Advocate For Yourself

Always advocate for yourself. In the past 2 years I have had a ridiculous number of doctors appointments and tests. As you have read in my others posts, I don’t have complete trust in the medical community, so I always pick up a copy the records from my appointment and tests. My experience is a great example of why you want to always get copies!

I have lost strength and endurance in my right arm/shoulder. So much so it has made it impossible to work in my career field. I can barely hold a coffee cup in my right hand without it fatiguing quickly and needing to rest it. There is no way I can sustain an exam for 30-45 minutes that requires not only holding a probe but manipulating myself and the patient in positions we are not meant to be in for 8 hrs a day. Anyway, I first started having problems with my arm after I dislocated it (a common hEDS issue) while performing a vascular exam on a handicapped patient. My orthopedic doctor did all the usual things, x-ray, steroid shot, pain meds and physical therapy for 8 weeks. The shoulder felt better overall but I never regained strength.

I then went to my primary care doctor and she ordered more physical therapy, for my arm and fibromyalgia. After 12 more weeks of physical therapy my primary care sends me to another specialist who orders an MRI.

Now here is where it gets ridiculous. I see, because I pick up copies of my appointments, that I am to have an MRI with and without contrast but when I go to have the test it isn’t done. I ask the technicians about it and am told no that the contrast wasn’t ordered. So the MRI was done without contrast. I then get a call from the specialist who tells me she got the results, that my rotator cuff is frayed and that I have a large lipoma on my shoulder blade (within the infraspinatus muscle). I asked the doctor if it was the reason for the issues I was having and her response was “no, I don’t think so” she then said she wanted me to do more physical therapy. I’ve been doing PT for almost a year now with no improvement.

Of course I don’t trust the doctors to do their jobs properly so I got a copy of everything and had a look at it by ultrasound. This thing is huge, it’s protruding into the joint, it’s complex and the muscle moves over the top of it.

Now mind you this specialist only wants me to go to physical therapy and does not believe this large mass is the reason for my issues. Does that even make any common sense to you?

I promptly insisted on seeing an Orthopedic Oncologist. This is where personal advocacy is so important. The test done was without contrast, without the added benefit of contrast, there is no way to be certain that the mass is not something more serious like a Liposarcoma. After visiting with the Orthopedic Oncologist, he agreed, I needed a proper MRI with and without contrast and prior x-rays on my shoulder to determine exactly what we were dealing with. What my Orthopedic Oncologist has determined since having the second MRI with contrast is this mass is eroding the bone within the Glenoid Fossa, (hmm, could this be why I am having issues in that arm?) it has grown irregularly throughout the infraspinatus belly and teres minor muscle and it has wrapped around the supraspinatus nerve and blood vessel. He does not believe it to be cancerous though. Since surgery for an hEDS and MCAS patient is often difficult and riddled with additional complexities. We have decided surgery will be needed but to wait at least 6 months to determine the rate of growth and to clear some of my other health issues that came up since I started this process.

Please be aware any mass that has the following characteristics should be investigated with further testing. Whether that is CT, MRI, Ultrasound. Also, without a biopsy there can be no confirmation of disease. There are very specific traits that are looked for and having one or more of those traits show up on the previously noted exams does increase the likely hood of cancer but biopsy is the definitive answer.

Any mass should be investigated further if

  • The mass over 5cm
  • The mass is complex or irregular in shape
  • The mass has increased vascularity
  • The mass is symptomatic: fatigue, pain, redness, weakness

So here is an advocacy tip: always get a copy of your reports and imaging and double check them. Getting a copy of the exams is pretty easy to do. You just need to ask for them and the report at the time of the exam. Getting your doctor appointment documentation can be a little more difficult because of the expense or your doctor simply not wanting to do it but don’t forget you have a right to your records.

Do you have a similar story? Please share it with me. Your story could help others too.

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