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AVM Survivors Network

Treatment outcomes. Deciding to go for it or not


#21

I agree with those who say to get a second opinion. The gamma knife procedure helped me to avoid surgery and caused very few side effects. I have no idea why your doctor doesn't see it as an option for you but at least if you have more than one doctor's input you can feel better about the choice you make, whatever it is.


#22

A lot of people replying to you are from the USA , and they do not understand the system in the UK. Also of course people with positive outcomes are going to advice you to to take a chance…maybe it would be more balanced to also hear from people who had negative ones as well. ALso each and every AVM is different and it’s impossible to do comparisons. Btw gamma knife shrivels up the AVM so that it disengages itself from the feeders etc and becomes inactive…and it’s a safer option than surgery, and I am surprised your consultant hasn’t at least suggested sending ur scans to Sheffield initially…if the size is too big they usually reduce it by embolisation.


#23

I have been told that my avm and aneryem is too large for any other treatments other than surgery and all the other treatments will only make it worse. If you don’t mind me asking what is in Sheffield?


#24

Sheffield’s hallamshire hospital is the biggest centre in UK for gamma knife…they usually embolise AVMS until they are small enough to do the radiation. What hospital are you with and who is your consultant? Try to get another opinion before deciding on anything…it will be long and tedious in the UK …but you are entitled to one…ask your GP to help you and
ask to be referred to Walton Neurological hospital in Liverpool or national Neurological in London…I believe they are the best two in UK.


#25

That is the hospital I am apart of I have been going to the Walton Centre for about a year now with DR Anna Visca as my consultant. I have heard many great things from this hospital but I’m not sure what this Dr is like hopefully very good.


#26

Sophie: I too had a large AVM above my left ear and I had surgery at Mayo Clinic in 2006. (I found out about it in my teens too, after I started having seizures). You need a second opinion, as this is a major operation and you should have confidence in your doctors. Ask the surgeon how many times he’s done the surgery, his track record, history, etc. Do some research of your own about the doctor/hospital too, then you have to have faith that the surgery will be a success. Wish you the best.


#27

Hi Sophie
I too had to make a choice of going to the big operation or not.
After having 4 small operation for gluing the main feed. My AVM was 95% closed.
AS the doctor explained, the risk factor was, I would collect 4% to 5% of bleeding chance every year, as I grow old. so I would have almost 100% chance of bleeding by the age of 50.
So I went ahead for the main operation and so far it is good except my right peripheral vision.
But as almost all mentioned, this is your decision. Talk to as many experts as possible and make an educated decision.
Best of luck and get well soon.
You will be in my prayers

Abhay


#28

Hi Sophie,
Take a few opinions from different doctors which I hope you have already done. Every doctor might try to approach it differently but make sure that have more or less the same suggestion about treating it. Also do some research and go to a really good neurosurgeon. You are young, so you would recover fast and I am pretty sure everything would be just fine. Wish you all the best.


#29

I would also say to rely on good doctor advice.
After all life is everything.
Life and health matters.
Be confident God will protect you, InshAllah.


#30

Sophie, you have generated quite a written discussion here. When I continue to read through all of the "real world" responses to your situation it appears to me that a common factor is to seek a second opinion. And purely my personal opinion is that if your current neurosurgeon is offended by this, I would hesitate putting my brain in his or her scalpel. So here goes, probably breaking every rule that there is about giving out recommendations of neurosurgery departments of hospitals for a second opinion here in the United States: Barrow Clinic (602) ■■■■■■■■; Johns Hopkins (410)■■■■■■■■; Mayo Neurosurgery (507) ■■■■■■■■; and Vanderbilt Neurosurgery (615) ■■■■■■■■. My real world experience is that I checked them all out and ended up going to Vanderbilt. You've already proven your maturity - so in the end, it's your decision about your brain. Perhaps others will chime in on experiences - good or bad - with these hospitals or others in the United States or around the world. George


#31

Hi Sophie,
I agree with most of the other comments made here. I am 56 years old now but was in my 30s when my inoperable AVM was discovered. What the doctor is wanting to do to you is what I had done and was experimental at the time I had it done. The reason the glue. Pellets are shot at the arteries is so that the blood flow will stop and so that it will stop feeding in hopes that your AVM will shrink enough to become operable. Once mine became operable, I had a radiation brain surgery, Radiostereotactic Radiiosurgery, then ended up having two craniotomies. I did lose my left field vision in both of my eyes as this was the area that my AVM was located in. Unfortunately, I suffered a stroke that affected my left side. This many years later you wouldn’t be able to tell I have been through anything, if you didn’t know me. My Neurodurgeon was at Stanford CA and told me as long as I had any residual AVM, even 1% then I had the possibility of hemorrhage. So, it was always his goal to get 100% of my AVM. After my third embolism I did end up having a brain hemorrhage. By the Grace of God my family pulled me through that at home. In my opinion it is necessary to take action because you will have the chance of hemorrhage and that is like having a Time Bomb in your head. Praying for you and your doctor. Juanita


#32

Hi Sophie I have a large avm in the right parietal I am in the process of treatment. have had 2 embolization's (glue) so far waiting on appointment for 3rd pretty much the option they gave you. Has anyone told you if there is risk if not treated? Mine ruptured before I knew I had it (basically a stroke) Had left side paralyses and lots of therapy to learn how to walk again. Even if you decide against the treatment there is still risk of not treating it and your life can be forever changed. You are young and should bounce back and heal faster than someone my age. The glue part of it was not as bad as I had thought...Your out for it all. I still get nervous though and I'm sure I'll be worse when it comes to the actual removal Ask Dr which has more risk treatment or leaving it be?....Hope I was of some help....Any thing I can answer for you please feel free to ask Best of luck making your decision Hope it all goes well for you


#33

Hello Sophie.

Unfortunately I don't much about the different kinds of AVM treatment, I'm quite new at this as well.
Just passing by to wish you all the luck and send you tons of positive vibrations.


#34

After it ruptured how long was it until you could walk and get back to normal afterwards. If you don’t mind me asking?


#35

How long did it take to recover from the embolisation and the surgery? Was there anything that went wrong I’m still trying to convince myself it’s the best thing to do. Speaking to people in the same situation as me is a great thing. No one understands what I’m going through around here. Did you have seizures before treatment or after?


#36

Thank you very much I’m going to try and get all of my scans and test results and send it to them asap.


#37

How about after the treatment did you have any other side affects. Did everything go alright if you don’t mind me asking


#38

I'm not really sure I was in intensive care for a while and rehab therapy for a while. about 2 months altogether in hospital. Then had a nurse and therapist at home for a while. But still not back to normal I have constant dizziness and headaches almost all the time. Not really sure how long my avm was bleeding ..I had headaches for days but kept going to work until it ruptured my first day off...the amount of blood on my brain may have something to do with side effects ( had drains and a shunt in hospital


#39

Also my memory is awful


#40

My husband had a large AVM and aneurysm as well. However we didn't know. Then it ruptured. Talk about a dramatically changed life. For two years he's been in a hospital bed, waking up little by little, regaining motion little by little, first a finger, then a hand, a raise of the eyebrow, then a smile, trying to talk now eating a first meal in two years - pureed, but still on a feeding tube. I just say this to give you some food for thought. If you are concerned about a changed life, yes, perhaps surgery will bring some changes or side effects or losses, but maybe consider the damage that might happen in the case of a severe rupture. Maybe you should ask your doctor what the chance looks like of yours rupturing. If large or small. Then think about where the risk is greater. Then you have to make the decision you feel most comfortable with and know that if you have setbacks either way- there's always hope of working for recovery. My husband has come amazingly far....beyond anyone's expectation....but again - very slow and I wishe we'd had the opportunity to care for it before a rupture.

Also, my husband has a permanent shunt - and has had no problems with it.

WIll pray you find peace in making the decision that's right for you!