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AVM Survivors Network

Radiation Treatment


#1

I know I can't really ask anyone to make my decision but I was hoping some of you have words of wisdom or if you're in a similar situation or have had the treatment.

I'm a 22 year old female who has been walking around with a grade 5 AVM for the last 17 years of my life. (Frontoparietal Lobe)
Only recently was I officially diagnosed in 2012.
I've had 2 hemorrhages in the last year and a half - luckily they were both small.

My only treatment option is Gamma Knife Radiation.
They say its a 50% chance that it will work or it may cause problems that I don't even have now. They say that by the time I'm 30 my chances for a large hemorrhage are extremely high = paralysis or death. Tough call.


Relating with people in the real world isn't easy. They usually just say "Well everyone dies someday and no one really knows when" or "I can get hit by a car tomorrow" or don't know what to say at all.

All the best, looking forward to hearing about your experience! (symptoms, noticeable changes, procedure, lifestyle etc)


#2

I understand how you feel. I was diagnosed with an AVM when I was 20 after it ruptured and caused and aneurysm. I am 31 now and have had 2 Gamma Knife treatments and another aneurysm on new years eve of 2013. I am still alive and recovering from my last Gamma Knife in July. It is hard and very scary. I often worry about my long term health, but the Gamma Knife is a good procedure and there are people here who know how you feel. I certainly do. I was always healthy and played sports my whole life and now I struggle with seizures and always worry I will have another aneurysm because I am at risk of a stroke, so I really understand and offer you my friendship. I hope this has made you feel a little better and just take it a day at a time. If you wish to talk more feel free to reach out to me. Good night and God bless.


#3

Hi Yaanachka, I totally understand your situation. The only advice that I can give is - believe in your gut. Don’t go by what people say. Don’t let any negative thoughts come to your mind. Do what you think is best for you. And most importantly, leave rest to god. He will watch over and protect you.


#4

I was in the same position about whether to have gamma knife. My AVM had not ruptured but it’s the fear that it might. I wish I had never found out to be quite honest. Anyway after nearly 3 years of indecision I have had it done. My reason for this is due to my kids. One of them had been having headaches and nosebleeds (a symptom of an AVM as you probably know). Anyway both me and my husband knew that if our son had one I would have wanted him treated and so my decision was made. If I was sure that I would want them treated it made sense to treat myself. I too worry about deficits from the radiation but believe that life throws you curve balls for whatever reason! I can’t say how it is yet as I only I had it in June so radiation hasn’t kicked in properly yet! I do now get very tired though. I’m sure you will make the right decision for you. I do have days when I think maybe I should have left it alone but I am concentrating on getter better and looking forward to celebrating when it has gone with a big party or trip of a lifetime!! Sending healing prayers to you xxx


#5

Hi Yaanachka,
I cannot offer any experience of brain AVM's as my 3 are/were inside my spinal cord. I had to seek cyberknife radiation therapy for 2 which could not be embolised. My life, like all those on this site has changed and been affected to lesser or greater degree by these rare conditions and it seems like an uphill battle to seek knowledge and guidance from some medics who may have little experience or restricted opinions.
It can be depressing, I know all about that, but, from my experience, take the help from anyone who can, talk about it and how you feel, let those treating you know too as they are often not as clever or as experienced as they might lead you to believe...
Everyone's situation is unique, after radiation my mobility has worsened, but it does take a long time to destroy the blood vessels that surround the cord nerves, but i have hope I'll get better.
If, not, I hope my condition will stabilise. If I'd not had treatment, for sure I would now be in a wheel chair...My wife and kids make me carry on, their support and humour and taking the piss out of me keep me from feeling sorry for myself make all the difference.
I'd say 'go for it' indecision can be worse than no decision at all.
Best wishes from the UK...


#6

Hello, my best advice is to not rush into any decisions until you assess all of the options and exactly what is best for you. I have recently had an embolisation for a dural AVF which I feel I rushed into because I just wanted it ‘all over with’. Within finding out about it and having the embolisation was only about 2 weeks. I was explained the risks but you never feel like it’s going to happen to you. Following the embo, I have right sided facial paralysis, difficulty swallowing, unable to speak and nerve damage to my upper back. The fistula is still open and they are recommending another embo. I am 29 years old and I’m not really coping with all of these side effects.
I really do regret my quick decision to go ahead so I do just urge you to think of all of the possible outcomes from going ahead or not going ahead. Gather as much information as possible and get a second opinion.
Wish you all the best of luck, this can’t be easy.


#7

Hi, Y - I'm an example of someone who had a huge Rupture (accompanied by a bad stroke) when I was 30 (2011). I had no idea I had an AVM - there were no symptoms, just that one bleed. That's all it took - the intervention was swift and drastic and I lived (although the 2x I've met my surgeon there has been a lot of emphasis on how I was very close to being dead when he did the craniotomy), but now I'm disabled and my Old Life is gone. I used to live on the West Coast, now I'm in the DC area with my parents. I was so disabled at first I couldn't bathe or dress myself, among other things. But I'm much better now, and can walk (still not prettily) and stuff. I have gotten better bc I have amazing family and friend support, I devote 100% of my resources to Recovery, I make it my business to seek out talented professionals to help me, and there is an extremely high degree of Divine Intervention in my case. I was never burdened with a decision like yours, so I can't give you personal experience, but I will say that having a cataclysmic surprise bleed did not just happen to me, it happened to my family. My parents moved to across the country for 2.5 months to care for me as an inpatient. They rearranged their empty nest so I could move home with them. No matter what you decide I would definitely make some plans, e.g. what to do if you have some new deficits after treatment, what to do if you have a huge bleed, etc. where will you live, do any modifications need to me made to the house; this planning thing will likely be kind of sad - but the good news is that it will take a lot of fear out of each situation bc you know you have a plan to meet it. The best scenario, of course, is that you never have to use any of them! This site is great - glad you're here. I've never done this before but tons of members have done this AVM (post or active) life for decades, and done it really well, and have great tips to share on how to live. I've asked questions ranging from how to cook to how to deal with teeth complications. This place is a great resource - so whatever is ahead, you can face it with confidence born from group experience - and success. :) atnt


#8

God bless I wouldn’t wish a decision like that on my worst enemy. I had to make the decision to have either radiation or more brain surgery. I did have two AVMs but had major brain surgery in March this year 21 hours & 21 pints of blood so now only have one. I have decided on more brain surgery as I also have an anyureusm on the remaining AVM. It’s a very hard decision & I just wanted my consultant to make a decision for me to be honest. Whatever you decide we will be here for you, take your time it’s a life changing decision x


#9

Good news =). I was in the prime of my life (26yrs. old), regularly exercised. Blessed with two beautiful girls. I had no idea that I had this “ticking time bomb” brain AVM until I had a severe CVA.I have had 4 embolizations and 2 rounds of gamma knife radiation. They are talking about a possible third round. I must admit I keep asking myself and joking, " how much radiation can one brain take", occasionally cry. I ask my husband sometimes if my memory seems worse and he says, " not any worse than it was before"…lol…There’s going to be risks unfortunately to any procedure you have but make sure you do something or there’s a higher risk of another bleed. Honestly I know my neurosurgeons and God are in control and trusted their judgement. Without their help I can honestly say I’d be losing sleep and be miserable.I work full time and I continue to exercise. (probably should exercise a little more).Praying for wisdom…I know how much it sucks!! Feel free to email me questions/concerns. You will get through this!!!


#10

Yaanachka, When my AVM was diagnosed, I was told my chance of having a hemorrhage was a 90% possible. So like you, I had to make the hardest decision of my life. The only thing that could help me was finding the best of the best neurosurgeon team available and putting my trust in them.

At that time, I didn't have the AVM Survivor Network to support me. If I were in your position, I would ask the members to recommend the best of the best neurosurgeons on the West Coast.

Also, many of our members think highly of Dr. Robert Spetzler at Barrow Neurosurgical Association in Phoenix, Arizona.

Please keep us informed and always know we are here to support you!

Stay Strong & Positive!


#11

I would say that 50% sounds like a low estimate for success for gamma knife. Is that the success rate of your specific surgeon? If so, I would look for a second opinion. I had gamma knife three years ago following a bleed and I would ABSOLUTELY recommend it, as long as your neuro team knows what they're doing. My AVM is now completely gone with no long term side effects! Good luck!


#12

I can’t tell you what to do, but I can share our story with you and pray that God guides you through this difficult time. My daughter had a stroke when she was 2 years and 8 months old. It was massive and the doctors didn’t expect her to pull through. However God moved everything in time, the only neurosurgeon attending was getting in his car when he received the page and long story short, if she wasn’t rushed to the OR, we would have lost her. Her recovery was amazing, you can’t tell that she has had a stroke and yet along 2 in her 9 years of age. Unfortunately her AVM is grade 5 and no one wants to touch her because she is doing remarkably well for a girl who has a huge AVM that covers the right side of her brain and is spreading to her left. After her 2nd stroke, I decided to quit my job. All that we heard from the doctors was don’t lose hope, enjoy the years that you have with her and the % of how likely she will have a next stroke. We decided to pray and let her live a normal life. We still get her MRI/MRAs annually and angiograms once in a while but since no one can do anything for her, we pray and trust that The Lord will heal her. Many say it’s a miracle how she is a normal kid, and my husband says that the miracle is her not bleeding again. But I have hope that those terrible letters (AVM) will be a thing of the past and she will be completely healed. I can’t tell you what I will do in your shoes, because honestly I don’t know. But I’m sure I will take my time to think about all the pros and cons and pray that God will guide me. So that’s my advice. I will pray for you and hope that whatever you decide, everything will be fine. God Bless you.


#13

Welcome to the site it’s a great place for support and getting some insight. First let me start by saying my prayers are with you.
I had my AVM bleed in April 25, 2013. The 26th they did an Embolization with glue. We lived in London.UK. at the time. We did move back to the states once I was able to return home. My GK was done in the US. Apparently when I had the bleed it caused a SCH stoke. My left arm is not very strong and it’s not very coordinated. But with PT it’s getting better. I had gamma knife September 2013. They just did my yearly check (angioplasty ) it has decreased by 50%.
That being said I had a few side effects with the GK. First my headaches increased and my balance is a bit worse. My husband and kids always remind me it’s better then another bleed. So if it could keep that from happening then it’s a good thing.
I think it’s a very personal decision and you have to do what you and your family think will best benefit you.
There is also a treatment called Cyber Knife not sure the difference I was never given the option but it’s worth asking. If you decide to do GK let us know if you have any question. The one big advise I would give is make sure to have a pillow that will support under your neck as well. When the frame is on that leaves extra space and it was not comfortable to lay down that long without support.
My headaches have tapered since the beginning. I tend to have more headaches when I bend my head down to do something but my AVM was in the cerebellum so that could be the reason for balance issues. My GK was for 1 1/2 long. If you have any other questions please feel free to ask. Again prayers to you!
Hugs- Niyani


#14

Hello ! My feedback to you I regret is very limited. Including your situation and mine are so extremely different: You've had two hemorrhages, although small you say, whereas my AVM was found accidentally when I was 65, and I've never had any symptoms from it. And most significant I am 73, you are 22. Forgive me if I've overlooked something , but somehow from your post it makes me wonder if you've gotten a second opinion and probably need to do more research. Having more information would serve you very well in the process of this decision which I know is so very, very difficult. . Gamma knife was suggested for my only treatment option, which I declined. During all my investigating during the time I was faced with the same decision as yours , I was always told gamma knife gave a 80% chance of success and it would occur over 2-3 years. I also wonder and am curious about you having had this AVM for 15 years yet you are 22 . Its my understanding we are born with AVMs. Have you been told differently ? What about the 5 year gap you posted ? I wish you the best of luck and peace and good health. And hope you can get another opinionm which will help enable your decision making.

Take good care. Sally

#15

My AVM is different, but I know what you mean with people's comments... Like "I would just leave it alone; 3% isn't that high", it is if you happen to fall into that percentile! Keep gathering info, and talking with people. I am new to this forum, and already people have reached out to me. Stay positive!


#16

Members, I am closing this discussion to further responses. The moderators have needed to delete a couple of responses that crossed the line into medical advice. Members, you may not advise someone to have a craniotomy or to have gamma treatment -- that is irresponsible. You can only share your experiences.


#17

Wow incredible thank you for sharing. Congratulations, what an amazing feeling that must be! :hearts::sob:


#18

Thank you for sharing I saw this a few years too late. :sob::blush: How is she doing?


#19

Thank you for sharing your experience Niyani. That is amazing that it has decreased by 50%! I hope it is 100% now!!! I have not gone through with GKR. Few years have past and I’m okso far :slight_smile:


#20

Hi sally Im sorry I saw this post a few years late. Please if you are still active on this the site I will message you and we can chat. I hope you are doing well :hearts: