Complications post Gamma Knife treatment for AVM

Hi, was just wondering if anyone has had similar experiences to what I’ll describe below which is what my wife is going through;

She has long history of migraine since childhood.

She started having speech problems early 2007, which resulted in visiting neurologist who recommended MRI scan.

In November 2007 she was diagnosed with AVM in front left part of brain, which sure enough controls speech.

She had gamma knife surgery in London in May 2008, and was told it would take a few days for pain to subside and then up to 3 years for the AVM to go. She has been put on Topiramate to control the migraine symptoms. 75mg pdy at first, now 100mg pdy.

The pain post GK surgery lasted weeks, including getting an infection at the ‘screw’ sites on the back of her head where the frame had been fitted.

She then had a few months of feeling ok…less migraines etc and we thought everything was ticking along nicely.

Fast forward to spring 2009 - wife getting more and more frequent and intense migraines again. Also getting ‘head-rushes’ when getting up from lying or sitting position. Has bouts of dizziness, feels spaced out and quite often nauseus. The headaches are very severe and debilitating now, to the point where my wife can no longer look after our young kids effectively if I’m at work.

She’s had follow up MRI’s (last one on 3rd Aug) which seem to show that the AVM is shrinking as planned (in fact faster than planned) but that an large amount of fluid has built up in her brain. As far as we know this is confined to the left hemisphere.

She’s currently been admitted to our local hospital, awaiting transfer to the specialist unit at Kings College Hospital in London, where they will probably do another MRI to see if this fluid has spread.

I was wondering if anyone else has had this type of symptoms a year or more post gamma knife surgery, and what was done about it to improve the situation.

I’ve been looking on the internet and wonder if its hydrocephalus but the internet is a wonderful but dangerous thing - you can find anything you want on here and then find the complete opposite story on the next page - so I want to get some real people telling me real examples !!

Anyway thanks for your time and I look forward to your response.

Hi Stewart.

Fluid build up can generally be caused by two things: 1) edema due to brain swelling as a result of trauma to the brain, or 2) hydrocephalus due to the ventricle back-up due to the ventricle’s inability to drain properly. The edema is generally controlled by steroids: predinose, decadron (dexamethedrone); the ventrical swelling by a shunt to help it to drain properly. (note: I may not have all of the details correct…I’m not a doctor, I only play one in my mind :wink:

My daughter had cyber-knife rather than gamma-knife, but other than not needeing anesthesia or having a frame screwed into the head, it’s basically the same thing…directed radiation is still radiation.

Because her head was held still via a mesh mask Lizzie experienced no pain, neither during the procedure nor after. Nausea wasn’t an issue for her, although they did give her zofran prior to the procedure just in case. And of course, there were no screw sites, thus no infections.

But over the next few months she did have spotty hair loss, but the headaches were significantly less and the nausea was non-existent. However, 9 months after the final treatment she had a massive hemorrhage ( in December of 2006) and ended up in the hospital and rehab hospital, with a tracheostomy to breath and a G-tube in her stomach for liquid nutrition (due to her non-ability to swallow with out aspirating into her lungs) and to administer medications for 6 months before she was stable enough to come home and be under our (my husband and me) medical care. During her time in the hospital she had to go several more brain surgeries. One was a craniotomy to repair a leak in the dura patch that was covering the large hole in her cranium from her previous craniotomy to relieve pressure from her hemorrhage. The put in a temporary drain in her 1st ventricle to help it to drain efficiently to remove cerebral fluid to help relieve pressure. When they tried to remove it, her ventrical immediately backed up again, so she had to have a permanent shunt placed between her skin and her skull, with a drain tube inserted through a drilled hole in her skull and into her ventricle. It has been successful in preventing any further hydrocephalus. However, as the radiation began to cause necrosis (deadening of the brain tissue) she began to have new brain edema, and she had to go back on steroids. In fact, she was on and off of steroids (mostly ON) for 2-1/2 years. Finally the edema got so bad that she started going backward in her physical rehab, and it turned out that more than half of her right cerebellum was dead from the large amount of radiation she had to have due to the very large size of her AVM. (They had been able to remove more than half of the 6.7 cm AVM, but that left 3 cm left that had to be radiated.) Last September she underwent another craniotomy/resection to remove almost all of her right cerebellum, which caused her to go back to where she was post hemorrhage…not able to move on her own, and she was in the rehab hospital for 3 months until she was stable enough to go home. And of course, she was on steroids for the entire time, including for another two months after she returned home.

We are grateful that they were able to determine the cause of her brain fluid increases each time, even though the the solution sometime caused more brain trauma, because without the new surgery she would have continued to have more necrosis and her symptoms would have continued to get worse and worse. I hope that your son’s doctors are able to find the cause of his edema and will be able to correct the problem. Good luck to you all.


Stuart, My son had Gamma Knife 2 months after your wife- July/08. In June/09 he started to experience some headaches, some successfully treated with Tylenol, some not. And it is important to note that my son very rarely experienced headaches so when he has one, we freak out a bit. He also has had 3 focal seizures, the first two, his right leg went totally paralysed with seizure activity (the twitching), the second one the same and the third one was a total body seizure but he was awake for it. He has had an MRI and we know he has brain swelling. At this point they are not treating the brain swelling unless it advances to necrosis and then he will need to go on steroids. They have increased his seizure meds and we are going to be seeing a neurologist. He has another MRI tomorrow night.

You must be so worried. I hope you have some help with your children.

How large was your wife’s AVM? My son’s is 3cm so I did anticipate that he would experience this brain swelling.
My thoughts are with you.


My brother is going thru a very similar situation right now.

How is your daughter now? Has she recovered? How is her quality of life?
Thank you and god bless.