigue.
Many of your symptoms are similar to migraines which screw vision up either at the sources as in retinal migraines or in interpertation of signals in the occipital lobe. Very much in a lot of ways, until I started taking Sumatriptan they could go on solidly for up to 3 weeks. They have literally left me forcing my fist into my eye socket without realising I was doing it with the pain according to my family. I do get Optic Neuritis as well, and pain looking to extreme left/right during either the ON attack or "migraine". I never had these before I fell ill. Sumatriptan has now thankfully generally lessened attacks to about 12hrs. My optic nerves are undoubtedly very easily upset.
Did they do a plethymography or just a doppler scan. Did who, sorry? I've never had a plethymography done. I've never been able to get doctors to check my veins anywhere other than in my leg, they just laugh it off due to my age. Everything has been tagged as MS and CFS and that's enough for them apparently.


Answers in bold above ^

After your initial post, the talk of vertebral veins struck a chord with me, and worried me rather. Having now read more about problems there, I think I will try again to discuss things in this realm with local doctors. The problem is that once you've been labelled with MS or CFS, everything gets written off to those being the culprit without any investigation.
As I said, i'm a strange case. And because outwardly I look fine and normal it is very hard -even after 10 years- to get anyone to believe the desperate state of illness and incapacity i'm left in without hugely evident mobility problems for them to see. The more invisible something is, the less attention medics seem to feel it deserves despite serious disability. Sadly.

One thing I can say is that when I get what could possibly be termed as a bad relapse where everything goes up the wall, I do get a very strange tingly sensation in my lower back that often seems to coincide.
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
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Postby uprightdoc » Wed Oct 06, 2010 1:22 am

Interupted, you are a very strange case indeed. Many things can cause a great deal of pain and be associated with lower morbidity like a wicked toothache. On the other hand, some conditions such as Hodgkin's lymphoma have serious morbidity and no pain. You have a great deal of pain but you have less morbidity because there seems to be minimal damage. That's a good thing. There is a good possibility that you have a migraine variant. As wicked as migraines can be when it comes to pain, they offer more hope for improvement and management than someone with permanent damage to the brain and cord. Female problems are always complex and and then go hand in glove with migraines. But while they are complex they are not impossible.

Do you get wavy lines or loss of vision? Or do you get auras and deja vu type problems with vision? You had a doppler scans in Ireland and UK from what I can determine. Doppler scans of veins use ultrasound sound waves like sonar. Plethymography uses magnetic pickups to measure red blood cells with positive charges passing the pickup to determine arterial blood flow. I think they should be doing both on MS patients and if I had my way upper cervical specialists would be using them as well. I think your problems are on the arteial side in the head but the vertebral veins in the spine are probably getting some back flow from pressure problems in the pelvis. You obviously have staganation and swelling in the pelvis because you have PCOS. You also eat a lot of sugar that causes a field day for problems in the lower intestines down in the pelvis. Your head is the major problems. The pelvis is contributing to the problem.
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Postby costumenastional » Wed Oct 06, 2010 1:25 am

Ruthless67 wrote:Many thanks costumenastional and Dr. Flanagan for joining us and sharing your vast body of knowledge & research.

Thanks for sharing friend. Good luck and be patient with this one.

uprightdoc wrote:Poet has a healed neck fracture and ostumenational almost broke his neck. I wouldn't let just anyone practice on case like these


Actually, Dr Koontz is the only upper cervical chiropractor in Greece at the moment so i guess i am lucky he is so caring and careful.

Dear Dr Flanagan, yesterday it was my number 3 visit after my first and only adjustment.
Michael (Dr Koontz) was pleasantly surprised (he and me both) after he scanned my neck. It seems that not only I am holding the adjustment but on top of that, the left line was even closer to normal (to the middle) than a week ago. Actually it had nothing to do with my pattern. And this came without me having to lay down first.

For those who missed my original post concerning chiropractic djustments i should explain that Dr Michael Koontz uses the Kale's method. It 's a knee to chest method (this comes from that special table used) and there is a scanner involved which uses thermal signals to show the nerve stimulation along the neck. At least this is the way i get it.

Prior to my adjustment the left line (there are two, the left for the left side of the neck and accordingly the right) was totally out of alignment meaning that it had nothing to do with the reference straight line in the
center. This makes sense since the way my vertebrae are, they result in pressure to the left side of my neck. The right line was ok. Anyway, the original scans prior to any adjustment are the patient's pattern. Right after the adjustment there was some improvement that held for the following week. Unfortunately, last week Michael told me that there were signs that i might be returning to the pattern and yesterday we were both prepared for further adjustments. But...
My left line almost aligned with that straight line in the middle. Michael told me that he wasn't expecting that. Neither did I. Not only it was in the center and almost straight (overlapping the base reference line) but at some points it was a bit stretched to the right. This, accordingly to Michael shows that my body is trying to adapt and that the adjustment we did seems to be working. I dont have to visit him every week but every other week for the time being.

Dear Dr Flanagan, I hope I make sense.

I am certain now that this subluxation was responsible for the pains i had in the base of my skull bilateral above the atlas and that swelling feeling - pain above my right ear. I will continue to be until they return since for
know they are gone. There was also a burning sensation which i was pretty sure that my c2 lesion was giving me.
Well, neuros are right when they say that you cannot feel the lesion. I remember when i asked Michael to put his finger where the c2 misalignment is. He put his finger exactly where this burning sensation was and of course the MS lesion.

Michael told me that according to Dr Coniccelo, it takes about 6 months for MS patients before they feel any kind of improvement. He also told me that he won't touch me if it is not absolutely necessary. We talked about cases where a few months after the adjustment, the whole cervical spine was miracously recovered but my english are not good enough to go there.

He asked me to give a notice about chiros malpracticing and injuring patients and how dangerous all this can be if we are not careful even though he realizes that Dr Flanagan is obviously doing a superb work informing us about everything.
Last edited by costumenastional on Wed Oct 06, 2010 5:54 am, edited 1 time in total.
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Postby uprightdoc » Wed Oct 06, 2010 3:13 am

Costumenational, Actually Dr. Koontz isn't just anybody or I would have recommended him in the first place. Many chiroprators never study upper cervical and some take it as an elective while they are in school. It was the major method taught where I went to school. Everything else was elective. I was taught knee chest and we used an NCM which predated the new thermograms which are far better thanks to today's technology. The thermaogram measures heat and as I told you, you are in flames. You are also young and your vitality (chi) is good and the elastic components and connective tissues are probably in good shape because you used to lift weights so you are fit. Nonetheless you may have torn connective tissues. It sounds as though you are making better than expected progress if you are holding already.

Dr. Koontz didn't take upper cervical an elective. He pursued it and studied different methods. Kale upper cervical is similar to the Palmer upper cervical I learned with a slightly different twist. When I left practice I used a hybrid of Grostic upper cervical and Craniopathy which I won't try to explain here. NUCCA came from Grostic. In contrast to Dr. Koontz, rather than thermograms and leg checks, I also used postural analysis, range of motion testing and palpation, muscles tests, as well as standard orthopedic and neurological tests to monitor patient's progress and determine when to adjust. Dr. Heidi Grant is a NUCCA upper cervical doctor in the UK who likewise has three years post graduate and certification in neurology in addition to NUCCA. There is a lot of discussion and disagreemnet among chiropractors but I won't go into it here. Suffice it to say that upper cervical chiropractors are good at what they do. So are other methods. I got caught in the middle of the crossfire because I do both because I started with upper cervical and then added full spine. I like both.
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Postby HappyPoet » Wed Oct 06, 2010 6:10 am

uprightdoc wrote:Poet, I don't know the particulars of your signs and symptoms but the old fracture in your cervical spine from the Slalom ski accident makes me want to lean towards upper cervical. Are your symptoms in the brain or are they in the extremities or brain and extremities? How is your balance and gait?

Here are my diagnosis history and a list of major symptoms:

Diagnosis History: 50 y.o. female 5'10" 150 lbs
Optic neuritis (2000) Transient symptoms including Uhthoff's and Amarosis fugax. Never remitted.
RRMS (2000) Below-the-neck and above-the-neck symptoms with numerous diffuse brain lesions.
Transverse Myelitis (TM) (2007) T5-T9 symptomatic lesions.
CCSVI (2010) L, R IJV inverted valves=90% blockage; azygos showed good flow/appearance. Treatment consisted of valve ablation (for better or worse) by balloon venoplasty.
Dural sinus malformation (2010) Absent L transverse sinus (MR venography).

Symptoms:
Above-the-neck: ON (blurry, tunnel, and double vision with PAIN), hearing loss and tinnitus, cognitive and memory deficits, mental health issues, fatigue, brain fog, and heat intolerance.
Below-the-neck: TM-related MS Hug spasticity/PAIN, numbness (toes, feet, legs), left leg weakness, spasticity/PAIN in all extremities, and poor balance.

Thank you very much! :)

~Poet
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Postby HappyPoet » Wed Oct 06, 2010 7:12 am

uprightdoc wrote:PCakes, Classic lesions would be defined by location according to the way I was learned it. Radiologists make the determination based on the location as well. Radiologists can tell the difference between a stroke caused by arterial rupture versus an MS lesion located near veins. On the other hand sometimes its not so clear cut and they have to make a judgement call. They can be a sign of aging and if you have no symptoms they are often insignificant. Migraines and mini strokes definitely cause hyperintensity signals. Classically you should have at least two or more supratentorial lesions above the posterior fossa. Symptoms are major in making the diagnosis.
Diversified cracking methods of the cervical spine, although widely used successfully in family style chiropractic practices are only a small portion of a wide array of techniques used in chiropractic. The activator hammer was mentioned in a previous post. SORSI SOT doctors use almost no force. There are flexion distraction tables and tables with special drops. Then there is upper cervical which is unto its own. Anyone diagnosed with a serious illness such as MS should carefully investigate any doctor the use. Many of you require kid glove treatment. Poet has a healed neck fracture and Costumenational almost broke his neck. I wouldn't let just anyone practice on case like these. They should be treated by senior doctors with plenty of experience.

I'm behind in reading and re-reading all your posts (cog fog makes for very slow going), but your above words in bold partly answer my original question of what type of doctor I need given my history. Would it be possible for you to recommend a doctor in the Upstate New York area? Traveling is extremely difficult, but I could go to the NYC area if absolutely necessary.

I live in Albany, New York and am wondering if you will be attending the upcoming Albany Vascular Roundtable on "CCSVI and MS: Connecting the Dots" on Nov. 10? Dr. Mehta, who is sponsoring the Roundtable, performed my liberation, and my friends, Kacey and Michael, will be speaking. If you can't attend this event, hopefully you can attend another one somewhere else in the country.

Thank you! :)

~Poet
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Postby uprightdoc » Wed Oct 06, 2010 7:15 am

Poet, I don't think you could possibly be more challenging. You have one of the genetic type malformations I have been alluding to in that you have a dural sinus malformation where the left transverse is completely missing. Now we add trauma to the mix which further complicates and impairs brain circulation. But you are a former slalom skier that makes you a determined and tough lady. If you recall, how did you land in the skiing accident? Upper cervical chiropractic is a definite consideration. What do your plain view cervical x-rays look like?
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Postby uprightdoc » Wed Oct 06, 2010 7:48 am

Poet, I live very close to Albany. I am in the middle of many things at this time and four weeks would not give me much time to prepare for a presentation. I could do something impromptu perhaps and I wouldn't mind meeting Dr. Haake as I sent him a copy of my book. I will have to give it some consideration.

Fortunately, for you there are several Atlas Orthogonal upper cervical chiorpractors in the upstate Albany area. AO uses a stylus device to adjust. I prefer hands on but they have they have been doing some terrific work. I will get back to you on a referral. Your case is one for the books. I would like to find a good DC close by if possible.
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Postby HappyPoet » Wed Oct 06, 2010 8:04 am

uprightdoc wrote:Poet, I don't think you could possibly be more challenging. You have one of the genetic type malformations I have been alluding to in that you have a dural sinus malformation where the left transverse is completely missing. Now we add trauma to the mix which further complicates and impairs brain circulation. But you are a former slalom skier that makes you a determined and tough lady. If you recall, how did you land in the skiing accident? Upper cervical chiropractic is a definite consideration. What do your plain view cervical x-rays look like?

I've had hundreds of skiing wipe-outs landing on all types of terrain at speeds up to 50 mph, but I cannot remember any specific crash that hurt my neck more than any other crash. The X-rays that were taken during my first big neurological attack showed my cervical fracture which was a surprise -- my PCP, a DO, at the time said the human body has ways of compensating and that the other cervical vertebra and the rest of my spine re-adjusted to support the fracture.

I never saw the X-ray (at the time, this seemed unimportant compared to the MRIs filled with lesions), but because I'm now seriously pursuing this avenue, I'll be asking for new ones (more radiation, yea) or for a copy of the report at my next PCP appointment -- do you have any suggestions/comments about how any new X-rays should be taken?

Thank you!! :)
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