“Brain Avm and Radiation Necrosis ”
I’m a 23 year old from the Uk undergoing Gamma Knife Surgery for my large right sided AVM.
So originally it was discovered I had an AVM back in Sep 2021 after a random and first episode of sensory changes/ first seizure. This included weakness and numbness in my lips, down to my left hand , arm and legs. (Only left sided). I was then rushed into hospital with severe headaches , nausea, sickness and numbness where a ct scan showed I had an AVM since birth. I was reffered to a specialist hospital to discuss whether gamma knife surgery was appropriate in which they decided yes. So upon referral, angiograms and further imaging it was shown to be quite large AVM which is above 5cm not sure on the exact size but the largest they have worked on which means surgery and other options are not safe and pose a higher risk. So the treatment is now being done in 4 stages so far I have had two treatments and a further two with 8-10 week intervals in the hope of obliterating the AVM .My AVM luckily has never ruptured, bled or suffered any sort of haemorrhaged. I had my first treatment and had side affects such as brain edema which has been 6/7 times and been prescribed on dexamethasone (steroids) to reduce brain swelling which seems to constantly be returning once my steroids finish. However I have had my second treatment now and again I have suffered brain swelling in the same area as the ct scan shows no difference however I have now also suffered from a stroke/ neurological deficit and beein diagnosed with radiation necrosis. Can tell me if they have undergone something similar and what the best course of action is to take as I was aware of the possible risks and side affects but suffering a stroke/neurological deficit whilst undergoing GKS is this normal ? I am now being told to come off dex and possibibly start avastin as my swelling is causing my left sided weakness in my hand and leg I am literally getting weaker and stiffer day by day what should I do ?
So originally it was discovered I had an AVM back in Sep 2021 after a random and first episode of sensory changes/ first seizure. This included weakness and numbness in my lips, down to my left hand , arm and legs. (Only left sided). I was then rushed into hospital with severe headaches , nausea, sickness and numbness where a ct scan showed I had an AVM since birth. I was reffered to a specialist hospital to discuss whether gamma knife surgery was appropriate in which they decided yes. So upon referral, angiograms and further imaging it was shown to be quite large AVM which is above 5cm not sure on the exact size but the largest they have worked on which means surgery and other options are not safe and pose a higher risk. So the treatment is now being done in 4 stages so far I have had two treatments and a further two with 8-10 week intervals in the hope of obliterating the AVM .My AVM luckily has never ruptured, bled or suffered any sort of haemorrhaged. I had my first treatment and had side affects such as brain edema which has been 6/7 times and been prescribed on dexamethasone (steroids) to reduce brain swelling which seems to constantly be returning once my steroids finish. However I have had my second treatment now and again I have suffered brain swelling in the same area as the ct scan shows no difference however I have now also suffered from a stroke/ neurological deficit and beein diagnosed with radiation necrosis. Can tell me if they have undergone something similar and what the best course of action is to take as I was aware of the possible risks and side affects but suffering a stroke/neurological deficit whilst undergoing GKS is this normal ? I am now being told to come off dex and possibibly start avastin as my swelling is causing my left sided weakness in my hand and leg I am literally getting weaker and stiffer day by day what should I do ?
Male | 23 years old
Medications: Kepra, dexamethasone
Conditions: Avm
2 Answers
Dr. Juan Torres-Reveron
Neurosurgeon
Your case is quite complicated. Radiation necrosis is expected after treatments like gamma knife and can be quite distressing as the symptoms are worse than the original disease! In general, the treatment is steroids but those can't be used long term due to significant side effects to your body. Avastin is a reasonable medication as well that can help the symptoms. In some cases neurosurgery is consulted to remove the affected area but in the setting of an AVM this can be quite complicated as it can lead to significant bleeding. Laser thermocoagulation is another technology that has potential to treat radiation necrosis but is offered in selected centers. You can ask your surgeon whether that is an option if avastin fails.
Your situation is complex. Gamma Knife SRS has been studied extensively and is known to be a standard of treatment for an AVM, but it is not without risks. Edema is a known risk of the procedure, and is managed as you described. Based on a number of factors, your team has decided that the risks of GK treatment are less than open surgery. Your condition should be discussed in detail with your team so they can discuss your treatment options
