1. < Spine Health

I don't understand my MRI spine imaging

Posted by sb4ca @sb4ca, Sep 13, 2023

I’ve recently had a big uptick in neck and upper shoulder pain and saw my surgeon. The very end of December I had my third ACDF so I’m accustomed to looking at MRI images but only the sagittal versions make sense to me. He ordered an MRI which was done end of last week and the images are now available on the portal. The actual body of the vertebrae where I had the ACDF, C3-4, now shows a very dark infiltration that I’ve never seen on any MRI. The area is considered hypo intense. Comparing to The MRI prior to that surgery there is a radiology note that new bone marrow edema was present in those same vertebrae. Now they are almost completely obliterated in the T1 mode. The portal also changed the date of the report availability by 4 days So yes I’m scared. I’m wondering if it’s infected since I had a revision surgery last year too for osteomyelitis with MRSA. I do have a primary immune deficiency. This is completely unexpected and I did get a hard lymph node on the left side of my neck. The surgeon said let’s see what shows in the MRI. God I just remembered that

Interested in more discussions like this? Go to the Spine Health Support Group.

sb4ca | @sb4ca | Sep 20, 2023
In reply to @bad2thebone "I had surgery to fuse where an artificial disc had been put in 4 years earlier...." + (show)
@bad2thebone

I had surgery to fuse where an artificial disc had been put in 4 years earlier. Doctor said new disc got loose and was breaking off bone fragments and he thought he had it all cleaned up. Sent me home on OxyContin. He knew it was bad. Had rods and screws put in and artificial disc stayed in also. Well it looks like something got into the spinal canal sack and dug into the arachnoid membrane that helps protect the nerves and now there is 5 lower levels filled with scar tissue.. there is nobody can fix or treat this because if they try to remove the scar tissue it only creates more. With all the surgery in that area I have been told I would only have a 50/50 chance of coming off of the operating table alive because there is no way to see the blood vessels. My pain doctor only reads radiologist report and I had to get him to look at Ortho doctors report to get him to understand I have the Arachnoiditis. He still says he is not sure. I saw the MRI at the Orthopedic doctors office and he showed me the difference on different levels of my spine. You could not miss this unless you were blind.
I am going to let him know he needs to go back and look at mine and maybe a lot others he has read to see how wrong he has been.

Jump to this post

Wow, what a story! If you have an infection there, why isn't your ortho treating it?

REPLY
sb4ca | @sb4ca | Sep 20, 2023

I want to add here that the MRI was done on a specific machine at the imaging center and used software to minimize artifacts from prior fusions. I now believe that is a big part of why the images look different. The report shows absolutely no detail, i.e., nothing about bone spurs I know are there from previous reports, nothing about any of the foramen, etc. IMO this seems like a huge tradeoff for this type of imaging. Here are two images- sagittal and axial images that look so odd.
REPLY
gently | @gently | Sep 20, 2023
In reply to @bad2thebone "I had surgery to fuse where an artificial disc had been put in 4 years earlier...." + (show)
@bad2thebone

I had surgery to fuse where an artificial disc had been put in 4 years earlier. Doctor said new disc got loose and was breaking off bone fragments and he thought he had it all cleaned up. Sent me home on OxyContin. He knew it was bad. Had rods and screws put in and artificial disc stayed in also. Well it looks like something got into the spinal canal sack and dug into the arachnoid membrane that helps protect the nerves and now there is 5 lower levels filled with scar tissue.. there is nobody can fix or treat this because if they try to remove the scar tissue it only creates more. With all the surgery in that area I have been told I would only have a 50/50 chance of coming off of the operating table alive because there is no way to see the blood vessels. My pain doctor only reads radiologist report and I had to get him to look at Ortho doctors report to get him to understand I have the Arachnoiditis. He still says he is not sure. I saw the MRI at the Orthopedic doctors office and he showed me the difference on different levels of my spine. You could not miss this unless you were blind.
I am going to let him know he needs to go back and look at mine and maybe a lot others he has read to see how wrong he has been.

Jump to this post

bad2thebone, I so appreciate the candor of your post. I wanted to cheer you on for your motivation to let the pain doctor know to save a lot of others. After reading Jennifer's response, I wonder what you will do.
I was convinced that the success rate of the artificial disc made it the best choice. Your caution and your interest in protecting others is very generous.
Thank you, again.
Gently

REPLY
bad2thebone | @bad2thebone | Sep 20, 2023
In reply to @jenniferhunter "@bad2thebone I would advise caution if you are going to point out mistakes to a doctor...." + (show)
@jenniferhunter

@bad2thebone I would advise caution if you are going to point out mistakes to a doctor. That may get some adverse comments put into your medical record and because records are shared between hospital systems on Epic, perhaps all your doctors will see it and it will reflect badly on you, the patient. A doctor does not have to accept you as their patient. You can fire a doctor and they can fire a patient. Anyone can make a mistake, but you also have to consider that doctors are entitled to their opinions because they are trained experts and most patients do not have their level of training and qualifications. They are licensed to provide a diagnosis and without those advanced medical degrees, a patient is not. Often doctors vary in their opinions anyway and interpretation of imaging can vary a lot depending on what they are looking for when they view it. It is much better to talk about it here and remain anonymous. It is better to have good relationships with physicians and that will lead to better and more accurate care for you. If you go down a rabbit hole with a disagreement, that can distract the provider from thinking about the right care for you. If you advocate for yourself by asking good questions, you'll get better responses from your providers.

I'll give you an example in my experience. 5 spine surgeons missed my correct diagnosis. All of them could read the MRI and see that there was a disc osteophyte complex pressing into my spinal cord, and I could understand the MRI and see that too because I have a biology degree and understand a lot about anatomy, but not the same degree of detail as a doctor learns. They missed my diagnosis because my symptoms didn't match their expectations from my imaging. I found cases like mine in medical literature, and with that information, I came to Mayo and had surgery with a surgeon who understood that type of "rare" case. I did later send that literature to one of the surgeons who missed it and I was kind. I did that to share information and let him know that I had successful surgery that resolved the problem which was the only way to prove that my symptoms were related to the correct diagnosis. I made sure that I only shared the knowledge from my surgeon and not my own opinion because I did not want to make any accusations. He is a smart enough guy and will understand that he missed it. I never heard from him after that and perhaps his people may not have given him my letter.

At first, I tried to get my other doctors at the same medical center to help me address this with the surgeon who had missed it, and no one would help because they would not challenge the opinion of a specialist who was a leader and directer of a spine center. Their advice to me was to seek another opinion elsewhere, and that is when I came to Mayo.

Jump to this post

I’ve not done anything wrong to make him mad I just pointed out ( in a nice way) that 2 orthopedic doctors have told me I have arachnoiditis and the persons reading the MRI missed it. I even brought him a disc of the MRI for him to see I was telling him the truth. Most MRI’s are looking for problems outside the spinal sack. Mine is in the spinal sack and this disease is rare. Nobody knows what to do to help. There is no cure.
Sometimes doctors don’t always share everything with their patients. They cover for their mistakes and others in the medical field. If they did not try to protect each other they could not afford to stay in business. They are human. Just like us we try to cover our mistakes rather than admit them.
I read on another post that a doctor nicked the spinal cord during surgery and never told the patient. Patient got to doctors surgery notes and found out this is why they have arachnoiditis.

REPLY
heisenberg34 | @heisenberg34 | Sep 21, 2023
In reply to @bad2thebone "I had surgery to fuse where an artificial disc had been put in 4 years earlier...." + (show)
@bad2thebone

I had surgery to fuse where an artificial disc had been put in 4 years earlier. Doctor said new disc got loose and was breaking off bone fragments and he thought he had it all cleaned up. Sent me home on OxyContin. He knew it was bad. Had rods and screws put in and artificial disc stayed in also. Well it looks like something got into the spinal canal sack and dug into the arachnoid membrane that helps protect the nerves and now there is 5 lower levels filled with scar tissue.. there is nobody can fix or treat this because if they try to remove the scar tissue it only creates more. With all the surgery in that area I have been told I would only have a 50/50 chance of coming off of the operating table alive because there is no way to see the blood vessels. My pain doctor only reads radiologist report and I had to get him to look at Ortho doctors report to get him to understand I have the Arachnoiditis. He still says he is not sure. I saw the MRI at the Orthopedic doctors office and he showed me the difference on different levels of my spine. You could not miss this unless you were blind.
I am going to let him know he needs to go back and look at mine and maybe a lot others he has read to see how wrong he has been.

Jump to this post

I can relate to your situation. I injured my lower back skiing a number of years ago. With meds I was feeling a whole lot better. But, I still had an occasional bad pain day. Was referred to an orthopedic surgeon. He had another MRI done ( I had two done previously). He told me that my L5 and S1 had been knocked out of alignment (spondylethesis). No previos reports showed this. He recommended fusion of the two vertebrae. What did I know (back then in 2017)? He was the expert. Surgery went fine, but provided no relief from the pain. If I had it to do all over again, I would not have that fusion done. I would insist on a second. maybe third radiologic interpretation done. My best advice: don't rush into anything. get second opinions.

REPLY
deedee12 | @deedee12 | Sep 21, 2023

I have had doctors that were not as detailed on MRIs and CT scans. I have always relied on ny doctor to go in detail with me the imaging. I have had 13 spinal surgeries and in the last 5 years have gone through revisions. What I found is my new doctors will state want was done correctly from the other doctor. But they also say what they would do differently. I feel the results are the dialog to dig into the issues and to be able to understand. There are many ways to result on our own, which can help with dialog with our doctors as long as we are letting them be the expert. While I would love to share my results (4 other opinions) with my surgeon that released me, I also do not want open a door that he is a bad surgeon. It really was my complex case needed a new doctor with more experience. Now I have found those doctors at Mayo Clinic. Sometimes it is best to move on to a more experience doctor to help us move closer to healing correctly.

REPLY
1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Sep 21, 2023
In reply to @deedee12 "I have had doctors that were not as detailed on MRIs and CT scans. I have..." + (show)
@deedee12

I have had doctors that were not as detailed on MRIs and CT scans. I have always relied on ny doctor to go in detail with me the imaging. I have had 13 spinal surgeries and in the last 5 years have gone through revisions. What I found is my new doctors will state want was done correctly from the other doctor. But they also say what they would do differently. I feel the results are the dialog to dig into the issues and to be able to understand. There are many ways to result on our own, which can help with dialog with our doctors as long as we are letting them be the expert. While I would love to share my results (4 other opinions) with my surgeon that released me, I also do not want open a door that he is a bad surgeon. It really was my complex case needed a new doctor with more experience. Now I have found those doctors at Mayo Clinic. Sometimes it is best to move on to a more experience doctor to help us move closer to healing correctly.

Jump to this post

@deedee12 Well said. You have to let them be the expert. My physical therapist also said this to me. As patients, we need doctors and surgeons. Where would we be without them?....Living with a lower quality of life from a condition or disability. Surgeons have a stressful job. When I am a patient, I want to make sure I am a good patient and not perceived as a threat and that I can advocate and participate in decision making about my care. Time is precious at consultation appointments and is best spent going forward rather than looking backward. I also had a complex case and that really needed a better surgeon who understood what was going on. It was in my best interest to just move on and be grateful that I had the option to do that, and I also found the surgeon I needed at Mayo Clinic. It really is why I am here on this forum sharing what I have learned in gratitude. The other surgeons have plenty of patients and don't really need me anyway.

REPLY
ga29 | @ga29 | Sep 22, 2023
In reply to @jenniferhunter "@bad2thebone I would advise caution if you are going to point out mistakes to a doctor...." + (show)
@jenniferhunter

@bad2thebone I would advise caution if you are going to point out mistakes to a doctor. That may get some adverse comments put into your medical record and because records are shared between hospital systems on Epic, perhaps all your doctors will see it and it will reflect badly on you, the patient. A doctor does not have to accept you as their patient. You can fire a doctor and they can fire a patient. Anyone can make a mistake, but you also have to consider that doctors are entitled to their opinions because they are trained experts and most patients do not have their level of training and qualifications. They are licensed to provide a diagnosis and without those advanced medical degrees, a patient is not. Often doctors vary in their opinions anyway and interpretation of imaging can vary a lot depending on what they are looking for when they view it. It is much better to talk about it here and remain anonymous. It is better to have good relationships with physicians and that will lead to better and more accurate care for you. If you go down a rabbit hole with a disagreement, that can distract the provider from thinking about the right care for you. If you advocate for yourself by asking good questions, you'll get better responses from your providers.

I'll give you an example in my experience. 5 spine surgeons missed my correct diagnosis. All of them could read the MRI and see that there was a disc osteophyte complex pressing into my spinal cord, and I could understand the MRI and see that too because I have a biology degree and understand a lot about anatomy, but not the same degree of detail as a doctor learns. They missed my diagnosis because my symptoms didn't match their expectations from my imaging. I found cases like mine in medical literature, and with that information, I came to Mayo and had surgery with a surgeon who understood that type of "rare" case. I did later send that literature to one of the surgeons who missed it and I was kind. I did that to share information and let him know that I had successful surgery that resolved the problem which was the only way to prove that my symptoms were related to the correct diagnosis. I made sure that I only shared the knowledge from my surgeon and not my own opinion because I did not want to make any accusations. He is a smart enough guy and will understand that he missed it. I never heard from him after that and perhaps his people may not have given him my letter.

At first, I tried to get my other doctors at the same medical center to help me address this with the surgeon who had missed it, and no one would help because they would not challenge the opinion of a specialist who was a leader and directer of a spine center. Their advice to me was to seek another opinion elsewhere, and that is when I came to Mayo.

Jump to this post

Thank you for your advice, Jennifer. I want to give my experience in putting comments into a doctor’s portal. My pain management doctor reduced my monthly meds back in January, cutting my monthly extended release meds, then accidentally cut my short term meds. His reasoning for the first- I was turning 70. He sent the wrong dosage in, Four times. My pharmacist even got involved. Finally got it right the next visit. Well, I complained through the portal to my primary doctor, asking him for a referral to a new doctor. That message now turns up in my portal for my surgeon! Yes, every doctor can now see my horror and complaint. My new doctor’s PA advice to me - don’t.

REPLY
View MoreView Less
Please sign in or register to post a reply.