Radiosurgery side effects

Hi people,
I am writing to ask your opinions regarding radiosurgery side effects. I have read some posts that most of people can go go work the next day after radiosurgery and that it’s very unlikely to cause any side effects.
However, my husband’s case is “a bit” more severe. He has had his first bleed on 31st Aug this year which was followed by a second bleed the next day. After this huge stroke he stayed in induced coma for about 10days and after that he was still not quite conscious.
Since the bleed was so huge doctors did not give ANY hope he would survive few days, but he’s now not only survived but starting to recover (responding, moving, obeying commands). Therefore they are considering a radiosurgery, which however doctors have mentioned is again with risks due to the location and the size of the AVM (it bled in the thalamus, but part of it is in the brain stem). They have considered embolisation or normal surgery but said it’s too risky and radiosurgery is the only way to go.
So I am wondering whether it is maybe less risky just to let the AVM be there or to get the radio surgery done. (Again I have read cases where it can bleed during the radiosurgery or afterwards and doctors said there are risks such as deafness or blindness after the AVM is gone)
I would like to hear your opinions about this case, maybe you have similar experiences with good/bad outcomes and wouldn’t mind sharing them with me.

Hi Liepa3,



Did your doctors tell you how the risks of treatment and not treatment compare, in terms of percent-risk and in terms of the type of damage that can occur? The risks differ from person to person based on the size, location, and history of the AVM. There’s a large and scary risk with any brain procedure, but my husband decided to take the risk in the care of an excellent surgeon rather than to live with the chance of another bleed on any given day.



Keep in mind that even a “stable” AVM causes trouble: It “steals” blood from the rest of the brain and reduces brain function overall, even if it doesn’t bleed. Active AVMs can also recruit more blood vessels (feeders), which is how they grow larger. Along with the possibility of another bleed, these are some risks of not treating the AVM.



Of course, it’s up to you and your husband to decide on a course of action, but you should feel like your doctors are trustworthy, that they’re experts with AVMs, and that they’re giving you guidance. If not, consider a second opinion. Some doctors will accept and review medical records by mail.



Keep us posted on how your husband’s doing! Progress is very slow at times, and waking up this soon from a big stroke is a good sign.



-JH

Welcome and you are facing some tough decisions…



As far as the risk DURING the radiosurgery, my guess is it’s really really low. The bigger risk would be reaction of the AVM and the good brain function. When it’s in a critical area, the risk is much higher of losing function.



For us, Chari had a headache for a short time after the radiation and was a little tired. For her, going back to work soon wasn’t a big issue.



She had Proton Beam Radiation in 92 at a lower dose (we found out later), which didn’t change anything. She did embolizations, then a crani to fix an aneurysm, the PBR again. The combination of all that made her HUGE initial AVM small enough to be surgically removed safely. It was a near 10 yr process, as PBR is slow to act.



For her, the PBR had no negative effects and recovery for her was less than a few days.



Letting it remain also carries risk in the form of another bleed.



Whatever decision you and he come up with will be the RIGHT decision for you.

Ron, KS

A good experience – I had radiosurgery 20+ years ago!! My AVM was around the brainstem and it was inoperable. I had two bleeds, the radiosurgery stopped my AVM from hemorraging again, but it couldn’t help with the damage already done. I am deaf in one ear, but that is not from the radiosurgery, it was my first bleed. I learned to deal with my side effects – it is hard. . .
But I have had 20 years – and counting!!

My thoughts and prayers are with you!!

Hey JH,

thank you for your reply, and some useful info like the "stealing"of blood from other parts of brain… Yes, aparently it’s best to get rid of the AVM, but I’m just scared the procedure will cause more damage than the bleed has already done.

Doctors are only in process of considering the radiosurgery so not sure when that would be, maybe before the new year, so they haven’t really discussed with us the risks in percentage.

Hi Ron,

well it’s hard to say whether my husband is going to get Proton Beam Radiation or Gamma knife surgery or something else since the doctors have mentioned radiosurgery so far… As the right time for surgery will be coming closer they hopefully will discuss this in more detail.

Anyway, it’s good to hear that radiosurgery does not carry that much risks, because it was the thing I was scared about.

Thanks

Hi Diane,

Oh wow, your situation sounds quite similar to my husband’s. He also had two bleeds, and I’m not quite sure whether he can hear from both ears since he’s unable to speak so far, but sometimes I think he can hear from one ear better than the other.

I understand that the radiosurgery can’t fix the damage that the bleed has already done, I was just scared that the radiosurgery would not cause any further bleeds during or after the procedure.

So now your AVM is completely gone? Was it removed only by radiosurgery or did you have other type of treatment afterwards?

Thanks for the prayers and support :slight_smile:

Hi – I had surgery a few months before the radiosurgery and the doctor removed what he safely could. I had the radiosurgery at Stanford University Hospital in CA because Minnesota did not have that procedure. By the time I was suppose to return for my second session, MN got it so my insurance company would not pay for me to leave the state, so I started to go the the University of Minnesota. The doctors were able to remove the rest of the AVM and I did not need another radiosurgery!!

I have been fighting with a few side effects, mainly the right side of my body is weaker, thus my eye does not blink on its own, so now I have a weight in my eyelid to help contol the dryness. I get cold easier – don’t realize it until it is too late – then the pain sets in!! My right leg doesn’t always do what it is suppose to!! One step forward, three to the side! Walking on uneven surfaces (the lawn, gravel, etc,) or going up and down steps. I need a handrail or somebody’s arm!! When my son was younger (and still does now) he will come take my arm and help me!! The side effects can be – well – depressing! But I live with them and do my best – it is better than the alternative!!

My problems are from the AVM and the bleed – not the radiosurgery!

God will be watching over you, too!!

Hi Diane (and Liepa3), Firstly, I am going through the decision process as well and am trying to do my research. Everyone is different, so the reaction and effects will be different as well. My thoughts are with you and your family through all of this.

Diane, I am actually from MN and have been going to the University of MN Med Center. What doctors did you see through your radiation? How did you feel about everything? Where did you have your initial surgery?
Hope you are well!
Jenn

My son had a bleed 3 years ago, he had radio-surgery last year which works over a twelve month period. I was worried sick but was told he would most definitely have another bleed so didn't really have a choice. Straight after the radio-surgery Ethan was demanding subway!!!! the day after we went home and he played out as usual. he had a bit of a head ache nothing serious though. we were told of the side effects but fortunately Ethan hasn't yet suffered any (God forbid). Ethan had an MRI last week and the AVM appears to be gone. We wont know if it's all gone until next year when he has an angeo...but the doctors said they are really happy with the results. I would recommend the gamma knife to anyone. I understand everyone's different but i'm so glad he had it. If you have any questions I don't come on here very often you can contact me on ■■■■■■■■■■■■■■■■■■■■■■■ xxxx Good Luck!!!

not twelve month 2 year..x