When CCSVI fails, try AO and/or the Dentist

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

Re: When CCSVI fails, try AO and/or the Dentist

Postby jimmylegs » Thu Apr 11, 2013 11:53 am

re commonalities btw ms and tmj nutritional issues

Serum nutrient deficiencies in the patient with complex temporomandibular joint problems
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2446412/
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Rosegirl » Sat Apr 13, 2013 9:10 am

We have started a movement among some of our doctors! A few of them are now understand that they need a cross-discipline approach. Dentists and chiropractors, vascular surgeons and radiologists have begun to recognize that they are all able to treat our symptoms, at least in part. They all look at our xrays and see things through their own professional filters. And they are beginning to work together to share their expertise!

As patients, we all weigh how much time and money (and hope) we can spend on trying to find an appropriate treatment. Many of us move from neurologists to other practitioners. Thanks to sites like thisisms.com, we find out about the pros and cons that other individuals have found in their own journeys. While the information can be helpful, we are a small sampling of patients, and our search is complicated by other health issues and unique symptoms that many of us have.

As this topic indicates, atlas orthogonal/NUCCA chiropractors may be an answer for some of us, maybe to the complete exclusion of neurologists and drugs. Lately, we have heard that specific dental care can relieve symptoms for many of us. The challenge is to be our own advocates, and we have no training for that job. For those who do endless research, we may have a global overview of what the problem(s) may be. Then we have to find doctors and therapists who can address each issue, although they may not have thought of themselves as being able to treat “MS and neurological” issues. Getting them to read the latest by their colleagues is often next to impossible.

Luckily, some doctors are also reading TIMS! They want our input. They need to know what we think works, how and why. They are willing to talk candidly about their opinions.

We, in turn, can and should express our skepticism, but we must do it with civility so we don’t drive them from the conversation. We expect our doctors to work miracles, but they are also human and some have stopped posting because of how, not why, we sometimes express our disagreement with their ideas.

What we can do as patients (the beginning of a conversation):

BE A GOOD PATIENT. Bring all your records to each new practitioner, but don’t be upset if that doctor doesn’t want to read all six file folders from 20 years of treatment. Be as thorough and positive as you can while stating what your health issues are. Our doctors are human, and they can be overwhelmed by a desperate patient. We need to treat them like allies, not magicians.

BE SURE TO GET AND KEEP COPIES OF ALL YOUR MEDICAL RECORDS. Now that even xrays and scans are digital, our doctors are used to giving patients a disk with all relevant information, and WE can send it to others to review. No more waiting for a busy doctor’s office to get around to our requests and hoping it gets done in a couple of weeks!

FOR OUR DOCTORS WHO READ THESE POSTS:
Please, keep us informed. We are the forefront of patients you want to hear from. We do our research and we are, at least in some cases, willing and able to be the first patients in studies. Others may not have the resources (strength, time or money) to try new treatments now, but they still benefit from the collective experience.

Let's keep this conversation going.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby dania » Sat Apr 13, 2013 9:36 am

Very well put Rosegirl!!!!! With what you posted and from Dr Flanagan's diagnosis, of cervical lordosis/kyphosis, from my upright MRI I have a better understanding of my problem. My spine needs to be treated first. I emptied my retirement fund, having multiple angioplasties and 3 vein bypasses.Yes, I have CCSVI and my CSF is not draining correctly from my brain. These problems are most likely caused by my spinal issues. Knowing this, I would highly recommend that those considering angio have your spine/jaw looked at first. If there is a problem there,then you will most likely restenose after angio. Less expensive to see a dentist or chiropractor first.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Music » Sat Apr 13, 2013 11:12 am

Well done Rosegirl!

TIMS has been a great place to view other people’s experiences. While I did not see any improvements with the CCSVI procedure but others did, NUCCA helped me a lot structurally and I start my dental treatment in May. My new dentist thinks along the same lines as Dr. Amir – no, they do not know each other – and he does not read here at TIMS but I brought along an inch thick of reading from this site to my consultation…..haha poor guy….but he loved it. Will this help, I don’t know for sure but I’m willing to give it a go.

While we may be throwing out ideas and experiences for each other, aren’t we all just trying to help the next guy……at least I have found some things helpful. Every professional in the same field or not will have different opinions, as we all do. We all have different bodies, so different treatments might be required??

Thanks for starting this thread Rosegirl. Thanks to all for their input on TIMS.

On a side note: My dentist had a patient come to him for TMJ treatment. She had also been diagnosed with Chronic Fatigue Syndrome. After treating the TMJ, her CFS symptoms abated/went away and she is back to building houses in Argentina or wherever. I don’t know if this “cured” her, but it certainly did help. Sorry this is so long.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby EJC » Sat Apr 13, 2013 11:15 am

Rosegirl wrote:We, in turn, can and should express our skepticism, but we must do it with civility so we don’t drive them from the conversation. We expect our doctors to work miracles, but they are also human and some have stopped posting because of how, not why, we sometimes express our disagreement with their ideas.



This paragraph particularly struck a chord with me.

Any Doc or specialist that agrees to come here and post are really sticking their neck out, or head above the parapet or any other analogy you care to think of. This really is a piranha pool here. People want help and they want it now, they don't want to be fobbed off with the same old tosh.

There are specialists still posting here that have taken more then their fair share of flack (much of it off forum) that still chose to post despite facing opposition and abuse that would send most packing - thanks to those that persevere.


Rosegirl, you must have had an interesting conversation with someone that lead you to post this. Care to expand?
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Re: When CCSVI fails, try AO and/or the Dentist

Postby EJC » Sat Apr 13, 2013 11:25 am

Music wrote:Well done Rosegirl!

TIMS has been a great place to view other people’s experiences. While I did not see any improvements with the CCSVI procedure but others did, NUCCA helped me a lot structurally and I start my dental treatment in May. My new dentist thinks along the same lines as Dr. Amir – no, they do not know each other – and he does not read here at TIMS but I brought along an inch thick of reading from this site to my consultation…..haha poor guy….but he loved it. Will this help, I don’t know for sure but I’m willing to give it a go.

While we may be throwing out ideas and experiences for each other, aren’t we all just trying to help the next guy……at least I have found some things helpful. Every professional in the same field or not will have different opinions, as we all do. We all have different bodies, so different treatments might be required??

Thanks for starting this thread Rosegirl. Thanks to all for their input on TIMS.

On a side note: My dentist had a patient come to him for TMJ treatment. She had also been diagnosed with Chronic Fatigue Syndrome. After treating the TMJ, her CFS symptoms abated/went away and she is back to building houses in Argentina or wherever. I don’t know if this “cured” her, but it certainly did help. Sorry this is so long.


Nice post Music, we ask people to have an open mind, specialists and patients alike. It's how medicine and understanding of conditions progress. More power to you and your open minded dentist! Get him on TiMS if he's brave enough!
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Rosegirl » Sat Apr 13, 2013 4:48 pm

EJC asked about the conversation I had with a doctor that prompted my post about how patients and doctors can better deal with each other. Sometimes it’s like dealing with plumbers – each one says the one before him didn’t know what he was doing.

It started when my AO chiropractor referred me to what I thought was a “whizbang” dentist. Big-time specialist in TMJ. It was funny from the start since I thought I had no problems/pain with my teeth. But I had gotten significant changes in my jaw muscles right away with an Aqualizer (and with no idea of how, when or how long to use it), so I figured it might work even better if a trained professional would give me instructions on how to use the product.

Dr. Whizbang was very honest and forthright. He said he rarely dealt with neurologic patients (and he thought any dentist who claimed otherwise was a probably a quack). He would not have offered to treat me at all except that the chiropractor had vouched for the improvement from the Aqualizer. Even so, he said that there was only a five percent chance that he could help me, but the cost would be somewhere between $2,000 and $10,000, depending on how much time and money I had to throw at the problem. To his credit, he told me this in person in a 30 minute consultation, and said that, if I declined an examination that day ($500-750), there would be no charge for the initial visit.

My policy is always that you either trust your doctor or you don’t. But even assuming you want to proceed with treatment, get an estimate. Then double it before you decide to schedule that first appointment.

The $2,000 fee was based on whether a fairly common device called an ALF could help. (The model he showed me looked like the appliance that fits on the roof of your mouth.) If it didn’t work, there was another, custom option that might bring the bill up to as much as $10,000. But the real problem for me was his lack of intellectual curiosity. He said he didn’t need to see my stack of medical records, and that didn’t bother me. I chose to do the examination, and, on the way out, I asked IF he would read any research that I found relating to my case – and he said he might. Might? Might? Whoa! That was almost a complete deal breaker ($580 too late!), especially since what I had been reading said how a dentist could treat neurological symptoms.

It has become a pattern with all my doctors that they each send me to another doctor as part of their treatment plan. Dr. Whizbang was no exception. He said that before he could treat me, I needed to go a general dentist for a cleaning and xrays. Then I should wait two weeks for my gums to settle down and then come back to be fitted for the ALF. The ALF would work within a month or not, so we’d know fairly quickly if it was effective, although there would probably be a few visits to adjust it. Again, it’s not just the money, it’s how many trips to the chiropractor, the dentist, the physical therapist you can afford – in any given week.

In the meantime, I found another dentist (let’s call him Dr. Xacto!) who is really jazzed up about how dental treatment can treat many neurologic problems. Dr. Xacto says that there are several different approaches that dentists commonly use. Unfortunately, he’s not close enough for me to use his services. He was horrified that Dr. Whizbang wasn’t comfortable treating neurologic symptoms, especially since Dr. Whizbang specialized in TMJ and facial pain treatment.

So now I’m waiting for Dr. Xacto to send me info to forward to Dr. Whizbang. Then we’ll see how Dr. Whizbang chooses to proceed. If he declines to treat me, at least I’ll have a game plan to track down another dentist.

For my fellow patients, you all know about how difficult it is to seek treatment, even with those doctors who are successfully treating you.

I put this much time into the details for the physicians who are also reading this thread. And by the way, the AO chiropractor and Dr. Whizbang don’t accept insurance benefits, so if I submit a claim for out of network providers, I might be reimbursed about 15 cents on the dollar. It’s usually not worth the effort.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Music » Sat Apr 13, 2013 7:46 pm

WOW Rosegirl, we really had different experiences with our dentists. My consultation was 1 ½ to 2 hours long ($200+) and quite pleasant and informative….tests and pictures included. I also received an unexpected phone call from the dentist when he got back from holidays as he had read allllll the info I had given him initially. My estimate was about $2200 for the appliance and the first 6 appts. I hope it’s uphill from here for both of us.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby blossom » Sun Apr 14, 2013 12:57 am

Rosegirl wrote:We have started a movement among some of our doctors! A few of them are now understand that they need a cross-discipline approach. Dentists and chiropractors, vascular surgeons and radiologists have begun to recognize that they are all able to treat our symptoms, at least in part. They all look at our xrays and see things through their own professional filters. And they are beginning to work together to share their expertise!

As patients, we all weigh how much time and money (and hope) we can spend on trying to find an appropriate treatment. Many of us move from neurologists to other practitioners. Thanks to sites like thisisms.com, we find out about the pros and cons that other individuals have found in their own journeys. While the information can be helpful, we are a small sampling of patients, and our search is complicated by other health issues and unique symptoms that many of us have.

As this topic indicates, atlas orthogonal/NUCCA chiropractors may be an answer for some of us, maybe to the complete exclusion of neurologists and drugs. Lately, we have heard that specific dental care can relieve symptoms for many of us. The challenge is to be our own advocates, and we have no training for that job. For those who do endless research, we may have a global overview of what the problem(s) may be. Then we have to find doctors and therapists who can address each issue, although they may not have thought of themselves as being able to treat “MS and neurological” issues. Getting them to read the latest by their colleagues is often next to impossible.

Luckily, some doctors are also reading TIMS! They want our input. They need to know what we think works, how and why. They are willing to talk candidly about their opinions.

We, in turn, can and should express our skepticism, but we must do it with civility so we don’t drive them from the conversation. We expect our doctors to work miracles, but they are also human and some have stopped posting because of how, not why, we sometimes express our disagreement with their ideas.

What we can do as patients (the beginning of a conversation):

BE A GOOD PATIENT. Bring all your records to each new practitioner, but don’t be upset if that doctor doesn’t want to read all six file folders from 20 years of treatment. Be as thorough and positive as you can while stating what your health issues are. Our doctors are human, and they can be overwhelmed by a desperate patient. We need to treat them like allies, not magicians.

BE SURE TO GET AND KEEP COPIES OF ALL YOUR MEDICAL RECORDS. Now that even xrays and scans are digital, our doctors are used to giving patients a disk with all relevant information, and WE can send it to others to review. No more waiting for a busy doctor’s office to get around to our requests and hoping it gets done in a couple of weeks!

FOR OUR DOCTORS WHO READ THESE POSTS:
Please, keep us informed. We are the forefront of patients you want to hear from. We do our research and we are, at least in some cases, willing and able to be the first patients in studies. Others may not have the resources (strength, time or money) to try new treatments now, but they still benefit from the collective experience.

Let's keep this conversation going.


i hope too that some of the dr.'s reading are neurosurgeons that see the connection with some of us and our symptoms. we need many specialists.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Rosegirl » Sun Apr 14, 2013 4:13 am

Music, We aren't so far off in our experience. Dr.Whizbang would have given me that 30 minute consultation for free. Then he did a lot of tests, so I was there for almost two hours. It still means that I have to see a regular dentist before the appt to measure for the ALF. I haven't done that yet as, thanks to the tissue and Aqualizer, my teeth keep shifting. (Each day, using dental floss shows that teeth that were very close together may now have a large gap one day and then it might disappear again.)
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Re: When CCSVI fails, try AO and/or the Dentist

Postby EJC » Sun Apr 14, 2013 7:40 am

Really interesting Rosegirl thanks for going into that much detail. When Amir takes on a new patient you get a vast questionnaire to complete about your entire medical history right from the day you arrived on the planet. Surely this must be critical?

A score is given by each patient on a scale of 1-10 for a large number of symptoms - so that progress (or lack of) can be charted as treatment continues.

Periodically each patient is asked to score these symptoms again - completely blind to their first answers. It enables Amir to compile graphs charting each patients progress. This questionnaire was in it's infancy when Emma started treatment, we were helping "road test" it and I believe it's developed a bit more since we started. These are Emma's charts at Oct 2012 so you have an example:-

Image

Image

These also have the benefit for Amir to refer back to treatments of each patient to see how they responded individually to specific symptoms/treatments. He continues to learn with every patient.

As for costs, Amir's initial consultation for Emma nearly 18 months ago was £85 (about $125). At the initial consultation he discusses what treatment he thinks each patient requires along with the treatment cost which isn't based on specific appliances, it's a monthly plan with no large lump sum outlays. He's not keen on his patients publishing costs - but put it this way, the entire treatment costs less than a single CCSVI procedure and it's stretched out over 2 or 3 years.
Last edited by EJC on Sun Apr 14, 2013 2:08 pm, edited 1 time in total.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby vesta » Sun Apr 14, 2013 9:26 am

Hi Blossom:
I don't know what you have tried to correct the skeletal problems and this suggestion may be of no use. I would try to find an Osteopath who uses Kinesiology (Muscle Testing - I describe it on my blog) to "ask the body" where and what the problem is and how to solve it. (I think Dr. Amir uses Kinesiology. Some people think it's witchcraft, but it has worked for me, although one needs a good practitioner.) Just an idea.
MS Cure Enigmas.net
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Music » Sun Apr 14, 2013 10:02 am

Rosegirl, is “Dr. Whizbang” a consultant for TMJ only and doesn’t put the braces/appliances in? From what my dentist has told me, he sees more permanent improvement with fixed devices than temporary ones. A lot of people take the removable appliance out for an hour to eat lunch and then maybe have a two hour chat with a friend having forgotten to put the appliance back in their mouth….is he insinuating us women? haha After using the tissue my jaw has moved forward but by the end of an hour, has moved back to its original place. We'll get there eventually!

EJC, yes I filled out 11 pages of questions too. It asked about everything from A to Z. The only thing that was scored was the pain section – which I do not have along with headaches or extreme exhaustion.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby EJC » Sun Apr 14, 2013 2:02 pm

vesta wrote:Hi Blossom:
I don't know what you have tried to correct the skeletal problems and this suggestion may be of no use. I would try to find an Osteopath who uses Kinesiology (Muscle Testing - I describe it on my blog) to "ask the body" where and what the problem is and how to solve it. (I think Dr. Amir uses Kinesiology. Some people think it's witchcraft, but it has worked for me, although one needs a good practitioner.) Just an idea.
MS Cure Enigmas.net



Amir does use a specific area of Kinesiology as a "test" to work out positioning and adjustments. The Kinesiology itself is not a treatment but used as an indicator. It's baffling to me but it works.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Rosegirl » Sun Apr 14, 2013 2:53 pm

Music,
Dr. Whizbang required a 14 page form -- complete with an essay question -- before the visit. I assume he designs and installs whatever device he decides to use and that he will be the one who tweaks it as necessary. He also said that when the ALF is delivered, I MUST see the AO chiropractor the next day.
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