Sorry to be the bearer of bad news, but I finally made the call to set up an appointment for a consultation and was told they are no longer seeing NCS or POTS cases :( I was feeling so lucky to have them in my backyard. I asked "not even just for testing" and they said no...they are referring people to Dr. Kaufman at NYU in Manhattan. It might as well be the moon because thinking about going down there feeling like I do every day seems impossible. I know you'll understand that. I know I am still lucky to be in the same state as NYU - I'm just feeling sorry for myself...sorry :( I was so hopefull and now I've swung back down to my usual pessemistic Charlie-Brown self.
I am going to try a few Neurologists by phone to see if any of them around here know anything at all about AD first, but if I don't get to feeling any better and my Cardiologist can't help enough, I'm going to have to bite the bullet and go down there. The other complicating issue in all this is my husband will not go down there with me...he just has this almost phobia about the city...even though we would take the train. I would have to get one of my sisters to go and they're still not totally on board with my limitations.
I didn't even get to WHY they aren't seeing us NCS/POTS people anymore...it seemed pointless. Just wanted to pass along the info. Please by all means, if you have any question about it and wanted confirm it in case you were counting on them, please contact them.
I'm really sorry to hear that, Stephanie. I can understand how hard it would be to make a trip into the city for you--I dread having to take Nick on long trips.
I wonder if their decision is based on an opinion like a cardiologist we saw had: "no doctors wants to see POTS patients because they take up all their time and you can't run a practice off that kind of patient."
That would really stink.
That reason is really awful and would be so dissapointing if that's the reason they won't see us :( We are the ones who really need the help...even if it's challenging...especially since it's challenging. My husband convinced me that asking why they won't see NCS/POTS patients might hold some kind of clue. So I plan to call back and ask why they have made the decision not to see us. I'll let you know what I find out.
I'm glad you and Nick have an appt. to see SOMEONE to try to get some answers.
The Hippocratic oath is no longer in use, but there are modernized versions that are used in some places. It is not a requirement, though coursework in medical ethics is a requirement.
I cannot speak for this particular situation because we don't have a response from this physician with regard to the motivation for discontinuation of inclusion of POTS/NCS patients in their practice; however, I can shed some light on a situation that I could foresee leading to this scenario in theory.
Insurers pay a certain amount for each office visit, each procedure, etc. If you get monthly statements from your insurance (those of us on Medicare are used to seeing these), take a good look at what your insurance is actually paying for vs. what you actually GOT. Did you pay for a 20 minute office visit, though you recall your doctor actually seeing you for an entire hour? This happens *extremely* frequently with dysautonomia patients (and of course other patients with complex chronic illnesses). If a doctor has a diverse practice, the time/money can be "made up" with other patients who are less "involved." If a doctor starts dedicating more and more of his/her practice to dysautonomia, he/she can actually start losing money instead of making money. Likewise, some of the autonomic testing equipment can actually be a money-loser for a hospital, which is why it's so difficult to convince more hospitals to open up full autonomic testing labs.
Doctors are, of course, concerned with ethics. You can't keep a practice open that's losing money though... you can't keep the lights on in the office or pay your secretary, your nurses, etc.! I don't want to start a political discussion here (it's not appropriate on this forum whatsoever, we have "groups" on the site where political discussion is permitted... very bottom of the right sidebar to find Groups), but I will say that I think this is a sign that our current healthcare system is not a "good fit" for folks like us with complex cases and/or rare diseases.
When my son had the Thermoregulartory Sweat Test, they said they lose money on that test. It ties up one room for a complete afternoon because of the time the test takes and the very lengthy clean up time required afterwards. I was told the hospital actually loses money on the autonomic lab, so I guess that's why there aren't a lot more of them.
My new internist (highly recommended) flat out told me many doctors don't want to treat AD because they don't know what it is or have a clue what to do to treat it.
My recent six week revolving door hospital extravaganza has also taught me the majority have EGOS that won't let them listen or learn.
If I have to drag out my paperwork explaining the difference between being hypovolemic and dehydrated and that my sodium will be normal (although it has literally been one below or above "normal" even if I am hypovolumemic while begging for another bag of saline like I am trying to get them to write me a script for Heroin I might lose it....sorry to get off track.
I have to see a gastro due to a new symptom that he has to work on, I already talked to his office and they said he knows nothing about AD and does not feel he can treat me, my new internist said don't mention the AD, we need this test and a fix, let me worry about the AD and coordinating your care and my Mayo Gastro agreed and even told me how to approach the doctor and what NOT to say (having talked to Mayo being the most important thing ), he spent over an hour on the phone talking to me and I didn't get a bill, but the lovely guys here get a call to verify a how long I had been on a medication and I get a hospital visit bill (which is 3x's the cost of a office visit, why they couldn't have called the phamracy I don't know, especially since I had a severe reaction, could not take it anymore and they did not find it important to contact him for the first 10 days)
Ok I am all over the place which means I need to stop...sorry.
It's so sad that money just drives everything. I guess I get it, but it's still sad.
I did end up calling back today to ask why they no longer treated NCS/POTS patients and the only woman in the office today didn't know. She said all she knew was that she was told they weren't treating them anymore and to refer people to NYU and Dr. Kaufmann. To my knowledge, they still have a functional AD lab but I didn't ask that.
I am so baffled by the fact that AD is such a mystery to doctors. I know there must be so many factors/possibilites of what a patient can present with, but I can't believe docs don't know more about it. I have a call into a Neurologist and I'm going to ask my very gifted Endocronologist if he has any reccomendation. I also plan to level with my Cardiologist and ask him if he has any reccomendation. Hopefully his ego doesn't get in the way.
I wish I had some magical advice to give those of you that are still struggling to find understanding doctors. For some reason we have two dysautonomia clinics, plus Dr. Grubb, plus quite a few other dysautonomia-conscious hospitals and docs here in Ohio. I guess that once treatment gets entrenched in an area, the information starts spreading more easily. I do encounter my share of "boneheads" when I have to go to the emergency department sometimes or when I need a specialist like an endocrinologist here locally, but with persistence I can find what I need here in Ohio. It's so depressing for me that outside of the Midwest, it's such a different story for so many of you.
From what I can tell, we need to band together as patients and plead for at least two more autonomic clinics to be added: one in Florida and one out West. In my opinion (and those of you folks that actually live in those areas, feel free to correct me if I'm wrong), the best candidates for the sites would be Cleveland Clinic's or Mayo's Florida site (because we know they already know what they're doing with regard to autonomic) and either Mayo's Arizona site (which has the benefit of having Mayo behind it with all their expertise) or UCLA (which has the benefit of possibly being closer to more patients ... but I don't know, there's a lot of population *density* near UCLA, but Arizona might be more centralized to the patients out West who would need to travel to get there).
I think the more of us that can get testing, the better. The responsibility for that falls on those of us with the insurance coverage and financial resources to be able to get the testing; I know some just aren't able to do it. But if those of us who can, do, those test results from the nation's top hospitals become "ammunition" in the "discussions" we have with local doctors ... like what Kav31675 describes in having to advocate for her own right just to get the IV saline she so desperately NEEDS. I know it doesn't seem *fair* that we have to be the ones to educate our own doctors, but I think at this point it'll be faster for us to work within the system than to rail against it. I've found some doctors that didn't have ego issues and were willing to learn, and having that testing has been a HUGE asset to me (it's especially helpful with emergency department docs who seem like they're going to toss me an ego before I head them off at the pass with enough enough intelligent explanation fully-peppered with medical jargon and documentation to back it up that there's no room for them to protest). Over time, I've seen a shift in the climate at the hospital I go to; they comment that they see a few other cases like my own in emergency on a regular basis, and are now much more comfortable treating us. I hear more comments like, "I see you get the same treatment each time you have a 'flare up,' so should we just go ahead and do that?" and "It sounds like you have a great handle on your own condition. If you're telling us this is what a flare up for you is, then let's go ahead and work from there." etc.
Maybe one strategy that we need to consider as a community is networking with others in our general geographic areas and "breaking in" more and more hospitals in different states. I think the more of us that a given hospital is exposed to, the more that the doctors will become comfortable with treating us. The difficulty is, again, that if too many patients start seeing the same doctor because they get popular for being a good dysauto doc, it might tip the scales too far in terms of making the practice bleed money ... and then do we end up in the same boat that started this conversation? Oy.
I am so lucky to have found this site where everyone is going through the same struggles I am.
I tried to go to my first year of college about a month and a half ago. I had got set up with a primary care doctor there who knew about POTS because her cousin had it. She understood how horrible it is and how no one understood it. When I got there I couldn't eat a lot of the food there and I wasn't sleeping well which set off a flare up for me. I ended up going to the local walk-in clinic to get IV fluids (this new doctor had told me to go there). The doctor walked in and I told him I had POTS which was making me short of breath and dizzy. I told him I knew my symptoms resembled anxiety but that wasn't what I had. He went on to tell me that he was pretty sure this was all anxiety but to make me happy he would give me some IV fluids. He then went on to call my mom and look up POTS on the internet. He came back into the room about an hour later, asking me why I wasn't on a beta blocker for my POTS and I was probably having a flare-up because I wasn't properly treating my POTS.
I just feel like there are way more dysautonomia patients out there than there are are doctors treating them. If this wasn't true then the wait times to see dysautonomic doctors would be a lot shorter. My POTS doctor is a cardiologist that works at the veterans hospital full time and then one morning a week she sees POTS patients. The wait time to see her is over 6 months. It's not like diagnosing a condition like POTS is so difficult: you take the pulse laying down and then you take it again standing up.
I thought that once I got a diagnosis people would take me seriously. I guess when doctors don't know about that diagnosis it is almost like I still don't have one.
One of my frustrations is doctor's thinking that my pure autonomic failure is no big deal and can be simply treated by my getting up slowly so I don't fall down. Period.
I recently saw a doctor for a swallowing problem and that was her perception of autonomic dysfunction. I would just need to go through life "being careful".
When I had an endoscopy recently the nurse seemed disgusted I had ad dx she had never heard of. She almost acted like it didn't exist if she hadn't heard of it before. I basically told them my BP could fall and to monitor it and give me extra fluids. They ran a strip which they gave me later and I saw it did drop 50 points. They also gave me extra fluids but it was almost begrudgingly.
I think it would be very helpful if we had a printout of what was required with sedation.
Does something like that exist?
Heiferly makes a very good point about testing. I am in no man's land here in the west for doctors and testing. No one has even suggested testing because they really don't understand it's importance. I will consider it my job to enlighten them. I will be pointing that out to one of my doctor's on my next visit and will point out the problems with the endoscopy staff as well as after reading about my dx. in the NIH handbook now available I realize my epi pen may not even work for me. I need a plan! I will talk to my allergist this next week about that one. This is a new area for them so I just need to point the way to what is needed. I have some very good doctors who have no ego problems who just haven't been exposed to this subject before. I have run into other doctors tho who are just not up to the task. One neurologist didn't want to see me as he didn't feel qualified. The next one diagnosed me but didn't seem comfortable treating me and handed me right back to my doctors. I wish I at least came with a manual. Marie
I have found a journal article that outlines the do's and don'ts for dentalwork in terms of dental anesthesia (even local anesthetics) which I keep a printout of, and I've never needed them for myself but I've also located articles about anesthesia for childbirth or C-section. We can look for articles on regular anesthesia and see what we come up with ... hopefully there are some guidelines published SOMEWHERE.
I definitely understand your concern about your epi pen. I would talk to your allergist. I didn't plan well enough about what I would do in the event of a severe reaction once we knew that I couldn't tolerate the classic H1 antihistamines with my dysauto, and when I had a severe drug reaction during my last surgery ... well, I was under anesthesia so it's not like they could consult me then on my opinion on how to handle it. I came out of anesthesia in the middle of the commotion ... not fun. The entire debacle took about a month of medication to get out from under and was less than ideal; if I could go back in time, I would've done better planning in advance!
One idea for you, Marie, is to have your allergist consult the work of Dr. Castells (the famous mastocytosis specialist). She has expertise on the intersection between dysautonomia and allergic response, and there might be some insight on what strategy will be effective for you in her work.
Stephanie, I was referring to the handbook you alerted us too in your former post entitled "Free NDRF Handbook for Patients with Dysautonomias, written by Dr. David S. Goldstein, MD, PhD and Linda J. Smith". Thank you for that reference as I learned a lot by reading the whole thing and the pictures of heart innervation/lack of innercation were very helpful as well. I go the name of the book wrong in my former post, sorry about that.
Heiferly, thanks for the reference to Dr. Castells. I will for sure mention this to my allergist. Sometimes it is helpful if the legwork is done by us and we can just hand a doctor a reference to a journal article.
I think any journal articles that outline the procedures necessary in sedation would be very helpful to everyone. If we can build up a reference library for ourselves we won't have to keep hunting for all.
This could really make a difference as Heiferly points out when we have procedures done. We need everything on our side that we can stack up in our favor. Marie
Being in FL and being a big Mayo fan I would like to say yes get an autonomic lab at Mayo FL but Dr. Cheshire the Neuro who deals with AD at Mayo FL is so backed up they aren't even allowing people onto the waiting list to schedule an appointment, even with a Mayo, MN referral and his approval.
I even asked if there was a waiting list to get on the waiting list.....LOL
Mayo Fl is tiny compared to the mother campus but we have several top notch universities who could replicate Vanderbilt's autonomic disorder center and gladly take some of the "pie" that is being doled out to do research.
I had one ER doctor say to be honest I know what AD is but only because we read about it in medical school and you obviously know what to do so first let me a tell you no matter what happens we are equipped to handle it but how do I treat you to best help you and then recapped what he was going to do and asked if I thought he missed anything. I almost fainted (in a good way)
I know just cut them off at the pass, as soon as they come in I tell them this is what I have, this is what I need to be stabilized (and sometimes add this ____ symptom is not typical so I am worried about it) and if you would like to read why written by other doctors because you think I can't possibly know what I need I have this stack of journal articles but you don't look like the doctor who doesn't even know the difference in something as simple between hypovolemia and dehydration and that my salt will come back normal when you test it......
I'm over it, they either say well you certainly know what you are talking about, which too I say unfortunately I have had to learn since I had to travel all the way from central FL to Mayo, MN to even get a Dx or know that AD existed
or they quickly leave the room with a yes I know what AD is and the nurse delivers the IV and most of the news but I get what I need.
I'm over doctors and advocate for myself as much as possible.
I did read somewhere about what special precautions need to be taken if we with AD have general anesthesia, it said something about extra fluids before and during and at least an arterial line to measure BP (I didn't understand that).....I will look for it, I am trying to save and mark everything plainly since my brain isn't wanting to work with me.
Heiferly - I too, have a dental recommendations printout for POTS, though we haven't needed it yet. I'm afraid to take my son to a dentist in the condition he's in. Definitely want to find a dentist with some experience with this. This article is at jada.ada.org
I have found recommendations for sedation and surgery for Chronic Fatigue patients that also fits with AD. One quote from a CFIDS site is entitled Anesthesia Protocol: Patient Cannot Receive Any Histamine-Releasing Drugs There are recommendations from various doctors on this site anapsid.org/cnd/drugs/anesthesia
Living in the San Francisco bay area, I am surprised at how hard it is to find a knowledgeable doctor regarding POTS and AD. The doctors we've seen don't know anyone to refer us to. We have an appointment with pediatric cardiology at Stanford in two weeks which may prove fruitless. Maybe I should lean on Stanford to open an autonomic lab. These are teaching hospitals. You would think someone must have training for AD here. They should want to "deal with it" here, of all places!
The cardiologist we saw last June was informative, but won't test or treat my son. Just gave us info to take to other doctors (who don't know what to do). His endocrinologist clearly doesn't want to be the one to treat the symptoms, although at our last visit, he was very willing to do the blood tests I asked for - aldosterone, norepinephrine, and others. He didn't know how to order an angiotensin II test, though. Anyone here know?
I realized at that last appointment just how much I am the driving force in my son's care. If I had said nothing, he would have gotten only thyroid and pituitary hormones tested. I have been the one dictating (suggesting politely) the AD care, asking for orthostatic testing, cardiac testing, etc. I had to ask that he be admitted and put on fluids before his next mri with anesthesia. They thought he could just come in and do it as an outpatient, la di da. It's scary to think that the outcome of all doctor visits may depend on what information I "bring to the table" and the doctors willingness to listen.
We are still at the beginning with the POTSy symptoms finally being understood and accepted by my son's docs. They wanted to believe it was all deconditioning. I feel that a teaching hospital could really learn something from his course of the condition, since it seems to have started due to pituitary and adrenal dysfunction.
Saw an article online and I thought maybe this is what they were thinking at Greenwich Hospital which made them stop treating POTS/NCS patients? Just guessing at this point. From a few of you lovely ladies here, we know already that the quote isn't true. Guess it's just an article you have to take with a grain of salt. Like I said...just trying to figure out why they stopped seeing us?
"Our impression is that most patients with chronic orthostatic intolerance do not have a primary abnormality of the autonomic nervous system but instead suffer from adverse effects of compensatory responses to decreased venous return to the heart."
I am sooo sorry to hear this - I live in NYC and know only too well about the crazy lack of resources in the tri-state area. I actually tried to see Dr. Kauffman and he said he couldn't help me so I'd love to know what you hear (?).
I had my testing done at Mayo but I know that Columbia University has an autonomic lab as well under Dr. Louis Weimer. I went to Dr. Weimer to discuss my test results from Mayo and to see if he would oversee my treatment.... one note of caution - Dr. Weimer is very nice but he seems much more interested in testing than treating so I've found it frustrating at times. He sees patients for treatment only a day or two a week and you often end up with one of his often inexperienced "fellows." In the hopes of finding someone a bit more engaged, I ended up begging my way in to see another Dr. in NYC who I read about on a board named Dr. Mark ****** who runs the hypertension center at Cornell Medical. He is WONDERFUL. He does not do testing and he is not a POTS specialist but he sees a lot of complex cases, POTS being among them - and is extremely caring and tries to be accessible which is so important when figuring out medications. That being said, he is very, very busy and in high demand so you might have to wait for a bit to get an appt.
I wish I had some better answers for you. If i find anyone else in the tri-state area who looks great I will certainly let you know. Please let me know how you get on. Are you currently on any medications and, if so, who is managing your care right now?
Enzymelover: I am also in the san francisco bay area and I go to stanford. I have found the pediatric cardiology department there not great. However, I only ever saw one pediatric cardiologist and she was nice (her name is Dr. Dubin), but she didn't ever want to do any testing or treatment. After seeing her for years, she finally said "you problems are really more autonomic and you should see Dr. Friday." I absolutely love some parts of packard children's hospital (like their OT and PT departments), but there are other departments that I have had issues with. Dr. Friday is terrific but she only sees adults (I managed to get in when I was 17 because my mom is pushy haha). Anyways, that's just my experience.
Sorry, the list of words that are ****ed out is done automatically by a computerized system on the site so it's not something that can be fixed by hand. That name is one of the problems with the system, the same with any man with the first name that is the shortened version of Richard; I mean, who ever heard of "The Richard Van Dyke Show?" :-p
When you need to type a name like that, I think you can try putting a small punctuation mark in the middle of it. Here, I'll run a test run in my post and see if this gets through:
Sorry about that guys. We have children on the site and we CLs and the moderators can't catch profanity and spammers instantaneously so certain words are caught automatically without human intervention. For the most part, it's a good thing. Except when it's not. ;-)
Thanks! Dr. Friday is the cardiologist we saw in June. I think she would have been "terrific" for my son if she had found an arrhythmia, and if he were older (he's only 14). She didn't put him through any stress testing, didn't even ask him to stand up for orthostatic vitals. He sat quietly in his wheelchair while she checked him with her stethoscope. She thinks he may have EDS because of his hyperflexible joints, but no heart abnormality.
I am hoping to get a thoracic ultrasound done at LP. I really want to know if there is any problem with his thoracic blood vessels - either overdilating due to EDS: vascular type, or overconstricting, due to his severe growth hormone deficiency.
My experience with Stanford has been mixed. It's the luck of the draw, until a treatable abnormality is found, and it better be "textbook" or you get passed back and forth. sigh....
Oh boy...Dr. Kaufman is the one I keep getting refered to by other Neurologists who say they can't help me. Luckily I didn't waste time and energy going to them, I've been calling. I was a little confused...did you actually see Dr. Kaufman? I am guessing from your screen name, you have POTS...do you have anything else AD related? Did he say anything about Neurocardiogenic syncope by chance? That's what I have been diagnosed with.
Thank you so much for the info on Dr. Weimer and Cr. Pec.ker, lol! Is Dr. Pec.ker associated with a hospital? Where is he? And thank you for keeping me in mind if you find another doctor. I was given a Neurologists name by my psychiatrist who seems to be interested in this, but he said he was kind of gruff. This coming from a gruff fellow himself! I might have to try him out anyway.
My Cardiologist has been trying to treat me but I know I need someone else. He's pretty much based the treatment on my low blood pressure and the mechanism that kicks in with the AD. I tried a beta-blocker and I couldn't tolerate how tired it made me. I'm on midodrine now and I believe it is helping but hasn't stopped the symptoms completely. I see him again on Friday. Are you on any medication? Thanks for writing,
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