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"Mass" on the spine. Can somebody tell me what to expect?


AimeeM
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We went and it didn't happen. Somebody forgot to note in the order that DH has ONE SINGLE phobia in life -- closed spaces. He's incredibly claustrophobic. Because they scheduled this after hours, and the machines are located at the outpatient facility there were no doctors on site (only techs), and nobody had ordered medication. He tried, but had a panic attack as soon as the bar lowered toward his chest and he found out that the MRI would last almost an hour. They had to reschedule -- and had zero openings until 10 days from now, even with the flag on the order.

Apparently, for our entire huge county hospital system, and our large private hospital system, they only have TWO open-air MRI machines for both. Period. That's it. 

 

We do have one privately-run imaging company that I happen to know has ONE open-air machine. I'm going to call them tomorrow. Because they are private, they were able to get my DD in very quickly (and hers had no emergency flag on it, even). There aren't any doctors on site, I don't believe, but his GP can call in a nice large dose of a sedative, which is what the techs tonight recommended anyway (having his GP call in a sedative, to move things along more quickly). DH doesn't want me to call, though, because he wants to stay within the local hospital system, since that's where any ongoing care would occur. This private company has their own radiologists, and I know he trusts our hospital radiologists more. 

Edited by AimeeM
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Oh that sucks that the order got botched and he didn't get the right machine/meds.  He is by far not alone in his fear of the closed machines.  I know many, many people who were not aware previously that they were claustrophobic who had to stop imaging because of panic.  Poor guy.  

 

Can he get on a cancellation list or similar?  

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This private company has their own radiologists, and I know he trusts our hospital radiologists more. 

 

I'm hesitant to give advice because my guess is things work somewhat differently depending on location, hospital chains and the individual doctor(s) involved, etc. But we've found that when it comes to specialists like surgeons and oncologists -- they tend to read MRIs themselves and simply see the radiologist's interpretation as another opinion. They go by their own. When DH has an MRI his oncologist wants him to go 24 hours before his appointment. He isn't concerned about a radiologist's report being ready before the appointment because he "reads" it himself. His surgeon was pretty much the same way.

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 DH doesn't want me to call, though, because he wants to stay within the local hospital system, since that's where any ongoing care would occur. 

 

What a fiasco about the scrip not being written for the meds! Well definitely you want the scan done sooner, rather than later. He can't know where his care will need to be long-term, because he doesn't know what the issue is yet. 

Edited by OhElizabeth
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Call the private place and see when they could schedule it.  If it's substantially sooner, someone call your dh's doctor and discuss the possibilities with them to see whether they prefer sooner or locally.  They might choose sooner.

 

As with a PP, when I've had MRI's done elsewhere (twice), the doctors at the hospital had their own radiologists interpret the findings from the film anyway.

 

There can also be a difference in machine capability, though I've no idea if open air machines differ since I'm not claustrophobic and haven't tried them.  His doctor should know if there's any difference in the machine vs what they want to see.

 

I'm sorry it didn't happen last night.  Y'all didn't need more stress.   :grouphug:

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I said before I'd call the dr if I could get into the other place substantially earlier.  As I've thought about it, I'd probably call anyway to be sure they were notified that the MRI didn't happen (and why).  If they were staying open for you before, he might be able to get that to happen again, with the right set up this time.

 

Just a thought.  And I'd still contact the private place to offer that as an option (assuming they had openings sooner).

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I found a place that hasn't even opened to the public yet (private imagining), but offers something called multi-position, specifically for claustrophobic patients -- and they offered to let him come in before they are technically open, and be a "body" for when they are teaching their MRI techs to use the new equipment. It might take a while longer, but nothing is over his face in this machine, and they will send the images straight to his doctors. The techs know what they're doing, but it may take 15 minutes longer because they're just learning the new controls on this particular machine-type. 

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It takes about 200,000 cells (?)--it's been a while since I thought about this--for something to show up on a MRI scan.  You can have more cancer than what is visible, which is sometimes why spectroscopy is used so that glucose uptake can be monitored in suspicious areas. (Cancer cells uptake more glucose than healthy cells.)  Given that you've already got a detectable mass on CT, though, this should give you a pretty good thumbs up/thumbs down on the point.  I would expect that he's also going to be biopsied, too, unless the MRI shows that he has something else going on that's pretty definitively not cancer.

 

If you're wanting more information at this point (and it's totally ok if you're not ready to go there yet), you might find this helpful:

https://www.cancer.org/cancer/brain-spinal-cord-tumors-adults/detection-diagnosis-staging/how-diagnosed.html

https://www.cancer.org/treatment/understanding-your-diagnosis/tests/testing-biopsy-and-cytology-specimens-for-cancer.html

 

and

proton therapy: http://www.proton-therapy.org/howit.htm--I don't think the map is totally up to date because I know of other centers not listed

v. 

traditional radiation therapy: https://www.cancer.org/cancer/brain-spinal-cord-tumors-adults/treating/radiation-therapy.html

 

and 

gamma knife/stereotactic surgery: https://www.mdanderson.org/treatment-options/stereotactic-radiosurgery.html

 

 

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I'm sorry. I don't mean to sound like an idiot :( What do you mean by the bolded?

It takes about 200,000 cells (?)--it's been a while since I thought about this--for something to show up on a MRI scan.  You can have more cancer than what is visible, which is sometimes why spectroscopy is used so that glucose uptake can be monitored in suspicious areas. (Cancer cells uptake more glucose than healthy cells.)  Given that you've already got a detectable mass on CT, though, this should give you a pretty good thumbs up/thumbs down on the point.  I would expect that he's also going to be biopsied, too, unless the MRI shows that he has something else going on that's pretty definitively not cancer.

 

If you're wanting more information at this point (and it's totally ok if you're not ready to go there yet), you might find this helpful:

https://www.cancer.org/cancer/brain-spinal-cord-tumors-adults/detection-diagnosis-staging/how-diagnosed.html

https://www.cancer.org/treatment/understanding-your-diagnosis/tests/testing-biopsy-and-cytology-specimens-for-cancer.html

 

and

proton therapy: http://www.proton-therapy.org/howit.htm--I don't think the map is totally up to date because I know of other centers not listed

v. 

traditional radiation therapy: https://www.cancer.org/cancer/brain-spinal-cord-tumors-adults/treating/radiation-therapy.html

 

and 

gamma knife/stereotactic surgery: https://www.mdanderson.org/treatment-options/stereotactic-radiosurgery.html

 

Edited by AimeeM
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I found a place that hasn't even opened to the public yet (private imagining), but offers something called multi-position, specifically for claustrophobic patients -- and they offered to let him come in before they are technically open, and be a "body" for when they are teaching their MRI techs to use the new equipment. It might take a while longer, but nothing is over his face in this machine, and they will send the images straight to his doctors. The techs know what they're doing, but it may take 15 minutes longer because they're just learning the new controls on this particular machine-type.

 

I'm so glad to hear you found a place that will work for your dh.

 

Still praying! :grouphug:

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I'm so glad to hear you found a place that will work for your dh.

 

Still praying! :grouphug:

 

It actually won't (work), unfortunately. They aren't able to do contrast, and the doctor needs contrast.

 

The doctors are working to get him an appointment asap, within our hospital system, to just be put under fully, with an anesthesiologist, I think. 

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I'm sorry. I don't mean to sound like an idiot :( What do you mean by the bolded?

 

You don't sound like an idiot at all. It's a ton of information I'm throwing at you, during a scary time.

 

The initial CT imagery gave the ER doctor an idea of size and placement.  Placement matters.  

 

Here's what little I know about spinal tumors: There are a few different types of spinal tumors--vertebral column ones (either primary or metastic), intramedullary (growing from inside the spinal column or along nerve paths)--neurofibromas and schwannomas fall in here, and intradural (outside of the nerves, but inside the dural membrane).  Statistically, most intradural and intramedullary tumors are benign.  That's not always the case, which is why there are often biopsies to confirm. The most common type of spinal tumor is a meningioma which is a type of intradural tumor.  They usually happen in middle aged people, and honestly, that's what I'm hoping for for you guys.....no nerve involvement, benign, easy to debulk and move on with life.  Vertebral column tumors are kinda sketchy. Primary ones are rare, and usually happen in younger people.  Metastic ones scare the heck out of me.  Usually it's mets from brain, lung, or breast/prostate cancer.  But, there are usually lots of masses involved, not one, so that makes me think this isn't what your dh is dealing with. The bloodwork that should've been ordered as part of this process should've given the doctor additional information.  The fact that he had chest pain going in makes me wonder about mediastinal tumors---that area between your spine/heart/trachea. They are rare, but he's the right age for it, and they are a bitch to deal with benign or not because they are ventral.

 

In any event, ER doctor knows size and placement from the CT scan which gave him some clue as to type. An MRI is going to give him better images & more of them because he can visualize this thing layer by layer after the imagery.  He will also be able to see whether blood vessels are feeding it.  Neuroradiologists know way more about this than I do, but they should be able to give you more information based on what they see in exact positioning, what they see in the images with contrast in terms of vascular supply to the mass, and how much that thing lights up on scans.  If you want to see what some MRI images look like google "MRI spinal tumor images". 

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It was on the spine, and behind the aorta. Does the placement behind the aorta mean anything significant?

 

The doctor seemed concerned. I guess that's what concerns me. I really hope it's the kind that can just be removed. He went in this time with radiating pain (radiating from his back and wrapping all the way around his ribs and front), but last time he went in it was with chest pains. 

 

 

You don't sound like an idiot at all. It's a ton of information I'm throwing at you, during a scary time.

 

The initial CT imagery gave the ER doctor an idea of size and placement.  Placement matters.  

 

Here's what little I know about spinal tumors: There are a few different types of spinal tumors--vertebral column ones (either primary or metastic), intramedullary (growing from inside the spinal column or along nerve paths)--neurofibromas and schwannomas fall in here, and intradural (outside of the nerves, but inside the dural membrane).  Statistically, most intradural and intramedullary tumors are benign.  That's not always the case, which is why there are often biopsies to confirm. The most common type of spinal tumor is a meningioma which is a type of intradural tumor.  They usually happen in middle aged people, and honestly, that's what I'm hoping for for you guys.....no nerve involvement, benign, easy to debulk and move on with life.  Vertebral column tumors are kinda sketchy. Primary ones are rare, and usually happen in younger people.  Metastic ones scare the heck out of me.  Usually it's mets from brain, lung, or breast/prostate cancer.  But, there are usually lots of masses involved, not one, so that makes me think this isn't what your dh is dealing with. The bloodwork that should've been ordered as part of this process should've given the doctor additional information.  The fact that he had chest pain going in makes me wonder about mediastinal tumors---that area between your spine/heart/trachea. They are rare, but he's the right age for it, and they are a bitch to deal with benign or not because they are ventral.

 

In any event, ER doctor knows size and placement from the CT scan which gave him some clue as to type. An MRI is going to give him better images & more of them because he can visualize this thing layer by layer after the imagery.  He will also be able to see whether blood vessels are feeding it.  Neuroradiologists know way more about this than I do, but they should be able to give you more information based on what they see in exact positioning, what they see in the images with contrast in terms of vascular supply to the mass, and how much that thing lights up on scans.  If you want to see what some MRI images look like google "MRI spinal tumor images". 

 

Edited by AimeeM
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It was on the spine, and behind the aorta. Does the placement behind the aorta mean anything significant?

 

The doctor seemed concerned. I guess that's what concerns me. I really hope it's the kind that can just be removed. He went in this time with radiating pain (radiating from his back and wrapping all the way around his ribs and front), but last time he went in it was with chest pains. 

 

Just adding my two cents ('cause that's all I have by comparison), they don't always remove tumors.  Sometimes removal is likely to cause more problems or risk than leaving them there, so they'll offer radiation to "kill them in place" and leave them.  It can work.  So far it has with mine... though mine isn't in the same area.  One is left with radiation side effects, but comparing it to the alternative (in my case, progression and death) those aren't too bad.

 

What you are hoping for is something benign and treatable.  They should give you treatment options once they know what they are dealing with and then you can choose.

 

ETA:  And hopefully your insurance also lets you choose.  There are times when those idiots feel they know the best option and insist upon it over a top recommendation.  I didn't have to deal with that (we're with health share), but there were others who did.

Edited by creekland
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It was on the spine, and behind the aorta. Does the placement behind the aorta mean anything significant?

 

The doctor seemed concerned. I guess that's what concerns me. I really hope it's the kind that can just be removed. He went in this time with radiating pain (radiating from his back and wrapping all the way around his ribs and front), but last time he went in it was with chest pains.

DH's mass was in front of his heart. Location of the mass wasn't significant except that he had complications with his lungs (pleural effusion). I wouldn't be especially scared about the location unless the doctor tells you otherwise.

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It was on the spine, and behind the aorta. Does the placement behind the aorta mean anything significant?

 

The doctor seemed concerned. I guess that's what concerns me. I really hope it's the kind that can just be removed. He went in this time with radiating pain (radiating from his back and wrapping all the way around his ribs and front), but last time he went in it was with chest pains.

DH's mass was in front of his heart. Location of the mass wasn't significant except that he had complications with his lungs (pleural effusion). I wouldn't be especially scared about the location unless the doctor tells you otherwise.

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