Specialty Center appointment

[brainchild]

I was seen at a Specialty Center recently.  I searched this forum and the internet at large for months for any and all information about what would be done and what an appointment there would be like.  I want to share what it was like for me for the others who are where I have been.  I can’t say which one in a public post as it’s against the guidelines of this forum.  I had a poor experience and I feel that it’s more worthwhile to share that not every Specialty Center visit is helpful than to share which one I went to and not say that it was a negative experience. I’m not trying to dash everyone’s hopes.  I do want to add some reality that just getting in at a specialty center is not necessarily the holy grail and all will be well if you can just make it there.  I read a lot of comments of people who cannot make it to a specialty center for various reasons.

All I can share with you is what happened for me and what I thought about it.  I can’t guarantee what will happen for you and it is likely that your experience will be different from my own.  I am not a physician and none of this is shared in an effort to tell you how to manage your own health.  I am sharing my experiences to help others in making decisions, or at least to lower the effect of the unknown. 

I have included headers as a sort of index so you can find what information matters most to you without having to read the whole thing. 

I will use “Doctor”, “Nurse”, and “Specialty Center” in place of actual names and will use they/them pronouns to obscure gender so as not to divulge identifying information about which staff/clinic I interacted with. 

Referral Process

I had been reading on these forums and elsewhere of where to be seen.  I live pretty close to another Specialty Center clinic, but they don’t accept my insurance and they wouldn’t let me self-pay. So I was trying to decide between Stanford’s review referral and Specialty Center where I went (miraculously in-network with my insurance).  I didn’t want to travel due to wear and tear on myself.  I figured the cost would be similar between Stanford’s $750 fee and the flight/rental car/hotel/food costs of travelling out of state.  I discussed referral to a specialty center with the cardiologist whom I first saw when I suspected POTS.  This cardio was aware of POTS, but had never managed a patient.  Cardio recommended Specialty Center; he leaned toward being seen in person versus a review of paper documentation. 

My PCP did the actual referral paperwork.  There was a delay in getting all of my documentation, but that was due to office staff faxing blank forms.  I was told that it could take Specialty Center some time (I think they said 2 months, but I’m truly not sure anymore).  I heard back within a couple of weeks.  Specialty Center had all of my information in March 2019 and I was scheduled for an appointment early October 2019. 

Waiting

They did call me at some point to reschedule my appointment; the doctor wouldn’t be in that day.  They changed it to about 2 weeks later, and I would be seeing a different doctor.  I was really anxious to be seen, so this was the last thing I wanted, but another two weeks wasn’t that bad.  I do think that I asked to be on a cancellation list. 

I was glad that I had decided to drive and hadn’t gotten a flight.  I had asked what would have happened had I scheduled a flight when they called to reschedule.  They told me that you can get documentation that you are flying for a medical appointment and some/most airlines will allow you to change your flight without a penalty.  But please ask about this should you choose to fly. 

I called a couple of months before my appointment to ask if there was anything else that I could do to help; but they just said that they want what they asked for in the referral forms.  I had tried to get more diagnostic testing done so the autonomic specialist would have as much information as possible. I didn’t want an appointment with a lot of guessing.  You know the ones: “Well, if we knew for sure about X result, then we could move forward. We’ll have to wait and see when that comes back.” 

So the waiting was draining, but at least I had an appointment and insurance coverage.  I also put myself on the wait list to see others specialists at other locations.  One had a year wait and the other was indefinite due to other reasons.    

Specialty Center sent an information packet with my appointment time, clinic address, area map, instructions for appointment day and a list of area hotels. 

Travel

I chose to drive as flying is stressful for me.  I also estimated costs and it was a wash.  A major factor for me is my inability to eat out.  I have a lot of food sensitivities and find that most restaurants don’t understand or comply.  It is much easier to prep and take my own food in the car versus in a plane.  I had also planned to take my dog and that played in to the choice as well.  (Long story, he was elderly, he was a big comfort for me, and we’ve traveled a lot together.  He passed away before my appointment.)

Reminders

Specialty Center called with automated appointment reminders about one week before and the evening before my appointment.  They say to bring current meds and supplements.  All they wanted from me was a list of meds/supplements with strengths and dosages.  I didn’t have to take the actual bottles – I did, but I had a list and that was all they needed. 

Day of Appointment

The directions they sent were very clear.  There was a lot of construction in the area and the traffic congestion was high.  I had a 1:45 pm appointment and I left the hotel at 10:30am – either wait in the hotel or at the office and I wanted to make sure I didn’t get lost or stuck in traffic. 

Meds/food – they sent me information as to which medications to stop and when and when to stop food/water before my appointment time.  For me, it was 3 hours before for food/water. 

Check in #1–   You just give them your name and they tell you to have a seat in the waiting area. 

Check in #2 – I was called up to the desk within 10 min of the first check in.  They did the standard medical check in stuff – review address, emergency contact, pay co-pay, sign forms.  They were very nice and I didn’t feel rushed.  I needed my ID and insurance card.  They also asked for an email – they send you info on how to get signed up for the patient portal to that email.   I asked and was told that they see autonomic patients from less than 9 yrs old to over 70 yrs old. 

Waiting area – It’s a big area. They have free wifi and there are some outlets around for power.  I found it fairly warm; I expected it to be hospital freezing.  I was glad that I had layers – I would have been sweltering if I had worn what I expected to need for the temperature outside.  I used my extra time to sign up for the portal while I was there.

Autonomic Function Testing – They had a cancellation and so took me back nearly an hour before my appointment.  I told the tech about when I last ate, and the timing worked out for me.   I was taken to a smallish room with a desk and a tilt table.  This room was much cooler than the waiting area.  There is a bathroom nearby and I was allowed to use it before the testing.  I laid down on the tilt table and the tech placed all the equipment – wrist cuff and finger cuff on one side, blood pressure cuff on other, and EKG leads.  They did a series of tests and the tech explained what we’d be doing and how long it would take.  We would redo each test as many times as needed to get good results.  First test was a breathing test – 5 seconds in, 5 seconds out for 1.5 min total.  Then a Valsalva – breathe into a tube to raise ball to 40mmHg for 15 seconds two times.  Then the tilt.  The tech would ask for symptoms, but I just kept a running description as things changed.  The testing took about 45 minutes; I didn’t have to repeat any of the tests.  I didn’t ask the tech how it went or what results I had – I’ve learned from so many other situations that they can’t tell you. 

Doctor appointment – I sat in the waiting area for less than an hour before I was called.  For me, it was about 20 minutes before my scheduled time.  The tech had told me that the patient who cancelled was not seeing the same doctor as I was so I wouldn’t be able to take that appointment too. 

The first nurse did basic medical appointment stuff – check blood pressure, ask some basic history questions. Reviewed allergies to medications, got the info for the pharmacy I use. 

Doctor’s nurse then came in not long afterward.  We were together about 25 minutes.  Nurse asked “what brings you here” and typed while I told the summary of my story regarding POTS.  They listened to my heart, lungs, gut sounds and did a quick Beighton screen. 

I waited maybe 15 minutes before Doctor and Nurse came back in together.  I found this part really disappointing.  I had read so many patient stories that they felt heard and were able to ask as many questions as they had and that they felt listed to and understood like they hadn’t at any pother doctor’s appointment.  That didn’t happen for me.  The basic summary is that Doctor presumes that I had a pain episode and got de-conditioned and then got POTS.  This is no way matches my history.  I told Doctor that, but neither Doctor’s demeanor nor information changed. 

My basic story is that I’ve always had orthostatic symptoms – this is all I’ve known.  I have (and shared with both nurses) stories from at least age 5 on of weirdo stuff in my life that didn’t happen to anyone else and I now understand to be from POTS.  I used to hike in the Rockies and have a career that is basically always standing.  I told them how I was swimming an hour a day until the day I vacuumed my car and then had a huge pain flare.  I told them how I do tai chi regularly.  I told them how my POTS symptoms predate the pain and I’m hoping that the pain is a POTS related issue because all the treatment for fibromyalgia doesn’t work for me. 

None of this mattered.  Doctor tried to get up to go less than 10 minutes into my appointment.  I didn’t wait 6 months and drive across multiple states for that so I asked more questions.  Doctor stayed but it was pointless.  Their mind was made up and that was it.  The only other info I got was an admission that they don’t really deal with pain. 

My take away is that they (and I don’t know if this is just this doctor or this Specialty Center in general) deal with tachycardia and that’s it.  Any of the other vast and varied symptoms associated with POTS and dysautonomia are off their radar.  I did not feel heard.  I did not feel cared about.  I felt as though my story was mangled and mishandled to fit their preconceived mold that I was deconditioned and that caused the POTS and I need meds to control the tachycardia so that I can exercise and I’ll be as good as they can get me.  

Honestly, I did not expect this.  I thought that the POTS-as-deconditioning was an older idea, or at least not the only cause.  I thought that Specialty Center would deal with me an individual.

Oh yeah, there were tears.  I had pages of questions.  I had pages of other information.  All this was pointless in the face of someone who isn’t listening.   Doctor left, Nurse stayed to go over discharge instructions.  I did what I could in my post TTT, crest fallen, disbelieving state to plead for some sanity, some reason.  What I got from Nurse was that I should get counseling to help me with my anxiety. 

So much for POTS patients having anxiety as a symptom of POTS and not any higher prevalence than the general population.  Really? Is counseling going to help me deal with extra catecholamines floating around my bloodstream each time I stand and my body freaks out because my brain isn’t getting enough blood? So now Nurse is a lost cause too and I just did what I had to do to be done.  There was no point in fighting for a cause that they couldn’t even see. 

The only bit of potentially helpful information was regarding the dose of propranolol that I take.  I share this just as specific info for me and not as a recommendation for anyone else – though it may be worth discussing with your doctor.  I was taking propranolol 10mg three times a day.  Their recommendation was to increase that to 20mg an hour before exercise in a hope that it would control tachycardia, allow my heart to fill, and therefore pump more efficiently and then I could exercise, no longer be deconditioned and this condition that I’ve had my whole life will go away. 

Nurse was looking over my meds and asked what Trioral was.  I had some with me – to put in water after my appointment to help myself feel better.  Honestly, I’m surprised that these autonomic specialists aren’t familiar with the most common salt supplements.  Or am I in the wrong and Trioral isn’t commonly known?  I left her a packet so hopefully they will try it and recommend it to other patients. 

They also recommended that I talk with my PCP about Provigil for brain fog.  I don’t know what to think about this.  Again, I thought the brain fog was a symptom of POTS.  If my autonomic system was not disordered, then this wouldn’t be happening. 

Lastly, they recommended an abdominal binder for abdominal blood pooling; via an abdominal binder or Spanx.  Nurse commented that they don’t see much pooling in the legs and therefore don’t recommend full compression hose. 

Summary

I’m still processing.  I have to say that I’m glad I went because at least now I can say, “Yes, I have POTS diagnosed by Specialty Center” but that’s about it.  I guess I knew enough not to get my hopes up and that this was likely to be like every other encounter with a medical care provider.  But I couldn’t.  I wanted to be understood.  I wanted to feel heard and not passed off as another annoying patient who doesn’t know anything.  But it happened that way again.  I asked for help – “where do I go from here” and got no reply.  Well, unless you count a recommendation to get counseling.  I thought Specialty Center would be beyond the “it’s all in your head” diagnosis. 

So, my fellow POTSies, there you have a recent visit to a Specialty Center.  I hope that helps someone.  I hope that others have better experiences. 

[Pistol]

@brainchild - I am so sorry you had to go through this. I also had a similarly bad experience at an autonomic specialty clinic. They did testing - just like with you - and I had a long interview with an intern. Then the doctor ( not a specialist in dysautonomia but a neurologist who is PART of the autonomic outpatient clinic ) saw me and reviewed the info collected by the intern. I was told I did not have POTS, to increase salt intake and for the joint pains I mentioned was told  to "get xrays". REALLY! I said: "You want me to xray all of my joints?" and they said "Yes".  I followed up 2 months later and was told to take salt tablets ( which made me throw up and I stopped them ). Finally I went to another autonomic specialist who was not part of a research clinic and I was not only diagnosed but also have been successfully ( and respectfully ) treated for many years. 

I agree - we all hope to get answers when we see physicians who are supposedly experienced in dysautonomia but just because a doctor is interested in that field does not mean that they know how to handle dysautonomia patients.  So - coming out of the appointment with a diagnosis but no answers is very disappointing - and I am sorry. I hope you can find another specialist who is more interested in your well-being rather than just labeling you with dysautonomia. Hang in there - unfortunately your story is not unusual.  

[Sushi]

Quote

Doctor appointment – I sat in the waiting area for less than an hour before I was called.

This struck me as I have had really excellent TTT testing from another autonomic specialist and he explained that the data from a TTT took a long time to analyze as every change I BP, HR, EKG, respiration and oxygen had to be correlated by time stamps to understand what might be causing or affecting what, and then more time to work up a treatment plan.. I don’t see how he could have done this adequately in the time available.

Yes, it is very disappointing to invest so much time, energy, money and hope and then not be treated with respect and care. I hope some other approach opens up for you with a different doctor.