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Had an MRI/MRA on Tues and was "yellow flagged" for irregularities, got the CT done today, the way they are rushing really has me anxious. Anyone else finding the squished trig bundle a common effect of the attacks? Heres some notes from the doc with better explanation. 

From Dr. Justin Beuthin,

Today's visit was primarily to discuss the most recent imaging finding. We discussed that the MRI had shown reflection of the prior right-sided cholesterol granuloma on the CT, although it is difficult to compare a CT an MRI, it does appear to have increased in size which has also put impact on the right carotid artery. There also appears to be flattening of the trigeminal bundle which we discussed may have some influence on his head pain as it is on the right side. To help clarify this particular issue I will order a CTA of the head. Also I will request a referral with Neurosurgery to discuss further monitoring and consideration for evaluation/treatment. 

I don't know what to make of it yet. My emotions are all over lately.  On the positive side I've been skipping nights, severity, and duration are coming down. I'll take that as a win!

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I understand your concern! I am happy that you have the 'positive side' to lean on.

I have not experienced this diagnosis, nor have I read of another with 'flattening' of the trigeminal. But, this is also why it is recommended to get a scan when diagnosed with Clusters - something else may be going on in there. Apparently, you have one of those 'something elses'!! 

A referral to a Neurosurgeon may be scary, but it is great that your doc is looking out for you! The surgeon should be better prepared to deal with irregularities and figure out what is going on inside. The CTA is a step above the CT in diagnosing head issues. Is Dr Beuthin a Neurologist? Apparently he has had this granuloma in your records for a while and now it appears to have grown? Sometimes other stuff can cause Clusters, like one member had an aneurysm found and repaired. That ended his CH. 

Hang in there and let us know what the diagnosis is when you get it!!! I wonder if it reduces or returns to standard shape outside of your cycle? Or is it this way cycle or no? 

Fingers crossed and good vibes coming your way!! 

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Thanks spiny, Dr. Beuthin is a neurologist, he seems to have a good team from what I can tell. The attacks started just before I turned 15, there was a CT scan done at that time but I've been having trouble getting old records as that was in 2000 and the hospital may not have the records anymore.

I don't believe the granuloma was there in 2000 but it would be nice to know. The mri/mra scan appears to show the growth larger so he sent me in for another CT to compare. I haven't heard back yet on that. 

I didn't know cluster could be a result of other issues, still learning so much! Great info, thanks again! Will update as results come in.

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