I've been thinking about what
I've learned and experienced over the last three plus years. I've also been thinking about the experiences
of various people I know.
So here's another open
letter to doctors:
"Dear Doctors -
I know someone whose
initial diagnosis and treatment was finally changed to the correct one too many
years later, and someone else who I think still doesn't have all the
answers. I remember after getting my
diagnosis of Migraine Associated Vertigo, I e-mailed the neurologist I'd seen,
trying to voice my concerns about my vision.
I just had a feeling something was wrong. He e-mailed me back that what I'd said
"wasn't meaningful." At the
time I didn't know what to think, and was struggling, so I did nothing. But looking back, I think what he was really
saying was "I don't know what's going on."
Please don't tell me that
something that is a serious problem for me "isn't meaningful." If it's happening to me, affecting my life,
it's meaningful. Think about what it
would be like if it was happening to you, and please take me seriously. Ask me for more info if you want to, and if
you don't know what's going on, how about saying "I'd recommend you go to a
(fill in the blank)." If I have a serious
problem, I want to try to Do something about it.
Did you know we get
conflicting info from different doctors, and it's really confusing? I recently watched a wonderful interview Ryan
Adams did back in 2012 about his Meniere's Disease. Adams
said that he'd been to the two top neurologists in the US, and gotten two
different opinions. Why would the same
patient with the same story told to two reputable doctors get very different
answers? I know people go to more than one doctor fairly frequently when
something serious is wrong. Personally,
I'd want to make sure I'm covering all the bases, and get a confirmation of my
diagnosis. If I get a different
diagnosis, what does that mean? Why does
it happen so often that we end up with different answers to the same questions?
Adams also said he was
advised to cut his sodium intake drastically.
This really struck me because I'd recently listened to a well written
account (Lisa Sanders, M.D., The NYT) of a woman with Postural Orthostatic Tachycardia
Syndrome (POTS),
in which the writer said she'd had nerve damage in her inner ear:
"In this young woman’s case, the nerves that signaled her
blood vessels to contract — and send blood up to her brain — had been injured.
Why this happens is not well understood, but the condition can be caused by an
immune system revved up by what may be a minor infection (in this case the
young woman’s cold), mistakenly attacking some of the delicate nerve fibers
that control the blood vessels, and was instructed to increase her sodium."
I know these two
conditions - Meniere's and POTS - are very different, but they both involve
nerve/balance issues. I'm by no means an
expert on POTS, and I get it that the sodium has something to do with low blood
pressure. But I've always been told that
a high sodium intake is bad for a variety of conditions; high sodium levels
have some sort of negative effect on our vestibular systems, AND the article
said that this woman has ongoing problems.
So how can it make sense that one person is told to cut sodium and the
other told to increase it?
As much as I'd love to
think that those of you who specialize in balance really understand how it all
works in humans, I wonder how much you DO know. There are so many different specialties; our
bodies are SO complex, there's so much to know.
I know you have training and experience, but a woman once said to me
"doctors know a lot, but there's a lot that doctors don't know." I believe that's true. I believe we all want you to know more than you
do about the human body and how it works, including you.
When you DO have info, I
wonder if you don't share everything, give us the full picture because you
don't want to scare us. The thing is,
you don't want to say "you can improve, but this condition is also about
management, not about being cured."
But if a patient has cancer, you don't say "it's OK, you'll be fine,
and get on with your life." You
give your patient odds for different treatment options. Why shouldn't patients with some chronic
conditions get the same kind of honesty?
Don't you think you owe it to your patients to discuss therapy options,
diet, etc.? I'd need time to process
everything, but I'd still rather know.
I don't want to be told my
life will soon return to normal if in fact that's not the case; the
disappointment is awful. It's also
infuriating and insulting that you think that giving me or anyone rising
expectations is better than something more realistic. I want you to communicate with each other and
educate yourselves so that you can say "there's these courses of
treatment, and here's what to expect.
This is the general thinking."
I know you can't predict the future, and everyone is different, but have
a conversation with me about the spectrum of experiences that patients
have. When I got sick, no one discussed limitations,
there was just something about "avoidance of triggers." You don't have to be a psychologist to be
able to understand the impact of that diagnosis. Again, if you were in my shoes, what would
you want to hear?
I've said this before, but
it's worth repeating - telling a patient "I don't know, but here's my
recommendation so that you can get some answers," would be wonderful. None of you can know everything, so recognize
that reality. I won't fault you for not
knowing, I'll fault you for not acknowledging it. I suspect that there are still a lot of
disorders/conditions that you are still trying to understand. That's why we get diagnoses that didn't even
exist a few decades ago. I get that, I
understand that as learning and research continues, symptoms can be wrapped
together in a package that gets a name, a diagnostic label, and that helps in
coming up with treatment plans. But along
the way, be honest with us. Haven't any
of YOU ever been patients? Just because
you're doctors doesn't mean you never have medical problems. So think about how you want to be treated,
think about what you would want YOUR medical journey to feel like."
I'm well aware that there
are good doctors out there - I've experienced good doctors myself. I've learned that people who have serious
health problems are the ones who experience what's good, but also what's really
wrong with our health care system. We
need change in our medical system and one way to get that is for patients like
myself to speak up, and talk about what we need from doctors. The doctor-patient relationship is crucial. Being a doctor is a big responsibility, and
working WITH patients since we are the experts on what we're experiencing is really
important.
Thank you, thank you, thank you! This is exactly how I feel. I only wish that all doctors could read this post. After dealing with my undiagnosed vestibular disorder for 18 years now, I have all but given up hope in finding true, lasting relief. And finding a sympathetic ear within most of my health care options is akin to finding a unicorn.
ReplyDeleteI have found significant relief by means of a prescription drug, although that path is riddled with limitations on the availability of the drug for long-term use. Mind you, I came about finding this drug for my symptom relief largely ON MY OWN because most doctors would not hear my reasoning behind it's use for my "disorder" (undiagnosed, of course, by those same doctors). Oh, what a trying life it is for those with invisible problems eh?
Laura
Hi Laura.. Hope you don't mind me asking.. what prescription drug are you taking? Doctors haven't really helped me at all. One doc said well, your not gonna die from dizziness. Everyone deals with dizziness. No help!
DeleteI am dizzy 24/7 n would love some relief. Thank you!
Hi Anonymous - I don't know if Laura will see your message... if you pm me on FB, I can try to get your message to her....
DeleteHi Laura - just saw this comment.... indeed it's very trying...somehow doctors have an easier time dealing with cancer patients because it's a more known path. Re doctors reading my words - my hope is that some patients become better at speaking up for themselves AND that VEDA learns from patients and can advocate on our behalf....
ReplyDeleteI wish VEDA would rate doctors by feedback from patients like us. I went to 3 ENT's before I found a research doctor that understood my problem; cochlear hydrops, with painful pressure in the right cochlea and accompanying dizziness and head aches. I just googled doctors names and read everything I could find about them until I found one in my area with a lot of positive feedback. I appreciate the postings here. We all have slightly different issues. It is apparent that this part of the body is one of the lesser knows areas, and since it doesn't seem to be life-threatening, not much medical research is working on the problem. But I wonder how many suicides are directly attributable to Vestibular problems? Many of us have had to deal with the thought that I will probably be this way the rest of my life.
ReplyDeleteRon, that's a really good idea for VEDA to rate docs via patient feedback - I'm gonna ask them if they (VEDA) take patient feedback..... I think it would be a really big undertaking, but having a databank be city or state or something of good doc experiences would be great...
Deleteyou didn't mention what treatments you do.... have you found any that help you? Even if you can't be cured, there are therapies that can help... BTW feel free to pm me...
Ron, I hope you'll see this - this is what Cynthia, ED of VEDA said - "It's something our board has discussed, but we decided against it because we don't want to pit patients against doctors, with VEDA in the middle. What often happens with sites that allow provider ratings (e.g. Angie's List) is that some people give negative ratings for purely subjective reasons, leaving the provider to defend themselves. What we are trying to do instead is a) try to educate our professionals about how to enhance their directory listing with additional information about themselves, giving patients more information with which to choose a provider, and b) creating a checklist for patients to help them choose the right provider.
DeleteIt's a really great idea, but you're right, it would be difficult to manage."
Had BPPV a couple of years ago mixed with undiagnosed vertigo which lasted for 9 months. After going for physical therapy for BPPV was finally diagnosed with Menier's and proscribed water pills, nasal spray and allergy pills daily. What a relief. Don't like taking that much medicine but will take anything to stay well!
ReplyDeleteLinda
Hi, I am still going through the diagnosis stage after 2 years with initially being diagnosed with labyrynthitus. I have been told I have bilateral vestibular failure but the doctor is puzzled by my progressive hearing loss. Results of blood tests reveal no auto immune desease so what now I wonder? Do I accept that I may eventually become completely deaf? Seeing doctors is very frustrating and part of me just accepts that's the way it is. Thank you for highlighting that we don't have to accept flaky answers after all it is our health
ReplyDeleteDebbie
Debbie, I don't know much about hearing - my hearing is probly too good/sensitive, but *I* definitely wouldn't accept anything without pushing for info/answers.... if there's no nerve damage or some physical cause, then I'd want to know what's going on.... have you been to an ear/hearing specialist? thanks for commenting/sharing, BTW :-)
Delete