Author Topic: Gadolinium Concern  (Read 17692 times)

captoats

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Re: Gadolinium Concern
« Reply #15 on: October 19, 2010, 12:49:15 am »
I'm of the mindset that you don't need it to spot one of these critters initially but do need contrast before treatment.  At least it worked in my case with a 1.7X1.4 AN.  Easy to see something this size according to the doctors I've consulted with.  I am going to have one with contrast just before surgery with 1mm slices per the surgeons request.  Not crazy about Gadolinium but with the blood test beforehand, the risk appears to be low.  I have been getting junk e-mails from lawyers looking for patients injured by gadolinium.  Makes you wonder though.


Crazycat

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Re: Gadolinium Concern
« Reply #16 on: October 27, 2010, 11:37:19 pm »
Hi,

It had come to my attention that some of the remarks made in this thread sparked a bit of controversy under the "We're Not Doctors" post.

First of all, I'd like to say that every bit of advise given to me here has been logical and nothing I hadn't considered at one time or another on my own. I just wanted to hear some consensual validation from my AN brethren to help me along with my decision.

I also want to mention something that I hadn't brought-up in my initial post here and that is that no one (none of my doctors) has been watch-dogging my treatment agenda. Every visit I make to my doctors and/or requests for exams and tests has always been up to me. I have to instigate the procedures by calling them. They never call or remind me that it is time for a recheck. The closest I come to that is for my yearly physical or lipid panel blood test with my primary care physician. Even then I have to occasionally suggest, "shouldn't we have a blood test first before I come in?", as a means of not putting the cart before the horse.

A good example is my last colonoscopy. I had my first one five years ago this coming December 5th.The results were exceptionally good with the recommendation that I have my next one in ten years. "Ten years?!" I thought. Isn't that stretching it a bit? It wasn't until I fed that information to my new PCP that he confirmed the initial prognosis. What they don't know is that my mother died from colon cancer when she was younger than I am right now! Anything can happen in ten years and I'm not going to take any chances with a condition that can afflict a person as gradually and insidiously as colon cancer.

I had discussed the results of my first colonoscopy over a year ago with my PCP. During my last visit with him, he asked (having forgotten our previous discussion) if I was due for one. I used that lapse as a means to reschedule another colonoscopy at the five year mark. In other words, I drove it. I had to make it happen. If I had only reminded him of the ten year prognosis he would have just gone along with that and I'd have to sweat out another five years wondering whether or not I was going to be in trouble. I'm not going to live like that if I can help it.

It's the same principle with the MRI. After surgery, my doctor never told me "You're going to need an MRI every year"; what he did say was, "You're going to need MRIs the rest of your life."

For my next scheduled MRI on November 8th, I had to call and schedule it. I had to rattle them. They didn't even know who I was. All they know is that I have the coverage. It's been so long since my surgery that my doctor's assistant who I was friendly with no longer works there.

This is not intended to slight the great surgeons I had whatsoever but just to say that it's a big world and it's very easy to get lost in the shuffle. You have to manage and drive your own health care.

  
« Last Edit: October 28, 2010, 01:05:57 am by Crazycat »
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Funnydream

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Re: Gadolinium Concern
« Reply #17 on: October 28, 2010, 01:51:51 am »
http://en.wikipedia.org/wiki/Gadolinium

hmm, Not sure I'm as worried about Gadolinium as the chest X-Ray (front and side) and two CT scans of my head I got while at the hospital.

Thankx for the thread. I didn't even know there was a threat.
Age 42, AN left, 2.8cm
left hearing gone, balance getting better.
16 hour Surgery 9-27-10 CSF leak fix 10-4-10 3 hours
Miracle I feel my left face and tongue again.
If we evolved from monkeys into humans? When do we stop being human and become something else? What would that something else be?

Jim Scott

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Re: Gadolinium Concern
« Reply #18 on: October 28, 2010, 03:55:31 pm »
Paul ~

Thanks for the update.  Yes, part of my reply to your original post was frowned upon by another member but I believe I was able to put my response into context for her in a later message.  Old news, now.

Your point about having to be proactive in scheduling tests and so on is well taken.  Many of us have had to do this and your comment about how a patient can get 'lost in the shuffle' is dead-on.

I trust your upcoming MRI will be uneventful (normal) and that your colonoscopy will prove likewise.  Thanks for your contributions to our collective understanding regarding the intricacies of receiving proper medical care and follow-up, which is often dependent on our individual initiative.     

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Crazycat

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Re: Gadolinium Concern
« Reply #19 on: October 28, 2010, 04:11:24 pm »
Exactomundo Jim!!
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Sheryl

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Re: Gadolinium Concern
« Reply #20 on: October 30, 2010, 05:47:57 pm »
Everyone, if they can, should be 100% proactive in regards to their health care.  If unable, you should definitely have someone you trust be with you and help guide the way through the medical maze.  I always request a copy of each and every medical test, MRI, x-ray, or office note for my own file and for my husband.  This has proven extremely helpful when you see a new doctor - having everything right at hand.  In our case, especially, moving twice a year between Florida and Massachusetts.  There have been many cases when I have suggested something and the doctor would say that is a good idea and would order the test.
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

Crazycat

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Re: Gadolinium Concern
« Reply #21 on: November 10, 2010, 07:51:03 pm »
Five year MRI check successful. I did the Gadolinium. No problems.

There was a funny moment. As the technician was walking me to the tube, she was rapid-firing questions at me regarding claustrophobia, metallic objects, pacemakers and so on. I felt like Richard Dreyfess in the movie Close Encounters Of The Third Kind when he was being escorted onto the alien ship and they were asking him questions about his background in like-manner.

As this was happening, I remembered that I had reacted exactly the same way (made the same comparison) as I did last year. Then I realized all at once she was the same technician that walked me to the tube that I had said the same thing to the year before.

In mid-sentence I stopped myself as the memory came rushing back and said, "Wasn't it you that I said the same thing to last year?" It was and she remembered me. I had forgotten all about it. We had a good laugh!

Before they booted me up with the dye through the I.V., I expressed my concern regarding the dangers of Gadolinium. They responded by saying that it was true "IF" you already have kidney problems—which I definitely do not.

Being especially attuned the the potential perils of the substance, I felt the cold liquid enter into my bloodstream and travel up my arm into shoulder, neck, head and chest. Even though I've had this procedure done seven times in the past five years since my surgery, this time I felt it like I never had before.

But it really was all in my mind.
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Tumbleweed

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Re: Gadolinium Concern
« Reply #22 on: November 10, 2010, 08:56:08 pm »
Just to chime in quickly: I've had 5 head MRIs with contrast so far and have not had any problems. I even forgot one time to drink a bunch of fluids immediately afterwards but suffered no ill effects.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

ennayram

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Re: Gadolinium Concern
« Reply #23 on: November 18, 2010, 10:27:36 pm »
This has been a very interesting discussion. I have never had a kidney problem and never had a reaction to the Gadolinium. I have had 5 MRIs (first one was in 2000 and last one was in 2008).  I recently decided to check my toxic metal levels. I came out below average with the exception of one. Yep, I came out with very high levels of Gadolinium -- 40 times higher than average. My doc said that he was not surprised as the body retains a certain amount after every MRI. Once it is in the body, it goes throughout the body, particularly bone, soft tissue, etc. That's the reason that he checked the toxic levels at the cellular level. The doc is going to try chelation therapy on me, but even that is not too successful because the Gadolinium is chelated. I have since read an article in which the researcher said that for an average patient who has undergone numerous MRIs with a normal functioning kidney, it would probably take about 130 years for the Gadolinium to clear. Oh well, I guess I won't be around to have a Gadolinium-free body. Nothing to do about it now.

MaryAnne 

Crazycat

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Re: Gadolinium Concern
« Reply #24 on: November 18, 2010, 11:29:12 pm »
Interesting MaryAnne!
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

rjbarker

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Re: Gadolinium Concern
« Reply #25 on: November 22, 2010, 12:37:13 pm »
For the gadolinium issue, see www.pathmax.com/dermweb, the website of the Internat.Center for NSF Research. The main point is the FDA has warned that patients who suffer from acute or chronic kidney disease should avoid gadolinium.
d*** B

Tumbleweed

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Re: Gadolinium Concern
« Reply #26 on: November 22, 2010, 08:35:59 pm »
Thanks for the link, rjbarker. I think I'll drink a lot more fluids the next time I have an MRI!

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Gus

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Re: Gadolinium Concern
« Reply #27 on: November 30, 2010, 11:04:59 pm »
They just found mine (Sept) with no contrast on a weak 0.7 machine.
I'll do G once on a 1.5 open MRI, then see if I can find a Dr. that will check progress without G.
I spoke to a Dr. at the House Ear Institute and I don't think it is mandatory each year, he seemed flexible.
8x 16 mm AN on left side
Diagnosed September 2010
Wait and Watch until MRI showed 2 mm growth in July 2012
Surgery on Aug. 30, 2012 via middle fossa at MD Anderson; results showed the tumor to be a benign meningioma instead of a AC.  Hearing was saved; mild Tinnitus; Feel Very Blessed

Crazycat

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Re: Gadolinium Concern
« Reply #28 on: December 01, 2010, 03:07:21 am »
Interesting. Thanks for the info Gus!
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

nteeman

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Re: Gadolinium Concern
« Reply #29 on: December 07, 2010, 07:43:32 am »
I had one MRI before my surgery, one three months after then another a year after surgery, all with Gadolinium. I was assured that as I had no kidney problems there was no concern. Now I have noticed something. As a blood donor for many years I have been experiencing problems when I donate blood. They can find my vein without problem but the blood flows too slow.(when you donate blood if it flows too slow it can start to clot in the tubes). This has happened every time I gave blood since my surgery. The arm they usually go to is my left arm--same arm I got the Gadolinum 3 times.  During a check up the nurse was trying to draw blood for a test and she stuck in the needle and nothing came out -- then she tried my right arm, no problem. Last time I gave blood I experienced the same issue - slow blood flow. I asked the tech to try my other arm, once again no problem--blood filled up the bag one-two-three. Everyone I asked about this, including my doctor could not explain why this happened. My blood test results are very good and there is no other issue. Now I wonder if the Gadolinum going into my left arm did something? Pretty strange, huh. I do plan to ask my neurologist on my next visit.

Neal
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
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