Tuesday, October 26, 2010

An Excellent Historian

"Mr. Miller is accompanied by his wife of ten years, who is an excellent historian..."
So went the transcription yesterday by our neurologist/psychiatrist here at the Mayo Clinic, and it feels pretty accurate. If I've had any role in the things that have been going on with my husband the last couple of years (or really, our entire marriage, but who's counting), it's been best summed up as "advocate," or now, "historian." I have not publicly told the whole story of what's happened to Alex, because I hadn't felt it was my story to tell, at least not in full, and in the beginning Alex was reluctant for people to know because he didn't want to deal with the stigma attached. But he's at the point now where he realizes that the more a story like this is shared, the more likely it is to resonate with someone else who has a similar experience, and that there is a possibility for people to help each other in this way. I also think it's liberating to finally just put it all out there and heave a big sigh of relief.

In the fall of 2008--yes, it's been going on that long--Alex, who most of you know has bipolar affective disorder (Bipolar 1, for you pros--the heavy hitter), had been mired in a deep depressive phase that just would not break. This was unusual for him, especially for the season in which it had occurred, because historically we've battled hypomania every summer like clockwork, ramping up benzos and antipsychotics to get us through until winter with as little trauma as possible. But something was different for those months of 2008, and by September, he was truly desperate.

On about our third visit in a matter of days to his psychiatrist, Alex was given two options: Add an anti-depressant, for the first time since his bipolar diagnosis, to his med cocktail, or undergo Electroconvulsive Therapy (ECT). Those last words hit our ears hard, conjuring up images of Jack Nicholson in "One Flew Over the Cuckoo's Nest," and for a stunned moment we just looked at each other. But the prospect of an anti-depressant, at that point, was equally terrifying. Every time in his life that Alex had been administered ADs, it had resulted in full-blown, florid mania. He'd been misdiagnosed with unipolar depression a number of times, so he had some pretty good experience with this. Let's just say he's lucky to be alive, and extremely lucky to still be married. So for him, at that point, that option was just right out. And then the doctor began talking up the ECT, saying all the things that I've now heard from just about every doctor. It's safe, it's mild, it's just a seizure, people have seizures naturally all the time, and they're OK, it can snap a person out of a depression abruptly, it will break the depressive cycle and allow you to recover, just a few days and you'll feel better...I said no, Alex said yes. He was desperate, and it was his decision.

We were told to expect some mild confusion on the days of the treatments, which would improve quickly. He was scheduled for 6 treatments, spread over the course of a couple of weeks, and should be recovered enough to go back to work and resume life as normal within a couple of days after the final treatment. We went four times; he had three treatments. That fourth day, based on my repeated concerns about the profound effect the treatments were having on him, he was examined and further treatments were canceled. This was the doctor's call, and I have since found it baffling that the doctor (and all doctors, really) could maintain that there is no possible way that ECT treatments are to blame for my husband's condition, while at the same time ceasing the treatments due to what they were doing to him. As it turns out, psychiatrists can tolerate an enormous amount of cognitive dissonance without suffering the ruffling of a single feather (or fussy little beard-hair).

I wrote describing the symptoms once, painfully, already, so I won't rehash that here, except to say that things have not improved much, if at all. Alex is now officially--by which I mean according to the Social Security Administration--completely disabled. Each day is still a struggle. It's been an enormous strain on our marriage, partly because there is so much I just can't do alone, and partly because I am by necessity his caretaker 24/7. His condition leads to fear and insecurity and a constant need for reassurance, usually meaning my immediate presence wherever he is. And by immediate, I mean not more than a few feet away, and certainly not in another room. Preferably touching distance. I love him, but it's exhausting. It's putting me into a sort of parenting role, while he still views me purely as "wife," and this leads to a good bit of emotional conflict between us. I get frustrated. I get angry. I get sad. I get depressed. I cry. A lot. Everyone wants to help, but no one can. Not really.

But back to the process at hand. It has taken us this long to get this far, largely due to being buffaloed by the medical establishment at almost every turn. Our sweet, wonderful GP is the exception--he'd have done anything to help Alex, and even referred him for some cognitive and speech therapy (which was denied due to lack of a definitive diagnosis), but this was just beyond his scope. The psychiatrist and neurologist that we saw at home pretty much circled the wagons for the "there is absolutely no reason to believe that any of this is caused by ECT" line. Really. No way. It's got to be something else. Depression. Conversion disorder. Something totally unrelated. Except that it happened literally overnight, WHEN HE RECEIVED ECT TREATMENTS.

Look, I'm not saying, and never have, than anyone did anything wrong, or that there's any level of malpractice or anything like that happening here. We're not even anti-ECT in general; it helps thousands of people every year, people who go on to have no complications. I've not threatened, nor do I have any intent, to sue anyone. I don't see how we could, anyway, since Alex signed away all his rights relating to possible risks prior to treatment. I did report it as an "adverse event" to the FDA's Medwatch, because I think that having adverse outcomes on record is important for people like us who may come after. We just feel that, possibly, there was some latent weakness or issue particular to Alex's brain, nervous system, or some renegade organ, perhaps, that was exploited by the trauma of ECT. And yes, I believe that passing electrical current through someone's brain sufficient to cause a seizure counts as trauma.

Every PT/OT/speech therapist we've seen has said the same thing: That Alex presents as a victim of a traumatic brain injury. That if we'd told them he'd had a bad head injury, they'd absolutely have believed it. We even began some cognitive and speech therapy at one point, only to have it discontinued because no doctor would give a diagnosis of TBI, because, of course, an injury pursuant to ECT is impossible. We began to seek help outside of our "home" medical circle, starting with a neuropsychologist in Little Rock who was the first sympathetic ear we'd had, and told us that yes, he had seen adverse outcomes from ECT. Not a lot, but some. In our psychiatrist's report on one occasion, he notes that I told him that we'd seen a neuropsych "who claims to see these symptoms in most ECT patients," which I most certainly did NOT say, and that I "couldn't tell him the name of this doctor." Not entirely true, because the truth was that I WOULDN'T tell him the name of the doctor, because we were trying to get in at Mayo, and I couldn't risk him picking up the phone and leaning on this guy before we had all the records in our hands. Yes, I was that paranoid at this point. But you know what they say about paranoia, if people are really out to get you.

At first, we couldn't get a referral to Mayo. Our neurologist just refused. She said she'd done every test she could (and to be fair, they're repeating all the same ones here, so I don't doubt her on that count), there were no conclusive results, and that was that. It was the response we were getting pretty much everywhere we turned, and I'll give you the translation of how that came across to us: "Yes, something is very, very wrong here. Very wrong. And it's a shame. Gosh, it's too bad. But I have no idea what it is, and I have my own life to live, and at the end of the day your problems aren't my problem, so take this sympathetic-looking shoulder shrug and please go away now."

So we tried on our own. We contacted the neurology department at the Mayo Clinic directly, provided some records and a history, and waited. And got back a letter informing us that they were "declining to consult" at this time. Dead end, unless we were referred by another neurologist. This is when I had a form of mild psychotic break and basically just harassed the local neurologist's office for several months until they secured a referral for us.

So here we are. I'm trying to be hopeful, but as I'm seeing them do the same things here that they did at home, it's difficult. And Alex is so completely desperate for help, and so entirely invested in this consultation, for which he's waited more than a year, I'm terrified of what will become of him if we receive yet another sympathetic shrug of the shoulders, and a "Sorry, old sport, tough break, that...well, good luck in the future, goodbye!"

Don't do that to us, Mayo Clinic. We need you to pull out a win here.

32 comments:

  1. Thank you for sharing this. I'm crossing my fingers and hoping for some good news. You guys deserve a break after all this time.

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  2. Totally wish I could give you a hug.

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  3. My fingers, toes, and strands of hair are all crossed for you and for Alex. This is so, so tough. I have a similar story with a family member who tried absolutely everything, but she was very lucky and the ECT ended up being her lifesaver. I wish it had been for Alex, rather than a massive complicating factor.

    But - you put it best when you wrote "...possibly, there was some latent weakness or issue particular to Alex's brain, nervous system, or some renegade organ, perhaps, that was exploited by the trauma of ECT." It isn't 100% good for all; it isn't 100% bad for all. And really, those who seek ECT have a variety of different interesting brain quirks in the first place, by definition! Why can't the doctors understand that?

    I really wish the "professionals" would focus on the state at hand rather than simply dismissing that it couldn't have been caused by ECT. Regardless of HOW his symptoms arose, they are there NOW - so I would hope they would give him the treatment/therapy that they would have if he *had* a TBI.

    The red tape about securing an official diagnosis is complete bull. It makes me very frustrated that this sort of "semantics" is part of the fight whereas the real fight should be getting Alex better.

    Apologies for the long comment, but I am overwhelmed with many emotions. Most of all, I wish for hope.

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  4. It occurs to me (and it probably has to you, too) that there might be a book worth writing here. All this pain and trauma combined with your (and Alex's) intelligence, devotion, insight and ability to communicate makes me think it must be happening for a reason. Plus there is, of course, the "excellent historian" aspect of it. You're amazing. xo

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  5. I'm crossing my fingers so hard that it hurts. I admire your tenacity and your persistence and your fierce love and devotion. Here's hoping that Minnesota offers you some answers. (And be sure to try the walleye while you're here!)

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  6. Well, I think you're simply "excellent".

    With that, I hope and pray you have some answers, soon.

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  7. I second Andrea's suggestion. You and Alex are BOTH an inspiration and you have a story that needs telling. There are lots of us praying for you daily...stay strong. Love you!

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  8. Belinda, as a mental health professional and as a mother of a young man with severe OCD, this post resonates in me so powerfully. To share this story is an incredible service and a tribute to your open and honest spirit; to live this story takes more courage and steadfast love and commitment than most folks even imagine. I'm wishing you and Alex the very best and keeping my fingers crossed that they might have some new treatment ideas to explore. And I also know that the brain is a quirky and complex thing and I've seen reversals that are as sudden and inexplicable. Hang in and hang on.

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  9. Rooting for you, rooting for Alex, and rooting for the Mayo Clinic. Come on, Universe, let's chalk up a win for the good guys already.

    Hugs, and hoping for a path to improvement for y'all.

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  10. Sending prayers, love and all of the hope in the world.
    I pray that you can find some peace in the midst of this.
    I love you guys!
    I hope that they find an answer for Alex.
    (((hugs)))

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  11. I can't tell you how many times I've left a doctor's office crying because they've said, "Good news! Everything appears normal." I'd rather have a diagnosis. Good, bad, any diagnosis. I'm not trying to say I know how you feel, because Alex's symptoms are 100x worse than anything I've had to endure, but I have an inkling. I wish you hope and strength, and a diagnosis and treatment. Keep fighting the fight. Alex is so fortunate to have you as his advocate and protector.

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  12. I'm praying that, at the very LEAST, some answers come out of this. Please, please, please let me know if I can do anything to make any of this easier on you. I can go pick up Bella from school, or run errands, or bathe Ninja Poodles, or clean, or whatever you need me to do. I know how you are about accepting help, but like you said..you can't do it all yourself. Love you.

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  13. B,
    I know it's hard when you seem to be constantly banging your head against the hospital wall. It seems the only thing worse than a bad diagnosis is no diagnosis at all. Please know that I love you. I hope you can at least get some answers while you are there.

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  14. belinda, i am loving you so hard right now. i totally agree with the people who've suggested you write a book, with the prayers and encouragement, and especially with melissa kennedy - if i were within an hour's drive from you i wouldn't take no for an answer (and i fold a mean sock).

    i don't want to repeat the ethereal things - i could for days and days and still feel i hadn't said them enough - but i will say this: i hurt for you. thank you for letting so many of us have the opportunity to send specific thoughts and prayers your way. can i tell everyone i know, too? you never know what fruit may fall into your lap when you ask the sky for prayers...

    love love love,
    jen

    (previously of jen and andrew, aka beagles in the city, aka the crazy girl in baltimore with beagles and a new boyfriend who can't understand why i'm crying over a woman i've never met and reassuring him - seemingly apropos of nothing - that if anything ever happened i'd still be here for him)

    ps: i know you're not the biggest terry pratchett fan, but i think you'd like 'nation' - since you're waiting...

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  15. Belinda: You should write the book, for you, for Alex, for everyone else out there who seeks answers from a medical system that doesn't always have them readily available. Hope you find your answers soon at Mayo. Peace, Beth

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  16. The ninja poodle of Northern VA is resting here, saving all her lickiness for you and Alex. I too am bipolar but just number 2. I have no words so I will simply have to let Halle's serene face and loving nature speak to you as to how much your extended 'family' reads every word and cares deeply about the outcome, as powerless as we are to do much else.

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  17. Love you guys.

    Erin

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  18. Bless you and your refusal to give up, give in, shut up and sit down!

    Fight on, Belinda, though I know you must be bone-weary of fighting.

    And you better come through, Mayo Clinic-- Arkansas girls don't play.

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  19. My gosh, honey, what a horrible journey. I am praying for a new diagnosis and some help. Please keep us informed.

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  20. I'm with Andrea. You definitely must write a book. You have the content, and you are a fine writer. Start taking notes with the book in mind. You can help so many people if you do, and I know you will do such a book justice.

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  21. Any news, Belinda? I've been thinking about you a lot.

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  22. Thank you for sharing such an insightful & informative story about CANINES. I am absolutely certain that any dog owner can benefit from your posts.

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  23. Great piece of blogging- such a sad story. As someone who has been a mental health researcher for many years AND a sufferer from unipolar depression, I am quite surprised by the damage your husband seems to have incurred through a few ECT sessions. Although my background is in psychology not psychiatry, I've always been an advocate for trying ECT when nothing else is left for severe depression. I have personally never seen the sort of deterioration you describe although I have heard about a friend's mother with schizoaffective problems who became quite numb and unresponsive after many treatments- her family were quite thankful after a while as she wasn't out causing havoc constantly as she had been. Did your husband ever have any brain imaging studies anywhere before this episode? Has anyone done any MRIs or Head CTs since? It sounds as though he has had a stroke of some sort- the messages aren't happening in his head or are not getting through. Does he ever describe wanting to do or say something, then finding he can't? Has he ever suffered high blood pressure? It seems very odd- something the Mayo Clinic ought to be interested in exploring.
    Also, although it's too late, the ECT machine used should have immediately been taken out of service for a full technical check (it would be in Australia) and the settings used on your husband, plus his drug regimen should have gone in with the report. It's highly unusual that the current level used routinely in ECT could do anything at all- doctors wonder at the "miracle" of ECT because it's so hard to believe that so little current at the level of the brain can produce such positive effects. It is rarely used here for major depression, as modern drugs seem to work on most people to a reasonable extent, but young people I know with depression and severe eating disorders have had courses of ECT that have saved their lives. One, who I still see sometimes in shopping centres, is alive and able to smile sincerely (instead of look blank and grey), eat sufficiently to work part-time and study and look after herself in her own apartment- this is after three courses of 15 to 20 doses of ECT, one per day, as an inpatient. Others I know who have been suffering from schizophrenia and/or major depression for thirty years or more have had repeated courses of modern low-current ECT and never suffered any disability from it.
    I'd definitely have ECT if my depression was no longer responding to drugs- last year I was suicidal for months, pleading with my GP to send me to a psychiatrist so I could be prescribed a higher dose of antidepressants or be given ECT. I would still have ECT if I needed it, although most of my self-esteem is derived from having a very well-functioning brain and intellect- so I'm not an advocate- I'm a real believer.
    Try to make sure your husband is thoroughly investigated physically, not just with computer and paper& pencil tasks. Neurology is all very well, psychology is very clever, but getting physical evidence is nice and concrete.
    Good luck. I'd be willing to sign a petition to help get your husband the work-up he deserves.

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  24. Thinking of you, Belinda.

    Hope you have a beautiful New Year and that 2011 treats you and your family gently and with kindness.

    You are missed. You are loved.

    CP.

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  25. I have been following your story for a couple of years, and I hope and pray that the clinic can give you a diagnosis and an avenue of treatment. You are a brave woman.

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  26. The FDA (USA) have not tested ECT machines for safety on human beings and now want to reclassify them from class III (dangerous) to class II (wheelchairs) so they don’t have to insist on testing (the machine manufacturers have so far refused to test as they know the results are going to be bad).

    Please tell them your experience as they are having a meeting 27/28 January.
    Info
    http://bipolarblast.wordpress.com/2010/12/16/ecthearing/

    docket - submit comment by 25th January 2011

    http://www.regulations.gov/#!documentDetail;D=FDA-2010-N-0585-0001

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  27. Hi Belinda!
    So sad you are not posting very often now--I'm sure I am not the only one missing your talent, but I certainly understand how life gets in the way. I haven't been writing much either, but I ran across your wonderful post Dear Child: Please SDon't Be A Hater that really resonated with me so much that I saved it. I plan to write a new post soon and want to quote extensively from it because there is no way anyone could say it better than you
    did!! Of course I would never repeat anything without giving the original writer the credit for it. Are you a member of Arkansas Bloggers? My partner and the main writer for Stick Horse Cowgirls and I are probably the oldest members, being boomers, but would love to meet you in person some day! We are in Little Rock and would love to meet up with you!
    I'm keeping your family in my prayers.
    Vicki
    P.S. I agree-- you HAVE to write a book!!!

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  28. Hi Belinda. You don't know me, and I only know you from this blog, but it's been 4 months since this last post, more or less. I hope everything is ok.

    Vicki

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  29. Five months. Is everything still bearable? You don't know me, but I have missed your voice here.

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  30. Belinda - I look for your post 2-3 times a week. I think about you folks often and wonder how you are coping. I do hope Alex is okay, and you and Bella are doing well.

    Alice in Nova Scotia

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