I had confirmed diagnosis of right parietal lobe AVM sized 2.7x3.2cm when I was 14 years old (1984), after having headaches and a few major grand mall seizures in class and hurt myself very badly.
At that time doctors recommended surgery, but my parents were against it. I have been taking 200mg Tegretol twice daily since I was 14 until today and that was able to control the seizures. Control was good as I had only minor partial seizures 2-3 times a week, which later reduced significantly. With the medication, I slowly forgotten about my AVM and lived normally like other kids, went to college, and started a software career and later a profitable business.
For the past 3 years, the partial seizures seemed to disappear, replaced with a mere feeling of aura that disappears within minutes. Other symptoms like headaches have also disappeared for past 20 years. Generally, my symptoms have improved over the past 25 years.
Now I am 51 and still on same dosage of Tegretol. For past 5 years, I am doing periodic follow ups and MRIs with 2 different neurosurgeons. The MRIs and scans revealed no changes in the size of the AVM (2.7x3.2cm) and no visible leaks.
One neurosurgeon with a private hospital actively pushing for treatment like gamma knife. The other neurosurgeon with the government hospital recommended to just monitor, since he thought that the AVM is dormant for the past 35 years and doing something may aggravate the AVM.
I am aware of the possible catastrophic prognosis of my condition, and I just don’t know what to do. Maybe the doctors’ recommendations are also based on the costs (or profit) of the treatments, and I would like to decide based on the risk and benefits of either approaches.
Hey BamJeff, Can I throw another consideration in there? In 2009, my doctor at Mayo told me that there were actually three main things to consider:
Does this particular method of treatment have more to offer than doing nothing right now?
Does doing nothing right now provide more opportunity for long term good health than doing something right now?
Does doing nothing right now and waiting to do something further down the road because the improvement in the medical technology is advancing way more rapidly than the spread of your condition. In other words, are treatment options improving faster than your condition? If so, then waiti.
Confusing? It was for me at first and I might have questioned it, but the more I thought about it, the more it made sense…
I will need to ask these questions during my next appointment. I was told the gamma knife procedure is low risk but the results may vary. I am concerned with the radiation side effects, and possibly the intervention causing old symptoms like headaches or seizures to come back, or even worse. On the plus side, I maybe able to get off the meds and engage in more rigorous outdoors activities.
If I wait, what are the possible upcoming treatment, as I was told the current generation of gamma knife treatment has improved so much for the past decade. Also the doctor told me the risk of brain AVM leaks grows as I get older.
If you don’t mind, can you share what did you decide and what is the outcome so far?
I don’t mind at all. I’m quite an open book when it comes to this. The problem stems from the fact that I am a VERY LONG book. It has been 43 years now that I’ve been battling this AVM thing. There have been times where we have aggressively acted and there have been other times where we have waited, predominantly based on the advice of our medical professionals.
Have I always made the right call in terms of when to act and when to sit back and trust in the patience of God and His wisdom? I have no clue. Have I made it through 43 years of battling this thing without any long term residual problems, no, I have not. If I did, I wouldn’t be on disability and having many other struggles. But if I had totally screwed it up, I probably wouldn’t be here. As it stands, I’ve seen all 5 of my kids grow up (the youngest just turned 20) and my first grandson is here and my wife and I just celebrated 36 years of marriage - not 36 easy years but we’re still here.
I don’t know if that helps, but I can guarantee that is the honest truth. I don’t know if it is the “right” decisions but I’m not going to look back at it and have any regrets.
Hope that helps,
TJ
P.S. In all seriousness, I think you just gave me the topic for another book, “Navigating 50 years of a Medical Condition - How in the World?”
My 35 year old son had 2 partial seizures and it was determined that he had a large AVM on his Parietal Lobe. The surgeon wanted to do a Several embolizations and then a craniotomy. I sent his scans to Barrow Institute and to Dr. Duke Sampson in Dallas. They responded with warnings that his AVM was too close to the Post Central Gyrus to do any surgery. Then my son went to Johns Hopkins where he was told that he might have severe complications if surgery was done. They recommended that he leave it alone. It has been eight years since then. My son has had seizures but no bleed. I like the response above. I suggest you go to a major teaching hospital and also send your scans to a few places. I have read the opposit, that as you get older, you become less likely to have a bleed. I will pray that you make the best decision. God bless.