Newbie, Mostly Asymptomatic and Nervous

General
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Hi Everyone.

It was such a blessing and comfort to find this network. I’ve been reading through many of your posts and decided to finally do one myself.

I had an MRI done as a result of a car accident back in 2014 when I lived in PA. To make a long story short, I was told about excess white matter in my brain and not to worry. Fast forward 4 years, left arm and leg issues prompted me to see a neurologist in FL, where I now live.
He ordered a new MRI which showed I had a cerebral AVM in my front right lobe, which may or may not be causing my left side issues. Of course it was there in 2014 but never mentioned to me.

Anyway, I was told it didn’t seem to have grown, not really sure of the size, I have to call him back. I think I was so dumbfounded while he was delivering the news, my mind went blank.

I am about to turn 50 and have a beautiful 3 year little girl (I know, we started very late but we had been trying for a long time). This has really shaken me up especially when thinking of my little girl. God has been watching over me all my life (I truly believe it) and has gotten me out of a lot of bad situation and I continue to trust Him now. I just want to make sure I make the right decisions for me.

My neurologist wants me to go for a second MRI, this time with contrast which I have read can cause not-so-great side effects. I’ve read horror stories from others who have had bad reactions to gadolinium and that’s causing me anxiety as well.

I have always been pretty healthy except for sinus issues. I am not obese, don’t smoke and no major issues (until this AVM finding). I must admit, since my neurologist apt, I’ve been worried as I’m sure can be expected…

From reading through several of your posts, I appreciate what each of you may be or have been going through on making decisions. It’s difficult and it’s scary. I honestly don’t know what to do yet.

I’m scheduled to see a neurosurgeon after I get the MRI with contrast which I have been putting off. So I haven’t even gotten to that point yet of being given professional advice and/or treatment options (although I already know what they might be).

I guess I just wanted to share a little about what’s been going on with me. My little one’s third birthday is next week and I don’t want to be a daddy-downer for her party. I’m going to try and be myself and leave all this anxiety on the table for another day.

Hope you are all doing well. God bless.

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Welcome to the site you’ll find a lot of good stuff on here.
I’ve had multiple MRIs with contrast and have never had any problems but everybody’s a little different, you probably need it with contrast so they can pinpoint exactly what’s going on in clear detail unfortunately worry and anxiety is part of this process you just have to trust your doctors and take it step by step day by day; stay strong you will get through this!

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Hey Ralph,
I have to agree with Mike, and issues with contrasts are rare. They do occur in fact I have had a reaction, but considering I’ve had 7 MRI’s, both with and without the contrast I have only had a reaction once. We can all surmise on what the treatment may be, we can all use Dr Google but often we can read much more into a situation than is needed. Treatment options are always changing and depending on the neuro you see will depend on what options they may deem necessary or available. I believe it is normal to have concerns, hell, I did. I was beside myself with stress over ‘what if…’
BUT…
I have a question for you… …What are your options?
1: Ignore it and hope it goes away. If your symptoms are already worsening then I’d say this is the most unwise thing to do.
2: Get the scan done. Obtain the neuro’s recommendations. From there a course of action can be developed.
It may be a case of ‘wait and watch’, monitor it to see if there is any change. It may be a case of embolization via an artery. It maybe a case of having a craniotomy and having it dealt with. But standing on the outside guessing at the ‘what if’s’ is a waste of time and energy.
Now this may sound rude, but it’s not meant that way. You have a family with a “beautiful 3 year little girl” but if you do not deal with the issue at hand and you have a major rupture you may not be here for her to be a beautiful 4 year little girl. Do yourself and your family the favour, go get the scans done, get the firm advise from the professionals, then work with the firm advise to make a plan. You, me and all the other members guessing on your options is a waste of time and take it from me guessing at the ‘what if’s’ can lead you to some worse case scenarios that can simply turn the mind to moosh. I went to some awful places thinking of worse case scenarios.
Get some informed advice from the professionals, then you can make some informed decisions.

Merl from the Moderator Support Team

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Ralph

Welcome to the club! It’s a bit of a shocker to find oneself here but I hope you’ll get more used to the idea and it will become less scary over time.

Ask whatever you want. That’s what we are here for.

Very best wishes

Richard

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Thanks Mike5. I seem to worry about everything, have always been like that and I do a lot of reading and research which sometimes is good and sometimes not so good (for me) because I get trapped in what-if scenarios.

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Thanks Merl. That is one of my main problems - I over-analyze things and read more into things than I probably should.

I am going to make the appointment next week to take the blood test and then follow up with the MRI appointment. Regarding your one reaction to the contrast, what exactly was it and did it become a permanent deficit?

I’ve been reading about best hospitals for neurosurgery and Mayo Clinic seems to be ranked #1 almost every year followed by Johns Hopkins. Have you or anyone on here for that matter have experience with either of these?

I live in Florida and wonder how difficult it might be to seek treatment @ Mayo in MN. I worry if they do a procedure and I fly back home to FL and have an issue, what do I do then? I know there are other neuro centers down here but will they have the expertise, etc?? See, this is what I go through in my head…

I did not take your last comment as being rude and you’re right. I do want to see my little girl grow up.

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DickD, it was a shocker. Thanks for the welcome!!

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@Ralph_FL what if scenarios are part of the process and information is good but try to stay away from places like WebMD as according to that you’re going to die from just about anything you input; ask a lot of good questions with your doctor get all the information you can and move forward as there’s a lot of uncertainty with AVM’s but at the end of the day you need to address it so you can be around for your little girl.
Believe me there’s been plenty of steps in this process where I wasn’t sure I would wake up the next day after having two craniotomies but wanting to be around for my wife and daughter was the strength I needed to keep pushing forward and get better.

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Ralph,
In the 40 years (no, that’s not a typo, I started battling this in 8th grade) I have had numerous MRIs and CTs with contrast - I don’t know what type - I frankly didn’t care. I had two reactions to them - and that them every time. First, the taste in my mouth turned to what you would imagine eating a ground up penny would taste like. Answer to that - buy yourself a coffee and cinnamon roll on the way home. The other one was that, well, as one of the MRI techs told me - “You’re going to feel like you wet your pants, but you didn’t.”

Nuisance but no big deal. My dad, during his 15 month battle with pancreatic cancer, had a couple of MRIs with contrast - and the contrast made him “itchy” all over. So, to combat that, starting with the second one, they gave him a very heavy dose of Benadryl. Made him sleepy but that was not nearly as much of a problem.

As to the waiting and watching part - I’ve had to “do” something in 1978, 1986, 2009 and now 2018. In between those, it has been a waiting and watching game and analyzing the risks vs. the rewards. Even now, I’m dealing with some fairly nasty post embolization symptoms, but I would do it again - because the alternative was a growing risk of a brain bleed.

This group is amazing. We all get it, to some level.

Hang in there and comback any time you need to.

Tom

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Hey Ralph,
“…I over-analyze things and read more into things than I probably should…” To be honest, I do too and I believe it’s very common. But over researching, over analysing bends my mind way too much. For a long time the medicos were telling me there was nothing wrong it was all in my head (No pun intended), I knew there was an issue but they couldn’t find one. I went thru a period of trying to ‘fog’ it out, drink it away or drug it away. In the process I went to AA, here I found a prayer(and by no means am I a believer at all) which has served me well.
“Grant me the serenity to accept the things I cannot change.
Courage to change the things I can
And the wisdom to know the difference”.

But over the years I have learnt to break things down into steps.

  1. What can I do to resolve the situation
  2. Who do I need to see to assist
  3. Get it done

Once I have exhausted all of my options I have no choice but to accept. I have found that if I leave an option unexplored the medicos often point at that as being the cause of ongoing issues. So by exhausting them all they can no longer be pointing the finger at me.
I’m in Australia, so I’ve had no contact with the Mayo Clinic nor John Hopkins. Here we have universal health care which has been an absolute blessing as the costs for my ongoing treatments would easily be in the tens of thousands had I needed to pay. Here the same dr’s do both private and public patients, it’s just as a private patient procedures are conducted in a private hospital with a private room.
My reaction to the contrast initially started off with itching, severe itching, then nausea followed by a headache from hell. Normally I’d drive to and from the scan but after that scan I was not safe to drive, needing to call the wife to come and collect me.

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Hey Ralph, Tens of thousands? I saw a report the other day that my private insurance company has paid over $162k so far this year. Gulp.

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@TJ127… in 2015 when I had my two craniotomiesI think my insurance paid over $150,000 too and I had $12,000 in out-of-pocket out-of-network costs…pretty sure I would have lost just about everything and file bankruptcy if it wasn’t for the insurance!