Thursday, May 22, 2014

Dr. Huddleston: A Presumption, I Presume?



Here is the back story, in short.

If you are a regular reader of my blog -- and bless you if you are [Free Parking for a year behind the Animal Husbandry Facilities PLUS Backstage Passes to Gounod's Faust and Dressing Room Access to Bianca Castafiore and her Entourage] -- then you know that I have CRPS.  Whoopy-Dee-Doo!

Having been told by the best of the best that there remain few treatment options, having skimmed the crème de la crème, so to speak, I set out to treat the disorder by trying to quench any fiery symptoms that insisted on flaring up.

Such as the screaming ninny, crazy-making spasms.

Armed with my new insurance, I began the shift from the known quotient of my team of physicians over the last twelve years to some newbies -- who look marvelous on paper.  Luckily, from an Infectious Disease and Orthopedic standpoint, I have retained my former excellent docs.

Not so for the Nutty Neurologists.

I dutifully requested a neuro referral, which was quickly granted.  I studied the roster and saw one that looked particularly promising, given the specific troubles I've been having.  He touts himself as a movement disorder specialist and researcher.   One Daniel E. Huddleston,  MD.

My first appointment with Huddleston was to be on 12 May 2014.  As a few of you know, I was in the midst of several family health crises, one of which trumps my problems, your problems, and possibly even the situation in Syria and the Ukraine.

Fred and I were weary, and his ADHD kicked in that morning, and despite allowing extra time, a wreck and getting profoundly lost all worked together such that I arrived 21 minutes late.  But, no excuses. The Huddleston refused to see me.  I believe I dissolved in tears, as the effort to get there had taken much out of moi, and the brain of moi desperately wanted to be elsewhere, anyway.

I was offered an appointment with a perverted sadist, the famed Dr. RJW.  That unbelievable encounter was commemorated recently in a post titled "Jose Ochoa, Famed Medical Turd, Has Doppelgänger in Metro Atlanta."  Read it now, if you have not already.  Dr. RJW decided that I had, not CRPS, but "postherpetic neuralgia," or shingles, and opined that I "could not live in this much pain," wanting to throw mine arse in the hearsepital, so as to reinvent the wheel and make wheelbarrow loads of cash.  Strike that last sentiment.  He was more likely not a greedy doctor, just an incompetent one.

This morning, as I waited to hear pathology reports and bad puns from Grader Boob and his new reality as a cancer patient, I thought I'd ease a little tension by tending to some overdue business.

First, cancel the follow-up appointment with the incompetent Dr. RJW, and attempt to reschedule with the self-aggrandized Daniel E. Huddleston, MD.  Not knowing how this new system works yet, after I successfully cancelled with the one and scheduled with the other, it seemed appropriate to make sure The Huddleston was amenable to seeing me, given my 21-minute snafu on 12 May.

The new insurance monolith has a nifty email system that enables patients to contact physicians.  I'm sure it is the bane of their existence.  But, I'm appreciative of it, as an email is infinitely preferable to phoning, sitting on hold, and listening to bad bad music.  It also beats the crap out of having to go somewhere...

And so I present you with the history of my correspondence with the Hubris of Huddleston, going back to 11 May, the eve of what shall forever be known as the "Neuro Exam Rape."

I will shade my parts in the healing shade of green and back Dr. Huddleston's purple prose in labile lavender.

To:
Daniel E Huddleston, MD
From:
L. Ryan
Sent:
5/11/2014  8:28 AM EDT
Dr. Huddleston, I have my 1st appt w/you tomorrow morning - should have composed this email much earlier. I want to let you know ahead of time what my most pressing concerns are, as KP appts seem to be clock-driven! I've had CRPS for 12 years, 1st as CRPS type 2 in my right leg and left arm, then, with "spread" to the left leg and right arm, as well as part of the face. Pain is obviously a problem, but other things supersede pain issues at the moment: horrible, distressing spasms/cramps/dystonia/what-ev-er that last many hours at a time; general disorientation as to where I am in space (where is my arm?! is that my left or right leg?!); hands and feet not responding as I hoped (or "clutziness," and getting "stuck" while trying to walk), and lastly, high BP that I think is related to CRPS, and for which I'd like to try (per a KP pharmacist's suggestion) clonidine or nifedipine rather than what I am on. I hope this email is not irritating, I wanted just to help organize my first visit.

The next day: Neuro Exam Rape by Dr. RJW, after Huddleston refused to see me, as I arrived late.

Today, hope springing eternal, I made another appointment, at which time it seemed only fair to double check his willingness to see me.  Ergo, this email:

To:
Daniel E Huddleston, MD
From:
L. Ryan
Sent:
5/21/2014 12:25 PM EDT
Attachments:
CRPS, legs 
Scheduled to see you 12 May 2014, I was late and lost the opportunity. Instead, I saw Dr. Wilensky. That proved unsatisfactory. I have suffered worsening of CRPS symptoms as a result of an aggressive exam. I opted for you, to begin with, because of your stated interest in "movement disorders." I rescheduled with you at the Southwood location for 21 August. Please let me know if you are amenable to seeing me. I've had CRPS for 12 years. Dr. Barry Mccasland, no longer available under my new KP insurance, finally classified it as "total body." My main problem now? Spasms that are painful and debilitating. Dr. W increased my baclofen dosage and that HAS helped, but I fear taking too much. I will proceed with the plan to try again to see you on 21 August, unless you object. Thank you very much for your time and consideration. Attached is an image of my legs, site of most spasms (from foot to hip, small of back).

 I did not expect a response, really, and certainly not within hours, but there it was, and here it is for your reading pleasure:

RE: Trying again to see you

Printer-friendly version
To:
L. Ryan
From:
Daniel E Huddleston, MD
Received:
5/21/2014  4:01 PM EDT
Hello Lisa,

I would like to help you, but need to be able to see you and examine you in the office to do so. I do consider CRPS in most cases to have a psychogenic basis or at least a significant psychogenic contribution. Often this is not the answer patients are looking for, particularly when they have seen multiple providers. Again, I haven't seen you so cannot draw any conclusions at this point, but this is an issue I don't shy away from because it is frequently the "elephant in the room" and is a potential route to improved quality of life for many patients. For skin changes (which appear to be a concern based on the photo you sent), I would also recommend that you consider seeing dermatology. I look forward to seeing you at your appointment with me. 

Best,
Dan Huddleston, MD

Let's see.  He's another Jose "The Turd" Ochoa fan, plus he decides that I am "doctor shopping." Why else would I see "multiple providers"?

I looked into the abyss.

L. Ryan
Sent:
5/21/2014  4:21 PM EDT
Would it make a difference to know that there are documented lesions, that I began with "causalgia"? Psyche/soma is no elephant in my environs, but I also do not wish to waste my time. That said, I will probably cancel. I've been through an evaluation with Anne McKenzie-Brown at Emory, subanesthetic ketamine at Shepherd, put up with a doctor who wanted women from his church to apply an herb wrap cum prayers... I don't think I need to put up with much more. My case is complicated with an untreatable osteomyelitis, and other junk. 
No need to think about it. I'm done.

And, Dear Readers, I am.  Done.

I will dutifully see the Pain Management Folks, dutifully follow up with the Primary Care Doctor whose knowledge of CRPS extended to... "Wait!  I know that.  That's like RSD.  Reflex something-something. But more importantly, what the heck is wrong with your legs...?"

One day I will laugh about it, you say?
No, Friend, those days are over.














© 2013 L. Ryan

8 comments:

  1. Well... I guess at least he's honest about his beliefs. Sigh. Yeah, right, I can think my body into physically changing. Right. Makes perfect sense.

    TAM

    ReplyDelete
  2. howdy hi, there, buckaroo T! actually, i DO believe/know that i can "think my body into physically changing," having done it a time or two. what i can't wrap my mind around? the hubris, the assumption, the clear lack of knowledge about CRPS. he's all of about... 12, though with the white coat, he might pass for 16. i had hoped that this meant he was schooled in the most recent CRPS research. but why antagonize, purposefully, a patient you've never met, seen, and whose history you've not examined? i begin to believe it is this HMO's POLICY to deny the existence of CRPS. just when i thought i was done with quackery, the duck rises again...
    how are you? so what do you know about sarcomas? i am rallying the troops on behalf of my beloved brother, and planning to spend the weekend learning, learning, learning -- between spurts of tears. we are waiting to learn if the tumor in the shoulder region is primary or a mets... and now i need to learn why that matters, etc. this is my defense mechanism, clearly. like i can obliterate his cancer with my careful study. i will WILL the invader away with footnotes. this is why i do not have the patience to educate idiot neurologists, or even pretend humble submission. no time for the bullshit. glad to know you're still out there, T!

    ReplyDelete
  3. I agree, one would have thought a new doc would know better. I am just disgusted.
    I don't know tons about sarcomas - but I suspect it would be better if is a primary, and not metastasized. There are a lot of different kinds apparently - do you know the type? I will keep fingers crossed that this is small and local.
    I am still here - read your blog faithfully. I am doing fine, thank you - busy gardening and things now that it's finally warm out
    TAM

    ReplyDelete
  4. It's been my experience in the last 7 years of CRPS with significant movement disorders that neurologists are, in the main, best avoided. Their arrogance is breathtaking but coupled with their astonishing lack of knowledge it makes for the worst possible combination. If they can't physically see something on a scan, blood test, EMG or CSF test then it is chalked up as a psychogenic, somatic, psychiatric, conversion or some other illogical mental disorder for which there is zero evidence base. It is amazing that in spite of the total lack of evidence for drawing a conclusion like that, they can still get away with it. The reality is that with CRPS related movement disorders, there is nothing to be done. Baclofen and the very few similar drugs are really the only option. If they don't work for you, you have just got to suck it up and live with it. I've seen one of the best professors in the world about mine - there are just no effective treatment options at this point in time. I'd forget about seeing a neurologist unless you already have one you trust - they have nothing to offer and it's simply not worth going through the misery of their outdated and plain wrong 'understanding' of the condition.

    ReplyDelete
  5. Welcome to Marlinspike Hall, SuperSpecial. I think you are probably right. The energy, time, and money I have to spend needs to be managed with care, and this HMO Neurology backwater thinking makes me crazy. And who needs crazy when you have CRPS? It's the shock of it -- because, yes, after the initial bullshit of being diagnosed (19 months of CYA, as the "initial noxious event" occurred as an inpatient in a local ICU, following a failure to administer stress dose steroids), I did enjoy the care of superb specialists, including a wonderful neurologist. I did not "doctor shop" -- I stayed with him for over 10 years, even when he was honest enough to say he had nothing left in his bag of tricks. Still I valued him for his willingness to help me try new things, to listen and advise, to manage drug side effects, and... I valued his caring. I KNOW CRPS patients are a drain on a doctor, so I was especially grateful that he hung in there with me, even when the outcome was clear.
    Didn't mean to go on and on again. My brother has been hit with an advanced cancer, and during this time of trying to bring together a support system for my beloved "Grader Boob" (his chosen nickname -- he's an English prof), during this arid, painful time, THIS is when I meet these two neurologists... I am sad to hear that such experiences remain common. Extremely sad. God bless the researchers who carry on despite the idiocy of practicing idiots.

    Please come back for a visit -- try hanging out in some of the happier times! Be well.

    ReplyDelete
  6. I know this reply is rather late, but I just went for my visit with Dr. Huddleston yesterday. My history is right hip pain, neck pain. Pain doctor stated I had an Annular Tear. MRI L1 S5 Degenerative Disk disease etc. Since 2008, I have complained of right hip pain at night. Right hip pain before cycles. Recurring right hip pain, Shots for right hip pain, etc. In September of 2014, my right leg started dragging. October, it went to a limp, November, it went to a buckle. Stopping me in my tracks of living my life. Prior to this I was teaching nursing students, taking care of patients, planning reunions, my vow renewal ceremony, and working my regular job as an RN. I read your blog and hesitantly went to see him. And now he has placed on my chart: Conversion Disorder/Psychogenic Walking Disorder. I should have listened to you, but I really wanted someone to help me with this walking situation. I have never had any sort of psych history, not saying I haven't had stress, but now I"m really stressed. I just wanted to share this with you.

    ReplyDelete
    Replies
    1. laritajohn... i had hoped there were no replies because my experience was an aberration. he was getting a divorce. had a hemorrhoid. a brief subarachnoid bleed. but i guess, with the exception of his CF patients [can't recall if CF is correct, or if he attributed "psych" causality and psych CURES to them]. but i am infinitely sorry this man HUDDLESTON, pseudo-neurologist happened to you. i would recommend getting out of Kaiser and into Humana, as high a plan as you can afford. in obamacare as you can afford, you get what you can pay for -- they leave that part out (writing the president along the way -- as soon as you build up the strength. NAME NAMES. As for 'multiple providers,' coughcough, i've had, in 13 years now, subtracting WILENSKY, and never seeing HUDDLESTON, and returning to McCasland, seeing Shepherd Center for Specialized Treatments [no luck], seeing the chief of the emory pain clinic for a 2nd opinion on an intrathecal baclofen implant, after which it was MCCASLAND then on out...do you have access to kevin kress at POCA or john henry at -- i think also POCA as well, both EXCELLENT. they see the hips that are before them! should you wish to raise a little small-letter cain, contact HUDDLESTON'S chief, a nice lady, dr.cole. she;s a bit of a holy-roller, but she listens. she tried to get me kicked out to see dr. mccasland, but her request was refused, but she did get me to a wonderful, fantastastic, BETTER THAN ANY OF THEIR NEUROS: Physiotherapy Associates, w/*Lindsey Rolinski* @2799 Lawrenceville Hwy, Suite 205, Decatur, GA 30033 770-491-0920 GOOD LUCK!

      Delete
    2. oh, and laritajohn, in your honor, check out this post, currently reposted as 3/28/2015: http://prof-de-rien.blogspot.com/2014/07/doctors-cole-wilensky-and-huddleston-do.html ..... reposted in your honor. as i said, don't be afraid to name names. it got over 340 hits, many, i like to think, from kaiser upperlings... but more likely from huddleston, wilensky, and cole cast offs, and bloggers with hubris.still, don't YOU put up with known crapola. just don't!

      Delete

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