Side effects of radiosurgery to treat DAVF

This is my maiden voyage on the site.
Yesterday I had an angiogram at Mayo Clinic to get an up-close look at two fistulas on my left side near my ear, thus the whooshing sounds. We had hoped the radiologist would be able to use Onyx glue and close up the fistulas. He determined that was not the best option and ended the procedure. He was able to determine that there is no retrograde blood flow at this time, so that was good news. The radiologist conferred with my neurosurgeon following the procedure to discuss findings and treatment options. I met with the neurosurgeon and he recommended a radiosurgery treatment in an effort to eliminate the threat of a bleed. He mentioned several possible side effects: hearing loss, facial nerve damage and temporary hair loss at the target site. Coping with this condition has resulted in a steep learning curve, so I thought I would turn to folks who might identify with what I am going through. Could those of you who have had the radiosurgery with the gamma knife please let me know what kind of side effects you experienced and what the timeline for onset and duration has been? I will appreciate your input as I research this treatment option and it's outcomes.

I had gamma knife in December 2015. I did have a super duper headache as they finished (after a very long day) but they kept me comfortable, gave me morphine at the hospital, and sent me home with a script for Percoset( I only had to take one and then some Tylenol after) I developed very black and blue eyes for two to three days, but kept putting ice packs on my eyes and kept my head slightly elevated. They were so kind and loving and kept me informed every step of the way. I still was left with a bit of the AVM(which is near my brain stem) and am about to have another MRI to see the status. Don't be afraid of the procedure or side effects-I feel it is the safest option to prevent a bleed. Good luck!

Hi gypsy,

I've not yet had my gamma knife, but am expecting to have it in a month or twos time. My AVM ruptured last September and I've been told that gamma knife is my best chance of it not bursting again. I spoke to my dentist last week who said that any radiotherapy involving the head was bad for teeth because the salivary glands may be damaged. He suggested using a fluoride based mouth wash to moisten the mouth and said that salivary glands should recover 6 months after the treatment. Hope all goes well for you, there are many people on this site who know much more than me, I had never heard of an AVM until a few months ago when mine had already burst.

Hello Gypsy. I had Gamma knife treatment in July 2010 to try to destroy an AVM. The treatment itself isn’t particularly pleasant but it is more uncomfortable than painful. I don’t recall any adverse side effects other than a bad headache but I was able to drive home the next day. Unfortunately my AVM burst in September of that year causing severe brain haemorrhage and I was lucky to survive critical care . I was subsequently in hospital for 3 months.My neurologist insisted the bleed had nothing to do with the Gamma treatment and I suppose I will never really know whether that is true. The treatment was successful in the sense that it killed the AVM but I will be permanently disabled and given the choices again I would still go ahead with the treatment. Your problems are completely different and I wouldn’t worry about the procedure itself. Good luck

I had gammaknife treatment in June 2014. So I am a year in my treatment. I really didnt have any side effects very soon. The day of was very uncomfortable a little painful but tolerable. I had a great support group. I didnt get any pain med at discharge I didn’t need it. I was discharged the same day no complications. I was out of wrk for 2 days. At that time I was a new mom to a 4 month old so I needed the rest. The side effects started months later. I have a some visual changes nothing to drastic but noticeable. I have had miree headaches than normal but I can tolerate them. Other than that everything went great. I get a MRI every year and my AVM this past Dec has shrunk tremendously. I am thankful that I did the gamma knife. It was a good choice I think. Good luck

Hello,

I had gamma knife in August 2014. For me the worst part was the angiogram before hand. You’ve already had one, so you know what to expect, only this time you’all be fitted with a frame. That part is uncomfortable, but you get used to it after a while. My frame was on for around 8 hrs, the anethetist was new and failed to get the needed positioned correctly for one of the bolts - that hurt immensely and was a sharp pain, but as I said above the pain settled. The pressure when the frame is fitted is unlike anything I’ve experienced, that subsides too.

I was fortunate enough not to have that many symptoms, it will depend on the position and your unique circumstances. The procedure itself was the easiest part of the day. The machine was soundless and the team at Sheffield piped in music from my iPod. I took three days off work, but don’t rush back. The situation clouded my head more than the op itself.

Good luck!

Kay, thank you for the heads up concerning the possibility of salivary gland impact. I will take your dentist's advice if I have any problems of that sort. It sounds like you and I could be on a similar timeline. If I proceed as my neurosurgeon suggests my procedure would be the end of March. Good luck

Leonard, thank you so much for sharing your experience. The information you provided reinforced my perception that the procedure itself is not painful, but the apparatus may make it uncomfortable. I was so sorry to hear that you experienced a bleed in spite of the treatment meant to prevent such an event. I wish you well.

Hi im 16 years and then 14 years after 2courses of stereotactic radiotherapy at Sheffield. I found the treatment good and straight forward but of course a bit scarey but im now avm free so its been worth it. As to side effects my epilepsy got worse with an increase in seizures for the first few years but has settled in the past couple of years. My memory has also got really bad. Much worse than it ever was before treatment but my avm was in the temp lobe. Hope this is helpful and i still would have had it done if i had know these outcomes before.

Don, congratulations on having a good MRI report in December. Are the vision changes you have noticed correctable with glasses? I am glad the headaches are manageable. It has been my understanding from various things I have read that some side effects do not show up immediately, but may show up months or even years after the procedure. Your experience seems to support the fact that sometimes they show up months later. Thank you for taking time in your busy day to respond to my question. As mother of 5 and grandma to 6 I know that toddler is into everything. Wishing you all the best.

Michelle, thank you so much for sharing your experience with me. All information helps me to learn about this medical condition, treatment, and outcome. I am a retired teacher, so I have lots of time to research, but also lots of time to ruminate. I'm trying very hard not to let this condition become the focus of my existence. I don't want to be one of those senior citizens who can only talk about their ailments.
Glad to hear that you did not experience any side effects and that the frame seemed to be the worst part of the whole experience.
Good luck as you continue your healing process.

Cindy, thank you for sharing your recent experience. I wish you all the best as you continue the healing process.

Harley, thank you so much for sharing your experience. All information helps me to make educated decisions as I cope with the DAVF and determine the best treatment option for me.
Wishing you all the best.

I didn’t have the gamma knife I had to have surgery and now have to take seizure medicine every day for rest of my life because of scarring… I also have memory issues

Lisa, thank you for sharing your experience. I'm so sorry that you have experienced such dramatic side effects from your treatment. Wishing you all the best.

Hi Gypsy,
My daughter had Gamma Knife for an AVM on her brainstem on October 25, 2013. That day she had an angiogram, MRI and CT scan. She had a lot of anxiety so they helped her through it all with meds. She really had no side effects but a little soreness at the points of the pins (for the frame) and some numbness on her scalp which eventually went away. When they took the frame off the release of pressure gave her a headache but some Vicodin helped with that too. I am extremely happy and grateful to say that at almost exactly 2 years her MRI showed that the AVM was GONE!!! One very relieved mom (and whole family) here. We live in Michigan and had the most wonderful Gamma Knife team. We appreciated them so much that when we'd return for MRI's we brought them cookies! I hope that you have a good experience with Gamma Knife (which I really wish they would change the name of since there is NO knife or cutting involved). Saying a prayer for you now.

AVMMom, thank you so much for sharing your daughter's experience. What a wonderful outcome to know that her AVM is gone. It's one thing for me to be going through all of this,but I can't imagine how I would feel if it was one of my kids or grandkids. It sounds like your daughter had some temporary discomfort with the actual procedure, but no long term side effects. That sounds good to me.
Best wishes as your daughter and family move into the future with no AVM in sight.

Hi gypsy
I do understand your concerns. I was faced with similar thoughts and concerns and advice a year ago. My options were embolization to control the bleeding immediately followed by surgery or radiotherapy alone. I decided to do radiotherapy. My procedure was done 1/27/2015. My hair fell a week later at the place where radiation entered my head. The size of a big egg on the right temporal side but nowhere else. The hair came back slowly 3-4 months later. By summer no one knew that I had the procedure done. I have not have felt anything else that I can really say for sure is due to treatment or the AVM. It was hard for me to decide listening to all different opinions and potential side effects but once I decided I felt good about it and after the treatment I tried to forget and move on. I thought I did what I could and that was it.
I just had my 1st annual check up after the radiation. My AVM got smaller by more than 40% since the treatment (from 2.8 to 1.4 cm diameter). Good luck to you whatever you decide.

Thank you. It was really tough. She was 17 at the time (I forgot to mention that).This is a great site for getting information, having a discussion or just for getting support. Sometimes it's scary because every person, every AVM and every situation and experience is different. Stay strong when you can, cry if you need to, and try to be as positive as you can! Best wishes and Speedy Healing!

I’m probably not the right person to ask here but I had laser surgery in England, for my AVM, 20 years ago. The surgery wasn’t successful in that it didn’t shrink the blood vessels and caused my right side to become semi paralyzed. HOWEVER, that was 20 years ago and you have the best doctors (Mayo) now so I would be confident in what they advise and have faith that the surgery will be a success. To add to my story, I eventually had a craniotomy at Mayo Clinic which was successful. Wish you the best.