Arteriovenous Malformation 7yr old son Help!

[Louis-L]

    
      Re: Arteriovenous Malformation 7yr old son Help!
    


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Posted by ccf neuro M.D.  on May 15, 1997 at 21:57:13:

In Reply to: Arteriovenous Malformation 7yr old son Help! posted by Louis L. on May 11, 1997 at 13:01:29:

: I have 7yr son that has been diagnosed with a left thalamic AVM. It has not bled and was incidental finding. In July 1996 he was diagnosed with Burkett's Lymphoma in the sinuses and B-cell Leukemia. He recieved MRI and cat/scans of the head looking at the Burkett's. The radiologist studying the flims found the AVM. His Dr's advised us that his cancer was more critical and when finished with chemo and in remission, then see about the AVM. We finished chemo in Dec. 1996 and all follow up test to date show he is complete remission. He is neurological intact (unlike his father after all that we have been through) and has had not seziures or headaces associated with the AVM. The doctors here have recomended Gamma/kinfe or wait and watch. I would like to know if there is enough history on gamma/knife on very young patients to feel comfortable about not causing him problems 20, 30, 40 years later. Also since he has leukemia does that increase his risk from radiation as to cancer. Also I understand that there is a chance that not all AVMs bleed or cause problems. That with any procedure there runs risks. If we wait and watch and does bleed from the AVM, then what? Any help will be appreciated.
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Louis, What a horrible time the past year must have been for your son and your family. AVMs bleed at an average risk rate of 3-4% per year. The risks of surgery for an AVM depend on its size, its location in the brain, and whether or not the veins that drain the malformation empty out into the deeper or more superficial portions of the brain's venous drainage system. In your son's case, it would involve significant risk by these criteria, especially for the left thalamus, which, if destroyed by a hemorrhage, could result in the equivalent damage of the entire left half of the brain. Your concerns about increased risk from radiation therapy by gamma knife are quite valid. There is at least a two year delay before obliteration of the AVM occurs. Depending on if it surrounds the thalamus, the thalamus itself might also be irreversibly destroyed by the radiation. Delayed radiation necrosis from any form of radiation therapy can occur even as far out as 30 or 40 years, and there is not sufficent experience with   radiosurgical therapy like the gamma knife to know what the rates of such would be, as it has only been in the past 10-15 years that radiosurgery has been used for treatment of such malformations. I would strongly recommed that you bring your son's obviously complex case to an extremely experienced vascular neurosurgeon. I would recommend, in particular, the following individuals--- Dr. Robert Spetzler at the Barrow Neurologic Institute in Phoenix, Arizona; Dr. Roberto Heros in Miami, Florida; Dr. (I'm blanking on his name--- ask for the vascular neurosurgeon) at UCLA medical center in Los Angeles, or Dr. Douglas Chyatte, who is here in Cleveland at the Cleveland Clinic. If you are interested in having your son seen here in Cleveland, our appointment number is 216-444-5672 or 1-800-223-2273 ext. 45672. I would be certain that the lymphoma issue is completely cured/resolved before even thinking about aggressive treatment for the AVM, particularly one in such a critical area of the brain.