This Is MS Multiple Sclerosis Community: Knowledge & Support

Brilliant!

I'm on the UCC bandwagon, with my third appt. tomorrow. C1 was rotated 4 degrees to side, and 2 degrees forward. There is a benefit for me so far, I believe.

Doc. Flanagan noted that on last MRI - which radio reported a "shrunken parenchyma" - that hydrocephalus might be a better suspect than atrophy. I hope to prove him right.

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My name is not really Johnson. MSed up since 1993

I need to make a correction -- Michelle (bestadmom) was not in the first AO/CSF study. Since the post was copied, I think this new post, along with editing the original post, is the best way to fix the record regarding participation. Sorry, Michelle, and thanks for letting me know!

Johnson, I agree, the MS-cohort study is brilliant. Best of luck with UCC; it's helped me by taking away my debilitating numb feet by 100% and by reducing my MS Hug debilitating pain by 75%. For me, the secret is to be proactive by not letting so much time go between rechecks that symptoms start returning.

I look forward to the MRI studies by Drs. Wehrenberg, Bender and Rosa. This is just the tip of the iceberg. Upright MRI is about to reveal much more.

If the vascular doctors, neurologists, neurosurgeons and chiropractors all start putting their heads together the research could catapult forward.

For those of you haven't read his history on the CCSVI and CCVBP thread I will post it again here.

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.

I've been successful at getting my new neuro tp order a CINE. Will see what it shows. Next step will be to get an upright MRI. If it does show a problem, then what can one do about it? I have to ask myself is it more practical for me to spend the money on medical tests or home modifications to accommodate my handicaps. I just struggle with "rolling over and playing dead". Just looking for answers but there may not be any which I need to be willing to accept that too. I gave Dr. Flanagan's article on NPH to my new neuro to read. I've found that most neuros are not open minded when it comes to chiros and seem to have a bias. That's a shame.

Hi Coach,
I prefer upright cine MRI but basic cine MRI is excellent as well in your case. It's hard to imagine you don't have obstruction to flow.

It definitely pays to put money into home modifications. Most of them make sense and you will enjoy the benefits as you get older regardless of your present health.

I think the CINE I am getting is not an upright just one where the patient is in the supine position. Would be nice if neuros would realize the benefits of upright vs. supine position but I don't think they do. One thing I have noticed in my case is that I suffer with cold hands and sometimes feet in the upright position (seated or standing) but not when in a supine position. Weird?

Cine MRI is good in either case. Among other things, Chiari-type malformations are associated with cold hands and feet, as well as MS signs and symptoms. Head and neck tilts can cause Chiari 0 and Chiari 1 type malformations, which can be further aggravated by upright posture. If you are interested check out the signs and symptoms list on the link below.
http://chiarione.org/symptoms.html

Dr. Flanagan ,
Have visited the website you suggested in your post. I know my MRIs don't show any physical evidence of CM but I do struggle with some of the symptoms listed. Just wonder if Chiari0 or Chiari1 are overlooked because the diagnosing criterion is based on cerebellar tonsil herniation of 5mm or more. I think neurosurgeon Dr. Thomas Milhorat's Chiari Redefined Study saw CSF flow issues with/without cerebellar tonsil herniation. Of course without the MRI evidence, I stand a poor chance of getting a diagnosis. May not even be a problem as far as I'm concerned. Maybe the CINE MRI will show something. One thing I found interesting is that IIH and Chiari may be different manifestations of having a problem with the posterior cranial fossa (too small). Just wondering why there seems to be a familial link. Also, I noticed that Chiari is often diagnosed (misdiagnosed) as MS. Just some thoughts. Seems my MRIs seem to indicate that I have plenty of room and there is no crowding of the brain. Maybe I have more room now because of brain atrophy creating the space. Kind of like the commercial that said "a mind is a terrible thing to waste".

The link below is page I just published on cranial deformation and correction in infants you might find interesting regarding the posterior fossa.

http://www.upright-health.com/skull-deformation.html

i did not have time to read through all of the posts on this topic so i do not know if this has already been stated but...wouldn't one think that if the pressure or too much CSF was an issue that one would feel relief after a lumbar puncture (even if temporary)...as for myself....i have never felt worse...slow but steady decline AFTER lumbar puncture...

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GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

Hello leetz,
Some patients with too much CSF volume or pressure do get relief from shunts and lumbar taps. The degree of relief depends on the cause of the problem and whether or not the damage is permanent. Sclerotic plaques in MS for example are scars and although some people will get relief from MS with vascular intervention, the scars in most cases will remain. A chronic increase in CSF volume over many years exposes the brain to chronic tension and compression brain that can cause permanent damage.

As you may recall Billy Graham had Parkinson's and later developed normal pressure hydrocephalus or NPH. When they treated his NPH with a shunt to decreases and control CSF volume his PD improved. Similar cases have occurred in Alzheimer's. Just like venoplasty and stents, however, it doesn't work for everyone. The problem is in trying to determine who will benefit from shunts.

So what you are saying Dr. Flanagan is that the volume of the cranium is fixed so if a patient has atrophy of the brain, csf or blood will move in to fill the space.
Could that explain the recent symptom of (I don't call it true vertigo) but a kind of swimmy headed feeling from time to time. If the CINE does show a problem with csf, how is that treated or is it?

That'e exactly it Coach. I suspect that more than an increase in CSF volume you have obstruction to flow. The problem is that a malposition of the head alters the normal orientation of the brain within the cranial vault which can compress CSF pathways. The vertigo-like swimmy feeling in the head could be caused by an increase in pressure or shear stresses acting on the eighth cranial nerve in the posterior fossa. It could also be due to blood flow through the vertebral-basilar artery which supplies the brainstem and cranial nerves. Neurosurgeons use shunts to restore CSF volume and flow but I don't think they would consider you a good candidate as you don't have enlarged ventricles (ventriculomegaly). Better alternatives, however, may be around the corner in special endoscopic skull base surgery. A good spinal decompression is a consideration in your case. First you need get the results of the cine MRI.

thank's for the info...

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GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...