Spinal Injury help
September 5, 2020 1:18 PM Subscribe
Friend has a herniated disk (maybe?) in his back (and an early childhood back injury), and no one will help him get care. He's been shuffled around many times, and is at a breaking point. What can we do?
Friend, A, is 27. When he was approximately 4 years old he was "rough housed" (probably beaten) by an adult, and had a broken spine in several places. The extent of the injury is not known to him, but due to it he has partially limited mobility of his upper back and shoulders (he can't lift his arms beyond perpendicular to the ground, for example). He has crohn's disease, but is not currently on treatment. He is also overweight, unemployed, and spends a lot of time in his room. He has health insurance through VA's expanded Medicaid.
About 2 weeks ago he started having severe back pain in his lower back. Couldn't get in to see a physician, but through a telehealth appointment got a referral to a physical therapist. By the time his PT appt came around, his pain had worsened, and was stinging to the touch. The physical therapist was worried that it could be ulcers from Crohn's, a spinal cord infection, or a previous fracture that re-broke, but said it was most likely a herniated disc, and told him to go to the ER. The ER did nothing. He has visited the ER around 7 times over the last year, beginning with hospitalization due to crohn's, which he had not been diagnosed with yet, salmonella poisoning, ulcers in his lungs, etc. Each time he visited the hospital, it became harder and harder for us to convince them to seek actual treatment.
Last week during his visit, they told him he needed an MRI. They would not write him a referral for an MRI, in fact told him that they "can't" even do that. Said he needs to see an orthopedic doctor who would have to write the MRI referral, all they can do is give him flexeril. He called the ortho office, they will not see him without a referral from the ER. Calls back to the ER, they won't write him a referral to ortho office. a few days later, he was able to get to the GP doctor's office, the NP there would not write a referral for an MRI without a diagnosis. She would not diagnose him. He explained to the office that in order for anyone at the hospital to see him, he needs an MRI. They escorted him out of the office for being stubborn. his follow-up PT appointment had to be rescheduled. Even though she's willing to see him over the next few weeks, she's very worried about his condition and is reluctant to have him do any actual PT.
In the meantime his condition is worsening. He has on/off numbness in his limbs, can barely stand, can't sleep. The pain is constant. Walking, laying down, standing, sitting, it does not change. We just don't know what to do, or how to make anyone care. I'm scared of permanent damage.
Friend, A, is 27. When he was approximately 4 years old he was "rough housed" (probably beaten) by an adult, and had a broken spine in several places. The extent of the injury is not known to him, but due to it he has partially limited mobility of his upper back and shoulders (he can't lift his arms beyond perpendicular to the ground, for example). He has crohn's disease, but is not currently on treatment. He is also overweight, unemployed, and spends a lot of time in his room. He has health insurance through VA's expanded Medicaid.
About 2 weeks ago he started having severe back pain in his lower back. Couldn't get in to see a physician, but through a telehealth appointment got a referral to a physical therapist. By the time his PT appt came around, his pain had worsened, and was stinging to the touch. The physical therapist was worried that it could be ulcers from Crohn's, a spinal cord infection, or a previous fracture that re-broke, but said it was most likely a herniated disc, and told him to go to the ER. The ER did nothing. He has visited the ER around 7 times over the last year, beginning with hospitalization due to crohn's, which he had not been diagnosed with yet, salmonella poisoning, ulcers in his lungs, etc. Each time he visited the hospital, it became harder and harder for us to convince them to seek actual treatment.
Last week during his visit, they told him he needed an MRI. They would not write him a referral for an MRI, in fact told him that they "can't" even do that. Said he needs to see an orthopedic doctor who would have to write the MRI referral, all they can do is give him flexeril. He called the ortho office, they will not see him without a referral from the ER. Calls back to the ER, they won't write him a referral to ortho office. a few days later, he was able to get to the GP doctor's office, the NP there would not write a referral for an MRI without a diagnosis. She would not diagnose him. He explained to the office that in order for anyone at the hospital to see him, he needs an MRI. They escorted him out of the office for being stubborn. his follow-up PT appointment had to be rescheduled. Even though she's willing to see him over the next few weeks, she's very worried about his condition and is reluctant to have him do any actual PT.
In the meantime his condition is worsening. He has on/off numbness in his limbs, can barely stand, can't sleep. The pain is constant. Walking, laying down, standing, sitting, it does not change. We just don't know what to do, or how to make anyone care. I'm scared of permanent damage.
If your friend is anywhere near Wilmington, NC contact Dr. Boyd at Cape Fear Sports Medicine and see if they can help. It's not a mega group practice and was really responsive when I needed knee surgery.
posted by mightshould at 2:38 PM on September 5, 2020
posted by mightshould at 2:38 PM on September 5, 2020
Next time a medical practitioner refuses to refer him, get him to ask them to write on his file that they are refusing to refer him. I am not in America but I'm told this gets things moving a surprising amount of the time.
posted by HypotheticalWoman at 5:55 PM on September 5, 2020 [3 favorites]
posted by HypotheticalWoman at 5:55 PM on September 5, 2020 [3 favorites]
“Saddle numbness” and trouble urinating or passing feces are symptoms that should get you immediate attention, if they occur.
posted by RobotVoodooPower at 8:34 PM on September 5, 2020 [2 favorites]
posted by RobotVoodooPower at 8:34 PM on September 5, 2020 [2 favorites]
It sounds like he needs a patient advocate or a care coordinator. In normal times of suggest someone going with him to advocate, but that's likely not possible.
Another option would be to drive to a hospital system that's unfamiliar to him to attempt a full work up that way.
It may help if you call providers with him on the phone, explain that you are witnessing a physical change and are very concerned and have them explain to you what the next steps are to get further evaluation. And/or stay on the phone with him while he's being examined /discharged etc so you can advocate for him to ensure he is getting what he needs.
posted by AlexiaSky at 2:26 AM on September 6, 2020
Another option would be to drive to a hospital system that's unfamiliar to him to attempt a full work up that way.
It may help if you call providers with him on the phone, explain that you are witnessing a physical change and are very concerned and have them explain to you what the next steps are to get further evaluation. And/or stay on the phone with him while he's being examined /discharged etc so you can advocate for him to ensure he is getting what he needs.
posted by AlexiaSky at 2:26 AM on September 6, 2020
If he has Crohn's, another possibility is enteropathic arthritis, which can especially affect the lower back.
posted by hydropsyche at 2:59 PM on September 6, 2020
posted by hydropsyche at 2:59 PM on September 6, 2020
There seems to be a problem here at the GP's office, in my opinion.
I just had lower-back surgery for severe ruptures and herniations last March. I wouldn't have been able to manage more than a few weeks without treatment. So I feel for your friend.
His GP's office needs to take responsibility for the next steps here. If he is seeing a NP and not an MD/DO, he needs to book an appointment to see an MD/DO and insist that they refer him to someone. If he is being told by specialists that he needs an MRI, he needs that MRI.
Good luck.
posted by yellowcandy at 10:24 PM on September 6, 2020
I just had lower-back surgery for severe ruptures and herniations last March. I wouldn't have been able to manage more than a few weeks without treatment. So I feel for your friend.
His GP's office needs to take responsibility for the next steps here. If he is seeing a NP and not an MD/DO, he needs to book an appointment to see an MD/DO and insist that they refer him to someone. If he is being told by specialists that he needs an MRI, he needs that MRI.
Good luck.
posted by yellowcandy at 10:24 PM on September 6, 2020
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"he was able to get to the GP doctor's office, the NP there would not write a referral for an MRI without a diagnosis. She would not diagnose him."
What was the diagnosis code on his paperwork from his last trip to the ER for back pain and limb numbness?
What was her diagnostic code for that office visit?
She must have submitted something to Medicaid. She should be able to diagnose him with something warranting imaging and further testing based on his symptoms, although she cannot determine if he has a herniated disc from an office visit. It might be worth complaining to the director of that family medicine practice as well.
It might also be worth calling Medicaid customer service in his state, explaining this quandary and asking them how he can get an MRI and a visit to an orthopedic doctor authorized. They may even have a regulation in writing that you can take to his doctor's office and cite if necessary.
It sucks that this is happening to him, and you are right to be concerned if he is having nerve symptoms like his limbs going numb.
posted by zdravo at 2:37 PM on September 5, 2020 [1 favorite]