Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.
Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.
About 33,000 Americans are currently disabled as a result of this rare neurological disorder.
Not one person with TM will ever know their prognosis.
I happen to be one of them.

I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. sucks, but I still rock.


Why Insurance Companies (Aetna) are More Corrupt than the Mafia...a non-academic crime story

I'm sure I could research hundreds of compelling facts and figures, swim through my long-term memory, skip the cracks of what's left of my short-term memory, strike up a conversation with one of the 1 in some census knows what too small number of uninsured people walking by (thankfully, not inside my apartment at 1:51AM), or make a few journalistic phone calls (also not at this hour, which is now 1:55AM) to back up the title of this entry. But I'm just gonna tell one true story worthy of any journalistic integrity award using my own experience.

And by the way, even though this is a crime story, and it is tempting, I'm not going to get into any further discussion of the mafia - Italian, Jewish, Vietnamese, Russian, or otherwise.

This is all about Aetna.

Catch Up
If you've been keeping up with my transverse myelitis (TM) progress notes through this blog, Facebook, or other more personal means, you may already know that despite my three+ weeks of hospital stays for treatment (IV Solumedrol, plasmapharesis, and IVIg), I have had good, bad, not-so-good, not-so-bad, and this-f*cking-sucks days--all of which are to be expected for TM sufferers or recovers (choose your own glass).

Post-treatment Love Story
After my last hospital stay, which ended 10/28, hackneyed hope gently reentered my spectrum as I started to feel stronger. I could almost open doors without grunting, my myoclonic spasms seemed to be getting a little shyer, my tremors less tremor-y, and my pee even once made its debut less than 15 minutes fashionably late from the time I took my seat. Hooray! Bravo! Encore!

Was it the treatment? Was it the meds? Who cares! I could pee! One day, I felt so "strong," I thought I could walk without my cane.

But then the falling started, and the spasms increased, and the neuropathy returned, and all the other symptoms that remained or showed up at my doorstep continued to increase their passion for being with me. (If I had any sex drive, I'm sure I'd be able to rock their world right back...sorry mom/bro.)

I'm over the bad romance novel metaphor too, and I'm meandering from my point, so I'm going to expedite it now in list form:

The Insurance Corruption Timeline

  • Release from 2nd hospital stay for first round of treatments of plasmapharesis and IVIg
  • NOTE: Aside from meds (mainly a stew of narcotics and steroids), the treatments I have received over both hospital stays, are the ONLY THREE treatments for people with TM.

  • Catch up on mail; organize medical docs.
  • Continue to receive multiple "THIS IS NOT A BILL" letters from Aetna indicating payment denied(to the hospital) for all plasmapharesis and IVIg treatments.
  • NOTE: Received first of these while in hospital. Hospital caseworker explained denials will be appealed, but either way will not be my responsibility--financially, legally, or another lost minute of managing my third job: being sick.

  • Pre-treatment symptoms begin worsening.
  • Begin falling.
  • Other new symptoms arise and continue to increase.

  • Call Dr. Schwartzman.
  • He decides to start home IVIg treatment ASAP.
  • Chooses Tuesday 11/18 (following insurance requests, referrals, scheduling, etc.).
  • I request Wednesday because of major client meeting on Tuesday.

  • Aetna denies IVIg treatment (but not the surgery...hmmm).
  • Dr. S's office schedules appeal (peer-to-peer review) of coverage denial with Aetna.
  • Assumption: Treatment will be approved.
  • Plan: go forward with surgery so we're prepared.

  • Portacath implant surgery at Hahnemann with Dr. Pavlitis. (my 2nd port implant surgery since 10/15).
  • Hoping appeal is approved and treatment can start today.
  • Aetna caseworker assigned to appeal (she is my advocate not Aetna's), suggests I could get a call that treatment could start as early as next day.

  • Return to work - in post-op pain and not on pain meds so I can function.
  • (Sidebar: Being sick in this economy does not provide the luxury of basking in one's own pain.)
  • Waiting for call to leave to start IVIg.
  • No response from Aetna on appeal. No treatment today.

  • Bandages off. My once dancerly perfect sternum disfigured and no hope for treatment soon.
  • 3:45PM: Caseworker calls. Appeal denied by Aetna.
  • Next step: Appeal the 2nd denied appeal.
  • Call Dr. S's office for direction. Appeals person is out until Monday.


  • Symptoms continue worsening at faster pace.
  • Fall four times. Once hitting head on toilet seat.
  • Seeing double, etc., etc., etc.


  • 3:50PM: Receive direction from Dr. S's office.
  • 3:55PM: I leave voicemail to file 2nd appeal with Aetna. Message says they check voicemail every 2 hours.
  • Emotional breakdown. Go to Creative Lounge and sob...and sob...and sob.
  • 4:35PM Aetna's calls: I file appeal. Told their response takes up to 15 days. If denied, one more appeal available to me.
  • I leave message for Dr. S: How to manage the pain, falling until treatment is approved.
  • 6PM Dr. S calls: Can't wait that long for appeal process.
  • Must begin 2nd round of plasmapharesis (much more invasive than IVIg) this week as outpatient.
  • I'm still in pain from port implant surgery. Entire body hurts from TM.

Forthcoming tentative schedule:

  • Surgery to remove portacath implant and replace with permacath implant
  • Begin outpatient plasmapharesis (5 days, approx every other day)
  • Continue to wait for word from Aetna on IVIg approval
Unknown Date
  • Once/if IVIg is approved, 4th surgical port implant prior to IVIg treatment

If There are Only Three Successive Treatments Available for a Rare Disease, How Can an Insurance Company Consider any of them to be Experimental, and therefore Deniable?
The only treatment that Aetna will pay out for TM is steroid treatment. IV steroids are just the first step in treatment for many patients with TM.

Firstly, because like with me, it may have no positive effect on the disease. Secondly, it doesn't have enough of an effect for the patient to regain as much function as possible.

So, because Aetna considers two out of three of the treatments for TM to be experimental and therefore not cover-able, I, and other patients like me, will have/had:
  • 2 unnecessary surgeries
  • 2 consecutive weeks of unnecessary post-operative surgery pain
  • 1.5 weeks of continually worsening symptoms, including multiple falls
  • A 2nd round of plasmapharesis (an invasive and exhausting treatment), during which time all of my blood will be removed from my body and replaced over a period of 5 treatments every other day: 66% of my blood will be removed during each session, plasma separated from blood, and replaced with albumin (you can see pics of my first round of plasmapharesis)
  • 6 additional outpatient days in the hospital
  • 6 separate days of hospital registering and waiting for patient transport
  • 6 days where I will be forced to work from home (possibly putting my job in jeopardy? or at least making co-workers' jobs more difficult)
  • 2 weeks of being at high-risk of port infection (the permacaths have high risk of infection and are rarely used in outpatient treatment for that reason)
  • 2 weeks of 30 minute prep if I want to take a 1/2 shower (the permacath cannot get wet; NOTE: I will be posting video of the shower process soon. In the mean time you can view these pics here. Some of them contain nudity.)
  • Emotional stress of not knowing
While I am incredibly grateful that I have insurance, I am infuriated by the bureaucracy, the random coverage decisions, the pedantic pace, and the ongoing corruption of so-called nonprofit companies that are making billions in profits without having to account for the actual well-being of the individuals they are supposedly there to help.

The Irony
Aetna positions itself with a definitive mission:

"We're dedicated to helping you stay well - in every way. See the difference Aetna can make for you."

This is the very same company that withholds access to the treatments that so many sick people need not only to "stay well" but to function or even to stay alive.


  1. Your struggle with Aetna infuriates me. While my medical problems are nowhere as significant as yours, I was treated similarly - in my case, denied for a medical condition (a diagnosis made by the insurance medical review team) that I never had, nor did my own doctor even agree with. This was a very small, local health insurance company (Illinois). After pursuing all of my appeals and leveraging my doctors, local representatives and advice from friends in the legal profession, I failed to gain coverage for simple procedures like a pap smear and biopsy and had to choose between paying all of my medical bills out of pocket or continue with an insurance rider while accepting a false diagnosis that would remain on my medical records. Essentially, they committed fraud and I cannot afford legal counsel to fight the battle. This is criminal, and it's happening to insured people. While this resource is not a complete solution ( I urge everyone to speak up and address this problem so that one day it may indeed no longer be so monumentally fraudulent.


  2. this is 'suffering'...
    you only have to resist, wish you the best


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If you're a Philly-region person with TM, please consider joining the Transverse Myelitis Philadelphia network (, a new social networking group that I started for people with TM so that we can meet and chat casually. It's only on Facebook for now, so, if you haven't already, join. It's easy.


In Pictures

Please Note: Some photos may contain partial nudity or depictions of medical procedures. Though I am in many of these photos, my reason for sharing these personal photos is to promote awareness, understanding, and advocacy for people with TM and other rare diseases.
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