This Is MS Multiple Sclerosis Community: Knowledge & Support

Tamarack, thank you very much for helping everyone learn more about Dr. Rosa and his latest study. To prevent incorrect assumptions from being made by Dr. Rosa, I should mention that in addition to my own questions, I also ask questions on behalf of others (who wish to stay anonymous). Because the information in this thread is very important, I'll link back to here from Dr. Flanagan's thread when I post follow-up questions and comments regarding Dr. Rosa.

blossom, thank you very much for doing such a *FANTASTIC* job in helping people better understand the questions and their context. You nailed it, blossom, and your post is one of the best posts I've ever read here at TiMS or anywhere else. TiMS is extremely lucky to have you, blossom. Thank you again.

MrSuccess, thank you very much for your contribution. I burst out laughing when I read, "... in her own way." The more people who post, the better!

So I guess all other AO Chiros are quacks because they are not using Dr Rosa's protocol. AO Chiro's state in their office literature (they all use the same list which mentions MS) that may be able to help MS patients. I don't think so; they may not do it as accurately but many times they have helped with symptoms.

Who said "all other AO Chiros" are quacks? Dr Rosa has never said that. Milsap don not start rumors or insinuate things that are not true. It does not help us. Dr Rosa explained that using the Fonar MRI gives different info and more info than the traditional MRI when one is lying down. Let's face facts a 3 dimensional image always gives more info than 2 dimensional image.
I would like to make a point of clarification. While Dr. Rosa is an Atlas Orthogonist Chiropractor, he is the only atlas doctor in the world using Image guided atlas corrections(Upright MRI). He presently posses a patented advanced imaging method which is at the root of his corrections and good observational outcomes.
While he does not claim to be better than any other atlas doctor, he is the only atlas doctor using Upright MRI CSF flow studies presently, pre and post atlas correction. The facility I had him perform my procedure, is presently the only Upright Imaging facility in the world doing his work. His work was mentioned in a recent publication titled " The possible role of cranio-cervical trauma and abnormal CSF hydrodynamics in the genesis of Multiple Sclerosis" Damadian et al.
Dr Rosa has been working exclusively with Dr. Damadian and Fonar in further diagnosing neuro-degenerative brain diseases as well as validating pre and post CSF flow changes after Atlas Orthogonal adjusting in patients with MS, Parkinson's etc.
So if a patient is looking for the outcome that had been observed in my case or many of the other cases that Dr Rosa has been involved in, they can only expect this type of outcome with his Upright MRI Image guided cine CSF flow studies. Merely going to any atlas Dr, does not insure nor mean that they can do what Dr Rosa is presently doing with diagnosis, treatment and outcomes.
Dr Rosa is continuing to collect data from the research studies he has been performing that came before my treatment and is continuing to do more patient research studies in the future as we speak. And as of this past study I have been involved in, the outcomes are looking extremely positive for treatment of patients with not just MS but other neuro-degenerative brain diseases including Parkinson and according to Dr. Rosa, the follow up outcome studies have been extremely positive.

What I understand from all this is: don't go looking for Dr. Rosa's protocols/vectors/techniques until they are proven. I will await further info/publications.

If anything is proven in studies to be effective, reliable, long-lasting, and safe, there will be a world of customers/patients.

Beware the patient: we are now more powerful, better informed, and we don't take no guff. Or at least I haven't seen any of that lately around here.

Dania, has your bypass situation improved, stayed the same, or (God forbid) got worse since your more recent one? I guess what I'm asking is are you now getting this new treatment because the bypass failed, or is it just icing on the cake?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Had my third adjustment on Friday with Dr Rosa. The 4 hour drive there and 4 hour drive back home (if there is no traffic or waiting at the border) is very difficult for me. Exhausting. I turned off the A/C coming home, the heat was not bothering me. I notice this every time I get my adjustment. Tolerate heat and humidity so much more. The swelling in my legs and feet has decreased. My eyesight has remained sharp since this first adjustment. My vision no longer is like looking through grey tinted glasses. I can see that this is not a quick fix. From all my research, once the CSF is flowing and as long one maintains the adjustment, it is then up to the body to heal the damage that occurred from the misalignment. I can see it will take many adjustments. I did not get this disabled overnight. It took more than 20 years. Dr Rosa said it was too bad I was not adjusted earlier on. He thinks if I had been I would not be so disabled. Unfortunately I fell trying to transfer myself from, my W/C to my recliner yesterday. Landed smashing my chin on the floor. And they I lay like a turtle on it's back unable to move. The phone was out of reach. I was so lucky that someone stopped by about 20 minutes after I fell and got me back into my chair.

dania, thanks for the update.

Am so happy about your improvements but am so sad you fell. Smashing your chin on the floor might have jarred your Atlas out of alignment, you poor thing. Thank goodness you were saved by someone! (maybe a http://www.lifealert.com system would be helpful?)

Since your drive to Dr. Rosa's office is so long, you might find this at-home leg-length check useful: If possible, lie down on your back on a floor with your ankles positioned a couple inches past the top of a staircase so that your feet can dangle. Then, with your feet relaxed, have someone check the heels of your feet to see if your feet are even, i.e., to see if there's a difference in the length of your legs. If there isn't a difference, you'll know that you don't yet need an adjustment.

Also, you might find that as time goes by, your Altas adjustments will last longer. I went from needing an adjustment every couple of weeks to needing an adjustment every 2 to 3 months; hopefully, this will happen for you, too.

Oh my, Dania. I am so sorry you fell and am concerned that hitting your chin like that could very well have disturbed your alignment. It probably seems like an overwhelming ordeal to have Dr. Rosa check you again, but please consider it.

HappyPoet, trying to have someone check leg length as you suggest might delay needed treatment. Leg checks are an art and a skill. Atlas chiropractors are carefully trained to do this. Dr. Rosa also relies on a palpating scan of the neck which preempts a leg check. I know you would like to help Dania, but determining if someone is out of alignament should be left to the professionals.

Best wishes to you both.
Tamarack

I am going to see him this Friday.

I took 30 years. It was too bad you were not adjusted earlier on.

Lest anyone think I am against drugs in general, I consider that part of why I am as disabled as I am is that I have been trying unsuccessfully, since before I was disabled, to get put on trials for drugs like Tysabri (used to be Antegren) and Gilenya (used to be fty720) and now Fampyra, with no success. I have been excluded from trials for reasons which were more about the doctors and the drug companies than they were about me. The answer has been an unequivocal NO. Now I understand the makers of Fampyra are allowing people up to EDSS 7 to take it. I think that is because of failure to charge the same stratum of money, so a motivation to expand the market. My neurologist said it would only work for RRMS.

I think a lot of people are disabled unnecessarily because of doctors who are vindictive and egocentric and don't care about anything but clean clinical trial results leading to drug profits.

I was given 4-AP when I was definitely RRMS (still riding in the "MS" Bike Tour). Then some company applied the same technology that has been used on every vitamin and pain-killer out there. They made a time-release version, and lo and behold, it is on the market as Fampyra (sounds like a horror movie).

The druggist at the Ottawa General hospital made the 4-AP. Any druggist could make a time-release version of it. Why does anyone have to pay so much $ for it? Why is there not a generic?

OK, so mabs are tricky to make. But there have been Chinese people taking the herbal version of Gilenya for thousands of years. Why do "MS" people have to pay $30000 a year for it?

These are the first so-called Disease Modifying Drugs that help sufferers a significant amount, and actually do postpone disability. People have been dying of "MS" for 150+ years. Isn't it time they were given a break, and allowed to pursue the best course of treatment they can find, without interference from lobbyists, politicians, medical gatekeepers and everyone else protecting their slice of the $20 billion "MS" pie?

I did my research even before the trial started, and had a well-founded, reasoned, evidence-based belief that Gilenya would work. I probably knew more about it than the doctors running the trial. I was prevented from taking it. It was only after that , about a year later, that I really became disabled. Yet only RR"MS" patients were allowed on the trial, and since I was misdiagnosed (too soon) as having "converted" to SP"MS", I was not allowed on the trial, and did end up disabled. Now that the trial is over, I am not allowed, because it is only for "RRMS". Nobody can tell you why, because it was never even tested on SP"MS" .

But the drug company (and neurologists) had a happy ending, because there are always more guinea pigs and "MS" patients that they can sell their drugs to.

Since then, I have been on a 2 year trial of a drug that didn't work. I saw people crying because either the drug didn't work or they were on placebo. I was on placebo, but the real drug didn't work. I didn't cry because I was used to it. Incidentally during that trial I was given steroids for an "exacerbation". I had thought people with SP"MS" didn't have exacerbations. Oh, well, what do I know? I am just the idiot patient.

About 4 years earlier, I had had a course of mitoxantrone. It has the lovely side-effect of causing permanent heart-damage, and delayed heart-attacks (about 4 years later). I had one of those, and I would hate to think they ended the MBP8270 trial early because of that. I was only on placebo, so I doubt it.

Now I am nearing the end of a two-year+ remission (which again, SP"MS" patients are not supposed to get), due to the CCSVI procedure. Am I still "RRMS"? Should I be on Betaseron? Tysabri? Gilenya? Fampyra? No, not worth spending any more money on me. I have a heart condition. Won't live long enough, not likely to improve my quality of life for a significant time. Isn't there some other life-threatening experiment we can try? How about high-dose chemo?

Just to round out my rant, there were studies done on the combination of mitoxantrone and Copaxone. My chemo doctor (also an"MS" doctor) told me there was no reason not to stay on Copaxone while taking mitoxanrone. But when I went to fill the Copaxone prescription, I found my neurologist had cancelled it, saying that the combination was "not approved". Never mind that studies came out within a very short time of that, showing synergy, and that the combination was better than either drug alone. I was already off Copaxone.

I blame many of my problems on the incompetence, inattention, and carelessness of certain doctors. I have come to the conclusion that in spite of Hippocrates, and statements to the contrary, you are on your own. The only remedial fact is, doctors get sick sometimes too. "Physician, heal thyself."

Your mileage may vary, but it is too bad you were not adjusted earlier on, yes.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

thanks for the updates. that traveling would be very hard for you and glad to hear some things are getting better. when a person is in the shape some of us are what may seem next to nothing to people that don't know what hell this is to try to live with everyday--the small improvements are hugh.

sorry to hear of the fall. last time i took a hit i told my brother maybe somebody ought to start wrapping me in bubble wrap. hope friday with dr. rosa proves to help you even more.

Dania, from my understanding Dr Rosa uses the Upright MRI to Guide his treatment. Apart from the i9nput / guide from the MRI, does his treatment involve any additional techniques not already used in AO?

Does he use only an initial MRI, or have you had multiple MRI's, for example before/after each treatment?

Does he use only an initial MRI. YES
multiple MRI's, for example before/after each treatment NO

AO Chiropractors are the business of adjusting the atlas with x rays and yes they can adjust the atlas to its normal position to say that they can not is bs. Yes Dr Rosa is doing unique research in "measurements" and using the upright mri but in the meantime you can go to ao chiropractor and get c1 adjusted accordingly.

dania, I'm relieved you'll be seeing Dr. Rosa which I assumed you'd do because of your hard fall which I mentioned with concern; my suggestion was for the future.

Tamarack,
Thanks for giving your perspective. My perspective is that patients can make informed decisions about their healthcare.

Leg-length checks: An at-home check can help a patient decide if extra effort should be made to see his or her AO chiro. My AO chiro, now retired, is the doctor who taught me how to perform properly the at-home check because he understood that pwMS can have myriad symptoms (cognitive, motor, and sensory) and related problems (transportation, financial, etc.) that can make it difficult to keep prescheduled re-check appointments. If not for knowing how to perform an at-home check and knowing that I was out of alignment, I would have ended up postponing several important re-check appointments at which my Atlas had been adjusted.

My personal, anecdotal experience (over a two-year period) is that for the times my husband and I checked, our measurement equaled my AO chiro's measurement, BUT actually having to take a measurement isn't necessary because a patient only needs to know if their legs are uneven, not by how much (the shorter leg will always be the same leg).

As many people here know, I've always advocated for patients to see their AO chiro for every prescheduled re-check appointment because I believe that being a successful AO patient is being a proactive AO patient which I define as being adjusted before symptom activity starts, and at-home checks help support this strategy.

"Palpating scan of the neck": I wonder why you used jargon in the descriptor "palpating scan of the neck." For clarity, here's a layman's definition: 'using fingers to feel for muscle tightness at the back of the neck.' But there is a better descriptor than "palpating scan of the neck" that fits this definition.

'Feeling neck muscles' is a more helpful descriptor than "palpating scan of the neck" because it clearly, simply tells that muscles are felt, as opposed to anything else being felt, such as the Atlas, itself, which cannot be felt by the hand; note that "palpating" and "scan" are gone. Using the word "scan" is unnecessary and confusing, and patients should be told it does not refer to any type of imaging scan similar to an X-ray, US, PET, CT, or MRI scan.

I wonder if Dr. Rosa, himself, made up the descriptor "palpating scan of the neck." Or if you, yourself, came up with it. I wonder because my searches using Google for "palpating scan of the neck" and "palpating scan" return only one hit each--which, for both searches, happen to be to your latest post above.

Finally, regarding your "preempts" statement, citations are needed.

Edits--added quotes and clarifications.

Had my fifth AO adjustment yesterday with Dr Rosa. Had a very difficult time getting in the car to go and a terrible time getting out of the car once I was in Albany. Took 4 people helping to get me out of the car. Treatment went well. Dr Rosa only had to do 1 adjustment. Last week he had to do 3. I noticed on the drive home I could feel my legs and feet. They were tingling, as if the circulation got going. Did not need the A/C and I was alert again. Once I got home it was much easier to get out of the car and transfer myself to the W/C. I am definitely much stronger than before the adjustment. I told Dr Rosa I wished I live near him and could be checked and readjusted a few times a week as I keep losing the adjustment. He said that would be the best. Told me he gets a corporate rate at someplace less than a mile from him. He will check on the price for me. Said I should come and stay 1 week and he would check me 3 times a day and adjustment if necessary. Explained that the longer I stay aligned the better. Once my neck muscles get stronger I will be able to hold the alignment longer. This is not a quick fix.The adjustment only allows the CSF to flow and it is with time (as long as the CSF is flowing by staying in alignment) that the body heals itself.