Hi

Hi morgan

My daughter has to decide if she has gamma knife to treat her avm's. We are unsure of the side effects, would you be ok sharing with me what side effects you experience with gamma, this may help us make an informed decision as the consultant was very vague.

Thanking you

sue bilson ashleighs mum

Hi Sue. There is another sub-group here...

group/radiosurgerypatientsgammaknifeother

Bet the folks there can give you some good info. Good luck!

Hi Sue. The only side effects I had I believe was from the contrasts and Anastasia they used. I felt weak tired and down for the good part of 3-4 weeks post GK. I’m feeling good in the noggon department 4 months post GK now.

Hi Sue, I had gamma knife in July of 2005 ,After I had tenderness & in my head where the brs were attached I aslo had an angeogram that day so I was sore in the groing area.I don’t remember having any real bad side effects after I may have a litle sick but it didn’t last very long

hi.names lori my daughter tabby…Tabatha Rose has am avm…at discovery is was about 5cm all the way around,huge in her right frontal lobe…Gamma knife was her only option…it has shrunk to 2 cm by 3 cm by 1.5 cm in 2 years…her seizures have stopped…her behavior can be odd…think thats more due to size & location…i think gamme is safetest…no cutting involved…we go to atlanta…next wensday…jan 19th to see if we go another round…? Good Luck!

Hi Sue.    I had my gf in 2007.   Afterwards,  I was a little sore in the right side of the groin from the angiogram.    That lasted only about a week or so.    I was real groggy for only about a day and a half, from the anesthesia.  A moderate headache from the thing that was bolted on my head.   That only lasted about 2 days.   The doc gave me a pain med for that.     It was about 3 days after I had the GF, that I felt back to normal.   I just had a little discomfort in the groin but, nothing to complain about and it healed up.         Good Luck.

Hello,

I had the Gamma Knife procedure done on my AVM October of 2009 - very little side effects (a little hair loss in the directed spot). There was very little pain - the part that hurt the most was when they gave my forehead a shot to numb it before the screwed the halo frame to my head. But I was given a sedative before hand and I was feeling very relaxed. So, it wasn't a bad at all. It was the least invasive procedure, however it can take longer to be effective. I had mine done at the Mayo Clinic in Rochester, MN. I had a MRA / MRI this last October (2010) and there's a slight difference in the size of the AVM. I was informed it can take 1-3 years for it to shrink down.

I hope this helps and wish your daughter and you all the best!

Annette

Thankyou for all your replies, I am worried because I have heard that ppl can suffer memory loss behaviour changes and other problems following gk. I think this may be if the radiation causes the brain to swell at any time.

Suzy


sue,

morning....yes behaviral changes yes..my tabby has had some...AND YES BRAIN EDEMA IS A SIDE AFFECT....less than 20 % get it...but tabby did..at about 3 month marker her headaches worsened..they had her on heavy drugs till i begged for enough for another ct scan which ahowed her brain had shifted 7mm (pressure) edmea...gave her a simple steriod...she was outta bed in 2 days...even went to a prom on the 3rd after alomst 3 months in bed ....be presistant and observent....its all u can do ..ps and PRAY!
sue Bilson said:

Thankyou for all your replies, I am worried because I have heard that ppl can suffer memory loss behaviour changes and other problems following gk. I think this may be if the radiation causes the brain to swell at any time.

Suzy

Hello Sue, I had a Gamma Knife in the September 2008. Like Brett, I felt tied, week and down for about four weeks. I had to get around my cane for that long, but the strength came back.

I think that some side effects may depend on the AVM and its location. I had an AVM in my right parietal/occipital lobe which would cause me to have double vision for about four weeks.

I forgot to add that I was hospitalized for a seizure around seven months post Gamma Knife. The doctors at the hospital that I stayed informed me that the seizure was triggered by scar tissue from the procedure, and asked the doctors at the University of Maryland Medical Center (I was hospitalized at different hospital, Howard General for my seizure) had prescribed any anti-seizure medication to me after they had discharged me. I told them that I had given me anti-seizure medication a couple of day after the procedure, while I was staying there, but never prescribed me any medication. If you chose Gamma Knife for your daughter, maybe you could talk to the doctors there about anti-seizure medicine. In talking to some doctors, and some of my friends who are in the medical field, or studying to be in medical field, having seizures post Gamma Knife is normal.Yet, I am aware that not all who have Gamma Knife have seizures afterwords. I hope that this helps some.

Hi everyone,

We have been told they don't really want to do anything for ash untill she is 18yr old, to dangerous apparently, She has two AVM"s, one in the perital lobe and the other in the posterior fossa, they want to embolize the posterior fossa avm but the other is to small for this,, this may mean she then has gamma knife on both, I guess this can cause problems coz both areas can have side effects.. This is a real nightmare,, and so much for a young person to contend with.

sue

Hi Sue,

When my AVM journey began, I sent my films to various surgeons around the country asking for their opinion. I would encourage you to do the same. I enclosed a letter describing my situation and exactly what I wanted to know. Is the AVM treatable, and reccomended treatment plan? Is there any reason to wait until she's older, or should it be treated ASAP? If waiting is advised then are there any reccomended limitations to her lifestyle? I know that one's tough, but it's best to know if there is. Look around on this site for reccomendations for Drs, I don't know who the leaders in the field are these days. I see that you are in UK, but at least send to Mayo clinic here in US.



sue Bilson said:

Hi everyone,

We have been told they don't really want to do anything for ash untill she is 18yr old, to dangerous apparently, She has two AVM"s, one in the perital lobe and the other in the posterior fossa, they want to embolize the posterior fossa avm but the other is to small for this,, this may mean she then has gamma knife on both, I guess this can cause problems coz both areas can have side effects.. This is a real nightmare,, and so much for a young person to contend with.

sue