Hello. I was diagnosed with a complex chiari about 2 years ago. My neurosurgeon said I was a good candidate for surgery( decmpression followed by cervical/skull fusion). However, I have chosen for now not to undergo these surgeries.
One thing I have learned about myself in these last 2 years is that my body has retained the heavy metal, gadolinium, which is in the MRI contrast or “dye” that is sometimes administered with MRI’s. We are told this contrast leaves our bodies within 24-48 hours of receiving the contrast. However, with my last MRI with contrast 2 years ago, I took a urine test that tested for various heavy metals including gadolinium (this test was performed 2 months after the MRI) and I found I was still excreting this contrast.
This urine test only indicates that you are excreting the heavy metal but does not tell you how much gadolinium is still retained in the tissues of your body.
This heavy metal can cause a whole host of problems…neurological symptoms, vibrations and electrical shocks within the body, head pressure, lack of concentration/brain fog, anxiety, feeling of impending doom, pain in bones and joints, endocrine disruption, skin problems, muscle fasiculations/twitches, etc… I was really amazed to find that others who have had this contrast and went in for MRI’s for different reasons share a lot of symptoms as chiari.
I am wondering if our symptoms are aggravated by this heavy metal?
I found a link that gives more information about the contrast if you are interested in learning more.
There is no current treatment for this heavy metal toxicity like there are for other types of heavy metals such as lead. Chelation therapy through IV has been used by some people who have had gad poisoning, but there are mixed results with this. It has actually worsened some people’s symptoms because it is believed that the chelator in it is not strong enough to bind to the retained gadolinium in our bodies and that it can actually re-deposit the gadolinium in a new spot in the body. You will find more info on the site I gave you. I’m not very good at explaining things.
I have received at least 6 MRI’s with contrast for my brain and complex chiari between 2014-2016 (Since 2017 I have requested MRI’s without contrast since discovering I have retained it). Since those MRI’s, I have had issues with vitamin and mineral deficiencies and developed an autoimmune disease of the thyroid, and experienced other health issues.
I would have never known about this until I saw a video about Gina Norris (actor Chuck Norris’ wife) on the internet. She had 3 MRI’s with contrast in one week and became very ill. What was interesting was that she complained of some symptoms that were very similar to mine. Two months prior to seeing that video, I had undergone an MRI with contrast. I told my nurse practitioner about this and she ordered a urine test to see if my kidneys were still excreting gadolinium in my urine. And sure enough, the test showed I was STILL excreting high levels of gadolinium in my urine. This stuff is suppose to leave our bodies within 24-48 hours. When I have gone for MRI’s with contrast in the past, the forms for consent may only mention that gadolinium may not be safe if you have kidney problems. Gadolinium can cause NSF ( nephrogenic systemic fibrosous) in patients with kidney issues. However, I and many others who have had contrast and have normal kidney function are retaining it.
I am sorry if I am not expressing myself clearly; I have difficult time concentrating and putting my thoughts together.
@sarcar thank you for sharing this information. Someone on this forum has mentioned this to me previously and unfortunately, I have not followed through with asking for a test. I am taking my daughter to several appointments in the following week and will ask about this issue. It is strange that the symptoms are so similar to her Chiari symptoms. I think it would be wise to at least know if this could be exacerbating her illness.
Most doctors don’t know about this. I have told multiple physicians about this and they were clueless about this.I even told my neurosurgeon and he didn’t care to listen that this was still in my body. I am suspecting doctors are afraid of lawsuits which I am not thinking of doing especially if he is not aware of this. My neurosurgeon says there are no studies out there to support this. However, most studies that have been completed on Gadolinium are done by the pharmaceutical companies who are saying it is completely safe and only causes problems in persons with kidney dysfunction.
It was a functional medicine (integrative) doctor that I got my gadolinium test through because most doctors don’t regularly test to see if heavy metal could be a root cause for a health issue. What I am saying , is don’t be surprised if the doctors brush aside your concern because they have never heard of it, believe only what they have been taught in medical school, or just are not interested in learning something new. I would say before you approach these doctors at upcoming appointments that you read about gadolinium toxicity…Gadolinium Toxicity « shedding light on the effects of retained gadolinium from Contrast MRI
This site is an excellent source of information and scientific studies plus you can also ask other gadolinium sufferers about their stories.
I have learned too often over these last several years that doctors don’t know everything. And I have had to advocate for myself when other health professionals don’t care or are not aware of changes in medicine.
May God enlighten you as you make decisions in your daughter’s heath care as well as enlighten the doctors and other professionals in charge of her care.
Thank you Sarah, I will certainly follow through with all this information. Unfortunately, at this point I would be more surprised if a doctor understood anything about her condition! We have learned that I have to research EVERYTHING myself because at this point, we haven’t found a single doctor that understands her symptoms much less her diagnosis. You’ve shared some great research information with me! I appreciate it so much. I pray that you will find healing and recovery as well. God bless you
