Diagnosed with avm and aneurysm in July 2016 after one seizure. It is now February 6,2017 that I received all results where craniotomy was discussed. I’m so confused and can’t get anyone to help me make a decision. I think because you don’t look sick people don’t understand.
Hi @Kell, I am sorry to hear that but happy to see that you are good for the past 8 months. Hope it continues. I am sorry that I do not have an answer. However, I am in the same boat as you are with my wife diagnosed with AVM and Aneurysm in Jan end 2017. She is 40 years old. It has been only 2 weeks and she is doing fine with some impact to her speech. The AVM is concentrated in one area and it is 2.5cm and in the grade scale, this is ranked as #3.
I am also looking for suggestions on weather to go for a surgery (Gelling followed by surgery is what has been recommended for her) or just take the risk and do nothing.
I was told the risk is 6% in the first 6 months and 2% every year after that if you do not do anything. The percentage seems to be too low when compare to the risks of doing the surgery. On the flip side, the surgery when successful will give you piece of mind for the rest of the life (or does it?). Radiation was considered but since this AVM is deep in the brain, the chances of impacting other nerves and its side affects (seizure et) super seeds the surgery side affects (like weakness, further impact to speech - that are reversible - told by doctor)
I understand everyone’s situation is different. However, seeing someone like you who had impact and did not do any surgery for 8 months, gives me more confident to do nothing (NO Surgery). Obviously, the surgeons do not recommend “do nothing” option.
I am looking for some suggestions as well.
Again, hope you will continue to do well and you are in my prayers.
Hello! Last 11th August 2016 I had my a stroke because a AVM that at that point I did not know that I had. I had a craniotomy that day in order to take out the bleeding and doctors take a few days to decide what to do with my AVM. They told me the best option for me was surgery because it was on my right frontal lobe and was ranked #2. I had surgery on 25th August 2016 and they could remove all my AVM and now, six months later I am doing fine and have no strokes and headaches at all. Sorry for my English, I am from Spain. I hope everything will go great for you!
Thanks for sharing your story. I’m leaning towards surgery because of the risk of rupture on its own. Not sure I can get my family onboard with my decision.
When my AVM bled, first a little now and then, then the last time, I was a kid. I made no choices. It was in 1959, a long time ago. I have lived a long life and have done the best I could. If given a choice now, I would pick a craniotomy. It is not what you think. A bleed and coma are worse in so many ways.
Congratulations to faccenda on your recovery.
beans
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Congratulations @faccenda. I am so happy for you that you are doing perfectly fine. This type of stories helps in positive way.
Since my wife’s AVM is ranked #3, the concern is about impacting speech even more. I am not worried about Speech at all. I am just worried about life here. I was told the side affects of surgery are reversible (speech or weekness on right side). However, if you get infection during surgery or anything else, then that is what I am worried about. Does anyone know the infection rate during Brain AVM surgery?
Reading my first MRI ( by myself.lol) Can anyone help me understand this? I know what an avm and aneurysm are. It says it’s along the upper portion of posterior left frontal/parietal hemisphere causing Mass effect on the adjacent brain. It doesn’t say size. Help?
Hi Kell, I’m sorry to hear about your diagnosis. I know it must be really difficult to make a decision especially when you “feel well”.
I had my AVM spontaneously ruptured in May 2015 and thereafter had craniotomy. Mine was a frontal lobe haemorrhage. Post surgery by the grace of God I have made a full recovery with no deficit.
Ultimately because you have a diagnosis already you may want to discuss with your surgeon about gamma knife etc. Surgery is successful but please understand it carries great risks!
I wish you the very best and pray that you make a decision that benefits your health and God gives you good health ameen.
I understand that it must be difficult, hope my few words have helped in some small way if any.
Take care, Waqaas
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Thanks for sharing your story it is very helpful to hear others experiences. Unfortunately Gamma is not an option for me.
Hi Kell, my AVM was asymptomatic. It was serendipitously discovered after a head-on collision resulting in massive head and brain trauma. And even only after a second opinion of my MRI images. The first doctors missed it. i got a second opinion for no other reason than piece of mind. Lucky me!
After all the tests, opinions, research, and consultations I decided to have the craniotomy. What really made me decide however was when my surgeon said this: “at 33 years old, physically fit, overall good health, the short term risks of surgery are far less than the long term risks of doing nothing. It WILL hemorrhage one day. Could be tomorrow. Could be in 10-20 years. You better hope it doesn’t happen when you’re in your 70s,80s, or 90s, when the risk for death and permanent deficits is very high.”
This was 1993. I was very fortunate to be in IronmanTriathlon fitness. I was expected to be in the hospital for a week, maybe two. Then occupational therapy for a couple of weeks.
I had surgery on a Thursday morning in June 1993. Woke up Saturday and went home Sunday. Extraordinarily fortunate to have been a fast healer. Keep in mind i wasn’t dancing and training right away. But i was able to resume my former life after a little over a year.
Make no mistake, brain surgery, well, sucks big time! It’s a major disruption of your life, and your loved ones. Particularly if you don’t like to lay around, like me. But it saved my life. The medical technologies, surgeons, surgical skills, surgical nurses, now 24 years later, are even better.
And by the way, the nurses, WOW! They made the most unbearable, daunting, terrible, and quite frankly sometimes painful, circumstances, as bearable as humanly possible. I could not have endured the experience as i did without them.
Hope this helps.
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Hi Kelango27, I think the way this site works is such that you can see my response to Kell’s post if you’re part of the thread. If not let me know.
Bill
Thank you Bill I think I know I have to do this.
I am in Pennsylvania
Hi Kell, my AVM in my left temporal ruptured in May 2016. After a multitude of tests and opinions craniotomy vs. Gamma I went with gamma knife based on my surgeons recommendation. It was a tough decision but where mine is located gamma knife carried far less chance of deficits, but does come with the risk of re-bleed until (hopefully) obliteration. A tough r=decision as I do not wish to experience a second bleed. Tak Care, John
Bill,Yes, I do see your response to Kell. Thanks a lot for your story. My doctor is suggesting Surgery. However, he also mentioned that if I go and ask 100 surgeons, 50 would say surgery and 50 would say radiation because of this case. He basically said that it is up to us and what we feel comfortable. Is it worth waiting for 2 to 4 years to confirm that your AVM is gone by doing radiation or do a surgery now and make sure the AVM is gone right away. My wife is 40 and i think it is about the same reason. She is young and she can recover from surgery and have piece of mind.
Where did you do the surgery? Any recommendation for surgeons or hospital?
Elango
If you want to make sure someone gets notice of your reply (or anything elese) just put an @ sign in front of their user name. a list pops up of everyone in the thread when you type the @ when you do that you get @Bill4 and a message is sent out usually there is a several minute lag in case youneed to edit your post. But yes everyone can see every reply.
TJ
Hi all
I read every ones post and I can sympathize with all of you. It took me 2 years from the time that I found out I had an AVM to decide treatment/no treatment and than surgery or radiation. I read all the scientific papers I could. Looked at statistics. At that time the research to go by was preliminary results from the ARUBA project etc. One thing I have to say I understand all of you and at different stages I felt all things you are going through. It is a decision you have to make on your own and driving yourself crazy does not help. Once I decided on Radiation, which by the way was a concern since the AVM was in the parietal region next to the centers for sense and motion I felt completely relaxed, I stopped reading, I stopped asking and I said whatever happens, happens. To this day 2 years later, I have no regrets and I am happy that radiation worked for me. Countless times in the 1st year and a half I had stroke like symptoms that will last for a few minutes at the time sometimes several times a day. I just ignored them and continue doing whatever I was doing. thankfully in the last 6 months I have no issues. The best you can do is to decide and forget about it. Talking to different specialists may help you decide and feel good about your decision.
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Hi everyone. I am putting the other side of the story here as I decided not to treat my AVM. Its position (Cerebellum) and size (large) means a huge risk of deficit. And at the same time there would only be a 50% chance of getting cured. Surgery is not suitable for me so treatment would be multiple embolisations and then gamma knife. My AVM is unsymptomatic and has never ruptured. I have low blood pressure which may help here. So for me the odds of doing the treatment against doing nothing are on the side of the latter. I have been advised that some AVMs don’t ever rupture and many postmortems have revealed them in patients that never knew they had them. Also the older you get the less likely a bleed is. I’m not sure whether anyone really knows though as you hear conflicting stories. I don’t see my AVM as a ‘ticking time bomb’ or anything though. We’re all going to die one day aren’t we? Hopefully it won’t be until I’m very old though.
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Way back in 1990, I DID do the brain surgerIES for my quite large brain AVM, and then it was very risky, because AVM was somewhat of a new diagnose. It took me many years of recovery to say this that I adore my ‘2ND LIFE’ that I was Blessed with. Now, though, surgery for AVM is much more commun, and the neurosurgeons now-a-days have LEARNED SO MUCH from the AVM surgeries from the past.
Good luck, and may God will help you decide!
Lisa A. Stuckel
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I have scheduled an embolization (March 13th) followed by craniotomy (March 14th) at NYP with Doctor Robert Solomon. He seems to be much experienced in this types of surgeries. Has done about 600 surgeries. He highly recommends surgery for my wife case (explained above). Please pray for us.
Her AVM is rated #3 in the scale and the AVM itself is 2CM but it is bit inside and close to speech nerves. Dr Solomon mentioned that the usual side affects are the surgery is basically the same side effects that she faced when she had the headache/blood leak on Jan 28th. She was struggling to speak (10% chance after surgery) and had very minor weakness on her right side (5% chance after surgery). She did not have any seizure type effects and hence we are hoping that may not happen although we can’t completely eliminate that. Besides that, the other side effects like infection, bleeding are 2% chance.
I think it all depends on how the surgery goes and that will tell us how long the recovery would be. Since the original episode on jan 28th, my wife came back very well and her speech is much better that she can’t communicate without any assistance to doctors and co-workers. I am assuming that she will get that speed of recovery after surgery.
Any kind words to support me, your thoughts and prayers are welcome.
Have any of you had the experience of doing surgery at different city and coming back to hometown for therapy? Is that common? Should I do something or the surgeons would recommend the post surgery therapy location?