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I need advise


#1

Hello there , I’m new to all this . After a excruciating headache I was told that I have a AVM about 6 cm big. My question is I feel like I want to just continue my life as it was before I was in the hospital I don’t want to see doctors there’s no medication that doctors told me they can give me I feel like if it’s going to happen to me and Anytime Anyplace is going to happen as far as the avm is concerned I don’t want to live scared but my family is expecting me to quit working stay at home almost be " disabled" . This is something I don’t want to do I want to live life is normal. I haven’t had any more symptoms nor headache since I left the hospital I don’t take any meds but to be honest I am kind of scared that this thing can pop in anytime anyway can I get anyone’s input as to where you continue how do you continue without having that AVM on your shoulder wondering today’s a day is going to pop? As far as surgery that isn’t an option for me because I raise my one year old granddaughter and with all this side effects I don’t think I can take that chance that is why I say I just want to live my life. Does that makes sense to anybody or are these feelings normal in the beginning?


#2

As horrible as it’s going to sound despite you raising your grandchild you need to take it easy (I don’t remember the weight limit for carrying) but you should restrain from several things. I was told both extremes of both don’t do anything and live life to the fullest since it could be months or my whole life until it would ruptures again and I just lived my life normally (my mom was visiting and staying with us for a while and don’t see eye to eye so we argue alot) and all the added stress and carrying my 1 year old added up and it ruptured again in 4 months. I was going to get surgery to remove it a month before it popped again but that surgeon chickened out and told me Id be fine. Don’t want to be an extremist but to make my long story short now I am disabled. Trying to get my left side to work again and after 10 months my hand is finally responding but I can also finally walk with assistive devices. And Im about to get botox for my spasticity on Friday. I wish that doctor who chickened out would’ve told me to take it easy instead of live your life. After it popped again I did have a craniotomy and embolization and at my 6 month angiogram I was told it’s gone but no one can snap their fingers and give me back my body how it used to work. So not meaning to scare you but do take it easy. Not to the point of being disabled but remember take it easy but at the same time live your life.


#3

I also didn’t feel any symptoms again until the week leading upto my second rupture and I should’ve run but tylenol seemed to fix it so that gave me comfort but boy was I wrong. I sometimes beat myself up with the should’ve could’ve type of thoughts. I’m much closer to the finish line recovery wise but it’s just a thought I wanted to share with you. And as silly as it might sound disability life is not as simple as just being home it is actually quite difficult or at least it was months ago. I had a high risk pregnancy with my son so if anything take life as if you had a high risk pregnancy and don’t want to go into labor yet.


#4

Thank you. Funny, as much I love my mom , her and I can’t be more than a day together with her. I suppose I should probably see a doc and at least get informed. It’s almost I wanna ignore that its there yet no symptoms no meds I’m fine right?! But it’s inevitable. I have been reading alot and everything sounds so familiar. :expressionless:


#5

I understand your feelings as the AVM world is new to me, too. I struggle with doing nothing since most days I am feeling back to normal and healthy. However, I do get reality checks every so often (bad headaches, fatigue, etc.) that urges me to do more research in deciding which treatment to go with. Based on your story I feel like you would benefit from a sit down appointment with your doctor with a list of questions and concerns and a notebook and a relative or friend. That way you can write everything down and have some one else there to help ask questions you didn’t think of or remember things that were said and you can go home and review everything as needed. This process has helped me greatly. This website has helped me, too: brainavm.uhnres.utoronto.ca I can’t tell you what you should and shouldn’t do. All I can tell you is what has helped me. Research, talking with my neurosurgeon and a radiology oncologist, and taking mental breaks from it all as well. I can’t ignore it but I can’t obsess over it either. I keep my husband in the loop with how I am feeling and we know exactly where to go in the event of another emergency. It’s a lot to process as well as a long time for the body to heal. Respect and listen to your body. Some days you can do more, some days you need to rest. You are not alone!


#6

Yes, totally normal feelings and makes perfectly good sense, This is the million dollar question, this is what we all deal with and we all know how difficult it is, we are all different and you have to do what you feel is best for you, follow your heart, it will never fail you, If you choose no surgery then you have to learn how to live life knowing it could happen anywhere, any time, but also know surgery is not a cure all, have you looked into the embolization option ?? Sounds like your next best option, just know your not alone and we are all here for you, best of luck, be strong and keep us posted, talk care,


#7

@JessNtx2018 Dr Lawton who is now at Barrow in Phx - where they will review your scans for I think around $100 to see if what they say- He is the best in the United States. He may think he can get to with angio and embolism - Recovering is much easier- you never know.- I have seen on here so many times where people have been told by their drs nothing could done and Dr Lawton has been able to do something. I have seen his work when he was at UCSF and many can attest to his work. - I choose to go with Stanford just because I was already there seeing the head of stroke and then I was being seen by the head and founder of neuro radiology Dr Marks who was able to contain most of my avm by embolism.
I know just in the few months that I had to wait for my 1st embolism mine had grown and was more complicated than the scans had shown-
we are here for you!
Hugs
Angela


#8

Hi Jess. Thanks for posting your story. I think you are being really brave. I too have an inoperable AVM. It is in my Cerebellum and is large (at least 5cm). Despite this it is unruptured and largely asymptomatic. Although several other forms of treatment have been considered for me doctors are generally urging me to go away, leave it be and try to forget about it. As if I could ever do the latter! But I have been really lucky. I was 12 when I was diagnosed and am now 45. So I have lived with this for a while. Most folks here seem desperate to treat their AVMs at all costs but it isn’t like that for me. I have young children and a brilliant life that I don’t want to spoil with what could be endless treatments or deficits. Your post makes perfect sense to me. Best wishes Lulu


#9

Hi … lulu !
I need to send a BIG Thank you . I have a a rough week. My mind has been over taken with the thoughts of this dam avm. My avm is approx 6cm. It’s on the right front part of my brain. I see my Neuro on the 26th . So eventually I’ll get all the lingo down. I’m at a cross roads. I read endlessly post after post. Some so positive and successful others not . There are definantly some very brave people, fighters. I am 41. I wake up every day and pray that today isn’t the day. It was comforting to know that years can pass and life can continue … May I ask , did u ever try any treatment? Have u had complications?


#10

Hi Jess, I can understand as a parent where you are coming from, however if i did undergo my AVM issue with children I think it would of been fine and I would definately be happy knowing it was removed… It would of been very tough and hard but i know I would of got through it and see the light at the other end.

Essentially only you can decide what is best and if you can live everyday without the fear of the AVM rupturing then that is your choice, however keep in mind if you dont do anything and the worst does happen then how much of those side effects would affect you then? I think if you suffer a bleed there is no telling how severe or minor it could be.

You need to weigh up your options and think about your choice with a clear mind… again this is your choice but you will be fine at the end of the day as many of us here are living proof… Like you my AVM was located on my right frontal lobe and unfortunately I didnt have an option as i did suffer from a bleed 2 weeks before i was scheduled to see a neurosurgeon as I had found out by accident during a CT scan… all my life prior to this I had no symptoms at all and the reason I was given a CT was due to a headache that wouldnt go away after the gym for a week, which I add was unrelated go figure lol… God bless!


#11

My first appt with my Neuro is on the 26th. Other than some mild pressure head ache every now and then I feel fine . If I have to compare the head aches its more like care sickness, if that makes sense. More than anything. I keep telling myself that I’m fine and nothing is gonna happen yet I have this lingering fear that " today will be the day" I’m so scared. :cry:


#12

Jess, as horrible as it is finding out you have thus AVM and the news sending you into a tailspin of worry and doubt, it is truly a gift to find out it’s there before a rupture. I would strongly urge you to try to make arrangements to have the surgery to remove it (if that’s possible). We had no idea at all that my daughter had an AVM until it hemorrhaged and nearly killed her that day. Only my quick reaction to get help and the fact that we were in a city at the time saved her from death or severe lifelong disability. As it is 18 months later she is not the girl she once was. That rupture stole so much from her and us. We are very grateful for the extent of her recovery all things considered but she is physically and cognitively disabled. Her emotions are extremely volatile. She has anxieties and fixations she never had before. At just 11 years old She is certainly not living the life that most of her peers enjoy. I wish you strength in finding your way with this AVM. Ask lots of questions on the 26th.

By the way, my daughter had to have 2 craniotomies. The first the day of rupture-January 5, 2017 and the second on May 7, 2018. The second wasn’t expected but an MRI from this February revealed residual AVM that couldn’t be seen before because her brain was still swollen. The second surgery went extremely well. She was home on day 4 post op and yesterday it was 6 weeks since and she’s right back to where she was before. Seeing the difference between emergency brain surgery and a planned procedure was very eye opening.


#13

You really should see a specialist to get a diagnosis and treatment plan and go from there. I had a much more difficult time recovering from a burst AVM than the radiation treatment (which I had little side effects). A burst AVM could kill you and the effects last a long time. I ended up having a craniotomy to fix a leak of brain stem fluid that was coming out of my ear and the month long recovery from this was much easier than recovering from the AVM leakage. A leakage could cause damage to your brain that can be permanent.


#14

Thank you. I agree . I plan to talk my neuro. I am so scared at thought of a brain surgery . The risks even scarier for some reason. Yet knowing that this thing can kill me or leave me with out any quality of life lingers on my mind. Once I talk to the Dr . I hope have a positive plan. Maybe even some sunshine on my life . Lord knows I’ve been having the saddest pity party ever. I’m scared and I’m tired and I really miss me . Thank you again … and THANK you everyone for all the advise


#15

Hi Jess, first of all thank you for sharing your story. I want you to take comfort in knowing that it is possible that nothing may ever happen with your AVM. Some people go their whole lives with an AVM and never know it, because nothing ever occurs with it. Second it is possible that if something does occur with it it could leak and not rupture. Which gives you ample time to understand symptoms and get treatment. I pray that nothing ever occurs with your AVM. I do understand your choice to go on with your life and leave it be, especially with a little one in your care. I wish you the best.

Jessi


#16

Jess,

And my piece of advice is that you’ll probably need to understand risks associated with the procedure and its likely outcomes versus the risks you’ve got leaving it as it is. 6cm sounds quite big, so I have to say it sounds to me like operating on it won’t be a breeze. I think you could have a tough choice.

But… don’t feel pressured by anyone to make the decision. If you don’t understand what the docs tell you, ask again. If they don’t tell you enough to make a decision, ask some more. It’s your life, your risk and your choice.

We’re always here for you as well but we do have our own specific experiences, biases.

I hope you get some options that look ok. Very best wishes,

Richard


#17

HI Jess. Sorry I haven’t replied before now. The answer is ‘no I have never had any treatment’. When I was first diagnosed (1987) I was told the AVM was a ‘birthmark on my brain’. They didn’t even know what it was then. Medical technology has moved on so much. But despite this I am still told my case is too risky to pursue treatment. Surgery is completely out and although Gamma Knife may be a possibility here in the UK cases are directed to the specialists - Sheffield. Their opinion is that my AVM (5cm approx.) is too large and its position too prone to causing deficit. For my own peace of mind I have to take that decision as being final. It has led to acceptance of my condition and I try to take each day at a time and not dwell on things. After all, it has made me the person I am today. I just hope and pray I never have a rupture. Take care.

Lulu x


#18

Hi Jess. Do you know if embolisation/Gammaknife is an option? My AVM was 6 cm and I’ve had 4 embolisations and 3 lots of Gamma. Surgery wasn’t an option due to size and location. I was told I had a 40/50% chance of a cure due to size but have now been told that most of it has gone and my consultant hopes that another embolisation will get rid of the rest. I’ve had 3 bleeds but thankfully not major ones. It may be worth finding out what the options are as sometimes surgery isn’t the only option. Sarah x


#19

Hi there…my avm is 6cm . At the hospital i was told the radiation was not an option. To be honest, all i know is the minimal info i got when I was in the hospital which is location size and the dangers of an AVM. Tomorrow will be the day I get to ask all the questions and decide what option will be best for me as far as treatment goes if any.


#20

Very best of luck tomorrow!