hi everyone…question to my wonderful friends,has anyone,and im sure its happened,after almost three years post gamma,with little change to avm, get swelling just to show up.ive started having pain to my left side,nothing big.just some pain.started two months ago,hangs around most every day, so,went in for anothe mri a week ago one without contrast and the nuro said i have brain swelling and maybe a vain that is cloged with blood,hard to tellbecause it was without contrast,so going in agin for another with contrast and a month of steroids,he said i have two feeders,one still active as he can kinda tell, but not happy with the swelling,thats what the pain is from,just wonder why??and why now,after so long,any of you have this??
Hello Caroline .
We’re different in that I had embo , radiation and craniotomy BUT swelling happened to me several months post op as well as several years post op … Steroids worked nicely for me .
Be good to you . Take care of you .
Positive thoughts , loving prayers and hugs .
Marianne ,thanks so much for writing back my friend,ill start the steroids this week, just dont understand why after almost three years why swelling for no reason, I just had gamma three years ago, the avm is not swelling its the area around the avm that is swelling,the doc seems to think that one of the arteries is cloged, and thats whats making it happen,he wil do another mri,but with contrast,wish they would of done that the first time,just hate those machines,so how are you doing?? all good?? xxoo
My daughter’s NS said that the gamma knife stops having any further affect after 3 yrs. Are you considering further treatment? Just curious as to what your Dr. says to do now. I’ve heard of radiation necrosis…don’t know how many years later side effects can keep appearing. Kasey doesn’t currently have any pain or unusual headaches, but we realize that could still change. She goes in for her 3yr MRI on Friday. Sounds like you guys are in similar company. If it’s still there, which I have to think it is…for some reason…I will let you know what the NS advises. I’d be interested to hear what yours says also so keep us posted, okay?
Our doctor explained to us that the swelling that my son has is a “result of the breakdown of the AVM” and the by-product produced when this is happening. He said it was the body’s reaction MORE to this by-product of the AVM and not the radiation itself. DOes that make sense? IT does explain why the swelling takes place so many months afterwards.
So maybe that is good news for you in a weird warped way that maybe the radiation IS doing something to your AVM now?
One thing I do wonder is if doctors jump too fast to put patients on steroids? My son had extensive swelling and was NOT put on steroids because there was no necrosis present.
Anyway, I hope you can get some relief from pain. Take care, Caroline.
I only had my brain swelled (if it’s that correct) (as they told me) after the first bleed and the first surgery.They told me my brain swelled so much that it filled a room!Just that i have nothing to do with gamma-knife.
Thanks so much everyone for your replies to this email postingI love hearing everyones comments to this matter and see how we are so different or the same,im hoping like joy said its the break down of the avm,would be great news,from what the doc said,from the avm without contrast.the avm looks almost the same as it did three years ago,just a little smaller.smaller is good,:)and as sandie said,I wonder ,does gamma sto working after three years? im at three years now and just now have this swelling around the avm.its strange to have now,the pain is every day and almost two months,dont get it at all,looks like another mri with contrast is on the way next week!!Thanks again.this really means a lot to me to hear all your answers…i just dont know what to think rite now about this pain everyday,strange !
Our doctor also explained that the Gamma radiation destroys the DNA in the cell of the blood vessel that allows it to regenerate. He said that just like our skin, the cells of a blood vessel are constantly dying and regrowing BUT in a blood vessel, this process happens very very slowly and that is why it takes so long for the blood vessel to shrink, shrivel up and close off. I also believe that the older you are, the slower this process is.
So I DO think that the whole process continues after the 3 year period. We were told no angiogram until 4 years, I think because of the size of 3cm.
It is interesting how each person is told something just a bit different but I did think our doctors explanation of how it all works was really helpful in understanding the time needed.
keep us posted. your in my thoughts and prayers. lots of prayers. grace
bleeding occurs on or off due to symptoms mine tend to bleed when I have a lot of stress in my life and my blood pressure is real high.recently my blood pressure has been low and I haven’t had a major bleed sense 2008. Hang in there and I know what you believe in that prayer works for me it’s hard because you can’t think clearly you feel like you’re going to this by yourself but your not alone I get pain running through my entire body in my face in my head.feet arms legs running through entire body clearly.Caroline all I can share with you is hope.the headaches suck the pain hurts the treatments are intense Creator put us here for something I’m not sure what it is but I can tell by the person who you are the person you don’t give in you don’t quit you don’t give in to fight for another day that’s all you can do to be the strong laugh cry play be who u are. Have a great memorial we can talk to you later
Hi Caroline, I’m wondering if you got your MRI w/ contrast done yet. Your story is soooo similar to my daughter’s. Same location, same year, had gamma knife…wondering what’s going on 3 yrs. later. Kasey(my 19 yr old daughter) just had her MRI with & without contrast last Friday so we are waiting in suspense to see what it shows. Hers started off at 3.5x2.5 cm and also has a large vein(draining vein?), like yours. I have to agree with Joy…I have the same understanding that it has to swell in order to be irritated enough to shrink. Let us know what you find out. I hope the steroids are providing relief from your pain.
I am so sorry that you are having these problems but please don’t take what I am saying as the same as what is happening to you. The swelling inmy brain has decided to stay with me and it has been 6? years now. It really likes me. I did the round of brain steroids - gained weight so that i had a basketball head with hair all over it (constant facial waxing), a beachball body, feet that swelled so much nothing would fit etc, etc. I am not a big person normally and I am not exagerating in any way. Also the steroids break down the muscle structure in the body, they are not like the body building ones. I was in grat shape so it helped a bit but what did me in was that once my body weakened my brain decided to have a grand mal seizure and ripped everything, especially my left side that has not fully repaired yet even though I work on it. I didn’t have grand mals before. The steroids did nothing for the swelling and for me supposedly will go down when it feels like it. In the meantime I try to live as healthy as possible, etc. To make a long story short ( as I could put in a lot more) just be prepared for the side effects and do whatever you can to circumvent them some because it doesn’t matter how great a shape you are in and how well your eating habits are, it will do it to you. I have to go but I will try to check in later. My thoughts are with you.
hey everyone.I will go in on the 16th of June for my mri with contrast,rite now he has me on steroids and just changed my seizure meds from topamax to tegretol 100mg three times a day,any of you ever take this stuff,i have the pill form, can you let me know what you think? I will for sure tell you of my mri results ,as of now nothing has changed.same problems.the doctor said there should be no swelling this time post radiation ,so im a little worried,but lets just wait on the mri with contrast and let the steroids do its job!! Thanks for your support .I LOVE ALLL OF YOU!!!
Hi guys, My 3.6 x 2.4 AVM is obliterated after just 12 months post GK. Now I have swelling and a cyst that has developed near by. Since this post is over one year my I was wondering if any of you could give me some insight on how long the swelling lasted and how long did you need to take steroids etc? I went into ER with reel bad bad headaches caused by swelling and the steroids helped instantly to relieve the headaches. However I have been tapering off the steroids over 3 weeks and my headaches seem to be returning so maybe the swelling is coming back. I’m meeting my NS on Friday to chat about it but meanwhile any insight from you guys that have been through this would be much appreciated.
Thanks.