Ansar Autonomic Nervous System Testing

[morgan617]

I need to ask a really stupid, I guess, question here. Why do so many of you get so many tilts?

I've had one, it showed a problem, I don't see any reason to get any more. If the meds help, you don't need it. If the meds don't help, you know it's going to still be positive. So I'm a little confused by the fact that some people have had so many. morgan

[wareagle]

Hey Morgan!

Let's see...my first tilt was at Mayo in Jacksonville and it was part of an "autonomic reflex screen"..it involved autonomic testing but ONLY a 5 minute tilt. The results indicated a possible problem BUT the tilt was not long enough to really see what was going on. SO..then I went back for an "extended" tilt..this time they did it for only 10 minutes...unfortunately the "specialist" that read the results still was not convinced that I had an ANS problem. Fast forward a few months and I found my doc. in FL...he disagreed with Mayo and ordered yet ANOTHER tilt but this one for the full 45 min. I was actually only able to stay up for around 20 min. but it unequivically demonstrated that I have POTS.

If they had done the full tilt (30-45 min) the FIRST time I wouldn't have had to do it over and over again!

So moral of my story...make sure the person reading the test is reading it correctly AND have a proper tilt done the first time!

[Patricia Gallup]

Patients usually go through multiple tilts because different facilites want their OWN records and results. Especially if they are teaching hospitals. It's pretty standard to get the same testing done wherever you go, depending upon the technology of the facility. Normally the way it's done just varies, some tilt for 10 min. some for 20, some add medication, some not even an IV is inserted, etc.

If a different facility has a different approach to treatment, and wants to start from square one, my daughter doesn't enjoy them, but is willing to do so for a complete picture.

[Poohbear]

The TTT is NOT a DEFINITIVE test!!

I keep seeing that pop up on this site and it concerns me because it is not true. It is the most common test, it is useful but Physicians and patients alike need to rely on more than just this one test for a diagnosis.

You really need a combo consisting of orthostatic readings, the "poor man's tilt" (In fact, Dr. Streeten got to the point where he didn't believe much in the TTT because there are too many false positives in totally healthy people), catecholamine testing, autonomic function testing (such as the valsalva, cold pressor etc), and your symptoms.

The % of false positives and false negatives on the TTT is very high, especially when drugs are used in the test, so clearly it is not wise to use this test as a definitive diagnostic tool in and of itself. Some Dr's may use it as their 'definitive' but I would be leary if that was my Dr.

The other problem with the TTT is there is no standard for how the test is conducted.

It is a test that is useful and helpful to make a diagnosis but all of the top researchers in the field of autonomics will tell you that you can't rely on the TTT alone to make a diagnosis.

[nadine]

I need to ask a really stupid, I guess, question here. Why do so many of you get so many tilts?

I've had one, it showed a problem, I don't see any reason to get any more. If the meds help, you don't need it. If the meds don't help, you know it's going to still be positive. So I'm a little confused by the fact that some people have had so many. morgan

Thank you Morgan for your comment. I was also wondering why people are having more than one, esp. more than two!! I have to say my TTT was very unpleasant and have no desire to ever repeat it.

I was gone in less than 4 mins. and they were scrambling to get MD in there. I could feel myself going instantly, once I was upright and that was all i remember,other than saying -"you're still with me right?"

I have no regret for doing this however, as scary as it was at the time. I knew I was at a Heart Institute and had faith I would be ok. I had read all the info, but just didn't really expect to go that quick. I did recover within a few minutes and was sent for additional testing. Nuclear imaging, instead of stress echo.

I thought the table seemed like something you would have done many years ago, but it certainly worked.

It is interesting at the time they told me NCS, no one cleary explained autonomic dysfuntion. I had discovered this with time, on my own and with this web site -that was a link from CFIDS. Now, the thought is I have POTS and FMS.

Anyway, bottom line is TTT was helpful with my diagnosis . Still learning here.

[Jacquie802]

Hi,

I have had a bunch of TTT. Everytime I see a new doctor at a differ hospital they want me to have a tilt done. There are a few differ things from the TTT at differ hospitals. At one hospital they put this helmet type thing on my head to measure the cerebral bloodflow, and mine decreased dramatically. Then on 2 of the tilts I was on my meds. Then the other one was for a research study. Honestly after the first 2 I didn't find them to be that bad.

Also, the techs I had were awesome so I felt comfortable, even at times I thought I was going to pass out.

[goldicedance]

For many of us here, it is very very difficult to find the meds that help in our fight with POTS. It is unclear what this new machine adds to the mix. The other problem is finding a doctor who understands the ANS and, most importantly, can treat it.

Janet--are you considering working for ANSAR?

Lois

[Guest Julia59]

Poohbear,

I have to agree with you on the TTT---re: false-positives---false-negatives. There are times when I stand up and I'm not able to stay up very long, and then the near-syncope hits, but this did not show up when I had the TTT done. Only the second TTT I had made me feel weird when first tilted, but I managed a conversation with the cardiology student---of course I talked about education in the medical community on dysautonomia"-- . I refused to go off my meds because I couldn't afford any set backs.

The bottom line is that I passed. Dr. Grubb diagnosed the POTS anyway, and still stays with that diagnosis, although he believes my many upper spinal issues/chiari issues MAY play a role---I say this with caution, however. The way i'm doing lately---I feel I may have a stroke when they tilt me up. I'm starting to get these pressure headaches/stabbing sharp pains in my left temple, and the back of my head near my neck----loads of fun............

Other tests are needed----lots of people just don't pass out---and they still have severe ANS dysfunction. Ot they get near-syncope---or they pass out other times, and not during the TTT.

Julie :0)

[dizzygirl]

hmm i've had 4 tilts done-- the intital one to "help" diagnose pots.. one at the cleveland clinic. that also confirmed pots.. one done in pittsburgh to see if i was hyperadrengic verse just potsy.. then one 6-8 months later to see how much we had to go up on BB's..

i "never" want to have to go thru another ttt again.. as they really do make you feel like poop....and i dont see the sence in going thru a 5th one b/c i already know i have pots... and a nutty HR and BP..

this ansar testing do they use it at the big research hospital like vandy or mayo or NIH?? do you know if any of the autonomic specialits use it?

in regard to them keeping you janet on the TTT tilt you where flat lined.. that is stupidiy on part of the docs and nurse's i think.. b/c as dr.g put it in the the confrence vid's.."you are unconscious for as long as the doc leaves you upright" or some thing along those lines... they should NOT have left you upright till you flat lined just to see if they could get you to bottom out like that.. that is ust obserd and pure ignorance.. Never have any of my docs left me up "too see" what will happen..when my Bp's start hiting 60'/40's they lay me down... I'm sorry that you have had such a severe reaction to the ttt.. but the docs I've seen wouldnt do that!! Especiallly if they are trained in dysautonmia!

[janetbrn]

Ansar studies are considered augmentative to Tilt studies, and paid for as such by the insurance industry.

Ansar's indication for orthostasis is sympathetic withdrawal (SW). SW typically precedes the clinical definitions of orthostasis, including POTS, OH, and OI. The idea is to treat the dizzy patient before the extremes of POTS occur.

Ansar is not going to change therapy for those presenting with clinically defined POTS. Ansar will change therapy for those who are "pre-POTS", those who are not serious enough for TTT and would have to live a diminished quality of life until the symptoms became serious enough (if ever) for the Tilt.

People do not have to be trained to recognize POTS using Ansar, because the results are digitally presented. It does not require an understanding and experience with HRV waveform interpretation. POTS and pre-POTS are indicated simply by an abnormal decrease in sympathetic levels upon standing (SW) with an abnormal increase in HR. Ansar can be used to indicate the early signs of POTS and then (as necessary) TTT can be used to confirm. Ansar is a monitoring device. TTT is a diagnostic device.

So, I guess the importance is for the future wave of POTSies. My daughter seems to take after me in so many ways. I'm glad that there is an option to monitor her ANS function. If there is any indication that she is getting symtoms, I won't wait until they are severe enough to require a Tilt.

Since Ansar is a monitor and not a diagnostic test, it probably wouldn't support SSDI. They are not at Vander or Mayo that I know of. However, Cleveland clinic (in FL) has one. Walter Reed is doing a major study with it, so we will have to wait and see.

Talk later...

Janet

[MNsue]

Janet,

Thank you for the additional information. I agree that if my daughter started to show symptoms of dysautonomia, I would want her started with the ANSAR study. The last tilt I had was pure torture. They left me tilted over 15 minutes with a HR over 160. I couldn't catch my breath enough to ask them to stop. I was litterally gasping for breath and crying before they put me down. I will only do another study with a family member in the room to be an advocate.

I am happy for another alternative.

Rhonda

[Michelle Sawicki]

Is the ANSAR along the same lines as the ANSiscope? http://dyansys.com/bedside_ansiscope.htm

http://dyansys.com/autonomicdysfunction.htm

If so, I asked one of the dysautonomia gurus about it some time ago. His reply was "Seems like some form of HR variability. Fractal indices can be calculated too. Nobody knows exactly what this means. We and others have done this type of analysis for years."

[morgan617]

I am betting that the majority of insurances, at this point, would consider this an investigational test and it would not be covered.

If it is available to any of you and you want to use it, I highly recommend you contact your insurance and make sure it's covered. It's like any new thing. It's going to be expensive and the doctors are going to want to get it paid for quickly. We got a hand bone density machine in an office I worked in, and the price was outrageous, because it was expensive.

The doctors wanted everyone over 40 to have it done, but I advised them to check with their insurance first. I of course got into trouble for this, but patients sometimes just need an advocate.

My guess is, as variable as TTT's are, this machine will prove to be as variable as the doctor interpreting it, or the kind of day you are having. I have nothing against it, but as others have stated and it's true, if we are not having a terrible day, the results will be skewered just like the tilt test can be.

The simple fact that none of the doctors trust the tests done elsewhere, or want to interpret them themselves speaks volumes. My cardio said my tilt was negative because I didn't faint. My pcp said bull, look at what your body did.

I go with my pcp because I know there is something very wrong with my body. And meds and/or no meds can skewer any test. Do you have to go off your meds for this test? I can't imagine it being accurate when you still have meds treating you in your system.

So, I guess although the test is much less invasive than the tilt, there has to be just as much variability, depending on how you feel, what meds you are on, even the weather affects me.

I am guessing that if these things are okay, we will slowly start seeing them in offices and clinics (never here in hooterville though, I'm sure) But I would take them with the same grain of salt I do everything. I just don't think it would change the treatment much for all the people that have gone to Vandy, Cleveland, or NIH. No matter what our tests show, or how accurate, treatment will remain a crapshoot for a long time to come.

I think people will find you still need to play around to try and find the right combo of drugs and treatments, just as we do now.

If this machine works, great, but I just don't see it spitting out any more info than any other test, thereby making our treatment easier.

Janet, several people have asked if you work for this company and you haven't answered. I too would like to know. I know it appears I am cynical, however I have learned over the past several years, if it sounds too good to be true, I'm not going to hold my breath waiting for the miracle.....

[Guest tearose]

I am USUALLY very open minded and trusting....this is MY opinion...I feel a snake oil pitch here...

In my opinion...we have a hard enough time getting a diagnosis when we have POTS! Having "pre-pots" diagnosis is not a big deal...you either have the symptoms or you don't. I think EVERYONE who is dehydrated, light headed, has heart rhythm variations, bp variations...has symptoms! In pre -pots, whose to say the person won't recover on their own anyway? Who has even come up with the official diagnosis of "PRE-POTS'?

Sheesh!

I think this is a "fluff" machine that will cost well meaning practitioners alot of money for information they could get in other simple ways.

[janetbrn]

Here I am again. I think I do want to get involved with the ANSAR company. Even though I will come across skepticism, my enthusiasm is not wavering too much. Every experience I have had so far tells me that this is a very hopefull and exciting tool. My experience aside (which was a very good one), I am now hearing people talk about the ans in the context in which it belongs.

Like I said before, there is no magic cure. People with advanced POTS may not be affected much by this technology. And, each piece of information that is derived from the test has been available for many years done through several test over I don't know how much time. What is different is that it is now packaged in one piece of software that will do all of the calculations to measure sympathetics and parasympathetics, independently, at the same time.

Anyone with ans dysfunction should have an ans specialist. Just how many never get to find that out? That is why I am saying that ans assessment and evaluation should be more commonplace. Severe dysfunction does not USUALY happen over night. Why do people have to get soooo sick before they get to find out that there is something going wrong with the ans.

As far as snake oil. Like I said, there is no promise for cures coming from me. I just hope that, just maybe, somehow, by the grace of God, I can invoke some change in thinking. A cardiologist told me once that "doctors just don't care about the autonomic nervous system". Why not?

As far as the insurance companies go, they are paying for the test 2-3x year for testing for individuals with most chronic progressive disease. HMOs with capitated programs are the only one't that are a problem. That's the easy part.

cpt 95921-59 and 95922-59

My insurance company (bcbs) paid about $100 for the test. I think that Medicare pays a little more.

I am glad that so many have participated in this discussion. I will be on my way with some decisions to make. Again, bless everyone here and my thoughts are with you to feel better.

Janet

[janetbrn]

ps. there is no official diagnosis called "pre-pots". It was just a way to illustrate that there is often a progression to this disease. You go out to start your car one day and the battery is dead. There was no official "pre-dead battery", but the battery was not fine the day before.

[futurehope]

I actually welcome the idea that a doctor could perform a relatively easy test to SEE if my condition is progressing and getting worse (or not). That is one thing I'm not clear on.

The TTT is no fun for sure.

I just wonder if the diagnosis code mentioned by Janet is the one they use for reimbursement?

Janet, Did you say to contact you if we would like our doctor to perform this? I live in Maryland near Baltimore and the doctor I'm thinking about (where I might decide to do this) is south of Baltimore. He's a neurologist familiar with POTS.

[morgan617]

Okay, so I have a friend (my best friend) who works in the insurance field. She is a person who decides if these tests are covered.

The cpt numbers above are described in their systems as tests which involve placing catheters in an artery. In 30 years of nursing, I can tell you I never saw a Dr. place an arterial line in his office. This would be done at the minimum in an outpatient hospital setting.

These codes as described are tilt table testing type codes and are considered INVASIVE. Any time you have to insert needles, it's invasive, these codes specifically state the R-R rate is measured by an arterial line.

That means if a doctor is billing under this code, he is billing in a less than legal manner. Unless he is willing to put an arterial line in you in his office. I would not go to a doctor that did those kinds of procedures in his office, unless his office had an outpatient setting for any emergencies.

My friend said they do reimburse, BUT, it's under the assumption that the guidelines are being followed. She could not find a single claim for my state or the several states surrounding me, that were not tilt tests, under this code.

So, Janet is correct, some insurances will pay, however, I again would implore you to make sure that the doctor you find is CONTRACTED with your insurance. If they are not, they can charge anything they want and you will be stuck with the balance. If your insurance does contract you won't be charged more than they will allow, outside of a copay if you have one. It's the doctors that don't contract that can be a horror story.

Also, any of you that have been to one of the big centers, you've already had this testing done and they already know. Most of the doctors who do all the intricate testing for research or Vandy or Mayo, do put an arterial line in you when you get tested, so you've already had this test done, only more exact and better.

However I think the real issue here is, does it really make a huge difference in your treatment? They will still tinker with your meds, there are still only very limited meds to work with, and "pre pots" "peripots" or "post pots" the treatment will not change. The meds will still be fine tuned, played with, and frustrating.

Doctors can tell when some one is developing congestive heart failure, but the treatment does not differ whether it's new onset or advanced. The only thing to change may be the dose, or tinkering with a new med.

Some of us are going to get progressively worse, no matter what. Some will stay about the same, and some very fortunate ones will improve. Will it be because you have a valsalva in a doctors office, or extreme tests done under very controlled conditions. From reading posts every day for several years now,, it doesn't appear to matter.

I can't speak for the leading ANS guys, but even they write that we are a long way from figuring that out.

Lastly, the question was raised about why doctors don't care about the ans system. It isn't even covered in med school to any real degree. It's so complex, I just think it's someplace doctors don't want to go, because of it's complexity.

I have a friend who sees a rheumy. She asked why it took so long to get in to see him. He told her there were 12, yes 12, rheumies on one whole half of my state and into two others. At the time he decided to become a rheumy there was a big boom in the investigation and it was hot. Then funds petered out, all the problems remained complex and now no one wants to be a rheumy, because you can't fix anyone. it's too discouraging.

My guess is, it's very much the same for this illness. Doctors are human. they want to go home at night knowing they have made people feel better. Even oncologists have more luck in this area than rheumies or ans docs. Doctors don't want to mess with us, because they can't fix us and not enough studies get done, because there are too few doctors willing to deal with the discouragement day in and day out. No good doctor wants to see people suffer and feel helpless about it.

We need to be really thankful for those few that are willing to go home discouraged every night, but get up every day and try again. It can not be easy. morgan

[nadine]

Morgan- you write like a true veteran of this illness! Some very interesting points.

Your comments regarding the ability to treat the illness and it's difficulties -trial and error,certainly seems to be my experience. Many times I have stated, that when people talk about cancer or other well known diseases, HIV,etc. -people respond and know how serious the illness is. Far more public awareness and understanding from the public, family, friends, medical profession,insurance companies and money for research etc. -hopefully someday we will see the same and more physicians who feel encouraged to research this as a specialty.

I have also worked with physicians for many years and most were hard working, compassionate individuals-who work endless hours and I really would not want to be in their position everyday. Of course, we all have our negative experiences with physicians, myself included-but I will keep trying until I get one that I feel I connect with, more important to me sometimes than the diagnosis. I am thankful that although my MD and I don't always agree,for sure- HE KNOWS Me and that is worth a million specialists or fancy tests sometimes.

I am open minded and understanding in regard to people wanting to try and learn about new options for treatment and testing. I just agree - do the research and make sure the benefits exceed the cost, in all areas. That's how I look at it. Will I benefit, physically or emotionally--

[janetbrn]

hcpc_code_lookup

hcpc_code_id hcpc_code_version long_description short_description last_updated

95921 12 TESTING OF AUTONOMIC NERVOUS SYSTEM FUNCTION; CARDIOVAGAL INNERVATION (PARASYMPATHETIC FUNCTION), INCLUDING TWO OR MORE OF THE FOLLOWING: HEART RATE RESPONSE TO DEEP BREATHING WITH RECORDED R-R INTERVAL, VALSALVA RATIO, AND 30:15 RATIO

hcpc_code_lookup

hcpc_code_id hcpc_code_version long_description short_description last_updated

95922 17 TESTING OF AUTONOMIC NERVOUS SYSTEM FUNCTION; VASOMOTOR ADRENERGIC INNERVATION (SYMPATHETIC ADRENERGIC FUNCTION), INCLUDING BEAT-TO-BEAT BLOOD PRESSURE AND R-R INTERVAL CHANGES DURING VALSALVA MANEUVER Autonomic nerv function test

Well, I had to check the codes as fast as I could. I copied and pasted the info from the CMS government site with all Medicare info. I'm not sure how funky it will look. I can't find anything about a-lines in there. Probably doctors need to use autonomic dysfunction as the primary icd9 code to get paid. My test sure didn't involve anything invasive. And the 2 codes combined only paid about $100. I don't think $50 would cover an a-line.

Probably, no one is billing with, "I think my patient is fine, I just want to check". That's because it is reverse to how medicine is done, in the US anyway, and they would not get paid. What still puzzles me is that I am not getting an overwhelming yahoo to the idea of getting to change the way doctors as a whole look at the ans. The last person who posted was right. Med schools are doing great if the skim over it. But isn't it the people who have an ailment of some kind who yell and scream and get funding for research, the ones who change how it is approached? That is why I think it will be diabetics who get ANS testing to be better understood. Their ans function gets pretty messed up from thier disease. If they find out that the decline can be monitored and treated to help prevent the nerves that control the heart from dying...watch out...they will march on Washington.

I don't want to cry about the year I spent on the couch, I want to help prevent it for the next guy. I guess I'm one of the ones who believes everything happens for a reason. I see you all here, helping and supporting one another. You are all using your experiences to guide eachother and help eachother from hitting bottom. Sometimes it is the very act of reaching out that keeps you going. I thought I would have shut up by now. Feel free to tell me to shut up if I am droning on and on.

[Jacquie802]

I don't think anyone wants to cry about a year (or 10 years, etc.) they have spent on the couch. For some people that is their reality since they have a hard time getting around.

I'm just curious on this one, but can you really control how bad your POTS is going to get in the long run??

[janetbrn]

No, noone here wants to cry about it. That is why your here. You're either trying to help yourself or help someone else. Both are important. About that control thing??? My opinion is that only God is in control of that. I think some people get better, some worse and some stay just about the same.

About 3 years ago, I had all but given up. I prepared my kids for the worst and started shopping for a freezer so I could buy enough frozen dinners so my kids wouldn't starve. Then the idea to try the menstrual suppression popped in my head. It worked pretty well. I had 2 good months for every bad one. I felt alive enough to go to the osteopath for adjustments 1x a month. The last addition of meds seemed to fine tune me. My doc will try to wean them in 6 months or so. He told me that the meds would "reboot my hard drive". I suppose he thinks there is still life in this old "motherboard". We will see how it works.

[Guest sonotech]

Well, I am certainly not TRYING to burst your bubble "Janet RN", but look, it is soooo obvious that you are taking advantage of sick and desperate people.

I did a search on YOUR posts, and ALL of them are about ANSAR!!! If you were so knowledgable and REALLY wanting to "help" others I would think that you would be responding to OTHER POSTS as well.

So, the way I see it......YOU WORK FOR ANSAR, and you are trying to get the word out about it so you can make some commisions or something.

I am sorry to be so blunt, but it angers me to see these posts from you "wanting to help others" by "helping yourself"!!!! It is truly wrong!

You know these people are sick and are at the point that they WILL TRY ANYTHING and it seems like you are sort of using that to your advantage.

I hope deep down inside that this is NOT true, but that is what my "gut instinct" says.

[goldicedance]

Well said, Sonotech!

[Dizzy Dame]

Thanks Sonotech, I had the same feeling but was nervous to post it.

Janet,

Please don't come to a forum like this trying to sell us things! If you want to help, try answering others' posts, share your own story (if you really do have dysautonomia). But it's horrible to think you'd prey upon the desperation of others in the one place where all of us have found a home. I hope I'm wrong about you, but if I'm right, it makes me sick to my stomach.