Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-13-2011, 01:54 PM #1
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Blank TSA issues new Medical Notification Cards (Pat Downs, etc.)

For the past couple of months, I have been serving as the representative of the RSDSA to the Transportation Security Agency's Disability Council. There is a lot of information which is not widely distributed, and I thought it would be beneficial to put it up here for all to see:

Transportation Security Agency issues new Medical Notification Cards

In response to a highly publicized news account of a person with a medical condition’s humiliating experience while undergoing a pat-down, at a security checkpoint, the Transportation Security Administration (TSA) has issued a new medical notification card that fliers can present to airport screeners. Here is the link to the card:
http://quest.mda.org/sites/default/f...Cards%20II.pdf

The cards do not exempt a passenger from screening, but it will alert the TSA employee that a health condition exists.

Please understand that the purpose of these pat-down is to detect small plastic bags of explosive or highly combustible liquids that may be taped to a person’s skin. Accordingly, a metal detector will not pick them up. The new body scanning x-ray machines are supposed to be sufficiently sensitive, but they are not always available nor will they always give clear readings: especially for travelers wearing loose or baggy clothing. In the event of an “ambiguous reading” on the x-ray, a pat-down by a same-sex TSA employee is required.

Nevertheless, travelers with a “hidden disability” (including RSD/CRPS) are entitled to a “private area” in which the TSA asserts that they will be padded down with “light pressure and contact when inspecting a sensitive area or painful area,” http://www.tsa.gov/travelers/airtrav...rial_1986.shtm after first being “offered a disposable paper drape for additional privacy before the beginning of a pat-down.” http://www.tsa.gov/travelers/airtrav...rial_1567.shtm

It is strongly suggested that prior to flying, you obtain a recently dated letter from your physician addressed to TSA Employees/Security Checkpoint Supervisor stating that you have been diagnosed with Complex Regional Pain Syndrome (CRPS), a neurological syndrome characterized by intense chronic burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch and he/she recommends that you be (1) scanned by an electronic scanning device rather than being physically searched which will cause extreme pain and prevent your traveling and (2) should a pat-down be necessary, it should be done in a private area, under a paper smock, after you have had the opportunity to privately remove as much clothing as you feel is appropriate to minimize to pressure of the pat-down. Here are the current CRPS diagnostic codes:

CRPS has been assigned the code number 337.2. It has been classified into four categories:
(1) 337.20 – unspecified site
(2) 337.29 – other specified site
(3) 337.21 – upper extremity
(4) 337.22 – lower extremity

It is important that you carry enough copies of the doctor’s letter for each time you anticipate going through security before you return home, as each TSA facility that screens you may wish to keep a copy of the letter for its records.

Finally, because these procedures may be cumbersome and the initial TSA officer you encounter may be unfamiliar with them, we recommend that until they become thoroughly familiar with the routine (and pat-downs may be required only on occasion, depending on the x-ray) travelers who may be required to undergo pat-downs in private TSA controlled areas allow themselves one hour of additional time beyond the suggested airport arrival of 90 minutes for domestic passengers checking baggage, and 2 hours for those on international flights.

Here is a link to more information from the RSDSA which may be helpful:
http://www.rsds.org/5/news/2006/TSA.htm

Mike
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Old 06-13-2011, 02:21 PM #2
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Thanks Mike. I never thought of the pat downs for Suzy. I did for cabin pressure.
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Old 06-15-2011, 05:35 PM #3
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Question Extremely private disrobing as a voluntary alternative to TSA pat-downs?

I participated this afternoon in conference call with representative of various disability organizations. The highlight of the call was when a representative of an organization for the blind - who travels 2 - 3 times a week - reported that, when going through security with his guide dog, he invariably cleared but the dog's harness triggered the dog's need for "secondary screening" (pat-downs) at which point he was asked - "over a dozen times - the sex of the dog, so that the pat-down could be done by a same-sex TSO! [Transportation Security Officer.] Not only that, but he had reports of this happening to a number of other people. At which point, the call hosts made clear they didn't know whether to laugh or cry.

That, and it provides a nice lead in to a difficult subject. When a person with disabilities or a medical condition is required to go through secondary screening, they have the right to request that it be done in private. At which point, not only is the secondary screening performed (as always) by a same-sex TSO, but the passenger also has the right to have the witness of her/his choice present. And, and as noted above, a paper smock of some kind it provided so that the traveler can remove bulky items of clothing, e.g., sweats, to allow for the lightest possible touch.

Now, I fully understand that the national director of a major support group for the blind, is going to travel with much greater frequency than someone with debilitating RSD/CRPS, but we all have to travel from time to time.

So the question is, is whether a significant number of people would prefer a choice of either partially disrobing in complete privacy, putting on a paper smock and then being patted down from there in a private room with a witness, etc., or, under the same circumstances, completely disrobing, putting on a gown, and then, after the TSO has gone over your clothing with a wand, dropping the smock for 5 seconds, raising your arms and turning around. And consistent with the secondary search policy, it would not be any more invasive than that.*

I understand if the whole concept seems outrageous to some of you, and I wish the emphasize that this would be a strictly voluntary option. So with that, would anyone be interested in having this as an option? With sufficient interest and its own internal approval, the RSDSA could then formally submit this as a proposal to the TSA.

And in the event of some interest, I may put up a separate polling thread to gain further input.

Let me know. Thanks.

Mike


*As opposed to when I was a young man with long hair trying to enter Canada in a car with some friends, long time back, and the agent found OMG "a seed!" on the floor of the car, at which point, we and all of our possessions were subject to a significantly more invasive procedure, not that anything turned up.
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Old 06-15-2011, 06:27 PM #4
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I know Suzy would not want to put on a paper anything, a stranger seeing any naked part of her at all. Same sex human for same sex dog. What the hell is going on?
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Old 06-15-2011, 07:49 PM #5
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Quote:
Originally Posted by Jimking View Post
I know Suzy would not want to put on a paper anything, a stranger seeing any naked part of her at all. Same sex human for same sex dog. What the hell is going on?
Jim -

We can only play the hand we're dealt, and right now the paper smock is offered as an alternative to a somewhat heavier touch (careful to use only the back of the hand) through clothing, if called upon for a secondary scan. For how these issues are handled in other contexts, see, "What To Expect At The TSA Checkpoint if You Wear a Breast Prosthetic" at http://www.tsa.gov/travelers/airtrav...rosthetic.shtm and "What To Expect If You Are a Person Who Is a Victim of Sexual Trauma" http://www.tsa.gov/travelers/airtrav...al_trauma.shtm

I'm just throwing out the "drop the smock" idea another alternative, that may be may acceptable to some in the CRPS community, any other suggestions - given the constraints of THE SYSTEM, are welcome. For the TSA's general policies on "Travelers with Disabilities and Medical Conditions" - not including at the present time the FAQs for survivors of breast cancer and sexual trauma, see http://www.tsa.gov/travelers/airtrav...eds/index.shtm and in particular, "Hidden Disabilities" at http://www.tsa.gov/travelers/airtrav...rial_1374.shtm (Note, however, that the medical notification card referred to in the opening post is not yet included on the TSA site, but is apparently found somewhere under www.disabilities.gov as well as on a number of organizational sites: the TSA is working on getting its website act together.)

Seriously, if anyone has any better alternatives - in light of the underlying constraints - let's hear them.

And finally, as far as "same sex human for same sex dog" is concerned, I can only fall back on the ultimate Yankee, Ralph Waldo Emerson:
A foolish consistency is the hobgoblin of little minds, adored by little statesmen and philosophers and divines.
Mike
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Old 06-15-2011, 08:03 PM #6
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What crosses my mind is the pain she would have to go through just changing cloths on just any given day. We were recently in the eastern shore of Delaware. We were walking on the shore line, the water was cold, about 65 degrees and the air temperature was 100. Suzy was barefoot and because of the contrast, I believe, her feet soon turned blue and became very swollen. She couldn't get into her shoes and had extreme difficulty changing pants. That was last week and only today her feet are finally deflating. However, I suppose if we fly she could wear a bathing suit, a tight one.
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Old 06-24-2013, 12:55 AM #7
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Default Mike, you're an angel in disguise!

Quote:
Originally Posted by fmichael View Post
I participated this afternoon in conference call with representative of various disability organizations..................

Mike

Mike, just wanted to thank you for ALL you are doing for those of us who suffer from a disabling disease such as CRPS, especially when it comes to tolerating air transportation. I've flown a number of times after being diagnosed with CRPS with minimal lasting physical effects. However, just returned from vacation - only 3-hr. flight. Upon descent, this deep, slicing, horrific pain started in my abdomen and by the time we landed, engulfed my total body in excruciating pain. I could barely get out of my seat & bit my lip to keep from screaming. I cried all the way home praying it was temporary, but it progressed.

Immediately, scheduled an appt. with my pain specialist MD for a SGB to the rt arm the next day. Received that and will start with another block to the rt leg & foot, followed every other week by further blocks until some type of pain control can be achieved. I Praise the Lord these blocks do work for me. However, my neck and head discomfort are totally new!

I'm supposed to be flying again in Oct. and am scared to death, but with your influence with the TSA Dept., maybe I could at least look forward to a very light pat-down. Thanks for your continued support and for providing TSA with some very vital health info. about a disease that's not recognized or acknowledged.

Keep up the good work & God Bless You!

Sherry
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Old 06-24-2013, 08:10 PM #8
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Just a side note to maybe brighten your days..

two years ago i was flying with my partner who has rsd upper left side and left hip. she always uses a can and slide on shoes and since we travel frequently we have our routine down to a science. for some reason this one day they helped her through the metal detectors, and even though she didn't set them off they still decided to do a pat down. she was already feeling awful and when the gentleman went to pat down her arm i lunged forward and yelled 'no! wait!' and every TSA agent and passenger stopped and stared!! the guy stopped and i stepped backward out of the machine and kept apologizing... but the guy did too!!! he asked if she could just roll her sleeve up and everyone was actually really nice because i was convinced i just got us arrested. he had someone else take over and helped her sit and got her cane for her! it was great to see! this was JFK around 5am

(especially bc now with the full xray machines she can't hold her arms up to we usually end up staring at our carry ons for 45 minutes on the other side of the belt and waiting for someone to come over for the pat down)

I'd also like to add she recently has an IME and i ended up having to physically push the doctor off of her after she asked 5 times for him to stop and almost passed out. guess i'm still a little traumatized after that one haha
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