Author Topic: Follow up MRIs with contrast  (Read 2632 times)

mwatto

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Follow up MRIs with contrast
« on: February 18, 2023, 07:43:54 pm »
Am about to get 4th MRI and sice the first one I have refused all contrast. Instead I say if anything looks suspicius then sure I will come back and have contrast. So far so good. I will have no choice if an emergency... anyhoo read this today and sharing. https://medicalxpress.com/news/2023-02-nanoparticles-rare-earth-metal-mri.amp
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

rupert

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Re: Follow up MRIs with contrast
« Reply #1 on: February 18, 2023, 09:33:03 pm »
As with anything a risk/benefit assessment is to be considered.   There is risk to anything.   As far as the contrast dye,  it has a proven benefit in most cases.  That’s why they use it so much.    Hundreds of millions of MRIs have been done using the contrast.    In your particular case I would ask, who is ordering the contrast?  Always I believe that blood work is done beforehand to see proper kidney function so there are no issues.   And have you had discussions with your doctor about it, as they usually specify with or without contrast.   I’d be interested in that opinion and why so many in such a short time.      Hopefully, going forward you can go many years between and at some point discontinue altogether.   
« Last Edit: February 18, 2023, 09:37:24 pm by rupert »

mwatto

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Re: Follow up MRIs with contrast
« Reply #2 on: February 19, 2023, 08:23:08 pm »
Hi I had contrast when it was needed to identify and treat. However I dont want one every year as its pro inflammatory. Am at year 4 so far so to monitor I ask for no contrast. Yes re kidney function testing in the beginning- I insisted on that.  So personally I dont want contrast - I see no benefit at all for me in annual follow ups - will save it for emergency use. Luckily my specialist agrees with me - as does the facility. There is plenty ifo on inflammation driving AN growth so I just want to minimise that.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

SP

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Re: Follow up MRIs with contrast
« Reply #3 on: February 28, 2023, 02:32:11 am »
thx for the rare earth nano-particles link Michele!

After the initial MRIS's, I also now request no GAD -- neurosurgeon is OK with it -- both local & Stanford review images ok without it, I am at year 8 post CK, thankfully don't have to worry about next scan until 2025.

there was also this published in 2017 by TGA (Australia)
https://www.tga.gov.au/news/safety-alerts/gadolinium-based-contrast-agents-mri-scans

Stella
 
My AN Story – Sydney to Stanford CK

2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

mwatto

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Re: Follow up MRIs with contrast
« Reply #4 on: February 28, 2023, 06:55:29 pm »
Thanks Stella! I joined the gadolinium toxicity forum a few years back for a while. Another friend in Perth with an AN and I decided no more contrast. My specialist agrees with me its pro inflammatory (exactly what we dont need) and that if anything is flagged different story. Tomorrow is 4th MRI and no contrast. I also feel since that vx (Pfizer) I am more sensitive to things - my immune system on high alert maybe. In any event I do not want it. My service provider says they also think given their state of art equipment that its not necessary in my case as simply tracking progress.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

SP

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Re: Follow up MRIs with contrast
« Reply #5 on: March 01, 2023, 03:17:34 am »
**** Sending you all my best Sydney vibes across the country to you Michele!!!! ****
Wish you all the best positive outcomes on this years MRI.

Stella x
My AN Story – Sydney to Stanford CK

2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

gbly

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Re: Follow up MRIs with contrast
« Reply #6 on: March 02, 2023, 01:49:04 pm »
mwatto,
Good luck and keep us posted on the results.  We are all with you.
I had not heard about the inflammation side of contrast, but very good to know.  Over time that could become a big issue.
v/r GB

mwatto

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Re: Follow up MRIs with contrast
« Reply #7 on: March 02, 2023, 10:46:28 pm »
Hi Gbly thank you results early next week. Yes I do think contrast is inflammatory and also new evidence re nano particles in kidneys ...I think especially as we get older and our body less efficient at elimination. I also think its not needed to simply monitor. I understand differnt in emergency or deeper investigation. Plus yesterday I read it raises histamines- I dont want that either.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

donjehle

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Re: Follow up MRIs with contrast
« Reply #8 on: March 17, 2023, 05:35:24 pm »
Did you get your MRI results, Michele?
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

mwatto

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Re: Follow up MRIs with contrast
« Reply #9 on: March 17, 2023, 08:03:32 pm »
Hey there Don. Yes and its very good news mine has shrunk quite a bit. No cysts visualised, trigeminal nerve and all structures normal. My hearing is 85% that side. The stabbing ear pain has gone now. My dimensions in 2019 were: 20.3x19x14.5mm and it was cystic. NOW they are: 12x12x10mm. The leasion was touching my brainstem before now it 'only paryially extends into right IAC and does not reach the fundus'. No cystic degenration. I am pleased because I was very very anxious for this MRI re the ear pain (I think that must be TMJ as its responded to some You Tube tips on bruxism, clenching which my dentist also said he thought was causing nerve pain).
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

SP

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Re: Follow up MRIs with contrast
« Reply #10 on: March 20, 2023, 07:41:49 pm »
Hi Michele,

I hope you find relief for the TMJ/ear pain soon...
The MRI results show indeed very good news..... Significant tumor dimension shrinkage and not impacting the brain stem and the trigeminal is OK---that is all so great Michele!!

Onward to progressive healing,

Stella
My AN Story – Sydney to Stanford CK

2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

mwatto

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Re: Follow up MRIs with contrast
« Reply #11 on: March 20, 2023, 08:04:24 pm »
Thanks Stella! Yes the ear pain turned out to be TMJ so a lot of you tube videos on specific exercises for that and the pain has gone! During the day I also work on gentle massage and relaxing techniques for that. No more issues - much to my amazement as my doctor told me it was that ages ago...!
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing