****11 APRIL GREAT NEWS UPDATE****

I just got off the phone with the SSgt and he informed me that he is being offered a TDY (i.e., government-paid trip) to Duke for his surgery and recovery time! All praise be to God and the humble, servant leaders at the highest levels of the world's greatest Air Force...General Welsh, Lieutenant General Travis (AF Surgeon General), Major General Ediger (Deputy AF Surgeon General), General Hostage (Air Combat Command Commander), and Chief Cody (Chief Master Sergeant of the Air Force) for working around the regulations to take care of an Airmen in need. And thanks to all of you for your thoughts, prayers, and e-mails/phone calls to the Medical Group Commander! The SSgt, his 2-year old daughter, and his mom and dad thank you from the bottom of their hearts!

God is good all the time and all the time God is good!
________________________________________________

Fellow Ags, I desperately need your help this morning to get a young Air Force Staff Sergeant urgent brain surgery at Duke University for a severe condition he likely developed due to hard C-130 landings in Iraq. I have known the SSgt and his family for 14 years and consider them family. Please read story below.

I am going way out on a limb here, but the family and I have exhausted all means to resolve the situation via the chain of command and are hoping that the power of TexAgs can help pull off a miracle for a Great American Hero! I highly encourage you to spread the word about this situation by any and all means possible (e.g., social media). The family and I thank you from the bottom of our hearts for anything that you can do!

BOTTOM LINE: I received word over the weekend from the SSgt's father about his urgent medical issue and the obstacles he has faced over the last four months trying to receive the best care possible at Duke. I have known the SSgt since I was his Altar Server Director in Asheville, NC when he was just 14 years old. He is a great kid and I am worried sick about him. His father gave me the rundown of the situation and it seems clear to me that the right thing for the Air Force to do is send him to Duke immediately for the urgent care he needs for the following reasons:

1) Duke University would be able to perform the surgery in a very short amount of time, but having the surgery in California will increase the delay time by as much as two months, thus exposing him to significant and potentially irreversible symptoms, up to and including paralysis. He has had the severe headaches associated with his medical condition for over four years!

2) His mother and father live just 30 minutes from Duke enabling them to provide the 6-10 weeks of optimum post surgery care he requires and help him watch his 2-year old daughter that he has custody of until 15 May. He will be in ICU for 2-3 days after the surgery!

3) He will move to North Carolina upon separating from the military (a humanitarian reassignment to North Carolina could be possible).

4) He has a very serious condition that requires the best brain surgeons in the country, which happen to reside at Duke.

5) Tricare and a world-renowned doctor at Duke have already approved his treatment at Duke (could have had the surgery 3 weeks ago).

BACKGROUND: The SSgt has been with the United States Air Force for about 8.5 years and is currently stationed at Beale Air Force Base, CA. He began his career with the United States Air Force on September 27, 2005. Along with being stationed at Little Rock AFB and spending three years in Germany, he also served a tour in the Middle East supporting Operation IRAQI FREEDOM as a Loadmaster on C-130’s. During his deployment to the Middle East, he developed significant headaches that were originally diagnosed as migraine headaches, eventually losing his flight status and thus having to retrain into the new career field of Geospatial Intelligence; all the while still suffering from severe headaches, which turned out to be incorrectly diagnosed as migraines.

On 18 November, 2013, after having an MRI for the persistent severe headaches, he was diagnosed with Chiari I Malformation and this condition was determined to be the source of his severe headaches. A medical definition of Chiari I Malformation is listed below:

“Arnold–Chiari Malformation, or often simply known as Chiari Malformation, is a malformation of the brain. It consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull), sometimes causing non-communicating hydrocephalus as a result of obstruction of cerebrospinal fluid (CSF) outflow. The cerebrospinal fluid outflow is caused by phase difference in outflow and influx of blood in the vasculature of the brain. It can cause headaches, fatigue, muscle weakness in the head and face, difficulty swallowing, dizziness, nausea, impaired coordination, and, in severe cases, paralysis.”

On 28 February, Tricare approved the critical surgery and associated follow-up visits at Duke that he so desperately needs. In addition, Dr. Carlos Bagley, the Director of Neurosurgery at the Duke Spine Center, agreed to evaluate and treat him for his recently diagnosed Chiari I Malformation with compression of the brain stem and upper spinal cord along with syringomyelia and expansion of the lower cervical spinal cord. Dr. Bagley is recommending that he receive treatment as soon as possible to guarantee the best prognosis for both his short and long-term recovery.

After a second round of MRI’s, the Neurosurgeon, Doctor Todd Eads, said in his findings, “There is a large ulcerated syrinx within the cervical spine. The series begins at the C1-2 and extends down to the level of the T2-2 disk space, or about 13.5 cm in length. The maximal diameter is 1.4 cm.” When he talked with Dr. Todd Eads, he told him that he was in amazement that he did not have greater symptoms based on the review of the MRI’s.

DISCUSSION: After doing the research for a doctor in North Carolina and receiving approval for treatment at Duke, the military denied him the ability to have the surgery in North Carolina based solely on policy and protocol (saying there is a doctor available locally that can perform the surgery). However, Duke is covered under TRICARE/United Healthcare and his parents are willing to personally pay for his airline tickets and other expenses travel expenses to and from North Carolina so he can have surgery, but he was told that was not an option. Unfortunately, this inability to be flexible under extreme circumstances and go outside rigid policy and protocol creates a significant dilemma and hardship for his family outlined below:

1. When SSgt questioned the military about care after his brain surgery (i.e., travel from Sacramento to Beale AFB, care after the brain surgery at home, etc…), he was told the Air Force unit would have some people come by and check-in on him, which we feel is totally unacceptable. This is brain surgery, not treatment for a hernia! His mother is currently with him in California (via a one-way ticket) to take care of him before the surgery (to do things for her son to not further complicate his condition), and to provide after surgery care. In order to make this happen, his family is taking away time from work to travel and stay in California (the father will be going before the surgery and staying for a while after the surgery) to care for him during his recovery from the brain surgery, thus placing a significant hardship on the family. Thank God that they both have flexible employers!

2. Duke University would be able to perform the surgery in a very short amount of time, but having the surgery in California will increase the delay time by as much as two months, thus exposing him to significant and potentially irreversible symptoms, up to and including paralysis. He has his consultation with the surgeon in California on April 15, 2014 (this big delay is due in part to the shortage of doctors in California). After the consultation, they will then still have to schedule surgery. This process has taken way too long and his family will have to deal with any long-term issues created by the unnecessary delays. If he would have been allowed to have the procedure performed at Duke, he would have already been almost three weeks into his recovery period, yet as it stands he still has not even had the consultation with the doctor in California.

3. Considering the seriousness of his condition and the importance of getting the surgery as soon as possible, he is being forced to choose between doctors that he does not feel as comfortable with and the possibility of significant crippling symptoms, up to an including permanent paralysis.

The SSgt and his father contacted their US Senators and US Congressman about the situation and on or about April 4, 2014, he did receive a letter from Congressman George Holding that the military had denied him the opportunity to have the surgery performed at Duke Hospital in North Carolina. I am confident this decision was made without the previous two documents being considered (the letters from United Healthcare and Dr. Carlos Bagley) and was likely made with incomplete information. In the letter dated April 4, 2014, denying him to have the surgery performed at Duke, it states that he refused to have the operation in California, which is not true. The doctor asked him where he would be having the surgery. He informed him that he was aiming for Duke (hence the approved referral the same month by United Healthcare). He never refused anything and only told the doctor he would prefer to have the surgery at Duke, because it's close to home for his care after the brain surgery and the doctor agreed. In the letter from Dr. Bagley, I point out that at the end, he expresses his professional opinion that he would “advise treatment for him as soon as possible for the best prognosis for both his short and long-term recovery.” We think this letter is very important as it confirms the deep-seated concerns about his long-term health by having the brain surgery performed in California instead of at Duke.

It is important to note that one of his physicians, upon learning that he was a loadmaster on a C-130 deployed in Iraqi, told him that his problems with Chiari Malformation were the result of hard landings during deployment sorties in Iraq. It was during this deployment that his severe headaches started. It is also interesting that after he was denied care at Duke, he searched and found a doctor in San Francisco, but the military told him they would not approve San Francisco because they would have to pay his travel mileage, which is only about $140 (260 miles round trip X $0.53)! He told them that it was not necessary to pay the mileage as he would incur the cost himself, since the doctor at San Francisco was one of the higher rated neurosurgeons on the west coast. However, once again, he was denied the care that he deserves.

The SSgt's mother is in California for the unforeseen future because after all of these months dealing with the doctors, surgery in California still has not been scheduled. If he is allowed to come to North Carolina, his mother and father would be able to provide the important after brain surgery care, in their home, without any increased difficulties and hardship to their family. This decision is a common sense decision, that may not be consistent with the military rules, but the risk of not sending him far exceeds the letter of the rule. In addition, there are legal ways to get around the rules in extreme cases such as this one. According to Duke's website they are studying and operating on Chiari Malformation patients, which is another reason that makes Duke the best choice.

This SSgt has served our country honorably for the past 8.5 years. So, I would appreciate any assistance that you can provide that will get him approved to have this critical surgery performed at Duke as soon as possible in order to ensure that he does not suffer any significant and potentially irreversible symptoms up to and including non-reversible paralysis. It is also important to mention that his parents (as do all those of military personnel) have served our country diligently in supporting him and our country while he has been away serving in the United States Air Force.

RECOMMENDATION: Pray.

Thanks for taking the time to help a Great American Hero and his family during this difficult time. We are forever in your debt!

God bless you and God bless America!

Very Respectfully,

Neil "Doc" Sanger, Lt Col, PhD, USAF


[This message has been edited by Air Force Ags (edited 4/9/2014 7:56a).]

[This message has been edited by Air Force Ags (edited 4/10/2014 10:19a).]

[This message has been edited by Air Force Ags (edited 4/11/2014 2:07p).]

[This message has been edited by Air Force Ags (edited 4/11/2014 8:10p).]

It seems to me that the Doctors AND TRICARE have agreed to fix the problem. The Air Force Medical Service - DoD healthcare is fantastic - and if they don't have the docs in house, they will contract with docs who can and will fix the problem.

Whether or not the patient/family - and you - believe that there are doctors in California as good as at Duke and good enough to fix the problem is questionable! i.e., let the docs take care of it. From what you have said, he is not being left without adequate care - just not the cherry picked doc you would prefer cross country and near his hometown.

AAAAAAAAAAg - Air Force Aggie Architect & Hospital Administrator from Amarillo, Altus, Austin, Arabia, Africa, Seoul, Amman, Arkansas (ret) '65, '69, '73. Track Letterman
"The most potent weapon against basic human decency, in the armamentarium of pure evil, is the self-imposed ignorance and moral decay of the people themselves."

Aggie1, you could not be more wrong! First off, would you be satisfied with so-called "adequate care" if your son or daughter were having critical brain surgery? Second, what exactly is "adequate care" and who determines that level? Shouldn't we want the best care possible for our veterans? Third, there are legal ways to get around the rules for a special situation such as this one. This is not a root canal or hernia surgery! In addition, you are completely missing the family hardship issue of providing 6-10 weeks of after care in California, which includes 2-3 days in ICU. Not to mention the fact that Jarred has custody of his 2-year old daughter until 15 May. The family is willing to pay for all costs outside of the surgery, so their should not be n significantly increased cost to the Air Force by sending him to Duke.

According to Field Manual 22-100, "The nation, as well as the members of the US Air Force, hold commanders accountable for accomplishing the mission, keeping the institution sound, and CARING FOR ITS PEOPLE." Sometimes caring for your people means going out on a limb and putting your money where your mouth is in a unique situation like this one!

The process that you declare is so wonderful and efficient has taken over 4 months to finally give Jarred a consultation on 15 April, while Duke could have had the surgery done three weeks ago! It is clear to me and many others that the right thing to do is send Jarred to Duke...hands down!



[This message has been edited by Air Force Ags (edited 4/9/2014 11:59a).]

The meeting broke around 12:30 and Colonel Ocker denied Duke after shutting me and the father out of the meeting! I am none too happy and just sent an e-mail to the highest echelons of the Air Force at the Pentagon! I am thouroughly disgusted!

Just got a personal e-mail from General Welsh that sounds promising. He is asking his staff some questions and will get back to me quickly! In fact, he asked the Air Force Surgeon General about getting with the right folks and providing thoughts/recommendation.

I must say I am very impressed with General Welsh's rapid response!

Hoping for the best!

Request mast, or whatever the army equivalent is. Can go up to to the first GO in the chain of command, and has mandatory fast turnaround.

Hadn't seen the Gen thing, best of luck.

[This message has been edited by Sempergigem (edited 4/9/2014 4:05p).]

1) allowing you in a hearing would be a HIPPA violation
2) thank you for undermining the Chain of Command. Are you Sen. Gillebrand?
3) there has never been a hard landing of a C-130 in Iraq
4) the military health system is required by law to attend to service member needs, not allow them to choose their own providers at their leisure
5) you've got to be trolling. Or maybe you're an E-3 barracks lawyer

6) you've violated the **** out of HIPAA already

Air Force.
I am a compassionate person. I have been involved with military healthcare for over 40 years and am in fact a retired AF MSC - and have yet to find a military doc who does not meet every standard of his/her specialty. And, I agree that Beale AFB is rather remote and unlikely to have the care required for what you have described...

However, the military medical service has a contingency plan for every situation.
1). Local care if available
2) contracted care locally, or
3) move to next level of military medical center who can assist (in this case Travis AFB since Letterman and Oak Knoll are now closed), and
4) to nearest specialist major metro who can deal with the situation.
5). As an active duty person your friend gets first choice on all of the above.

IF the only person on the planet to do the work is at Duke after all else is considered - including Fort Sam BAMC, Bethesda/NIH, Walter Reed/Belvoir - then it is possible other places like Johns-Hopkins, Dule, etc will be considered.

And true, post surgery care based on humanitarian reassignment is possible as well.

But, to circumvent the proper protocol and "system" by inviting a flood of correspondence would invite all sorts of investigations into impropriety and possible remunerative actions.

What you have requested is for compassionate friends and acquaintances to circumvent the system. This is inappropriate.

There is no doubt in my mind that the authorities having jurisdiction and who will make the decisions will do what is best for your friend.

Prayers sent.

I am not a doctor but I am familiar with Chiari malformation and some of the symptoms. I know the parents of two children who have it and have over the past couple of years had successful surgery for it at VCU Medical Center in Richmond. It is a serious condition.

This is not going to be well received but for whatever it's worth, I believe that the civilian doctors' statements about the cause of the symptoms has been conflated with the cause of Chiari malformation. I could be completely mistaken but from everything I've read Chiari malformation (all types I-IV) is a congenital defect that may be asymptomatic until a certain age or a trauma causes it to manifest itself in headaches, nausea, and pain or numbness in extremities. Regardless, since it was not identified before he was accepted as physically fit to serve, the government owns responsibility for the treatment.

http://www.spinesurgery-wecareindia.com/condition/chiari_malformation_overview.html

Except in really compelling cases where military doctors and treatment facilities admit outright that they are incapable of providing the specialized treatment the military is going to opt to have the patient treated at an MTF. The cost difference for treatment at Bethesda, Balboa, or some other MTF is much less than if it is done at Duke, the Mayo Clinic, or Johns Hopkins. The CSAF's personal interest is probably the only hope of getting this adjudicated in your friend's favor but even then it's probably going to come down to the question of a consensus on the level of urgency and the competency of military doctors to perform the procedure.

No violation of HIPPA occurred as SSgt Dawson signed paperwork granting me access to his medical data!

What the heck is wrong with a leader doing what is right in a given situation, especially upon seeing an injustice occur to a dear friend's son? It is called servant leadership! These military members are human beings, not robots! Good grief!

quote:

---

3) there has never been a hard landing of a C-130 in Iraq

---

Ulysses. I somewhat agree with what you posted. With that being said, my daughter had Chiari and we went through about 6 years of trying to determine what was causing her issues until we finally had a brain scan. After the brain scan, we had 2 doctors with the same hospital saying two different things. We also consulted another local hospital with again poor advice. After months and months of research, we finally took our daughter to the Mayo Clinic. Problem solved.

Chiari Decompression surgery is very complicated with the dura of the brain usually cut into. If you look on the internet (and I know you can find a lot of good things and bad things on the internet), most of the things you read about Chiari are disasters. This isn't a case of every part of the country having a doctor that is an expert on this surgery.

Also, with respect to costs - Children's in Dallas was going to be about $60,000 more than the Mayo Clinic was for our daughter's decompression surgery and aftercare. So I think this would fit into the Tricare budget.

Bottom line - this type of surgery isn't done everyday and the successful surgeries are few and far between. I know that as a parent, I wouldn pick a surgeon that does 50 of these types of surgeries a year versus a surgeon that performs a few of these surgeries a year.

Just my preference.

I just got off the phone with the SSgt and he informed me that he is being offered a TDY (i.e., government-paid trip) to Duke for his surgery and recovery time! All praise be to God and the humble, servant leaders at the highest levels of the world's greatest Air Force...General Welsh, Lieutenant General Travis (AF Surgeon General), Major General Ediger (Deputy AF Surgeon General), General Hostage (Air Combat Command Commander), and Chief Cody (Chief Master Sergeant of the Air Force) for working around the regulations to take care of an Airmen in need. And thanks to all of you for your thoughts, prayers, and e-mails/phone calls to the Medical Group Commander! The SSgt, his 2-year old daughter, and his mom and dad thank you from the bottom of their hearts!

God is good all the time and all the time God is good!