I am sorry that you have been going through all these difficulties. Stay strong, and hopefully everything will come out your way, sooner or later. I have a few points and questions:
I would encourage everyone on this site, to freely share the name of your Doctors and the Hospital you were treated.
It’s critical to have an open flow of information in this field. Unfortunately, medical science is not quite open to information sharing and statistical analysis compared to other fields. So, even though informal, having a forum here to share information about Drs and success/failure stories can immensely help. I am even thinking about collecting all this information and compile them all in one readable format that can be publicly available here.
I am an academic myself, and have studied numerous papers published in this field (disclaimer: my academic field is far from medical science). In the past 5 years, there has been several papers showing the ineffectiveness of embolization alone in brain AVMs. It’s still a great technique for AVMs of spine or other parts, but for brain AVM, almost all top neurosurgeons today believe that embolization is only useful to reduce the size (which has its own risks, blood pressure, etc.) and not obliteration.
Second opinions: this is always great, but most often it doesn’t change your decision. Unfortunately, very often doctors recommend a treatment that is closer to their expertise or the expertise in their team. For instance, a radiologist is more likely to recommend Gamma knife, etc.
In our case, we sought several second opinions (or you can say third and fourth). One from UPMC in Pittsburgh (Dr. Lunsford and Dr. Gross), one from Toronto General (Dr. Schwartz and Krings), one from Barrow Institute (Dr. Lawton and the former team of Dr. Spetzler).
All are top teams in the world, but they all had different opinions (particularly in difficult cases). So eventually, you have to go with your guts and trust one team.
I tell you what, if you can point me to some of those papers, I’ll take a rather concerned interest. I’m not sure I want to look but if there are several papers out there indicating that, it might be wise for me to know.
I’m sorry but site rules set out that we must only give positive recommendations about doctors or hospitals or clinics that we have attended, so I don’t think that gathering stats about these things or becoming a place where doctors feel the need to join the forum and start defending themselves is what we are about.
Where we have positive experiences to share, it is absolutely part of this site to share that with others. Where we have less than positive experiences, it is also ok to share with people, so long as we keep it anonymous, I think. The intent here being that we don’t stray into litigious situations or have to admit a bunch of doctors or hospital managers to the site… it could get to the stage where we can’t see the peer support for all the positive spin being put out by such people. We want to be a bunch of like minded people, not invaded by folk with a slightly skewed agenda.
Does that make sense?
I hope this comes across ok. If you have any concerns about this, do let me or any other member of the moderator team know.
Barrow does remote 2nd opinions. I found this to be useful a while back when I got 2nd opinions from as many places as possible. They don’t charge much at all either. Ironically, I did not take their advice as two other surgeons disagreed with it. It was valuable, nonetheless.
My craniotomy was performed by Dr. Pedro Caram, Sr, now deceased in 1973 at the Methodist Neuroscience Center in Houston, Texas. He was an excellent surgeon and very compassionate. I thank the Good Lord I was living in Houston at the time.
I went for several opinions pre and post stroke. I’m glad I didn’t go through embolization surgery in 1988. After my stroke, they went into further depths of angiogram and found another mass, so 1 embolization wouldn’t have helped much.
The most important thing is to follow your own gut/feelings/instincts.
Quick question, have you had rehabilitation for the balance issues? As far as the dizzyness that is accompanying it, does it feel like motion sickness?
I had in patient rehab for a week and then out patient twice a week for a few months, right after the surgery. Then about a year after the surgery I went back for vestibular rehab. A specialized physical therapy for balance and dizziness. Yes, there was a lot of nausea from motion sickness. It was very annoying, but the vestibular rehab did help with that a lot. I now need to do the eye exercises every day, but it’s worth it for me since it does make me feel so much better.
Was the avm in the cerebellum? That’s where mine was and that’s why so much balance and dizziness issues
Hope that helps
Also, I was feeling so sick in the beginning that I lost fifteen pounds. My doctor prescribed the scopolamine patch. They use it for motion sickness all the time. That did help and then as I got better I switched to taking zofran on just the bad days.
His is in the right basal ganglia and bled into the ventricle twice. He has been plagued with constant motion sickness for 6 years which just keeps getting worse and is on Scopoderm, Cinnarizine and Kwells. Physiotherapy helped with the balance itself but it hasn’t changed what’s going on in his brain. Hasn’t put on any weight in 4 years which isn’t good when you are only 13. After seeing your response I called his Physiotherapist and he’s going to test to see if this could be at least part of the issue. Thank you so much for responding. Even if it isn’t it and doesn’t help it was one more thing that could be ruled out. Fingers crossed though
