Need MRI for diagnosis but allergic to gadolinium

[farmgirl]

Hi Folks,

I may be joining your ranks.  Not sure yet.  I'm scheduled to have an MRI on Monday to confirm suspicion of AN but I've had a reaction to gadolinium in the past. (rash on arms and legs 24 hours after exposure, resolved with benadryl) 

I'm wondering how someone like me can go through diagnosis, treatment and follow up without contrast?  It seems as though imaging is extremely important with this condition.
 
- If I can't have gadolinium can I still be treated with radiation rather than open skull surgery?

- Are there more accurate MRI machines or setting protocols that might improve images without contrast?

- How do you get access the radiologist to ask questions when the only lines of communication seem to be between him and the otologist?

Thanks,

Farmgirl 

 

[arizonajack]

MRIs can be done without contrast with some success but contrast is the best way.

There are alternatives to Gadolinium. See:

https://en.wikipedia.org/wiki/MRI_contrast_agent#Gadolinium

You can still have radiation treatment in spite of a Gadolinium allergy because the radiation treatment, Gamma Knife for example, uses Cobalt 60 to kill the tumor.  See:

https://en.wikipedia.org/wiki/Radiosurgery#Gamma_Knife

As for reaching your radiologist, I have no clue.

[farmgirl]

Thanks!

I understand that GK and CK don't use gadolinium. 

My question is, since GK and CK require very accurate images of the tumor, will they be able to get the information needed without the superior quality of MRI w contrast to place and dose the radiation correctly.

[ppearl214]

Hi Farmgirl and welcome.

I had CK over 9 years ago. Please know that they utilize MRI guidance while doing the radiation treatment.  They did the MRI immediately prior to my treatment and used it to hone in on my little bugger.  Over 9 years later, it worked.

I hope this helps... and again, welcome!
Phyl

[arizonajack]

Thanks!

I understand that GK and CK don't use gadolinium. 

My question is, since GK and CK require very accurate images of the tumor, will they be able to get the information needed without the superior quality of MRI w contrast to place and dose the radiation correctly.

Forgot about that. Yes, they use the contrast during the procedure.

Talk to your doctor about possible alternatives to gadolinium.

If alternative contrast isn't practical a 24 hour rash is small price to pay for effective treatment without invasive surgery.

[LakeErie]

There are pre-procedure steps you can take. I have an allergy to the dye used for some CT scans I need regularly and the ordering doctor's staff sends Rx to my pharmacy for prednisone and benadryl to be taken hours apart starting the night before the scans. I have never had another allergic reaction to the dye since taking the precaution.
Hope same is true for you.

[farmgirl]

Hi,

Arizonajack thanks for the info. You too ppear214! 

I want to talk about these details before going in for the MRI but I can't get my doctor on the phone.  How do you folks manage the gatekeepers?  Should I just schedule another appointment to talk about the gad issue with my otologist?  or Once I have insurance approval for the MRI should I show up at the hospital and ask to talk to the radiologist?

best,
farmgirl

[farmgirl]

Hi LakeErie,

This was very helpful.  I just left a message on otologist's scheduler's voice mail basically repeating what you wrote.  I'm feeling like an empowered patient already!

Thanks,
farmgirl

[PaulW]

Newer MRI machines can clearly see the tumour without gadolinium dyes. However they will not be able to determine what sort of tumour it is with out the dye. Quite a few people get the rash, and sometimes they get the dye again. So talk to the diagnostic centre and doctors.
They do not need images with the dye to perform radiation. They can do the planning with out it.
Without the dye the images will not be as accurate, but by adding a safety margin in the radiation planning they can get around this problem very easily. You should get scanned in a 3 Tesla machine or above, to get the best images, and to reduce the need for the dye. Most larger cities would have a 3T MRI machine

[farmgirl]

Hi PaulW!

Thanks for this information!  Did you come by your knowledge of this topic from personal experience or are you just medically astute?

I'm not sure but I think I may be going into a 3T machine...I told the scheduler of the importance of accuracy since I'm not getting gad.  I also told her I'm claustrophobic and need to be sedated.  So she scheduled me for a machine with the more powerful magnet and said it is slightly less confining than their other machine.  Could this be a 3T?
I really hope they get a good reading.  The loud low hum of the tinnitus and the asymmetrical hearing loss is driving me nuts.  I can't wait to know what's going on - even if it is hard news.

Again, thanks for your thoughtful and informative answer,

farmgirl

ps:  could I read about your AN story here on the site?  I'd like to know where you were treated 

[PaulW]

Went looking for my AN story on this site and couldn't find the whole thing....

Brief story.

Lost a chunk of hearing suddenly....
Already knew it could be an Acoustic Neuroma

Got CT Scan then MRI.....
Ripped open the packet myself to read what I had sort of expected... 10mm x 5mm x 5mm Acoustic Neuroma

Wasn't liking Watch and Wait, because my hearing was noticeably getting worse every few days and I wanted to save my hearing.
I figured rightfully or wrongly that the sooner I had the AN treated the better chance I would keep my hearing.
Ended up getting Cyberknife in Munich Germany 3 weeks after being diagnosed.

I live in Australia and in 2010 there was no Gamma Knife or Cyberknife machine. I was not comfortable with the general purpose LINAC's that were available in Australia. Hearing preservation results from these machines was not as good as GK or CK

So flew from small town Australia by myself, to London, and Munich Germany...
Left Saturday Lunchtime... arrived 32 hours later...

Monday AM... Met with Neurosurgeon Dr Muacevic
High Definition CT Scan done for dose planning.. Mask made..

Tuesday 10:00 AM
35 minutes under the Cyberknife... Single Session
All done in just over an hour......
Went to a german bar for lunch and had a hearty German Meal... I did skip the beer....

Wednesday
Next day I was pretty dizzy, but went wandering around Munich doing the sites, and flew out that night back to Australia.

Arrived back friday morning....... and went back to work for 2 hours friday morning...

Made it sound easy....... Well there were a few problems with balance, hearing and tinnitus post radiation. Balance and Tinnitus are all good now.

Currently my AN is stable.
I have really no real problems

After 5 years I have lost some of my hearing... However low frequencies I test as normal..
High frequencies I have lost a bit...
I have started wearing a hearing aid, which is really helping in noisy environments.. restaurants, bars, loud social gatherings.
I don't notice any loss in quiet environments.

Very happy with the result

[farmgirl]

Thank you PaulW!  If the MRI shows AN - I hope I can have CK too and be able to tell a similar story!

best to you!
farmgirl