I have an AVM on L ear, scalp and salivary gland. I saw a neuro-interventional radiologist at my state’s university howpital who said he was an AVM expert. At my consult we discussed that my treatment plan would be 2 embolizations and then surgical resection with a surgeon in the OTO dept. and that he (the radiologist) would coordianate my AVM care and make an app’t for me to consult with the surgeon before we did the embolizations. Fine. I went home and and after not hearing from him for 2 weeks I called and talked to his nurse and asked about getting that surgical consult set up and she said she’d have Dr. C call me with the app’t. And then again he never did. This went on for 6 months even after I’d contacted the patient advocate program at the hospital. I even went to the OTO dept. myself to set up my own surgical consult and they refused to make an app’t until after I had the embol. because they didn’t know what they’d be left with after the embol.Long story short, I was stone-walled and because my AVM had hemorrhaged and the skin on top of my ear was dying I was forced to have the embol. I had a 5 hour embol and he got 75% of it and said he’d do 1 more embol. and then I could have surgery. And then he didn’t do it again and went off to China for 3 months leaving me with an ear on which the skin slowly burned off and looked like a burned black marshamallow. It was the worst pain I have ever experienced. I kept insisting that I be allowed to see the AVM surgeon they kept telling me they had. Eventually I found out that there was no AVM surgeon and all the surgeons in their tumor board decided that none of them could do the surgery. I could have found that out 9 months earlier and then I would have put my time and resources into finding an experienced AVM clinic. The embol. doctor never spoke to me 6 months before the embol. or all the months afterwards. I’ve never sued anybody before but I’m suing him and I need some documentation or another AVM doc to say that that was not the proper protocol for AVM treatment. 2 months after the embol. the AVM started to re-vascularize because he never even completed the 2nd embol. This neuro-interventional rad. who said he was an AVM expert should never work on another AVM patient–ever and I think when we find such gross negligence we need to fight it so they can’t hurt any more patients. Can anybody help me? Kim
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
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
If I may make a suggestion - call one of the Mayo Clinics. They are very understanding. God Bless you…
Loretta
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
Maybe the best option is to find out the attorneys that have sued the places you have issues with and contact them.
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
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.
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
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/