Gadolinium contrast dye

Hi fellow travellers on this AVM journey.
I am now coming up to two years post Gamma Knife and due for my two year MRI scan.
I am quite concerned about the contrast dye which they use, Gadolinium,
the last time I had this type of scan with this contrast I had two focal seizures about 25minutes afterwards. The seizures lasted about 25 minutes each and were 15 minutes apart.
I been referred to the allergy department of the JRH Oxford but as yet have not had an appointment.
In the meantime I thought would ask you all if any of you have had a similar experience. I have previously had an angiogram which uses a different dye without problems.
Keep well and stay strong.
Micko

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@micko

Good to hear from you. There are a few of us who have trouble with the contrast material. The one who is always in my mind is @Angela4

I found I had scintillating scotomas for a few weeks after contrast but nothing so bothersome as a seizure.

Hope you’re doing ok.

Richard

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Thanks for that Richard.

I will post again when I go to see the allergists.

Thanks to you guys for always being there with us you are a great comfort to us all.

Micko

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Just to chime in, was found to be allergic to dye after I was injected with it for a scan of some type. I’m not sure how many types of dye there are but apparently there are other options. Blessings as you continue!

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Many thanks, just the sort of information I need for when I go to see the specialists. Forwarned is forearmed.

Micko

Hello @micko I was unaware that I had deadly shellfish allergy and just thought I was getting sick when my husband cooked crab…LOL but when I got sick three weeks in a row and threw out my neck and was due for surgery for an ovary cyst my dr said basically no dummy you have a food allergy.

Then my allergy dr told me I had such a severe reaction that I should not have contrast during MRIS etc but of course during a reg MRI the drs did not believe me and I went into shock. Of course they say this is rare which I think we are all used to hearing that by now.

So when it came time for my angiogram and embolism they knew about my reactions.
The good news is they can give you steriods to take days ahead and then during the procedure. I am not sure if having seizures is also a result of the allergy.
Even though I take the steriods I still feel sickly for a few weeks post. The second time I drank a lot of electrolytes afterwards to help detox my system.
I know from my allergy dr that each time we are exposed to a bad allergy our reaction get worse.

Hope this helps
Angela

Thank you Angela for your reply.

This all helps me to gain knowledge before the big day.
If there is connection between shell fish allergies and gadolinium I would never have known as I am a vegetarian and have never had shell fish ever. So this may be an important piece of information.It is certainly a question to be asked.
I will keep you posted.
Thanks
Micko

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Hello @micko Its definitely worth asking I am not sure - I know its the Iodine in the contrast. Infact I have always hated reg table salt and even though I have always loved Japanese food I always gaged on seaweed which has a lot of iodine, which I did not know either until after I learned about my shellfish allergy . I have to be even careful what skincare products I use I as well to make sure that they dont have seaweed in them.
I use celtic sea salt instead of reg table salt.
most hospitals now dont steralize with iodine which is good too cause so many people have reactions.*
I did not start eating seafood until I was about 16 thankfully and didnt really start eating regularly until I met my husband in my 30s.
please let us know what they say and how you do
Angela