Hi Katy,

In addition to AnnMaries comments, it can be difficult to obtain coverage for treatments that are experimental and investigational.

Melanie Campa
Patient Advocacy Solutions LLC

Hi Katy,

Thank you for the additional detail.

So, Dec 3 2021 was the original injury per his report. The visit to the Liddy Healthworks on 12/6/21 just three days later: “I found mild redness. Palpation revealed mild to moderate swelling, warmth and the feeling of ropy tissue that was variant from the typical rectus abdominis.” The note does…[Read more]

My concern if I was the patient is : Has the correct Ultrasound been done or angiogram to see if there is restriction of blood to celiac artery that is causing tissue not to have enough profusion and causing detachment. This does not seem to be ruled out and blood flow and oxygenation of tissue would be a priority for me. I am going to present…[Read more]

Hello: Thank you Gail and Michael-You have both brought up valid questions that I will look into for my client as far as receiving a definitive diagnosis for him-As far as the records he has submitted to me,
Client’s submitted synopsis of injury:
December 3, 2021 (Massage therapy injury):
‐‐ I had told Dr many times not to work on my abd…[Read more]

Hey Katy
Definitely a complex case.

What is the purpose of the EMG & NCS?

That must have been quite a deep tissue massage to cause him to develop that type of pain. However, diastasis recti ? Is it possible he already had this? Are there any physician notes prior to this deep tissue massage that indicate he already had diastasis…[Read more]

Hi Gail,
He denies EDS states his testing was completed by a geneticist and does not want that topic brought up. He hasn’t completed all the testing recommended for MALS yet. We are meeting with a neurophysiologist to advocate for a Electromyography (EMG) and nerve conduction study-He will have other appointments also -he is seeking muscle repair…[Read more]

Katy,

The only times I have been able to get an HMO to allow a patient to go out of network for doctor appointments and/or treatment are when the HMO does not have the talent pool to treat the patient’s type of cancer. Examples: glioblastoma multiforme, Burkitt Lymphoma.

‘Tis very hard to get exceptions from HMO.

AnnMarie McIlwain
Patient Advocators

It does sound more like EDS Hypermobility issues. No one ever has an issue-until they do. There is so much ongoing R&D with EDS, so he should definitely make sure he has or connects to a true EDS specialist. Gastroparesis is common in these patients, but there are so may autoimmune and other rare diseases that may be the culprit. Has anyone looked…[Read more]

Not 50 to end of life for sc reening. Here are recommendations from the American Cancer Society website:

The American Cancer Society recommends yearly screening for lung cancer with a low-dose CT (LDCT) scan for people aged 50 to 80 years who:

Smoke or used to smoke
AND

Have at least a 20 pack-year history of smoking

Hello Michael,
I asked if he had bariatric surgery because I saw a bariatric surgeon to consult-but, this was to rule in or out MALS. He stated no bariatric surgery.
He states injury during a deep tissue massage. It felt like his skin tissue ligaments were tearing apart. Then his journey began with not wanting to eat due to the pain,
He states…[Read more]

There is a lot of information here. A few comments & questions to have answered to try to help you organize the thoughts :

1) you say he has lost 40 pounds. I’m assuming this is because he has already had bariatric surgery, correct?Or is this weight loss prior to surgery?

2). There is the diagnosis of Ehlers Danlos Syndrome (EDS) which l…[Read more]