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AVM Survivors Network

Treatment outcomes. Deciding to go for it or not


#41

From a different perspective I have had three bleeds and did not have any significant after effects. I had two embolisations. After my third bleed they tried to do another embolisation…and trying that they went through an artery and caused a stroke…I do not have really bad problems, but I do have a few minor ones that have altered my life, but they were caused by the attempted embolisation not the rupture.


#42

Hi Sophie, I can only share my experience , at the age of 21 back in 1986 I had starting getting dizzy spells and numbness in my right leg and foot for about3-4 months then one day I had a full blown grand mal seizure. Scary stuff right? people thought I was doing drugs because other wise you look and feel fine. My doctor sent me for a cat scam and then I got the call that a had a brain tumor, holy shit I said to myself ,I was probably going to die. I was referred to one of the top neuro surgeons and was admitted to the hospital for surgery to remove the tumor. they did an angio to see what blood vessels were feeding the tumor so they would know what to expect and that's when they found it was an AVM and sent me home, that's how big the AVM was that it looked as a tumor on the CT , nothing they could do at that time. I went to several specialists and the risks were to great to let them try the embolization back then which was relatively new forget about surgical retraction. So I went about my life on seizure meds for 30 years until it happened , a bleed , I had no choice now , emergency room and a hole drilled in my head to insert a drain to relieve pressure on the brain from the bleed and then first embolization procedure, the bleed itself caused more problems that the procedure, 3 weeks in neuro ICU and a month home recovering, I was lucky to be able to get back to work, i then had two other embolizations to shrink the AVM, each time a week in the hospital mostly because they wanted to monitor me and a week home, then back to work I went, now it was small enough and I just had radiation (Gamma Knife) to eradicate the remaining AVM, THE ONLY ONE THAT CAN MAKE THE CHOICE TO HAVE ANYTHING DONE IS YOU, again that all depends on how the AVM is affecting you , it is very important you keep your blood pressure in check too, again I am one of the lucky ones not only to survive but to be able to get back to almost as normal a life as before. I still have fatigue and still trying to regain strength after almost a year. So Sophie that's my story, I know that this is not an answer to your question but I wanted to share with you , I hope all goes well for you !!


#43

Thank you very much for sharing this with me it’s reassuring to hear someone being able to recover from something like that. I’m head to hear you have got your life back on track and I wish you the best of luck. Thank you for your help and support


#44

Hi
I’m going to tell you my story but everyone is different.

I know you are thinking about it carefully. I suggest that you find out about the risk of not having the surgery. See if there is someone you can talk to who you can really open up with. If that is your parents that’s great, I did talk to them but also a therapist because I felt I could tell her how frightened I was making the decision without making my parents upset or more worried about me. That could be a family friend or relative (I’d suggest an adult that you know will be around for a while). Your doctor might agree you could have a couple of sessions with a nurse, doctor or therapist just to talk things through with someone who is more independent.

the thing you really need to know is that however it goes you made the right decision. If you decide not to have the surgery and unfortunately have a bleed, or have it and have side effects you still made the right decision at the time.

When I was born I had a weakness down the right side and bad sight (even now they don’t think it was related to AVM) My parents found out I had a large left side brain AVM when I was six. There was It was found because my mother suspected something was wrong because she could hear the AVM in my head (called a bruit). I didn’t have any symptoms then. They told them I had approx 3% year risk of a bleed which would have very serious consequences. The risks of surgery were very high (50:50 whether I would survive at all) so my parents decided against. They thought again when I was 10 and I knew what was going on then but maybe not what the risks meant. I did get some bad headaches but could cope. We looked it again when I was 18. The treatment would have been safer then because surgical techniques had improved but I decided I was going to university.

I did university and then some training to be a solicitor. I was getting quite a lot of headaches but they could be controlled. I decided to think about it again. If I was going to have planned surgery I wanted it while my parents were able to help me and before I started full time work/career so I didn’t have to take time out.

I was living away from home so I had the chance of a second opinion at my then local hospital.
I was 25. I then moved back to my home town. They told me there was a 30% risk to “life limb and faculty” of having four embolisations, and craniotomy or the 3% risk per year of bleed. I was told I needed to have the whole treatment or none (having one embolisation would make it more likely I’d have a bleed if I didn’t complete all the surgery.) They also said pregnancy would be dangerous (to me and any foetus) I decided to have the surgery because my parents could support me financially and emotionally, and if something went wrong I would be in a hospital with all the specialists, but a bleed could happen anywhere.

In the end I had four embolisations, 11 hour craniotomy and then an unplanned embolisation because it hadn’t been completely removed. P the treatment was completely successful in that the AVM hasn’t regrow not. However I do have epilepsy and depression now. Both are relatively well controlled but lifelong. The depression has had a serious effect on my life.
As I said I made the right decision because I made it with the facts I had.


#45

Hi Sophie. It's good that your very large AVM was discovered BEFORE you had bleed/stroke. Mine was not. I didn't have any warning symptoms. When I was 49 years old, out of the blue I developed what I described as a "killer headache" and asked my husband to take me to the doctor. Within a few minutes, I was unconscious and had to be taken by ambulance to the local hospital. Shortly after being assessed there, I was transferred by helicopter to a major medical center. I was near death and had to be kept in a medically induced come while the blood around my brain cleared. It was purely by the grace of God (and awesome medical staff) that i survived the brain bleed.
Long story short: over a span of 10 weeks, I had 2 very lengthy sessions of ONXY (glue) then surgery to removed the AVM. The procedure was a HUGE success in spite of all known risk factors. The only "damage" I have is from the large brain bleed itself: some peripheral vision loss and I can't concentrate when I'm distracted or over-tired.
You shouldn't ignore the advise of your trusted medical team. Life is full or risk, you just have to measure the risk. Best of luck to you.

PS My bleed and ensuing medical treatment happened in 2007. In 2012, I had additional testing which revealed that my brain was completely free of any signs of AVM, but I do have one very tiny aneurism that the doctors are not at all concerned about.

#46

You also might try posting this question in the Teens with AVMs group to get perspectives from people your age. I’d also get at least another professional opinion. No matter what you decide, we’ll always be here for you.


#47

Hello,

I have an AVM in my brain since at least since 1976 (when I had my first grand mal grand seizure. I continued to have them periodically but my medication seemed to restrict seizures to localized only.
Have not been physically restricted but have had about 3000 localized seizures over a 41 year period. Doctors recommended surgery at first discovery of the AVM (they had forgotten to do an MRI until 15 years after the first seizure). Was told that while 80% of surgeries correct the problem, 10% remain the same and 10% are worse off. Since I wasn't severely restricted form normal life style I decided to avoid surgery. When I have the localized seizures I am not able to have conversation or remember anything so I just relocate shortly. They usually last several minutes. I am sure You are thinking very seriously about the surgery. Possibly you could consider leaving the AVM alone and see how it may affect your life .

Bless you in your decision.

#48

My granddaughter was told that her AVM was inoperable due to the complexity and amount of veins (?), so her parents opted for the gamma knife surgery. She was 13 at the time and we won't know the total results for three years from surgery. She has had a couple CTs since the surgery and they are seeing a reduction or closing off of some of the feeders, but not as much shrinkage as we had hoped. She will be 16 when the three years is up and now that she is almost 15 is saying that she WON'T do the gamma knife surgery again. Hopefully, the AVM will have shrunk enough that an craniotomy is a possibility, as that is the only surgery she says she will do. We will urge her to seek a second opinion. My granddaughter's AVM was also on the right side behind her ear - small, but deep. Prayerfully, consider your options and if a second opinion is available - ask for it. Watching my granddaughter deal with this has been tough, as she has had side affects that apparently only 20% of the AVM patients (that had gamma knife surgery) normally experience. My prayers are with you and your doctors. How was your AVM discovered?


#49

I only knew I had an AVM after a bleed in brain in my mid 30s ten years ago. I had two operations to remove the AVM which went well. I suggest you explore all treatment options and find the safest and most effective one. Also get others to support and pray for you which will help you to feel stronger to face the challenges ahead. 10 years after my bleed and operations, I lead a very happy life now. It's a journey through which a lot of people helped me though.


#50

It was discovered by having a seizure in my sleep. But medical staff and ambulance staff were being stereotypical and alumina it was because I was taking drunks or alcohol (which I do not do either) so it took a long time to actually find out what was wrong months for an Mrs it was terrible. My mum thinks I had a mini bleed because when I stopped my seizures half my face had dropped and one pupil had blown so I’m not 100 %. But it is terrible how these days how staff of hospitals just assume things and then put you at the bottom of the waiting list.


#51

Hi, Sophie. I had a large AVM on the right side of my brain. Up until it bled I had no idea it was there. I was 36 with two young children. The odds were greatly in favour of having it removed and I really had no choice as the chances of survival with it in place were very low. The bleed initially left me without the use of the left side of my body. My operation was performed by Mr Nelson at the former Frenchay hospital in Bristol. I was referred to Hallamshire for gamma knife, some 12 months later after a check up revealed some residue.
I was told it was extremely rare to survive such a large bleed and was visited by doctors who saw my scans, and who wanted to see me for themselves.

Bleeds can obviously be fatal or have very debilitating long term effects.

I guess you need to weigh up the odds and talk to as many people as you can before reaching a decision. If you choose not to go ahead, I would think with such a large AVM the bleed is likely to be significant too.

I wish you all the best in coming to a decision you are comfortable with.
Regards Angela


#52

I'm so sorry to hear about your experience of discovery. My granddaughter was having (what we thought was migraine) headaches and her pediatrician would not prescribe medication until she had an MRI. So, her AVM was discovered by a good doctor that doesn't believe in prescriptions without knowing the reason for the symptoms. YOUR STORY is exactly why my granddaughter had treatment at 13 rather than taking the "wait and see" approach. Our fear was that she would be in a college setting and those around her would not recognize what was going on (at a party or activity of some sort) if she suffered a bleed. It's not like she wants to talk about IT (AVM). I could envision that very few people around her would even know that she had an AVM (she never talks about it) and she would suffer the "assumptions" of health care professionals as you did. It's almost like those with an AVM need to wear a MEDICAL ALERT bracelet. Now that I've typed that - I think that everyone SHOULD do that. Keep gathering information and ask God for wisdom in making your decision. I'm putting you on my church prayer list, so know that 200+ people will be thinking of you and praying also.


#53

Hi Sophia, My AVM was found before rupturing back in 1992 after being injured in a head-on collision. An MRI detected it. But only after I got a second opinion review of the MRI images. The first doctors missed it. Lucky me.

I was in my early 30s and physically fit. After much discussion and research I decided to have my AVM glued shut. What made me decide to finally have the surgery was when my doctor, Joseph Zabramski at Barrows Neurological Institute here in Phoenix, said "the short term risks of surgery are far less than the long term risks of not having the surgery." Because one day the AVM will hemorrhage. And the older you are the more likelihood there is for resulting long term affects. Your parents are right; you're young, healthy, which gives you an enormous advantage.

To give you some perspective I was participating in Triathlons, marathons, cycling from the mid 80s through 1992 when I had the accident. Doctors told me expect to be in the hospital at least one to two weeks. Then occupational therapy for a month or so. They were a bit off. I went in for surgery on a Thursday morning, woke up late Saturday, and went home Sunday! Only four days. Very very fortunate. I and my doctors attributed my unusually fast recovery to (1) my relative youth and (2) my physical condition.

As all of us will tell you here, brain surgery is no party! It just sucks! But the surgeons, nurses, and staff in the neuro departments are the best of the best. And technology is much better and advanced than when I had my AVM.

You and I are fortunate in that there wasn't any rupturing of our AVM's. So you're already ahead of the game a bit.

Finally I'll share with you what I've shared with others here: you've got to get in your mind that there's no other option other than getting better. Recovery will be slow, tedious, frustrating, and will involve some pain. And you may have some permanent deficits. If you're the praying type it certainly won't hurt. You WILL get through it. A positive attitude goes a long way.

Hope this helps.

Bill


#54

Sad but often true regarding medical staff assuming drugs or alcohol with seizure. I believe it's just part of the "rule-out" questions they have to ask.
Anyway, Sophie, I am happy to report that I was able to return to work 1 month after my AVM was surgically removed. I started back just a couple hours a few days a week, and was back to full-time within 3 months. (I'm an Optician & ParaOptometric Assistant.) Life is good!


#55

Hi Sophie.
Wow, what a heavy decision. You must be exhausted and stressed beyond belief dealing with this. I hope you have emotional support: counseling, an amazing friend... someone. Use every resource!
I'm in the US, and am not familiar with the UK system, but I would have that blasted thing out. My son had an undetected AVM rupture, and it nearly killed him. Now he has severe deficits. Had I known about his AVM, I would have absolutely had it removed. I'd rather take the risk immediately, then live in fear of a time bomb in my brain.
Also, young brains handle trauma better than older brains. Neuroplasticity is a good thing.
That's me though. Listen to everyone, make your own decision, bring those you trust into your decision process. At the end of the day, all you can do is weigh the odds, and choose the lesser of two evils.
I'm sorry you have to go through this, but you'll wind up being stronger than you think, and you'll come through ok. I wish you all the best.


#56

I am 45 years old and had the same exact AVM issue although I did not know it was there until it ruptured which can be very deadly. Mine was also behind my RIGHT EAR and they said it was about a grade four which is as large as they get. you don’t want them to rupture because that complicates things Emmensily. After mine ruptured they had to do emergency brain surgery which resulted in leaking spinal fluid, damage to the brain due to the bleed, A seizure and staff infection on the brain. Two emergency brain surgeries two weeks in the hospital come to find out four months later the AVM was still there and I needed the same exact treatment that you are describing. I had the AVM embolized. On August 28 of 2015 which was a Friday the following Monday, August 31 I had a 7 1/2 hour craniotomy to remove the brain AVM.4 months later I m doing great and I AM very glad this is over for me forever! Make sure your doctor is confident and think positively about everything and it is the best decision you can make otherwise you risk rupture which is never good. Get it taken care of- you won’t regret it!! Love you avm sister!! Good luck!


#57

Hi Sophie, it is a good idea to go thru with it. I had the same. I had 5 embolizations (with the glue)and then one surgery where they were able to remove it. All has gone well. It was on the left side of my brain, and I am right handed... that was the scary side of it, but since they filled all the veins with glue in order to stop the blood flow, the AVM was considered a rock that was ok to remove. Good luck, I'm sure all will go well!


#58

This is so nice to hear. Thank you or your story it’s me me feel a lot better. How old were you when you had it done?


#59

I am so sorry to hear that it ruptured. I am very glad that you got through it all. Thank you for sharing your story it’s making me feel like I’m not the only one who has these problems because I don’t know anyone with it.


#60

Thank you for your story I haven’t got anyone to talk to about this because I don’t want to bother people and I don’t want to tell many people because they might see me differently this is why I joined this group and I have been given a lot of support which I am very greatfull. Thank you for sharing your story it has really made me see the plus side to having the treatment.