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AVM Survivors Network

I really need some advice . . . HHT center or Interventional Radiologist?

Hey guys . . .

I have surgery scheduled for the 26th of July – embolization on 7+ PAVMs. Currently my appointment is scheduled with an Interventional Radiologist at the University of Nebraska Medical Center (Omaha, NE). The more I learn about HHT and AVMs, the more I am convinced that I should go to one of the nine HHT treatment centers. At this time I am trying to weigh the “pros and cons” . . . any input would be greatly appreciated.

Thank you for your time and assistance,

Joshua M. Griffis

Hi Joshua,

From my experience with AVM’s (facial) the best course of action is ALWAYS be sure that the doctor treating you not only is familiar with AVM’s but is actual well versed, well experienced, and actually qualified other than just knowledgable. Has this IR had many experiences with AVM’s? Daily? Weekly? Once a year? That should be one of your main concerns.

An HHT center may have doctors who are more “practiced” in treating AVM’s than just a regular IR at a regular hospital. Does that make them a better choice? Well, probably but not necessarily. I prefer to have my hair done by an actual stylist who does it everyday than my sister who is a beautiy school drop out and only does this for friends occasionally. Obviously a much more superficial anaology. But really, it’s the same. Practice does make perfect. But it also doesn’t mean she isn’t completely capable of performing the task!

The times when complications arise with treatment or even post treatment acceleration of symptoms is mostly from those times when doctors who have the best intention, but not the best expertise, get in over their heads or just don’t do a “good enough” job.

There are very few docs that I trust treating my AVM. I’ve had only 3 main doctors for the past 30 years and we have always been both cautious and lucky in who was available to treat me. For me, I would never see a doctor who wasn’t part of a vascular anomaly team, who didn’t treat these weekly, and who wasn’t considerd an expert. But that is just my opinion. I’m sure lots of docs can do it just fine. I prefer the confidence of someone who really knows these beasts.

Don’t count out your IR’s ability…just KNOW what it is. He may be a great doc, you may be in great hands, and going to an HHT center may not be at all necessary. There is never any harm in contacting other facilities and having them review your films though. That in and of itself may give you the peice of mind you need.

Good luck!
Shalon

Wow . . . Thank you so very much for your words :wink: I have taken the time to look into my IR’s past; howver, I haven’t had any guiedlines on what should be considered “acceptable practice”, etc,

Now I at least have something to consider . . . and I did decide to, at the very least, have my files sent to an HHT treatment center.

Again, I thank you!

Joshua

Shalon said:

Hi Joshua,

From my experience with AVM’s (facial) the best course of action is ALWAYS be sure that the doctor treating you not only is familiar with AVM’s but is actual well versed, well experienced, and actually qualified other than just knowledgable. Has this IR had many experiences with AVM’s? Daily? Weekly? Once a year? That should be one of your main concerns.

An HHT center may have doctors who are more “practiced” in treating AVM’s than just a regular IR at a regular hospital. Does that make them a better choice? Well, probably but not necessarily. I prefer to have my hair done by an actual stylist who does it everyday than my sister who is a beautiy school drop out and only does this for friends occasionally. Obviously a much more superficial anaology. But really, it’s the same. Practice does make perfect. But it also doesn’t mean she isn’t completely capable of performing the task!

The times when complications arise with treatment or even post treatment acceleration of symptoms is mostly from those times when doctors who have the best intention, but not the best expertise, get in over their heads or just don’t do a “good enough” job.

There are very few docs that I trust treating my AVM. I’ve had only 3 main doctors for the past 30 years and we have always been both cautious and lucky in who was available to treat me. For me, I would never see a doctor who wasn’t part of a vascular anomaly team, who didn’t treat these weekly, and who wasn’t considerd an expert. But that is just my opinion. I’m sure lots of docs can do it just fine. I prefer the confidence of someone who really knows these beasts.

Don’t count out your IR’s ability…just KNOW what it is. He may be a great doc, you may be in great hands, and going to an HHT center may not be at all necessary. There is never any harm in contacting other facilities and having them review your films though. That in and of itself may give you the peice of mind you need.

Good luck!
Shalon