So mom's Oncologist wants her to have an MRI and PET scan. We scheduled the MRI for today and mom got about 5 minutes thru before having a panic attack. She is claustrophobic and has never had an MRI before so we didn't know what to expect. She was prepared for a little discomfort/anxiety, but then they put this helmet around her head, stuck her head in and BAM instant panic attack. Needless to say the scan was a bust.
We have the PET scan scheduled for next Wednesday, but at this point I don't think that will happen.
I'm actually quite angry because we communicated her claustrophobia/anxiety to the oncologist and her staff, as well as indicated Yes on the form at the imaging center. I don't feel like we were heard AT ALL and now mom went thru a trauma that was completely unnecessary.
My understanding is that these scans are important (mom was just diagnosed in December so just getting started) and that there will be several others throughout the course of her treatment. I'd love to hear from anyone who has any advice on how to get thru these scans with this issue! One of the techs today mentioned knocking her out, which sounds like the best/only option. Any other details about MRI/PET scans that you think we should also know would be appreciated. I'm trying to make decisions to set her up for success, but that is terribly difficult not knowing everything about each scans process!
UPDATE: spoke with mom's oncology office (the nurse). They apparently don't order MRI/PET scans with sedation/twilight. It's considered inpatient??? I'm frustrated because one Google search shows that it's very common to have these issues and have the sedation/twilight option. I even asked about an open MRI and got something to the effect of "hmmmm I'm sure there are some in Atlanta but I'm not certain". As of right now we are foregoing the MRI/PET and switching to a CT scan for both. She had a CT scan back in December for her plural effusion, but it only lasted a few minutes since it was localized to her chest. Since the MRI/PET was supposed to cover Head/Brain to Mid Thigh, we really aren't sure how she will do. Also, we aren't sure if Medicare will approve another CT since she had one last month. ARGH!!!!!
Thanks!
Deanna <3
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George5545
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I am claustrophobic and take Ativan before all mri and scans. It makes a big difference. Also I ask for a towel over my eyes en case they open. Tell your Mum to go through the alphabet and each time through use a different object. Example: girls names that start with each letter of the alphabet. The boys names,cities, colours, fruit, vegetables. It has helped me pass the time and not panic. I didn’t take my Ativan early enough once and I had to stop. I was crying and couldn’t breath. They let me take another Ativan and just let the next person go. I hope some of this will help.
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Wow Sarcie, your coping tools are good! I don’t have claustrophobia but I like your anxiety management technique with the alphabet. I will remember that. Yet another reason I appreciate this board. Thank you.
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Thank you. When you are grasping to remain calm it’s amazing what a little thing like that can do to help.
Thank you both for the input. They gave her Xanax to try. Since she’s never had it we opted to give it a go during her bone density scan. Something she’s had before and we knew she could tolerate. I asked her today if she felt it would have helped and she said absolutely not. Besides, they only gave us one pill. Additionally she has a herniated disk in her lower back so she need some type of pain med if she is going to lay on her back for any length of time. The oncologist gave her Lortab. My understanding is that you shouldn’t mix pain meds with anti anxiety meds. Is that right? If that’s the case, we would be forced to choose between being in pain or having a panic attack?
I take pain meds and the Ativan. In fact, due to a panic attack during radiation on my neck (had to be fastened to the table with a mask ) they told me to take more of both. I was in a lot of pain from my hip and back plus the panic attack. They let me take them and once they both kicked in we then did the radiation treatment. Make them give your Mum both b
I have taken xanax for years way before it was even considered a controlled substance. I have been on it for over 20 years now and the doctors say it is not even worth the the time for them to try and wean me off. They said it would take 1/2 time the I was on it to try and get me off. Now, it is more of a maintenance drug. I went through withdrawal once when I had no idea how dangerous that was and I was terrified. But I have been given opiate medication many times while on xanax although my body must have built up a resistance to xanax but my body needs it now.
Obviously, as long as not driving or operating machinery and/or drinking, it should be fine. I know many people who have been on anxiety drugs and during some periods have been been prescribed opiate pain meds. The doctors would not offer it to you mom and the pain meds if it were dangerous with the xanax.
I also am having severe lower back pain (they found two holes) so since I said no to MRI, I have a CT scan next week of my back.
Hi George5545,
First, thank you for looking out for your Mom...You're a gem of a son!
Second, I too have extreme claustrophobia related to/caused by scans (caused by...i.e. never had it until a bad scan experience, like your Mom's).
I have a prescription for generic Xanax for this purpose. I take 100 micrograms(?) one hour prior to being on the machine (the techs/nurses are all familiar with timing..the drug peaks at 60 minutes) and then I carry one in my sweaty fist when I go in, so that I can stuff it under my tongue as needed (under tongue/"sub-lingual" is fast acting, i.e. about 10 minutes, by psychologically it takes effect almost immediately).
The dose is based on weight, so she might want to consult. For me (about 125 pounds) they said 3-4 .25 mg pills. I erred higher and was glad. No ill-effects and it wore off pretty quickly.
Early on in my bout with claustrophobia, I had to take one pill (0.25) just to get to the scan via taxi. But it wears off beginning one hour in, so timing is key. i would write down what I wanted to take, when. It helped, because I was usually so stressed that I couldn't think clearly. But it's important to consult with the techs/nurses so that they let you know when you're 60 minutes from being in the machine...
It also helped me to explain to every medical person along the way that I was claustrophobic/a crazy lady. They were almost without exception understanding and compassionate about this. Also, I bring a fistful of tissues in to the machine since I also cry a lot from the stress.
Another note: I bring/wear the most loose/comfortable outfit..like PJ's...because the claustrophobia makes me feel hot and panicked while I'm waiting. No socks. Before I figured this out, I'd find myself crawling out of the machine, tearing off my socks, etc. Probably no warm blanket. Just a sheet.
Also, I bring/wear a dark eye mask with velcro straps. Metal will be taken away. Without it, I could discern by the light when I was inside vs. outside the machine. This prevented me from convincing myself that I was NOT inside that little tunnel!
I can't believe I'm writing this but the scans have become a non-event, almost pleasant. I am definitely tripping out during which, for me, is enjoyable. This has alleviated (but not quite eliminated) my related claustrophobia re: driving through tunnels, being on airplanes (white plastic walls look similar to scan machines), etc. I'll caution you that your mom might experience claustrophobia in other venues as a result of the traumatic event. So a prescription to deal with that might be advisable. Until she is confident that she wont have a panic attack like on a plane, so I'd suggest she carry her prescription. To this day, I can't drive through a tunnel. But I can be driven through one (e.g. Uber/taxi).
Best of luck to you both...I do think there are some things you can do to overcome this very real, very horrible issue.
Bless you Lynn! I'm so sorry to hear about your experiences. And thank you for you reply!
Mom has definitely experienced problems in the past: exam rooms with the door closed, airplanes full of people standing waiting to get off and even elevators. It has never been a real problem and is usually something we can avoid/control, so we've been aware, but it's never been an issue like it was today. If there is a catastrophic trigger for her, today we found it! I will admit there was some confusion with her onc's office about what we were asking for. I left two voice messages explaining our concerns, both about claustrophobia/anxiety and the pain in her back. Both messages got watered down to the doc to just anxiety - as I'm sure that is the most common issue. That is how she got the one Xanax. After trying it out and figuring out that it wouldn't do anything for her pain ( as neither of us have ever had it) we opted to focus on that, since she had never had an MRI and we thought pain would be the bigger issue. However, knowing that claustrophobia/anxiety was an issue in play, I'm terribly disappointed in the oncologists office that they couldn't at least explain that a helmet was involved in the brain scan. I understand that there are multiple versions of MRI machines and even though they are affiliated with the hospital they sent us to, and they might not have know the small diameter of the hole, but they could have at least alerted us to the fact that she would be wearing a helmet.
Following your micro gram prescription for Xanax, they gave mom 0.5 milligram which would equal 500 micro gram. She did feel the effects but not enough to be unconcerned with what was happening. In fact she really didn't like the way she felt on it. Perhaps it's something that should be well in her system before just taking and going to a scan? Instead of just one pill?
As we are just starting on this journey, it had never occurred to me to consult the outpatient imagining at the hospital as to her anxiety/pain - other than checking off YES to the claustrophobia question. I will be discussing it with the imaging center we are schedule with for the CT scans and with anyone who will listen after that. I had thought that discussing it with the oncologists office would be enough but apparently not.
Very interesting about the under the tongue method. Is that a sneak or do the techs know? As I said, they only gave us one pill and we did a litmus test with it, so we didn't have any others.
As far as comfy clothes, they made her change into pants and a top and gave her warmed blankets. Not sure if her own comfy PJs would have made the grade. Granted, we are going to a different location (affiliated with the hospital but off campus) for the CT scan so I will encourage Mom to wear PJs.
I will also talk to mom about the eye mask, but my initial reaction is that it will make her claustrophobia worse. Her issue is not being able to see out: out of a doctors office with no windows, out of an airplane blocked by people standing, out of elevators (no windows), out of the helmet they gave her today. I never saw the helmet, but I can't imagine it making any ones claustrophobia better.
I hope we can get to a place where you are. Today was a trauma that should not have happened. You should never have to choose between your mental health and any other health. Any anxiety and trauma she experienced today did nothing to abate her cancer. Her oncologist has agreed to two CT scans to replace the MRI/PET scans, and we have them scheduled for the 29th. My understanding is that it will be the same location/machine where she had a chest CT in December (different than today's MRI). That went ok, so we are hopeful. I will definitely be having a conversation with that staff when I go to pick up her oral contrast to make sure they are aware of what is going on.
Once again, thank you for your insights. I truly appreciate your time!
A loving daughter (George is a much loved stuffed animal),
Deanna — since your mother didn’t like the way Xanax made her feel, perhaps a different medicine might be better? For example I can’t take Ativan because it makes me incredibly anxious which is the exact opposite result of its design! I use Xanax instead when necessary. Worth asking about. Good luck.
In response to your question, the spare .25 Xanax in my fist is known by all. I announce to the folks in the room, and behind the glass, that I'm claustrophobic and might need to take that extra one. I think they're used to dealing with this...Some mention that I'm not atypical and actually appreciate that I know, enact, and communicate what works for me. But the first time I had the issue, I was like a crazy lady, scrambling out of that machine! I said to the nurse "...but you must see this all the time?" and she said "No, actually, your the worst I've seen"! I was proud of this somehow, giving people something to talk about at happy hour, but I have a feeling your Mom is vying for my position! It will definitely get better if you are proactive (and it sounds like you are) and try out different solutions.
One note re: the eye mask....I know it sounds counter-intuitive, but this really is key for me. My panic is about being in the machine. When I'm first laid out, I close my eyes. I think the machine puts me in and out, to a degree. When I'm high on Xanax and have the eye mask on, I continually assure myself that I'm out...I don't put the mask on tightly, but I could not get through the scans without it....
Be well,
Lynn
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p.s. re: the "outfit"...as long as what she wears doesn't have metal, they should let her wear what she wants. I wear a cami -- without even the plastic things that allow you to adjust strap length, to avoid questions re; "is it metal". I bring light PJ pants and a tee shirt. I show it all to the person who works with me prior and I've never had a problem, at three different places. Sometimes I assure them that they'd rather deal with my high-maintenance prep than with my response to an issue. They seem convinced by this..
Xanax is a fasting-acting benzo. It works fairly quickly and leaves the body rather quickly also which is why they offered it to your mom when she got there. Klonopin takes longer to feel the calming affects and stays in your system longer which is why they gave your mom the xanax. I am claustrophobic but not to the point it totally affects my life. I can take the train (live in NY) but if we get stuck or have to stop in a tunnel (which happens quite often), I can feel myself panicking and I close my eyes and imagine I am outside in a large field. I also take elevators but if the elevator gets stuck (as it happened at a building I used to work in), I immediately went into extreme panic mode. I am glad there was no one else on the elevator bc I felt like I could not breathe.
I think even people who may not be claustrophobic would have a hard time with doing an enclosed MRI.
In the beginning (not sure it was an MRI or a bone density test) but I had to go to the hospital (first red sign but I was all new to this) and they laid me down on a table and wrapped me in a sheet, even my arms and my feet. My entire body from neck down, I was wrapped like a mummy. I was not expecting that. The tech told me it was because there had to be no movement at all otherwise they would not get a good picture. They gave me some ear plugs they said the machine would be loud. I laid under there for 45 minutes. I still don't know how I did it but maybe because I was not prepared for it or had time to think about it. But when I left there I was shaken and crying. Said to myself never again.
Ask whether or not they can prescribe anti-anxiety medication that you pick up at your local pharmacy, bring on the day of scan and get directions as to when she should take them. Before leaving home or when arriving at hospital for scan, etc. My sister just had an MRI and is a very anxious person by nature. She asked the doc, he sent over the prescription to her pharmacy she picked up the medication brought it with her to the scan, and took it while filing out the paperwork. It worked very well. There is absolutely no reason she should have to suffer. The scans are such an important part of the treatment plan and cannot imagine that the physicians would want to be without that information. If asking for a prescription before the scans does not pan out, Perhaps get her a new doctor. That is unacceptable.
I take Valium, request the largest machine, get ear plugs and a wash cloth over my eyes. I always close my eyes before going in, and I envision a trip to the beach. It is still not fun, but I get through it because I know it is crucial to my well being, hunting down those evil invaders.
I've had quite a few MRIs in my 15 years plus with MBC and discovered with the first one that I amn not claustraphobic, but am extemely sensative to noise! So I sure understand some of the "get me outta here" reaction. One of my friends, one of the most laid back people I know, could not get thru an MRI and that has alarmed me about having one! My husband got me industrial ear plugs and my onc wrote a prescription for an anti-anxiety med and told me to take one (under the tongue) an hour before the scan and a second one right before it, so I generally pop the second one under my tongue just before I walk into the room where the scan machine is. I'd not had an MRI since 2013 and had one again about two weeks ago and it was alot quieter than I remembered it being. I've met alot of us with mbc and a good number of us have trouble with the MRI! Ativan, Valium, Xanax all help many of us!
I take half a xanax before any scans and close my eyes so I don't feel stuck in a tube! I'm claustrophobic too.
Hi Deanna,
I'm so sorry to hear that your mum suffered a panic attack during the MRI scan. You're right that your concerns should have been properly addressed. If the doctors had listened then this unfortunate incident could have been avoided. Your mum must have felt very distressed and upset. I have had a PET CT scan and some MRI scans too. While I am not claustrophobic I did find it useful to wear an eye mask. Do you think that might help your mum too? If she can regulate her breathing and tries to relax and even sleep then that may help get her through the scans.
I hope you can find a workable solution that does not cause any further distress.
I have been terrified of mri. Just had another one Wednesday. I took 2 ativan(1mg each) an hour before. Headphones make me crazier so put ear plugs in and kept my eyes closed. The best machine is Siemens Aera. It takes an hour to get to it but it’s the only one I can handle. My back pain was so bad wed I could only do thoracic mri.
Radiation next week for four days.
My onc gave me Percocet for the pain but after the test was done so that was that.
Unfortunately these scans are part of mbc. The ct scans are easier to tolerate because they are like a donut. Had one today. The worst part was the tattoos for radiation markers- hurt like hell.
What type radiation? I am fighting with Cigna insurance right now to get coverage for the type of radiation recommended by my team of radiation oncologists and other disciplines at MD Anderson. Cigna is perfectly fine with damaging my colon with traditional radiation. 😡
Thanks for the advice about the ear plugs. I always took the earphones and listened to my favorite singers on Pandora. It is distracting because I also have to listen to commercials.
My onco asked me last visit if I thought I could do an MRI. I immediately said No based on the fact that she asked me and, like your Mom and most people, Some people can handle it, some like me, cannot. Earlier in my diagnosis, I went to have an MRI, had an idea of what the machine looked like and what was going to be involved, and assumed that I may be able to handle it until I got there and panicked and never even made an attempt. I was told there would be no sedation or twilight given but that I was allowed to take xanax or something to calm my nerves.
I have breast mets to my lungs and have only had CT scans since it covers that area. This time it was for my spine in which two holes were discovered for the breast cancer and the fact that I am feeling pain so my onco asked if I thought I could handle an MRI and I said no, so having a CT scan of my back.
It was not an unnecessary trauma. There must be a reason they wanted to do the MRI, like with me, but once you were there you saw what would be involved so you knew at that point. But your Mom was a trooper for at least trying. You should not be angry with the docs because they set one up for your mother. Or once there, your mom could have said No way, like I did.
When first diagnosed my breast surgeon ordered a Pet Scan but told me that Medicaid (NY) would most likely deny it and would only approve a CT scan. She told me not to worry and that a CT scan would work just as well really but the Pet scan gives a bit more info. Of course, Medicaid did not approve the Pet scan but did approve the CT scan and they found it anyway that it spread to my lungs.
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