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AVM Survivors Network

Treatment outcomes. Deciding to go for it or not


#1

Hello i have got a very large AVM and aneryem on the right side of my brain and behind my right ear. I only found out about this just over a year ago and because I’m only a teenager it has changed my life completely. They have offered me treatment which would be having 5 operation of gluing the main feeder blood vessels and then one very big operation of taking it all out which would take over 24 hours. There are many risks to this treatment and I’m not sure weather to go for it or not. Could anyone help me maybe give some support if they have any information or have got similar problem as me? I don’t what my life to change anymore than it has to. Because I’m young my parents think I should go for it but I’m not too sure… please help.


#2

Hello and just letting you no that I would go for it. I've had some what the same choice of should I go for it or not and I chose to. I had to have 4 surgeries to remove all of my clot. It helped me out a lot with not having any more headaches and seizures ever since then. It's a hard choice and I was at the age of 11 when it was done but it made life a lot better than when it started. I'm in great health now and haven't had a headache since the surgery back in 2001. Its worth it. Hope the best for you.


#3

Thank you for the help? They have gave me the risks of having a permanent shunt, being paralysed on the left side and many more I’m just trying to decide if there is more risks than benefits?


#4

My Dr put it pretty well. The risks are the same either way. Your just putting it all in a moment that you can then put behind you. I don’t know if this will help. Just how I learned to look at it. I was told mine was inoperable at first. Then second opinion with one of the best in the field. Had the craniotomy. I have lots of deficits but no more headaches and no more risk of sudden death. From this anyway lol.


#5

This is a hard one for us to answer as ultimately the decision will be yours at the end of the day…if your concerned about the procedure and risks then I would definitely get a second opinion to put your mind at ease…I will agree that being young and healthy will work to your advantage but at the same time I know it’s a hard choice…keep us posted and will keep you in my prayers… God bless!


#6

Hi Sophie, Obviously only you can make this very hard decision, The choice was taken from me via having a bleed and being told that this made me more at risk of having another one. The one bit of advice I can give is that a bleed/stroke is much more dangerous than the procedures. This is how I looked at it. I needed to have 2 craniotomies and was very scared but the way I looked at it was, I needed it to be done, Leaving it for me wasn't an option having It hanging over my head for the rest of my life .... NO . I thought what if I had another bleed while I was alone this time ?. My second surgery was the removal one and this was 10 hours long (not really that long compared to yours but its not a competition lol !) What has your doctor advised ?, I'm sure they will agree with me that the risks and after effects from a bleed are worse than the risks and effects from successful surgery :) . Anyway I wish you luck and hope you take care. 1 more thing to consider is that pregnancy can affect AVM's and you may not be thinking about kids now but you never know for the future :) .

Martin.


#7

Thank you for the support everyone. It is really helping. The doctor said it is completely up to me I can go through with it any time I like. If it’s now or in q0 years it’s up to me. The only thing is that the risk of having a stroke will increase every year. Thank you everyone. Can you give me any ideas about your recovery time and how hard and what did you have to do to recovery well?


#8

My recovery was a little over a month after surgery. Its not that I was feeling sick or week its just the doctor's wants you to play it safe. That and take the stitches out.


#9

You are smart to STOP and think about whether to do this or not. My son was told the same thing that you were told, the doctor wanted to do several embolizations and then a craniotomy. THANK GOD, he went to John's Hopkins and got a second opinion there. They told him that there was DANGER of him losing his speech and movement if he had that surgery due to the location of the AVM. This was confirmed by sending his scans to Barrow Institute who told him the same thing. You can send your scans there to get an opinion from experts. DO NOT just do what the first doctor tells you! Do not listen to these people who say, "Go For It". Seek expert opinion.


#10

If everything goes well, (And trust that it will ! :) ) Then I had a 10 hour craniotomy and was out of hospital after a week and back to work on light duties after 8 weeks but it all depends on the treatment and recovery, Everyone is different :) . Being young is a good thing for this and also making sure that you get plenty of rest after the procedure is key also I feel. Take care and please let us know what you decide :).

Martin.


#11

Hi Sophie,

My husband has the same dilemma as you. But they’re all right. The decision is yours. However, i must say that all treatments have equal side effects and or consequences. There must be good stuff yet bad stuff can also happen. Life is like that. With decision making, we all need to ask people around especially doctors who have had enough experience and wisdom on this. But, its only God that you can entrust your whole life to. Prayers and more prayers. We shouldnt be afraid of whats ahead of us." If God be for us who can be against us? "

Take your time to think and consider writing the + and - in a paper and see how much info you can gather for both sides as well. As you are young, you might want to consider whay your parents might think. Because parents know best most of the time. Tell them your side and try to listen to their side as well. Thats everything i could recommend u to do.

God is in control. Have faith.


#12

Hi. Have they given you any other options? I have a 6cm AVM on the right side and had associated aneurisms. I had 4 embolisations which reduced the avm slightly and also got rid of the aneurisms and 3 lots of GAMMA knife and it is significantly smaller..due for another scan next year. I have had 3 haemorrhages but was told that surgery was not an option and never would be. Its great that there is a choice for you but obviously really hard for you to know what to do. Is your consultant recommending surgery? Im not sure where you live but I had my GAMMA Knife in Sheffield which I was told was the best place for me to have it done.Maybe its worth a chat with your consultant to find out his thoughts about that. Sarah x


#13

Thank you for you advice but no there is no other option if I go for the GAMMA knife or embolisation on its own then it will only make it work by irritating it a what my consultant said. Thank you so much for your support :slight_smile:


#14

I think you should try to get some second opinions done, which is never an easy process in UK. For 100 dollars you can send your scans over to Barrows Neurological in the States. They will give you their opinion which is probably the best you will get in the world. Based on that you can show it to neuros in UK at least and get a different prospective maybe.


#15

The thing I’m worried about is that will my consultant get offended by asking for a second opinion. And they will not just give me the scans or results I have to go through a big case to get them all. Thank you for telling me about this barrows neurosurgical I am defiantly taking that into consideration


#16

Hi Sophie
If this is the only opinion you have gotten, then I would have 1 or 2 more. Make sure you get copies of all your scans etc for the other surgeons and do your research on your surgeons. How many specific AVM cases has he or she had, outcomes etc.

My AVM was an incidental finding during an brain MRI for something unrelated.
I had the option of a craniotomy with 2 embolizations . Radiation was not an option for me. I could have left it alone but the risks of rupture in my case was a higher percent than than the risks from surgery.
I also could not live with the thought of the AVM rupturing every day of my life so I chose surgery. My AVM was completely obliterated and I have no side effects at all.
Best of luck in your decision. I know it is an extremely hard one to make. My thinking is that if the surgeons are telling you that they can get it & obliterate it , then I would do it. Many people don’t even have the option due to size, location etc…

Good luck
Tina


#17

Sophie, Honestly, I know it's a big decision to make. I feel it's a bigger problem if left untreated. After going through four embolizations and surgery to remove AVM I am so thankful, that I decided to take this action. I was in my 50's when this took place. Being younger as you are, you will bounce back much quicker then older individuals. The Avm doctors are so advanced today, it's unbelievable what they can do for you. Make sure Doctor has a positive medical history. With loving Parents by your side, I feel you will make the right decision. Best of luck to you and your family.


#18

Sophie, I had a large avm and aneurysm in my right/frontoparietal lobe that was discovered after having seizures in Dec. 2014. I too had choices to make, and they were difficult to wrap my head around at the time. I have twin 16y/o daughters, and a soon to be 21y/o daughter in college, so I know you have a million questions (my girls are what inspired me lean toward surgery). Looking at the bigger picture, and what the future may hold, I chose the surgery. This was the best decision I have ever made for my situation. My issues have been obliterated, went back to work 4 weeks later, i'm driving again, and coaching girls softball again, and off the meds. Embolized on one day, surgery performed 2 days later...home 3 days after; and no my head was not shaved :) My situation could not have gone any better, and I pray yours does the same as well whatever you may decide. Ask the doctors as many questions as you can as there are no bad ones, and go for a 2nd opinion if you feel you have any doubts. Your young, use it to your advantage. Let us know how you are doing along your journey...prayers.


#19

No it’s not true Sophie, you are entitled to get copies of all your nhs notes and to get copies of scans…you may have to pay a small charge, but by law you are entitled to see copies of everything medical…they are lying to you if they say you have to go through a big case…phone up consultants secretary and hospital administrator and tell them you want them and that you are entitled to them or get your Gp to help you.
I am at the national neurological in London, and I recently requested notes/ scans etc, so I know what I am talking about. And consultants are not “gods” although in the UK they think they are, and it’s easy to get intimidated by them …x


#20

It is very important to get second opinions whenever you have a life changing health care decision. I work in health care. Doctors are not offended when you get a second opinion it is the norm. If it makes it easier you can tell your doctor that your parents insisted on it. But do not go with the first person who has an opinion.