Replies to This Discussion

ModeratorPermalink Reply by Ron, Kansas on July 17, 2010 at 12:01pm

I am sorry to hear of the way you were treated. That was not our experience at all in several different treatments, although we did have to keep on top of things to confirm appointments, see that records were sent where they were supposed to, etc. Part of that I figured since WE had the most vested interest in the patient, I didn't mind taking the lead.

As for what is a "normal" protocol, I doubt there is one since AVMs are so unique. Different sizes, shapes, locations, bleed/no bleed, other medical issues and collateral damage the patient has, etc, all would help shape a procedure for a particular AVM patient.

When we first started, one major university hospital director of neuro said not to do anything with it--learn to live with it, while another major university hospital director of neuro said come on down and they'd fix it. Was one right and one wrong--I don't think so. Would one testify that the other was wrong, certainly not.

You have to do what you think is best for where you are right now. I might suggest that you find an AVM team that already works well together, so you have embolization, surgery, radiation, etc, ALL available to you in a reasonable time for any future treatment. It is certainly within your right to select a different doctor and/or course of treatment.

One thing I would be worried about if you sue (and I'm not saying you should not sue), is that you might be labeled as a problem patient. I'm not saying your treatment in the future would be affected by that label, but it might be a possibility.

I wish you well in whichever course you choose.

Ron, KS

• ▶ Reply

Permalink Reply by Kim R on July 22, 2010 at 3:28pm

I've already been labeled as a "problem patient" because I ask questions. As far a s normal AVM protocol, I'm sure it's NOT to leave a partially embolized bleeding ear that was still arterial and then be at a hospital that told you for 8 months they had an AVM surgeon--and then didn't. When I finally got to a real AVM surgeon in another state, he said the doctors in my state " didn't care if you bled to death before you got here." And the surgeon who finally did the AVM surgery thought I was a delightful patient--but then again, he doesn't have an over-blown ego and doesn't think it's beneath him to answer a patient's questions.

Ron, KS said:

I am sorry to hear of the way you were treated. That was not our experience at all in several different treatments, although we did have to keep on top of things to confirm appointments, see that records were sent where they were supposed to, etc. Part of that I figured since WE had the most vested interest in the patient, I didn't mind taking the lead.

As for what is a "normal" protocol, I doubt there is one since AVMs are so unique. Different sizes, shapes, locations, bleed/no bleed, other medical issues and collateral damage the patient has, etc, all would help shape a procedure for a particular AVM patient.

When we first started, one major university hospital director of neuro said not to do anything with it--learn to live with it, while another major university hospital director of neuro said come on down and they'd fix it. Was one right and one wrong--I don't think so. Would one testify that the other was wrong, certainly not.

You have to do what you think is best for where you are right now. I might suggest that you find an AVM team that already works well together, so you have embolization, surgery, radiation, etc, ALL available to you in a reasonable time for any future treatment. It is certainly within your right to select a different doctor and/or course of treatment.

One thing I would be worried about if you sue (and I'm not saying you should not sue), is that you might be labeled as a problem patient. I'm not saying your treatment in the future would be affected by that label, but it might be a possibility.

I wish you well in whichever course you choose.

Ron, KS

• ▶ Reply

Permalink Reply by Loretta H. A. on July 22, 2010 at 4:06pm

If I may make a suggestion - call one of the Mayo Clinics. They are very understanding. God Bless you....

Loretta

• ▶ Reply

Permalink Reply by Kim R on July 24, 2010 at 4:26pm

I went to Mayo originally for a 2nd opinion and they said they wanted to observe the AVM for a year. I told them I was in alot of pain and what would they do a year from now for treatment. They said embolization so I said --let's do it. I woke up in recovery and the doctor hadn't embolized it. I started crying and they got the doctor back to talk to me and he said an embolization was "palliative and not for cure" I translate that to mean he got in there, knew he was in over his head and didn't go through with the embolization. Mayo is good at a lot of things but AVMs aren't one of them. Kimberly

Loretta H. A. said:

If I may make a suggestion - call one of the Mayo Clinics. They are very understanding. God Bless you....

Loretta

• ▶ Reply

ModeratorPermalink Reply by Ron, Kansas on July 25, 2010 at 8:26am

Maybe the best option is to find out the attorneys that have sued the places you have issues with and contact them.

• ▶ Reply

Permalink Reply by Kim R on July 26, 2010 at 2:01pm

Mayo didn't have a vascular anomalies clinic when I was there--when did they get one? Kim

Jessica Lyons said:

I completely agree! Mayo Clinic in Rochester Minnesota has an amazing anomaly clinic!

Loretta H. A. said:

If I may make a suggestion - call one of the Mayo Clinics. They are very understanding. God Bless you....

Loretta

• ▶ Reply

Permalink Reply by Kim R on July 26, 2010 at 2:23pm

Yes, I've done that. This particular doctor has been sued multiple times,even by another doctor whose son had a procedure done by my doctor. Since he was also a doctor he knew how badly my doc had screwed up treating his son. I know there are many ways to treat different AVMs. This doctor really is bad and he should never treat another AVM person--ever. He started an embolization series, then left the US for 3 months and never followed through on his own treatment plan. The 75% treated AVM just re-vascularized in that amount of time and I could hear the bruit again. Then when I finally forced the hospital to let me see the AVM surgeon they'd told me for 8 months they had--they couldn't produce one-- and left me "hanging" with a scalp and neck full of hardened glue, a re-vascularized AVM and a partially burned off bleeding ear.

Ron, KS said:

Maybe the best option is to find out the attorneys that have sued the places you have issues with and contact them.

• ▶ Reply

Permalink Reply by Kim R on July 29, 2010 at 1:09pm

That link is about brain AVMs---Yes, I have been told that Mayo treats brain AVMS but not non-brain AVMs--they refer them out. That's what I was told the last time I checked with Mayo a couple years ago.

Jessica Lyons said:

Hey Kim, I was there in 2007 and saw a series of doctors over the course of a week. They did all the normal tests and then spoke with each other and with me about my options. Here's a link that may help some.

http://www.mayoclinic.org/arteriovenous-malformation/

Kimberly Buehrer said:

Mayo didn't have a vascular anomalies clinic when I was there--when did they get one? Kim Jessica Lyons said:

I completely agree! Mayo Clinic in Rochester Minnesota has an amazing anomaly clinic!

Loretta H. A. said:

If I may make a suggestion - call one of the Mayo Clinics. They are very understanding. God Bless you....

Loretta

• ▶ Reply

Permalink Reply by Jeff on August 4, 2010 at 2:39pm

Kimberly, This look like a very informative site: http://www.brain-surgery.us/

• ▶ Reply

Permalink Reply by Kim R on August 7, 2010 at 1:37pm

Thank you for your response. I don't have an AVM in my brain. It is in and surrounding my left ear and salivary gland. They really do treat brain AVMs differently than non-brain ones Kim

Jeff said:

Kimberly, This look like a very informative site: http://www.brain-surgery.us/

• ▶ Reply