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andilynn
@andilynn

Posts: 33
Joined: Oct 20, 2016

lymphoma remission. Lower back pain

Posted by @andilynn, Nov 13, 2016

I am in remission from Splenic Marginal Zone Lymphoma and had my last maintenance treatment with Rituxan two weeks ago. Since last fall I have been struggling with terrible low back pain and pressure all around the sacrum. This occurs at night in bed. My neurologist has ordered an MRI which has been denied by my insurance company. They require several weeks of rest and 6 weeks of physical therapy. I had over a year of rest and three weeks of physical therapy made me much worse, so we stopped. This week’s EMG showed severe irritation of the nerves coming out of the lower back. Just wondering if anyone else has issues like this and any advise. It’s so frustrating not to be able to treat something correctly because we can’t get an accurate diagnosis.

REPLY

How frustrating @andilynn to not be able to get the diagnostic imaging to help get to the bottom of the issue. I’d like to bring @katemn @predictable and @dawn_giacabazi into this conversation to see if they may have some thoughts about advocating for getting access to testing etc.
@sabtahis as someone with SMZL, might you have something to add?

Andilynn, do you have access to an occupational therapist? I wonder if an OT could help by assessing your mobility at home and making the daily routine a bit easier until you get the solution to the back issue.

Completely understand where your frustration is coming from. Sometimes when we have patients who need testing and they are denied we have the ordering physicians office call and get the authorization. We will also send in the physical therapy documentation. It may take alittle paper pushing but it should help push them to the correct outcome.

Good luck
Dawn

@colleenyoung

How frustrating @andilynn to not be able to get the diagnostic imaging to help get to the bottom of the issue. I’d like to bring @katemn @predictable and @dawn_giacabazi into this conversation to see if they may have some thoughts about advocating for getting access to testing etc.
@sabtahis as someone with SMZL, might you have something to add?

Andilynn, do you have access to an occupational therapist? I wonder if an OT could help by assessing your mobility at home and making the daily routine a bit easier until you get the solution to the back issue.

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Thank you Colleen. I am going to follow up with advise from this site.

Thank you Dawn. I’m going to check with my doctor to see if he can call the insurance agency.

@andilynn, what a tough situation to be in! I can only speak for myself .. but having to deal with a lot of medical issues for my husband ..I tend to not take no for an answer. If I was sitting in your shoes I would probably not only do what Dawn is suggesting which is great .. but ALSO get to a supervisor at the insurance company indicating all that paperwork that has been sent to them AND very clearly telling them they have no right to over ride medical advice from my doctor .. that I expect and demand that they approve the MRI ordered by my neurologist! Being my husband’s medical advocate I have had to play “hard ball” many times .. nice doesn’t always work .. I try that first .. then get tough. This is just me. Hope you get the help you need! Best to you! Katherine

Thank you for your reply Katherine. I am disappointed that my neurologist didn’t call my insurance company. They denied his request for the MRI back in March and again just recently. I haven’t received that notification, but his office told me it was denied. I’m calling the insurance company tomorrow. They’re pulling out of our area on December 31st, so I suspect they’re trying to put off procedures right and left.

Andilynn, INTERESTING that the insurance company is pulling out of your area! since it is already November .. I would STRONGLY urge you that if you do not get IMMEDIATE action .. that you tell the Supervisor you are contacting the local newspaper and television investigative reporters! That the press would just LOVE to get their teeth into how the “pulling out insurance companies” are delaying/denying insurance coverage as they are pulling out! THEN DO IT!! It is dollars out of your family budget and pain in your health. Be your own best advocate! You go girl! Katherine

@andilynn, my experience may not be pertinent to yours, but I thought it might, so here goes. I had lower back pain for several months, and I was examined by spine specialists, imaged out by MRI, and had physical therapy for weeks. To no avail. Back to my Internist for a talk. She speculated that I may have an inflammation in one of my sacroiliac joints, where the lower end of my spine connected to my pelvis. “How can we find out?” I asked. “There was nothing on the MRI to suggest it.”

“Sacroiliac inflammation isn’t diagnosed or confirmed with Xrays, CT scans, or MRIs,” she said. “We’ll have to inject an inflammatory medication directly into the sore joint and see if that takes care of it.” So we did, and it did. And it’s been three years now since I had a lower back pain. I had inflammation of one sacroiliac joint, confirmed when it went away after direct injection of an anti-inflammatory medication (the identity of which I don’t know). Even so, talk it over with your doctor and, if that proves fruitless, get a second opinion from another qualified medical professional.

@predictable

@andilynn, my experience may not be pertinent to yours, but I thought it might, so here goes. I had lower back pain for several months, and I was examined by spine specialists, imaged out by MRI, and had physical therapy for weeks. To no avail. Back to my Internist for a talk. She speculated that I may have an inflammation in one of my sacroiliac joints, where the lower end of my spine connected to my pelvis. “How can we find out?” I asked. “There was nothing on the MRI to suggest it.”

“Sacroiliac inflammation isn’t diagnosed or confirmed with Xrays, CT scans, or MRIs,” she said. “We’ll have to inject an inflammatory medication directly into the sore joint and see if that takes care of it.” So we did, and it did. And it’s been three years now since I had a lower back pain. I had inflammation of one sacroiliac joint, confirmed when it went away after direct injection of an anti-inflammatory medication (the identity of which I don’t know). Even so, talk it over with your doctor and, if that proves fruitless, get a second opinion from another qualified medical professional.

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Thank you For your reply Predictable. I will certainly talk about this with my neurologist. He did a trigger injection and I felt worse, but hopefully that isn’t the same thing you had. I learned this week that there was miscommunication between my doctor, my insurance company and me. My doctor is submitting another request for an MRI. If it’s approved this time, maybe I’ll get some answers regarding this sacral area pain.

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