My brothers

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Just wait and see! You have been the perfect guardian so far. After you fix the problem you can knock the crap out of him!
 
First, good luck on the test. I hope it provides answers. Second, can any of the pain solutions be conducted at the same time as the initial procedure?
 
First, good luck on the test. I hope it provides answers. Second, can any of the pain solutions be conducted at the same time as the initial procedure?
I am going to ask the surgeon about something called "nerve stripping" and "celiac plexus block" that I have read about. I don't know what the indications for them are.
 
Sigh.....you have saved them. It pisses me off that you are put in this position. They are fucking adults!
 
Medi-Cal for indigent adults requires that each county administer the Medi-Cal coverage themselves, resulting in a wildly inconsistent hodge-podge of local plans. Los Angeles County has several LOCAL-DOCTOR-ONLY Medi-Cal HMOs as their only choices, one of which is HealthNet (not a bad plan, and I put my other brother into it), but there is an exemption available if the patient has a complex medical condition that requires being treated outside the HMO - which exempton is what I have been trying get put in place since the end of June when he was accepted into Medi-Cal, since the best surgeon in CA is in Orange County at UC Irvine. That exemption keeps the patient on state-run "straight Medi-Cal" - which a surprising number of doctors take, and the patient with straight Medi-Cal can (with the proper referrals) go to any of them, regardless of which county they live in.

I called Medi-Cal two weeks ago about the fact that the exemption has not yet been processed, to ask when - in the absence of the exemption being finalized, and in the absence of a response to the requirement that my brother PICK one of the LA County-only (and unsuitable) HMOs, he would automatically be placed into one of the HMOs - they said September 1st - and I said, can you PLEASE make sure that doesn't happen, because he needs to be excluded and to have his upcoming appointments covered by straight Medi-Cal but not the HMOs on September 2nd (diagnostic CT angiogram) and 4th (follow up appointment with the vascular surgeon to discuss diagnosis and treatment) - and they said don't worry about it.

The paperwork for the exclusion is ridiculous of course (they wanted notes from his last 5 appointments - he's only had ONE appointment with UCI so far, and one with his PCP!), and confusing (the UCI surgeon's assistant called me 10 days ago to tell me the radiology appointment was approved, and noted that she had also received a letter from the Medi-Cal Exemption department - and I asked her if they wanted further information or were just noting that the request for exemption was being processed - and she said, "oh wait - they DO want more information - it is in 8 point type and I didn't even SEE it before!" - FMR!), so the exemption has not yet been processed.

I put my phone number in all over the place as the contact person for my brothers. This morning, at 8:45 (with the appointment for the critical CT angiogram scheduled for 9:45 AM, at UCI, which is 30+ miles away in always-rush-hour-traffic), I get a phone call from the radiology department at UCI telling me that when they checked his insurance this morning (Sept. 2nd - they have to check at the beginning of each month), they were told his insurance was now HealthNet (the HMO that is limited to Los Angeles County) and no longer straight Medi-Cal, and that although he has precertification from Medi-Cal for the diagnostic procedure, they now have to redo it to get it from HN.

What the everlovin' FUCK?? Brother is already on his way to UCI; I have plane tix for Thursday to attend the follow up appointment; and I have been trying to get the doctors (either his PCP or the surgeon at UCI) to get all the paperwork done to get him EXCLUDED from being forced onto the HN HMO. And I was told not to worry about it.

So the admin from UCI Radiology tells me I need to straighten this out before he can be seen for the procedure - in an hour.

I get on the phone with Medi-Cal (AKA "Health Care Options" or HCO) and after a surprisingly short wait, someone answers, looks up his information - and advises me that the Exemption is still in processing, but that he has NOT been switched to the HMO. He is signed up with HealthNet DENTAL (which I filed for him), but not the MEDICAL. Someone was not paying attention, either at UCI or (more likely) at HCO when UCI called in.

A completely unnecessary kerfuffle - but it was a good thing they called ME and not my brother. If he had not left already, he would have shrugged his shoulders, figured he was fucked again, and given up - which I imagine is what MOST people faced with that sort of bureaucratic nightmare would have done, especially if they were used to being mistreated, ignored, and being left in the kind of pain he is in. As far as I know, he doesn't even know this happened, and the procedure is already over, and we may have answers in two days.

But - I NEED A DRINK!! It's after noon - does that make it OK?
 
And the verdict is in - I do not get my honorary MD. It's not MALS. His arteries were fine.

Which is a good thing, don't get me wrong. MALS is not a good diagnosis and the surgery to fix it is extensive and doesn't always work.

But then why is he in so much pain??

The other good news is that the docs still want to know. They are referring him to their top gastroenterologist, who will run more tests. At least they made him feel cared about, and that his pain mattered.

I will let him do the next appointment by himself - he's had two rounds of appointments with me present, and he's been a quick study on how to interact with the doctors. And he still seems to have hope that they will try to find an answer.
 
@Diana, I'm glad it isn't MALS which seems to be a horrid condition that is hard to beat. You both must be so frustrated, though, to not have a clear path ahead. Is a full body scan possible? Did they give him anything to help make him more comfortable while he awaits answers? I wondering if it would make sense for him to go on TPN....
 
After the appointment, I had a meeting with Dr. K - he also mentioned doing intestinal feeding, bypassing the stomach and upper intestine, to see if that makes a difference in his pain.

He weighed 136 with all his clothes and shoes on, and stuff in his pockets. At 5'11", assuming 4 lbs of clothes, his BMI is 18.4. He is 54 - his body looks like a boy, not a man. You can see all his ribs.
 
Sorry he still doesn't know the cause of his pain, but glad that it is not MALS. I hope the GI is able to find and treat the ailment swiftly. I am so glad that the doctor let your brother know he was concerned about him in the long run and made him feel cared about.
 
I am also sorry you don't yet know what it is - but hopefully it will be something fixable.
I will let him do the next appointment by himself - he's had two rounds of appointments with me present, and he's been a quick study on how to interact with the doctors. And he still seems to have hope that they will try to find an answer.

that is really good news
 

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