MRI

[aimee]

Phil,

Did you get your MRI?  All three of our kids had normal MRIs...very relieved!

Aimee

[philbarto]

No I am still waiting but I read that because brain avm are genetic there is only a need to have the one scan as you appear to have them from birth so I hope it makes your news even better.
best regards    Phil

[Emmaxxc]

I had my MRI scan 4 weeks ago...it was horrible, I was silly and went out and celebrated a friends birthday the night before needless to say I didnt feel 100% but I think it would have been just as bad if I did feel 100% my MRI lasted 55minutes!!

I am waiting for my results now... Does anybody know how long approx to hear back from them?? I'm just a little worried now about the results because I dont know what to expect.

Does anybody know what procedures are taken up if you do have lung or brain AVM's??

[aimee]

Our results took less than a week to get. I'm not sure what the treatment is for a cerebral AVM...they might be able to coil it just like a lung AVM. My husband had a lung AVM coiled and that wasn't too big of a deal. They stuck a catheter through a vein in his leg and threaded it up through his heart, into his lungs and occluded the AVM with a coil.

Aimee

[labgirl]

Just weighing in on the CT/MRI biz...had a CT with contrast back in '89 and "nothing" was discovered, yet had a CT in 2007 (with MRI) showing several small telangiectasis (one was a recent bleed with minor stroke). Am not sure why the scan in '89 missed what "should" have been there but it begs the question: if indeed one has HHT then how accurate is the assumption that a "one time scan" will pick up on it? Because apparently...they missed it or it wasn't "there" until 18 yrs. had passed. BTW, my dad has it, my paternal grandfather had it and it's suspected that my great-grandfather died of a cerebral aneurysm (at age 47) as a result of it, so there's definitely family history.   

[philbarto]

Initially I had a cat scan every five years but since the discovery and treatment for a pulmory PAVM it is now two yearly. I had an MIR scan for the first time a few months ago and once again they found one treatment starts later this month so I suppose I will be having MIR scans on a regular basis
regards    Phil

[aimee]

In response to labgirl...some people think these brain AVMs are present from birth so a single CT or MRI should detect it, but the HHT expert we saw at Mayo said that she thinks anyone with HHT should have a brain MRI every 5 years or so.  She believes that the cerebral AVMs can develop over time. 

[labgirl]

Thanks Aimee...good info.

[charlyn]

I'll repeat a bit of history. Undiscovered PAVMs caused me to have a brain abscess both in 2005 and 2006. My brain surgeon says he doesn't THINK I have brain AVMs and he's "really looked." I had my largest PAVM coiled in St. Louis (an HHT "center")  in Dec. 2006. A c-t in March showed that there was still some "leakage," in other words that it wasn't totally successful. However, a c-t this month showed that the coiling had continued to work through the months and now is completely successful, so remember that if yours doesn't completely take at first. Last week, I had a seizure. A c-t showed nothing, but it never does. The cause is either scarring from the two craniotomies, or I have a cranial AVM yet unknown which is presenting this way, or I have another abscess. If I start having headaches, I'll call my brain surgeon for an MRI. The reason I chimed in on this topic is that the intervention radiologist I saw this month, who got his medical degree at an HHT center, says these baby AVMs in my lungs may not be large enough to see, but they could grow, and I need a pulmonary c-t every six months. Don't know if that would be for everyone, or just me since I had two craniotomies already. Gee, this HHT thing is a lot more complicated than we used to think it was!

[scorpio]

Hi, new user here. My mum suffered a brain abcsess in feb 2006 due to undetected PAVM's (which have since been embolised) and fortunately made a wonderful recovery. However, no one seems to be interested in repeating scans for PAVM's or CAVM's. Should i be trying harder to get these done for her (and myself)? We see Dr Shovlin at The Hammersmith but since our initial CT scans for PAVM's over a year ago we have had no further contact from her. It's great to hear of another Brain Abcsess survivor, are there any more out there?  Scorpio

[philbarto]

You should be having regular cat scans for lung PAVMs but the brain AVMs apperently are generic you are born with one or not and once it has been treated one does not return.
regards   Phil

[charlyn]

I have found a local intervention radiologist who earned his M.D. at Barnes Jewish in St. Louis, one of the U.S.'s HHT centers, and he suggests that I repeat lung scans as often as every six months for the rest of my life since I've had two abscesses. I am very happy about this. I have lots of baby PAVMs, and we want to make sure they don't grow large enough to cause me more trouble. Twice is enough!!