November 1, 2023 at 1:49 pm #380575
I am working with a gentleman in Los Angeles. He has had a 40 lb weight loss, states his testing for Ehlers-Danlos syndrome was negative; however he said swabs were taken. I researched that blood sample is taken in rare cases. He states he has results from genetisist stating he is negative. He does not want to look further into this. He said he is positive for MALS; however, I have not seen the MRI results he refers to. What I did see was the report from a Bariatric Surgeon that stated he should follow up on other recommended testing to rule it in or out. I expressed to him it is not ruled in or out at this time according to last report. He has seen sports medicine MD, Derm MD, Bariatric Surgeon. I will be attending some appointments with him- Neuromucular neurologist pending.
Statement by client:
Nervous system, diaphragm, GI, herniations (MALS, initial injury). 2: rectus sheath insertion, linea alba tear, rectus diastsis (soft tissue, initial injury). 3: Tear along edge of rib cage, muscle tear off rib cage, waist muscles shutting down (6 months into injury, leading out from initial injury bilaterally) 4: Hole opening up across chest and abdomen, laxity growing through body, skin tearing / lifting off of attachment (8 months into injury, leading up and down midline from initial injury, and taking a year to run it’s course.)
-He has already worked with an advocate prior to me in Los Angeles. He is very ambiguous as to what he needs from me. Myself and the previous advocate have educated him on giving too much information to the doctor ie; he feels his care has been neglected, he feels he has been discounted by the medical profession due to his Adult Autism DX. So, I am reaching out to see if there are any advocates that have experience in Connective Tissue disorders that can take this case if the client agrees. Or offer me any of your experience. I am in Orange County CA client is in Los Angeles
November 2, 2023 at 2:28 pm #380597
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 likely on one end of a spectrum of Hypermobility Spectrum Disorder (HSD). There are some specific tests for EDS, but often the only tests for HSD is clinical using history and the Beighton score. If he had a high Beighton score, he could have a HSD and tested negative for EDS.
3). What was the original injury?
4). Where does MALS (Medial Arcuate Ligament Syndrome) come into all this? Is he having pain with eating?
November 2, 2023 at 3:24 pm #380598
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 negative for EDS. States he never had hyper mobility issues until injury. We are working on ruling in or out MALS with recommended testing from a bariatric surgeon.
I have a better understanding through my research. As with any rate disorder that goes undiagnosed, he feels he was gaslighted early on. So, hopefully we can get the correct diagnosis to bring him piece of mind. I appreciate your input.
Thanks so much
November 2, 2023 at 3:33 pm #380600Gail GilbertoParticipant
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 into Churg-Strauss or EGPA? The weight loss, abd pain/issues and pain form a seemingly unusual source are all potential signs, though there is no definitive testing, and like all of these conditions, it can be very complicated to get the right diagnosis.
November 3, 2023 at 6:26 pm #380614
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 and getting a diagnosis on his chart although he has not set up the recommended testing to rule in MALS.
November 4, 2023 at 1:24 pm #380625
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 recti?
Also, what have been the assessments of the sports medicine physician or bariatric surgeon regarding the reported abdominal wall changes?
November 5, 2023 at 11:01 am #380629
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 abdomen, he continued anyhow.
‐‐ I felt painful thrusting and tearing in abdominal wall.
‐‐ Hiatal Hernia, hernia through rectus muscle, nerve damage, impaired diaphragm, GI shut down.
‐‐ Diastsis recti, linea alba tear, damage along chest wall. Multiple layers of soft tissue damage.
‐‐ Debilitating pain for over a year. GI dysfunction for over a year. This was the initial injury.
Synopsis of Appointments:
Date of injury as seed by client: 12/3/2021 as stated by client: The client stes this is where he felt the tearing- The client has some mental health issues where he is his own worst enemy when communicating with the doctors due to his belief in his misdiagnosis. I have educated him on communication with self advocacy and limiting his focus on the priority of the appointment at hand. He is very set in his ways as to what he wants and doesn’t want-
Point Info obtained from reports and not by this advocate:
1)Sport Med: 6/29/2023:
MRI: Magnetic Resonance Imaging Results -abdominal and chest MRI without contrast
Upon my limited review of the superficial musculature of the MRI examinations, noted that there is a defect within the left upper rectus. The defect is black on T1. I recommend a 2nd opinion from an orthopedic or physical medicine rehabilitation specialists.
Ultrasound Exam USUltrasound Examination of the Rectus In the left upper rectus region, there is a region of hyper-echogenicity suggestive of previous and incorrectly healed defect. There is hypo echogenicity on the patient’s left lower ribcage region lateral to the rectus abdominis origin, approximately at the midclavicular line. This is suggestive of a defect of the muscle detached from inferior ribcage. In the left upper rectus region, there is a region of hyperechogenicity suggestive of previous and incorrectly healed defect
Plan: Patient has a complex history of injury to his abdominal wall that appears to be worsening. Ultrasound examination and MRI examination as above. Patient’s history is complicated by Ehlers-Danlos syndrome.( Client states that should not be on his record-he doesn’t have it and wants to move on) I do recommend the patient follow up with an orthopedic specialist, physical medicine and rehabilitation specialist, or reconstructive surgeon to further evaluate the patient’s treatment options. We can attempt prolonged therapy versus platelet rich plasma within the defect of the rectus muscle, but the patient continues to have the diastasis recti on ultrasound examination. Patient will follow up with me after his evaluation with the specialists
2) Liddy Healthworks:(Chyropractic)
Upon visual inspection of his abdomen, 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 patient’s ribs and sternum flared. In an effort to rule out diastasis recti, fascial tears, muscle tears and solar plexus injury, the patient has been referred to radiology, gastroenterologists, and orthopedists and has not received any answers.
3) 6/29/2022: General Surgeon
assessment of Abdomen: Flat, soft. No scars. 6mm fascial defect at midline superior umbilicus. Moderate rectus diastases noted from typhoid to Umbilicus. Mildly TTP in upper midline and costal margin including over the typhoid, though no fascial defect palpable in this area.
Longstanding supraumbi hernia, not involved in symptoms. Small diastisis
PLAN: NSAIDS And encourage second opinion from PT or PM&R
-Offered repair of asymptomatic supra-umbilical hernia repair: recommended to delay this to avoid confusion about overlapping symptoms from surgical pain and current pain
Discussed small hiatal hernia on CT from Cedars: No intervention recommended
4) 3/20/2023- Bariatric-Referred by GI
Patient will be scheduled for a celiac nerve plexus block for diagnostic imaging studies and constellation of symptoms. Patient would like to proceed with surgery.
Surgical treatment of MALS involves resecting the median ligament, which is causing compression of the celiac ganglion, as well as resecting the celiac ganglion and nerve plexus. Operation is done robotically
****Suspicious for MALS*****
Additional studies recommended to rule in or out MALS:
EGD with Dr Shamsi
4-hour Gastric Emptying Scan
He wants the Nerve conduction study to see if how his nerve conduction is hindering his muscle recovery. The complicated part of this case is the client’s direction:
Although he wants the MALS ruled in or out and states he has a diagnosis of MALS, I have reiterated to him that he will not have a definitive diagnosis unless recommended testing is completed. I have to advocate for what the client wants but, at the same time I am being honest and realistic with educating him on his goals and outcomes.
He agreed with the recommended surgery at the time of appointment consult but now he has stated his muscles have improved somewhat, so, he wants to move on from there. I do not believe there was ever testing prior because he didn’t feel the injury until the deep tissue massage. However, when reading the notes it states, “suggestive of previous and incorrectly healed defect.”
He is considering nerve plexus block for diagnostic imaging studies and constellation of symptoms and has stated he does not want surgery- But, in the next breath talks about surgery. I agree with you that it had to be quite the deep tissue massage to cause injury. My goal is to be real with him about his diagnostic results, his goals and expectations. I have offered him to meet with another advocate with experience in connective tissue disorders but, he would like to continue on with me at this point and may consider that later. You bring up good questions to ask him about- On initial consult, I thought maybe he had bariatric surgery but he stated he did not.
I can’t thank you enough for your input. I have found both of your questions and direction very helpful .
November 5, 2023 at 4:21 pm #380630
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 that to client at tomorrows appointment
November 9, 2023 at 1:07 pm #380686
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 not specify specifically where on the abdomen these exam findings were located. What I find most interesting is there was no bruising documented. The studies he has had leave little doubt that there has been an injury at some point in the past. If he did sustain an injury during that massage that tore rectus muscle from it’s attachments, it seems there should be some bruising by 3 days, but it isn’t documented. Also does he have pictures of his abdomen that are date and time-stamped on his phone for example? Just curious. I do think he has had the correct imaging, first and MRI then followed up with the ultrasound. That appears to be appropriate in the evaluation of the abdominal muscular defect.
Regarding possible MALS:
3/20/2023- Bariatric-Referred by GI
****Suspicious for MALS*****
Additional studies recommended to rule in or out MALS:
EGD with Dr Shamsi
4-hour Gastric Emptying Scan
Here is a very clear workup/treatment plan for possible MALS. It would be good to discuss with him the importance of following up with the bariatric surgeon and his/her recommendations. If he is focussed on what is occurring to the prior left rectus muscle injury, this may be why he has declined proceeding with the further workup.
You made an interesting statement “I have to advocate for what the client wants but, at the same time I am being honest and realistic with educating him on his goals and outcomes.” My background is as a Family Physician. Prior to retiring, I found that medicine was becoming more and more business like where patients were being viewed more like “clients or customers”, at least this was my experience here in the United States. The phrase “the customer is always right” was becoming something to be dealt with in medicine…but the customer (and hence the patient) is not always right. In those cases I had to educate him or her and provide the best options based on the diagnosis. In the end, they had to decide whether or not to take my recommendations on their treatment.
Now, I could be wrong (and if there are more seasoned advocates out there reading this, please feel free to correct me), but I don’t think that advocating for the client always means we have to push for everything they say they want, especially if we find through our research that their thinking is flawed, may lead to harm or lead to a large financial loss, for example. Now, we do listen. We always listen. That is probably a very large factor in why clients hire advocates is to know they have been heard (it is certainly a reason that patients change physicians), but we also want the best outcome for the client/patient which means educating him or her the best we can… which is what you said in the second part of your statement. Ultimately, though, they are the ones to make the decision for their care, we are coming along side them. That kind of honesty and communication with the client I think is important.
Lastly, listening to his story, whether or not he actually received the injury to the abdominal musculature during that massage in December 2021, there seems to be a great deal of fear surrounding what happened there. And sometimes with fear comes pain. Is it possible he received an injury there at some point previous to December 21 which was the reason he specifically told the massage therapist not to massage that area. That could be something to consider delving into.
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