Friday, August 9, 2013

Disabled & Dissed, Part 2

A couple of posts ago I told about the surreal nightmare I was going through trying to get my kid's wisdom teeth out. Since, I've been plugging away at the situation with more phone calls and emails, and the help of three case workers.

For those of you new to the continuing saga, it is mostly revealed in the email exchange below, but I will add that when I attempted to contact the person I was referred to at DLSC (in a chain of referrals which ongiong readers may recall with amusement) her extension took me to the voicemail box of another person entirely.

And so with further miscommunications, vacations, absences, evasions, delays and excuses and oh please don't tell me that was sarcasm on the part of the oral surgeon?! ...while my daughter's pain increases ...our story continues. Names have been changed, just because I'm that nice.

re: extraction of 3 wisdom teeth and 1 molar
patient: Colleen Feet
summary: complications of Myalgic Encephalomyelitis ("cfs") necessitate extraction in hospital,  insurance denied by Partnership and awaiting a medical necessity note/TAR from UCSF since April
Action Required Immediately: Schedule in-hospital extraction, file TAR.
Dear Dr. Cats,
I'm writing on behalf of my daughter Colleen, age 19, whom you saw several months ago. As you may recall, you agreed with two other oral surgeons she has seen, that the extraction of her wisdom teeth and molar should be performed in hospital due to the complications of Myalgic Encephalomyelitis (ME). She is so severely ill, it is necessary for me to handle her communications and appointments for her.

Specifically, patients with ME (also called "cfs" or "cfids") are extremely sensitive to any medication, including anesthesia, and for safety must be given low doses and carefully monitored during any surgery or dental procedure. Further, certain local anesthetics -- including Novacaine and others containing Epyhnephrine -- should not be given to ME patients. Details can be found in the JADA article Postural orthostatic tachycardia syndrome: Dental treatment considerations, John K. Brooks and Laurie A.P. Francis, JADA April 2006 137(4): 488-493 available online at , a hard copy of which I brought for inclusion in Colleen's file at our first visit. Also included in her file is information from the New Jersey Chronic Fatigue Syndrome Association, copies of which are available here: , also regarding anesthesia considerations for ME patients facing surgery.

Colleen has needed these teeth removed for at least four years, now. The delay is causing her great pain. We have done all we could during these years to pursue soonest possible surgery. The oral surgeon she saw in our former home area did not have hospital privileges in that area and Colleen would have been required to travel four hours each way to the nearest hospital where the operation could be performed. This was part of our impetus for leaving that remote area to return to the Bay Area. Colleen's regular dentist at Healthcare Place, who referred her to UCSF, where she was seen by you, Dr. Cats, and you recommended surgery in hospital. Angie began the process of obtaining insurance approval from both MediCal and Guardian Dental. Colleen's primary care physician also agrees that it is necessary for the extraction to take place in hospital.

I phoned Angie in April to find out what the delay was, in getting an appointment scheduled, and she explained that the in-hospital piece was denied by Partnership Health, the HMO charged here in Sonoma County with administering MediCal claims.  I then phoned Partnership and they said that they require a TAR from UCSF with a note explaining the medical necessity for the surgery to be performed in hospital with an anesthesiologist attending.
Here, the trail becomes confusing, as Partnership said I needed to contact UCSF as the ball was in your court, while UCSF told me to ask Partnership why there was a delay, but Angie explained to me in April, again in June and again today that she emailed you in April, Dr Cats, asking for that medical necessity note. Perhaps that email was lost; at any rate, there the process stalled and meanwhile a patient already mostly-bedridden with chronic pain is experiencing further pain from the impacted wisdom teeth. Costs to our family have increased during this time as well, as it has been necessary for us to pay monthly for a COBRA plan on the Guardian dental to ensure that that insurance remains available at the time of surgery.

I have cc'd social workers who are assisting me in follow-up on this issue; I am also in contact with the Disability Legal Services Center of Sonoma County in case the assistance of an attorney should be required; but we understand that no appeal of a decision can be made until there is a clear denial of insurance coverage, and at this point Partnership appears to maintain that they are not denying coverage; only awaiting paperwork from UCSF on which to base a decision. It may be necessary for a new TAR to be filed as it appears the last one was filed many months ago.

Seeing no reason for further delay that is causing my daughter untold suffering, if it appears necessary after today's communications between us, I will copy this information in a separate message (because of their online contact sytems) to my elected representatives and to the attorneys at DLSC, but I am confident that this has only been a horrific bureaucratic bungle that will be most expeditiously amended.

Please contact me immediately to assure me that the appointment will be scheduled without further delay, by reply to this email or by phone at either my home phone or my mobile number. I will be most grateful for your assistance. I will also follow up with a phone call to your direct line.  I understand that the costs we are requesting insurance coverage for, are about $65,000 to $85,000 for hospital and about $1,600 for the rest (extraction of 4 teeth) -- a considerable sum -- but as further delay in surgery would be outright cruelty toward a patient in terrible pain, I hope and trust that the procedure can be scheduled now, and the insurance payments billed afterwards.

I would like to note in closing that today, 8 August, is Severe Myalgic Encephalomyelitis Remembrance Day. Of a conservatively-estimated 4 Million ME patients in the US alone, 25% suffer from severe cases, being housebound or bedridden like my daughter. That's 4 million patients who require this special consideration during dental treatment, and 1 million who are incapable of advocating for themselves. ME patients die on average 20 years younger than their counterparts without the disease, of neurological and cardiac damage, rare cancers and leukemias, and suicides brought on by medical neglect. Thank you in advance for anything you can do to help my daughter.

Creek Feet

    Hello Mrs Feet,

    I am not clear on the details causing the delay in your daughter's case.  I do know that I contacted your insurance after our first meeting.  I am sure that we indicated in our initial authorization request your daughter's medical condition.  Perhaps your legal team* can contact your insurance providers.  Our office should be able to fill our a TAR form for this procedure.  The medical indication would be your daughter's diagnosis of myalgic encephalomyelitis. Angie should be able to enter this in the TAR.  Angie, can you send me our initial authorization request. I am away for the next week but should be able to address this further when I return.

    Dr Cats

    * My legal team? Is that Sarcasm, dear readers?

    Thank you Dr Cats;

I am glad to know that you do not see any reason for delay. My daughter will be very grateful to obtain a surgery appointment as soon as possible.

    Ms Creek Feet

    Dear Dr Cats, Angie and case workers;

    To reply a bit more fully and perhaps more helpfully; I am not clear on the details causing delay either. All I know is that I have spoken several times with Angie who told me in April and again in June that she had emailed you, Dr Cats, requesting the medical necessity information, and that when I spoke with Partnership they said they needed to know when the most recent TAR was filed. Since June many attempts were made to contact both UCSF and Partnership, for further information, both by myself and by case workers assisting me, and we did not receive responses to the messages we left.

    Angie, could you please give us that piece of information? When was the most recent TAR filed? And what action, if any, was there, from Partnership?

    Dr Cats; you write, "Perhaps your legal team can contact your insurance providers." I am sorry if I gave the impression that I have a "legal team." If however you feel that the delay is being caused by the insurance providers and that I may require legal representation I will do my best to get that sort of assistance, but wish me luck: I am a disabled single mother living on disability, with two daughters - one severely disabled and one in college. I certainly don't have money to hire a "legal team," and services providing any sort of assistance to the poor have been cut back severely since the economic crash and bank fraud that took my house and financial security. I have however been in touch with the Disability Legal Services Center who have tried to provide me some contacts and advice to help me proceed in the face of this unusual delay in medical care.

    And medical care is what this all boils down to. I am sure you can imagine the pain my daughter is undergoing, and as a dental surgeon Dr Cats you know better than I the risks she faces if her surgery is further delayed. I do not know, any more than you do, the cause for the delays but if there is anything you can do to assist I am sure you will have the compassion to do so.

    Case Workers, could you please identify any sources of services -- perhaps ombudsman, or some assistant to an elected representative -- who might be able to intervene if there is any further delay? It is my layman's understanding, on the slight research I am able to do, that impacted wisdom teeth, if not operated on, can cause not only severe pain such as my daughter is experiencing, but nerve damage, cysts and tumors. I am a mother very much concerned for her daughter's health and safety, and as I am a disabled mother in economic hardship I need to call upon any resource available for help.

    Thank you all, Dr Cats, Angie, and case workers, for your understanding and any assistance your best efforts can possibly provide.


    Ms Creek Feet (not Mrs) MFA


  1. My god, those are good letters. My brain hasn't worked that well in a very long time. I applaud you! So clear and strong. What came of this? Insurance is such a nightmare and being sick makes us so poor. I hope your daughter came through surgery without much set back.

    1. Thanks. My brain kicks in for a brief, intense, adrenaline-stoked run and then crashes into dull cotton wadding for months.

      Sadly, what came of this is... still no surgery! We got a little progress, the story got bizarre again, I was too ill to touch the situation for a while, and then I got back on it and maybe there will be a breakthrough again soon.

      The story has continued to be fraught, positively fraught my dears, with weirdness. I'll have to write and post a couple more chapters when I can...when it doesn't stress me out too much to even think of it. Someday, we shall all laugh.

      Oh and how very true, our illnesses make us poor --- s we have to rely on the most skeletal insurance, we're treated like beggars when we try to use that insurance, and the stress of it all just makes us more sick.