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AVM Survivors Network

Paralyzed or the chance to die

#1

My doctor decided, after 5 months investigations and discussions with other hospitals and doctors, that we shouldn’t do anything about the AVM. Dont awake the sleeping bear, sort of. I dont have headache or something like that, just epilepsi (caused by the avm) but i have medicin now. He said that I would have to do all the investigations every other year to keep track on the development of the avm.

I asked what would happen if I get a rupture. He just said “you’ll die.”

He says that my avm is too big and near the motor area and if we try to treat it, it’s a too big risk that I will get paralyzed in my whole left side of the body. But… Rather that than die?!

Can you or can you not count out when a avm is going to rupture?

What would you do? Should I trust the doctor and just live on with it? I’m 20 years old.

#2

I think you should just hang on and be careful. There’s not really much you can do now, so there’s no point worrying about it. & maybe at some time in the future there will be new treatments. I would get the advice of other doctors. It might not be as bad as he claims. Plus, it’s always good to have many different opinions, you can do it! Don’t lose hope!

#3

Have they spoken with doctors in the USA and Australia or only in Europe?
http://www.avmsurvivors.org/group/inoperableavms
Lots of members have been told that their AVMs were Inop. Some were told 25 years ago and they are still alive.
The oldest member we have here is in his 80s!
Just because you have a bleed does not necessarily mean you will die! I am living prove of that fact! I had a massive bleed and survived!

#4

He spoke to doctors in Boston (which said that they could do it) but he said that it's too risky and that they couldn't do it better than the doctors in Uppsala, Sweden. The thing is, that the Uppsala doctor said that he had too little experience. I think it's a question of money because if i would treat it in Boston, my county has to pay for it.
Thank you, And bless you!Feel better now to read that.

#5

Yeah. Just enjoy life! That's true, just wish it will come a better treatment! Thank you very much, I will get a second opinion!

#6

Hello Mia, I was in a similar situation when I was diagnosed at age 13. My biggest concern at that point in my life was controlling my avm symptoms. I called them 'spells' but they most likely were mini seizures. I was also told by my pediatric neurologist that if "I bleed, I'm a goner." It wasn't until 18 years later, when I got connected with a well-known adult avm specialist, that he told me, "will you die? No. Will you have significant deficits? probably." So all those years, my parents lived worried about my "time-bomb" when in fact a TOP neurosurgeon basically said, "That's bullshit.":) Try not to get down, live your life, listen to your body and enjoy yourself! The only restrictions I have been given is no more tackle football, no scuba and no PILOTING airplanes! HA :) AVMs are not death sentences! Feel free to reach out if I can help. GK

#7

Hi there,
First, it is so important that you dont settle for just one opinion.. 5 Neurosurgeons will have 5 different opinions!!! I was told inoperable many many times, until after a third bleed in my brainstem, i found the amazing surgeon in Arizona (i live in Ohio) that offered the surgery and save my life. It is so important to both enjoy your life day by day, but also research and do all you can to prepare for the future.

#8

My daughter, Desiree, found out at 22 yrs old that she had an AVM on the right side of her brain. She had a few angiograms done and lost some movement in her land hand because of the procedures. Drs decided that surgery would be needed to get the last 15% of the AVM. During surgery my daughter hemmoraged and had a major stroke and also went into DIC which meant her blood was not clotting. Drs put her in a coma instantly and had to have blood and platelet transfusions for over a week. She was in a coma for almost 2 weeks, needed kidney dialysis, feeding tube, trach, etc. Drs did not think she would make it but I NEVER lost hope and faith. After 2 months she left the ICU and moved to a sub acute rehab center for 4 months. Finally after 6 months she came home in Dec 2012. It’s now Jan 2014 and she is still unable to walk on her own. She can walk a short distance with a hemi walker and some assistance because of her balance but is mainly wheelchair bound. She goes to Physical Therapy twice a week. She cannot move her left arm, hand or fingers at all. Her left leg is stiff and she cannot bend at the knee and has a lot of short term memory loss. It’s hard for her and the whole family. She has body pains and headaches daily. She said If she knew then what she knows now she never would have touched the AVM. She said she would have rather “lived” with it than live the life she has now. I encourage her daily and am thankful everyday that I have my daughter but before deciding to have the surgery people need to hear the reality of what can happen. We never thought this would happen to “us”. My daughter is a college graduate with her Bachelors in Science (chemistry) and had just got accepted to Cal State Fullerton for the teaching program and now it’s all on hold. I know there are good outcomes BUT my daughter feels people should know the other side as well. She’s doing a lot better now than last Jan but has a long way to go. It’s so very hard to see my girl hurting emotionally and physically. She was so independant, traveled, loved going out with her friends and is now mainly homebound. Please pray for her and I hope you all have the best possible outcome. My heart goes out to all of you that has to deal with an AVM. GOD bless you all!!

#9

As with the others my first comment would be get a second opinion. One thing to ask is how likely they think it is that that your AVM will rupture (I was given a percentage per year). If it is very different talk to the first about what the second is saying. However once you have two or three opinions I’d stop for a bit, rather then going chasing for someone who says they can do the surgery, unless something happens such as you get more symptoms.

First my parents and then I and my parents lived with the knowledge I had an AVM in my brain from when I was about 6 years old. I already had a weakness don the right and bad vision, but that might/might not have been related to a bleed before birth. There were no symptoms it was a chance discovery. When it was discovered the risk of having the surgery was very high, then it reduced but I was 25 before I had the treatment. I was getting some headaches, not serious but constant. I had the treatment (four embolisations then craniotomy and another embolisation).

Taking that decision was very hard and I’m not sure if I would do it again dye to side effects.
If you decide not to have surgery/other treatment it is something you can revisit in the future. Equally if you decide to go ahead you might decide on a particular surgeon, not the one with the first opinion. You may want a short course of therapy to help you think about things with so done neutral as well as talking to friends and family.

One thing I hold on to and believe (mostly depending on the depression) is with this decision you can’t make the “wrong” decision. I don’t mean that the outcome will be positive, it might be negative with bad consequences but either way you took the right decision for you at the date you decided and that’s all you can do. You have to try to get past the “what if…”

#10

Hi Greg and thank you for your comment!
That feels much better and I should tell my parents about that too, because my mom is so worried about me all the time!
My doctor told me that as well, no scuba diving, no roller coasters or skydiving. When i asked about flying airplane he said it was okay, but you maybe mean that YOU shouldn’t fly?

#11

You're welcome, Mia. I meant I should not fly the airplane as a pilot. Like at the controls! lol :) Probably could if I had a copilot, but no desire really. I hope you are well. I am blessed that my mom was a Registered Nurse, so she was able to understand what was going on with me at a young age. GK

#12

Absolutely get a second opinion. But know this:my AVM burst at age 26 and I am now 67. I have a hemiparasis of the left side and I'd much rather be somewhat paralyzed than dead! I've lived to graduate college, have a career in child protection, have and rear three children in a 40 year marriage, and now have five grandchildren. The left side paralysis is a minor inconvenience.

#13

Good for you, Old Gator, posting this motivating reply and congrats on all your accomplishments!

#14

I've had two massive hemorrhages and have no neurological deficit :D Keep us posted. There are a few specialist avm clinics you might consider googling.
http://www.uhn.ca/KNC/PatientsFamilies/Clinics_Tests/Arteriovenous_Malformation

#15

Marnie!
I started to cry when I read this. Your daugther is SO strong and i bet she’s progressed and feels better now? How is she? What a legend. I send you so much love and hugs and please update me how she is. I did my radiation therapy and it’s soon 3 years ago and I’ll see the results of it. I posted a thread in the emotional support section if you wanna read my update.
Lots of love!