Twigs Posted October 31, 2017 Share Posted October 31, 2017 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Happy Camper Posted October 31, 2017 Share Posted October 31, 2017 Praying for your DH as he has the MRI, that they will get clear images. Praying for YOU as you wait. Waiting can be agony. As usual, the Hive has given great advice. I hope you get some answers soon, and that you have the support you need for whatever comes next. Quote Link to comment Share on other sites More sharing options...
Tap Posted October 31, 2017 Share Posted October 31, 2017 Thinking of you all today and hoping it turns out to be something minor (( :grouphug: )) Quote Link to comment Share on other sites More sharing options...
displace Posted October 31, 2017 Share Posted October 31, 2017 Praying for you! Quote Link to comment Share on other sites More sharing options...
Ali in OR Posted October 31, 2017 Share Posted October 31, 2017 Just seeing this...praying for the best possible outcome for you guys. Quote Link to comment Share on other sites More sharing options...
Katy Posted October 31, 2017 Share Posted October 31, 2017 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Stacia Posted October 31, 2017 Share Posted October 31, 2017 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Barb_ Posted October 31, 2017 Share Posted October 31, 2017 I'm sorry I have nothing to offer but I wanted to be sure to hear the outcome. I'll be thinking of you both. Quote Link to comment Share on other sites More sharing options...
Minerva Posted October 31, 2017 Share Posted October 31, 2017 :grouphug: Quote Link to comment Share on other sites More sharing options...
Kareni Posted October 31, 2017 Share Posted October 31, 2017 Sending good thoughts. Regards, Kareni Quote Link to comment Share on other sites More sharing options...
AimeeM Posted October 31, 2017 Author Share Posted October 31, 2017 (edited) 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 October 31, 2017 by AimeeM Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted October 31, 2017 Share Posted October 31, 2017 Hugs Quote Link to comment Share on other sites More sharing options...
Monica_in_Switzerland Posted October 31, 2017 Share Posted October 31, 2017 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? Quote Link to comment Share on other sites More sharing options...
Pawz4me Posted October 31, 2017 Share Posted October 31, 2017 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. 9 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted October 31, 2017 Share Posted October 31, 2017 (edited) 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 October 31, 2017 by OhElizabeth Quote Link to comment Share on other sites More sharing options...
displace Posted October 31, 2017 Share Posted October 31, 2017 (Hugs) I tend to agree with your DH about getting the MRI done at your hospital where he's already a patient. 1 Quote Link to comment Share on other sites More sharing options...
creekland Posted October 31, 2017 Share Posted October 31, 2017 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: 3 Quote Link to comment Share on other sites More sharing options...
Vintage81 Posted October 31, 2017 Share Posted October 31, 2017 :grouphug: Quote Link to comment Share on other sites More sharing options...
SparklyUnicorn Posted October 31, 2017 Share Posted October 31, 2017 :grouphug: Quote Link to comment Share on other sites More sharing options...
EKS Posted October 31, 2017 Share Posted October 31, 2017 :grouphug: Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted October 31, 2017 Share Posted October 31, 2017 (edited) I would schedule it and walk away with the disk of images to have it read by his preferred radiologist. --- Edited October 31, 2017 by kbeal 2 Quote Link to comment Share on other sites More sharing options...
goldberry Posted October 31, 2017 Share Posted October 31, 2017 I'm agreeing with others that I would not wait. Do whatever is necessary to get in sooner, even if it means the private place. Or get on a waiting list for cancellations and then call every single day to check if there is one. Nag them. Quote Link to comment Share on other sites More sharing options...
creekland Posted October 31, 2017 Share Posted October 31, 2017 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). 5 Quote Link to comment Share on other sites More sharing options...
AimeeM Posted October 31, 2017 Author Share Posted October 31, 2017 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. 26 Quote Link to comment Share on other sites More sharing options...
AimeeM Posted October 31, 2017 Author Share Posted October 31, 2017 Will an MRI be able to tell if it's malignant? Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted October 31, 2017 Share Posted October 31, 2017 (edited) Generally, yes. The malignant parts will be brighter on the scan. ETA: They should also be able to pick up the blood supply to the mass (if there is one) when they use the contrast. Edited October 31, 2017 by kbeal Quote Link to comment Share on other sites More sharing options...
Liz CA Posted October 31, 2017 Share Posted October 31, 2017 Will an MRI be able to tell if it's malignant? Don't think so unless they can infer that if they see metastases. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted October 31, 2017 Share Posted October 31, 2017 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 Quote Link to comment Share on other sites More sharing options...
Katy Posted October 31, 2017 Share Posted October 31, 2017 Have the doctor prescribe valium or something anyway. 3 Quote Link to comment Share on other sites More sharing options...
AimeeM Posted October 31, 2017 Author Share Posted October 31, 2017 (edited) 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 October 31, 2017 by AimeeM Quote Link to comment Share on other sites More sharing options...
Catwoman Posted October 31, 2017 Share Posted October 31, 2017 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: Quote Link to comment Share on other sites More sharing options...
AimeeM Posted October 31, 2017 Author Share Posted October 31, 2017 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. 6 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted October 31, 2017 Share Posted October 31, 2017 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". 5 Quote Link to comment Share on other sites More sharing options...
AimeeM Posted October 31, 2017 Author Share Posted October 31, 2017 (edited) 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 October 31, 2017 by AimeeM Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted October 31, 2017 Share Posted October 31, 2017 Behind the aorta makes me think posterior mediastinal mass. Let me see if I can dig up some info on you. I only know what little I know about them from the year I spent reading neuro-oncology textbooks while dd was so sick. Quote Link to comment Share on other sites More sharing options...
creekland Posted October 31, 2017 Share Posted October 31, 2017 (edited) 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 October 31, 2017 by creekland 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted November 1, 2017 Share Posted November 1, 2017 Hugs Hugs Waiting is awful Quote Link to comment Share on other sites More sharing options...
alisoncooks Posted November 1, 2017 Share Posted November 1, 2017 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. Quote Link to comment Share on other sites More sharing options...
alisoncooks Posted November 1, 2017 Share Posted November 1, 2017 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. Quote Link to comment Share on other sites More sharing options...
Selkie Posted November 1, 2017 Share Posted November 1, 2017 Thinking of you today, and hoping your dh was able to get the MRI. :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
displace Posted November 2, 2017 Share Posted November 2, 2017 Thinking of you! Quote Link to comment Share on other sites More sharing options...
trulycrabby Posted November 2, 2017 Share Posted November 2, 2017 :grouphug: Quote Link to comment Share on other sites More sharing options...
Another Lynn Posted November 2, 2017 Share Posted November 2, 2017 :grouphug: Quote Link to comment Share on other sites More sharing options...
Catwoman Posted November 2, 2017 Share Posted November 2, 2017 Just checking for an update and hoping that your dh is okay. :grouphug: Quote Link to comment Share on other sites More sharing options...
kahlanne Posted November 2, 2017 Share Posted November 2, 2017 Sending many good thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
Eagle Posted November 2, 2017 Share Posted November 2, 2017 :grouphug: Thinking of you Quote Link to comment Share on other sites More sharing options...
Zoo Keeper Posted November 3, 2017 Share Posted November 3, 2017 Praying for you. :grouphug: Quote Link to comment Share on other sites More sharing options...
Okra Posted November 3, 2017 Share Posted November 3, 2017 Hugs. Update whenever you feel you can. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted November 4, 2017 Share Posted November 4, 2017 Hoping for the best and thinking of you. Quote Link to comment Share on other sites More sharing options...
mysticmomma Posted November 4, 2017 Share Posted November 4, 2017 :hugs: thinking of you. Quote Link to comment Share on other sites More sharing options...
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