Complications one year after SRS

I have an update worth mentioning. For all considering Stereotacticradiosurgery (SRS), make sure you talk through all worst case scenarios with your Neurosurgeon prior to radiation treatment. I had SRS in January 2010, and within 6 months my AVM occluded, which is good. Unfortunately, one year later, i am now having complications with brain swelling which has left me with loss of motor function on my side. i was hospitalized over Christmas 2010 and in Jan 2011. I am discharged and at home on a steroid regimen which is proving to be working and it looks like the verdict is no permanent motor loss. My doctors at Duke have been taking great care of me and i hope to be back at work soon. I wonder if I was a little too naive in the process. Just because you can treat something.....does it mean you should? I was told that i am the first patient to have complications on Duke's Novalis TX. Radiation to the brain is traumatic and SRS keeps radiating long after your first treatment. Talk to your Neurosurgeons about what happens with brain swelling and the reality of loss of strength or in my case, complete loss of function. i am on decadron (steroid) and all is looking up. i will keep you guys updated and wish everyone good luck in the new year.

Caroline

Caroline, Thank u for the very informative post, however, I am very sorry that u had to experience this firsthand.:frowning: I think research is key, especially if the avm has not ruptured. Best wishes in ur continued progress and eventual obliteration:) -GK

Hi Caroline. Thank you for the update. I am so sorry it was not a positive one. Perhaps this post will help someone else. I will be praying for you!!!

Hi Caroline. Sorry to here about the swelling and the issues it causes. The good news is swelling is temporary. I was well informed about this both by doctors I talked to and my own research. I remember during my 1hr gk session thinking about the swelling that may happen later on. My doc said in my case it would be a 2% chance of it being a problem me. He also said after the 18 month mark post gk chances are pretty slim of getting swelling. I would have to agree with myself it’s a small price to pay if it dose the job in the long run. I’m sure it’s no fun on steroids and hope you can come off them soon. Please keep us posed. Take care.

Hi Caroline, I’m waiting to av gamma knife very soon and to be honest I am petrified. I first had surgery to remove my avm in march 2010 and I came out if it quite well with only a few side affects. It wasn’t a full removal of the avm as it was in an awkward place. They said it was slow growing if it ever grew at all. But since my MRI I had done in June 2010 it has grown and I’ve chose to go for the gk. Mine never ruptured and I’ve bin told that gives me a better chance of my brain not swelling. But after reading peoples progresses and side affects from the gk it frightens me… I’m just gona try and keep positive that it all goes well. Not just for me but you people out there who are going thru the same thing…:slight_smile:

Hi Caroline. There is a sub-group on here...

group/radiosurgerypatientsgammaknifeother

I am still praying for you!!!

Hi Caroline, I'm waiting Gamma Knife very soon too and like the others, I am terrified. I have read about the swelling and that it can occur months after and that scared me enough, but a year later is awful. My AVM is in the part of my brain that controls the movement in my right side. They have told me because of how big and deep it is, to remove it would most likely leave me permanently disabled, they said a 1 in 5 chance. Gamma knife is my only option.

Wendy - you were told because it never ruptured there was less chance of swelling - thats encouraging, mines not ruptured either.

Rebecca - I know where you are coming from with your son. My daughter has had surgeries, needs more, has really intense physio, bordering on torture... we seem to put her through so much, she's only 4 years old, but the hope we hold on to is that it will make life easier for her in the longterm. I hope all works well with your son.

Thank you Rebecca, we all have an hereditary genetic fault with collagen, Ehlers Danlos Syndrome, which affects all connective tissue throughout the body, we all have issues with eyes, gastric systems and joints. I have my son from my previous marriage who inherited my faulty genes, then Olivia’s dad is my second husband who, by some strange twist of fate, has the same condition. Therefore Olivia inherited mine and her dads faulty genes and is much worse than we are. Her joints dislocate frequently, she wears a special suit to hold her together, she has a hinged knee brace for her left knee to stop the head of the tibia popping out the side of her knee, but her condition meant her hips had dislocated before she was born, therefore they never developed properly, she had no hip sockets at all. She’s a part time wheelchair user, can’t walk for more than 5 minutes without severe pain and chronic fatigue, but in spite of it all she’s a happy girl and nothing gets her down! She’s due Bi-lateral femoral and pelvic osteotomies in May… I am hoping I’ve had my Gamma knife by then!



Rebecca Lamb said:

Lena,

Whatever your daughter is going through that requires multiple surgeries, I wish her and your family the best. It is amazing though how resilient their little bodies are, if we go through even half of what they do..we're disabled lol!

as for the terrified part (in regards to GK) It is more likely to hear the bad side of it than the good. That's a habit of humans, we are more likely to share our woes than our wins. Truth be told, I've heard a fair amount of positive stories and outcomes in relation to the "horror" stories. The only thing I can suggest to anyone and everyone going into any procedure to rid themselves of these pesky buggers is; Go into it with positive thoughts! Tell yourself that no matter what you have to face as a result you will overcome it. I think if you head into it with defeat in mind, then defeat is what you will get! So I will overcome whatever it brings me and so will YOU!

Lena Court said:

Hi Caroline, I'm waiting Gamma Knife very soon too and like the others, I am terrified. I have read about the swelling and that it can occur months after and that scared me enough, but a year later is awful. My AVM is in the part of my brain that controls the movement in my right side. They have told me because of how big and deep it is, to remove it would most likely leave me permanently disabled, they said a 1 in 5 chance. Gamma knife is my only option.

Wendy - you were told because it never ruptured there was less chance of swelling - thats encouraging, mines not ruptured either.

Rebecca - I know where you are coming from with your son. My daughter has had surgeries, needs more, has really intense physio, bordering on torture... we seem to put her through so much, she's only 4 years old, but the hope we hold on to is that it will make life easier for her in the longterm. I hope all works well with your son.

Thank you Rebecca, sadly thats not all of what we have coped with. I had 2 boys from my first marriage, my eldest lost his battle against Neuroblastoma - an aggressive childhood cancer - in 2002, the morning after his 5th Birthday. My second husbands son lost his battle against Leukaemia at 16 months of age in 2001. Thats how we met, through the boys illness. We have a deep understanding of each others pain and also the same genetic fault! So much in common!



Rebecca Lamb said:

Wow Lena, it sounds like your family is dealing with much more than you all should be. My prayers and thoughts will stay with you all! And I will pray for a successful surgery for both you and your daughter! Keep me updated on how things go.

Lena Court said:
Thank you Rebecca, we all have an hereditary genetic fault with collagen, Ehlers Danlos Syndrome, which affects all connective tissue throughout the body, we all have issues with eyes, gastric systems and joints. I have my son from my previous marriage who inherited my faulty genes, then Olivia's dad is my second husband who, by some strange twist of fate, has the same condition. Therefore Olivia inherited mine and her dads faulty genes and is much worse than we are. Her joints dislocate frequently, she wears a special suit to hold her together, she has a hinged knee brace for her left knee to stop the head of the tibia popping out the side of her knee, but her condition meant her hips had dislocated before she was born, therefore they never developed properly, she had no hip sockets at all. She's a part time wheelchair user, can't walk for more than 5 minutes without severe pain and chronic fatigue, but in spite of it all she's a happy girl and nothing gets her down! She's due Bi-lateral femoral and pelvic osteotomies in May.... I am hoping I've had my Gamma knife by then!

Rebecca Lamb said:

Lena,

Whatever your daughter is going through that requires multiple surgeries, I wish her and your family the best. It is amazing though how resilient their little bodies are, if we go through even half of what they do..we're disabled lol!

as for the terrified part (in regards to GK) It is more likely to hear the bad side of it than the good. That's a habit of humans, we are more likely to share our woes than our wins. Truth be told, I've heard a fair amount of positive stories and outcomes in relation to the "horror" stories. The only thing I can suggest to anyone and everyone going into any procedure to rid themselves of these pesky buggers is; Go into it with positive thoughts! Tell yourself that no matter what you have to face as a result you will overcome it. I think if you head into it with defeat in mind, then defeat is what you will get! So I will overcome whatever it brings me and so will YOU!

Lena Court said:

Hi Caroline, I'm waiting Gamma Knife very soon too and like the others, I am terrified. I have read about the swelling and that it can occur months after and that scared me enough, but a year later is awful. My AVM is in the part of my brain that controls the movement in my right side. They have told me because of how big and deep it is, to remove it would most likely leave me permanently disabled, they said a 1 in 5 chance. Gamma knife is my only option.

Wendy - you were told because it never ruptured there was less chance of swelling - thats encouraging, mines not ruptured either.

Rebecca - I know where you are coming from with your son. My daughter has had surgeries, needs more, has really intense physio, bordering on torture... we seem to put her through so much, she's only 4 years old, but the hope we hold on to is that it will make life easier for her in the longterm. I hope all works well with your son.

Hi Caroline,

I am sorry to hear of your experience. My 10 year old daughter had a bleed in July of 2009. Her AVM is in the left thalmus basilganglia region so surgery or embolisism wasn't an option. She under went Sterotactic Radiosurgery in Octoer 2009 at UCLA. One year later it has gone from a 5 to a 3. After the SRS we had three scares with severe headaches in Decemeber 2009, February & March 2010. Three CAT scans later there were no other bleeds however I was beside myself with worry since we had fired our neurologist since she missed the AVM when my daughter was diagnoised with Dystonia and failed to order a CAT scan three months prior to the bleed. I felt like I had no where to turn. I found a new neurologist here in Orange County, California, Dr. Diane Stein, who put my daughter on Omega 3's and Vitamin D 3 to reduce any swelling in the brain due to the SRS. I am happy to say we haven't had any more scares since then. Perhaps talk to your doctor about supplements to help support your body thru this. Many blessings.

Diane C.