Inpatient Headache Units and your experience?

How many have been to endocrinologists? I've never been, but it's kind of been in the back of my mind and Dad, you're discussion has kind of brought it back to the forefront.
Janice

Random: I saw an amazing ENT at UVA and had a Sinus cyst on my right maxillary, I had it removed in 2001? and it has come back even larger, they say it's 'nothing to worry about' but I wonder if I should have this one removed as well. Sometimes I have tenderness under my right eye near,  I wonder if it would help any?! THEY say no..but who knows?

Regarding inpatient headache specialty clinics:

One thing I think people should really investigate carefully before going is how the clinic manages your case after you leave. Not what they say they do but what they actually do. We've experienced a bit of a disconnect between very clear and firm instructions from the speciality clinic on what to do and when to call 'right away' if various events occur or such as before going to an ER. However when one of the events on the list happens and you do what they tell you to do without fail -- if it happens during business hours when the doctor that saw you happens to be working -- everything happens like it is supposed to happen. If not, the doctors who are supposed to be covering during the off hours don't really have the whole 'team approach' thing worked out to the point they don't have access to the records or the staff doesn't know how to connect the dots, anyhow lots of excuses and variations on the theme of 'lotsa luck you are on your own'.

It isn't as though they don't answer the phone, let me explain. For instance we had an occasion of needing to go to an ER due to killer-bad pain. We gave the doctor at the ER the phone number of the inpatient clinic due to the clear instructions we had from the clinic doctor that's what we were supposed to do. So the ER doctor called the clinic. There we are trying to be good 'do bees' keeping all the care coordinated. the ER doctor reported that the doctor on duty at the clinic had a vague memory of the case and wasn't able to view the details, so the specialty doctor advised the ER doctor to do as the ER had done prior to our inpatient experience. As a result, all the battles we did against narcotic pain medicine went right out the window due to the doctor's orders as ER doctors I guess like narcotics and inpatient doctors try lots of other things first. I really hate conflicting medical advice.

In another instance we were advised by the specialty headache clinic to travel to a specialty center in another state for an effort to find a CSF leaks. We are hopeful for a good result there. Yet late Friday afternoon before the Monday appointment the leak test center lets us know the tests they plan to do require lots of medications to stop long beforehand. This is no mystery to doctors but it was news to us that day. But, our instructions from the headache clinic that refered us are stopping or changing anything without their advice is not to be done beacuse that would be quite bad. But no actual doctor at either place looked at the case itself to coordinate what to do. They had their staff create the referal and went on to other business. So no doctor was there saying 'change these meds' or 'do this if a killer headache hits' or 'taper these off on that plan'.

So on the one had we have the leak-center nurse saying 'stop all that as it's on the list of things to stop before our test and if you don't at least two days before the test you can't have the test'. And the headache clinic saying 'change anyting here without our advice and you are going to regret it-- call us first no matter what'. So, a rock and a hard place.

So we tried to call the clinic and put the new doctor in touch with the clinic and so forth-- all we got from the specialty center staff was that the doctor wasn't in, they wouldn't ask the doctor that was there, but mentioned to be sure to let them know how it all worked out later on, and just have the leak center doctor deal with it'. But the leak center doctor's first appointment was too close to the test to get the drugs out of his system.

So we have this case of firm instructions on what to do from doctors that are in direct conflict. My instinct was to have the doctors communicate with one another, as there was no way we were going to guess about what to do. What we do have is low-level administrative staff not having good judgement so 'protecting the time' of 'their' doctors by simply punting and being politely vague. It would seem to me that really professional adminsitrative staff would know that there are conflicts with medications and being they had weeks before the referral appointment would have coordinated to let patients know what to do instead of making us feel like we are inconveniencing them with our calls amid pain, stress, hope and frustration.

Ah that life -- I think in the future neither I nor anybody in my family is going to get sick except between 8 to 4 Monday thru Friday and not within one week either way of a three day holiday weekend. Timing is everything.

Well I try to stay measured in responses and let some time pass when letting a little time pass doesn't create risk.   In this case I've asked (just by leaving messages) doctors themselves to communicate about it.  I'm thinking if they don't,  I don't think they'll care much about patients opinions anyhow so not much point in wasting time watering the desert.  If they do then they'll probably have enough sense to make some policy and procedure changes without me commenting from the grandstands.

Mostly my hunch is this is not about the doctors as medical thinkers but doctors as the managers of staff.  The staff tries to protect the doctor's time and make sure they are getting paid for as much of the doctor's day as possible. 

Mostly the 'bumps' that I've noticed really come out when dealing with after hours issues.   The doctor that is supposed to be handling the after-hours issues for the specialty center really I think is not sitting in an office with access to all the records and working, or even at home with a computer linked in to all the records available.  Instead I suspect they just have their office cell phone in their pocket and answer it promptly whereever they happen to be when it is their turn to be the after hours doctor.   I do not know this to be the case, but it seems to match the experiences I've had.

If ever the time comes for me to look for another specialty center  (I am not looking to do this just yet) one thing I will certainly check is whether the after-hours phone staff is able to provide meaningful information at least to ER doctors when they call, if not patients.

 

Yes we have 'the plan', and 'the plan' said:, 'take these every day, take these if a headache hits, change nothing without talking to us first or you will regret it, and call us before you go to the ER'.   Like I said it works out well enough if the doctor managing the case happens to working at the right moment.  But if not, then it kind of hits a snag.