Terrified to get an MRI

[Valeriel23]

Hello Everyone

I am post surgery - 1 year and 2 days today. I haven't gone back for an MRI since right after surgery when they confirmed at the time my AN was removed completely. I lost hearing in my left ear (totally gone) and it took about 3 months to start walking, seeing, balancing etc but, for those reading this who are new post-op hang in there! it gets easier. I pray for a speedy and easy recovery for all of you/us.

Now, my throat is still broken. I can't eat much without drinking and certain things like bread, biscuits, cookies, cake (anything dry) is a no-go. That's been rough but, it could be worse so...I'm going to shush and not complain. I am alive, and can take care of my kids.

So, I have to go for a follow-up MRI. needless to say, I am overdue. I tell myself every month I am going to go but, I simply cannot get over the fear/anxiety. I was blindsided and shocked when my AN doubled in size in 2010 and they said we have to operate and I think I'm terrified that despite my recovery it's back or growing or something else is wrong.  Anyone else have this issue? I am truly paralyzed by the thought of going back. I know that's not good, I need help figuring this out.

Thanks!
Val

[opp2]

I'm so sorry for everything you've been through Val. We all know the stress of having a skull base tumour. I know you don't want to go back. For me the decision to have the MRI is about peace of mind. I am happier knowing that my tumour has not regrown. My surgeon told me they got it all, and I believed them. I still do, but that doubt still exists.

I guess my advice to you would be: are you comfortable right now knowing that you have not had an mri for a while, or is it fear that is stopping you? Do you know in your heart the tumour is gone, and can you live with that? Or would it be more comfort to you to have the visual truth??

Tough decisions. Personal Choices? All the best my Dear.

[LakeErie]

Your post describes your understandable feelings about the follow up MRI. But we cannot  run our lives with our emotions, we need to use our intelligence. Separate your feelings from your reasoning.
Once you are not using your emotions, I think that you will proceed to have your MRI. Everything I have read from leading AN treatment centers places the risk of tumor regrowth after total removal at a very low precentage. Even if there is regrowth, the smaller than original tumor is often treated with CK or GK not the more invasive surgery you experienced last time. Finding it sooner than later, if it is even there to find in the first place, puts you at an advantage. At least that is what my reasoning tells me.
I sympathize with your swallowing difficulties. While I am just at 2  months post surgery, and not 2 years, my vocal cords and swallowing are complications that so far are slow to recover. They are better than week one and I am grateful for that. I hope things work out for you with this MRI decision.

[Jim Scott]

Hi, Val ~

I'm sorry to learn of your struggle with scheduling another MRI scan.  I assume that you fear it will show that the remaining tumor has re-grown.  Frankly, most post-op AN patients harbor the same fear.  One wants to think of the AN experience as over and done with.  However, postponing scheduling an MRI scan to avoid the possibility of getting bad news is not going to change reality.  If the AN grows, your ignorance of that fact (no MRI) won't change the truth of the situation and that fact that a growing tumor must be addressed. 

I would suggest that unless you have some obvious indication that the remaining tumor is re-growing, your next MRI will not be 'bad news' and once you have the assurance a 'clean' MRI offers, you'll feel a lot more confident about having another the following year.  At some point you'll no longer be required to have annual MRI scans but until then, I trust that you'll try to surmount your fears and do what's in your best interest.

Jim