Quantcast

AVM Survivors Network

Anyone out there that has NOT had a bleed or issues from their AVM?


#41

Hello there Jamie--

Thank you so much for posting your story and how you feel about what is going on in your life. How long have you had the headaches? I do truly hope that they get better and that you never have a bleed or additional symptoms.

Some of what you stated is what I am also dealing with--my cerebral AVM was found by accident. I incurred a concussion, so I went to the ER and they did an MRI/MRA. That was back in 2005. I always wanted to know the cause of my intense migraines, nausea, achiness, temporary paralysis and so on--I have endured migraines since I was 3 years old--I am now almost 50.

I have never had a bleed, and I have chosen, at this time, to not have anything done. The migraines have consumed our lives for the last 4+ years, as thy have gotten more frequent and last longer. We also have had a very good life--my wife and I have 4 kids, I have had a good career for the last 25 years, until the last 4 years, where I have been unable to work at all, and we enjoy our time outside of the painful days. It has been difficult, but we still move forward.

We look to God for His amazing healing, and if He chooses not to heal me at this time, we ask that I get some good days with relief of pain! I do not want surgery, and we do all that we can to ease the days that are painful--my family helps out so much by being understanding, and not judging or feeling put out when I need their help--that is the most important thing! I know that growing up with migraines, so many did not try to understand, and so little was known about this type of pain--there can be so much ignorance with the unknown!

I hope that this helps, Jamie, and whatever you decide to do, just make sure that you are prepared for the outcome, whatever it may be. That is a hard thing, but every day is a new day--we have challenges and we have successes--I have decided that not having any invasive procedures has more successes than down sides! I am content with that and so is my wife and family. I just keep living life with the zeal that I have always had, and I leave the rest in God's care--that is all I can do.

Please take care and write when you can. I would like to hear what others have told you, and again, we hope that you are healed of the headaches and do not get any more symptoms. Have a great day!


#42

Raveon -

I have opted to move forward with emobilizations and surgery. I want it gone! I simply cannot live with anxiety over not knowing what may/may not happen. I've spoken with 2 neurosurgeons who have both suggested the same route to take. My AVM is very operable, and my neurosurgeon has indicated it's in a great spot to remove. So, in that respect I feel comfortable with moving forward. I have headaches daily. Some less intense than others, but still, they are always there. They started about a year ago and have gotten progressively worse. I'm also now experiencing loud ringing in my ears along with extreme pressure behind my eyes at times. The pressure is absolutely more painful than the headaches. I simply can't stand by and do nothing. I feel like I've been given the opportunity to be proactive about a treatment and plan on doing my part to see that happen. I can't idle and wait for it to bleed. I feel certain that the outcome of a bleed will far supersede surgery.

Thanks for sharing your story! God Bless!


#43

I'm keeping you in my prayers, Jamie. My second embolization is scheduled for 11/4/13, then the gamma knife sometime in December. Don't be afraid to ask questions of your doctor, if you're unclear about anything. There is NO such thing as a stupid question.


#44

Jamie

Thank God they found it based on a headache and not a seizure , brain bleed etc....

Please contact Dr. Robert Solomon at Columbia Presbytarian Medical Center NYC before embolizations become the treatment. He is the doctor that you want to talk to if you have the option of leaving it alone and watching it over time. Ryan had 6 Embolzations , one Radiation and now a craniotomy to remove it. Embolizations were a poor choice for his AVM but we did not know better at the time . Therefore, after getting educated and aggressive about finding out the truth and going to the best doctor Ryan had an Craniotomy on August 21, 2013 and the AVM @ 4cmm was completely removed. He is doing great .

I wish you great success in all that you do . Be attentive and smart about this .

Best Rana / Ryan's Mom


#45

Jaime, I just posted my wife's Gamma knife treatment after two years. IMO, get it removed. Having a stroke if it does bleed is not good. But it is your decision. Talk with your neurologist and be sure he is a good one. I took my wife to AZ Barrows Dr. Nakaji a great doctor. God Bless, Aloha


#46

Jamie
whether to treat or not is a very personal decision because it will affect not only you, but your family as well. My daughter's AVM was found incidentally after a fall on the ice and a concussion. We chose to treat it, they were not able to do an embolization due to it's location, so our only treatment option was the cyber-knife radiostatic surgery. After the first series of radiation and steroids my daughter developed type 1 diabetes, they think from the steroids. Two years post treatment after an angio-gram to check on progress she developed severe focal motor seizures which took us 3 months to find a medication to control. She has been seizure free since, but we opted to retreat this summer due to it's not changing after the first 2 years. After this round of steroids/radiation Ashley has developed debilitating neurological pain. She has such severe burning and pain in her feet that she has trouble walking, she has been off work since July and can only sleep by soaking her feet in very cold water. I am still unsure if we made the right decision to treat and to re-treat, but Ashley was only 19 when we found this and we felt it was found for a reason, am of course going to always second guess myself as she was a perfectly healthy girl until we treated. Hoping she recovers but have been to Mayo Clinic in MN and still dealing with a ton of pain that nothing seems to manage. I hope all goes well for you whatever you decide. Alot of folks here have had great treatment and results so as I said it is a very personal decision, this is just our story. I wish you and your family only the very best!
Denise


#47

Denise -

If you don't mind me asking, where was her AVM located? After countless hours reading, I find that location and a doctors skill level has alot to do with treatment and how it was reciprocated. I'm so sorry your daughter has not been able to find pain relief. Did the doctors insist on treating it?

Thanks
Jamie


#48

Thanks, Andy!


#49

Rana -

I'm seeing a doctor that moved to my area from the Cleveland Clinic. He seems well versed in AVM's and aneurysms and I'm completely comfortable with his bedside manner and expertise. I've seen a doctor at UVA as well, but did not like him. I've talked to Johns Hopkins and honestly felt like a research patient. I'm sticking with my gut instinct. I pray God lets my faith work through him.

Thanks
jamie


#50

Jamie
Ashley's AVM is located in her left frontal lobe and the Dr's said that if she didn't treat it she would more than likely have a severe stroke/bleed, that she was lucky to have made it this far without one, so we felt we had to treat it, like I said, I am kinda second guessing that now since she has developed so many problems after each treatment....hard to know what is the right decision.


#51

Dear Jamie you have to be guided by your medical advice because as others have said our AVMs size location and type are all different. My bleed was from an AVM in my left temporal region and it came out of the blue i just blacked out in bed. My then wife grabbed a neighbour who gave me CPR thinking i had had a heart attack. Now this was 29 years ago and all the fantastic treatment methods now available were not even thought of. i was admitted into a rural hospital, there was no CT scanner there so i was completely misdiagnosed. After discharge i said to my wife that the FEATHERS on the tree she had just planted looked great. So i was sent to a major city hospital and a CT scan confirmed the AVM. A neurosurgeon said they could operate and tie the AVM off, i was 39 years old and i did not hesitate to say yes go ahead. The next morning a different Neurosurgeon told me they had decided not to operate because the AVM was in my speech area. The advice was do not go scuba diving, do not lift heavy weights, do not push cars, do not play football, and pray to your God. I did all this and 10 years ago i was in a Veteran's hospital and i told them as aside about the AVM. They ordered an MRI and told me that there was no evidence of the AVM or of the bleed so i just have to keep enjoying life to the max except for the no nos and i do still pray.

If i had MY AVM bleed today i would go ahead and have it treated. i have been blessed and try to repay the Universe for my luck.

All the Best Jamie from Digger.


#52

hi jamie i understand your situation very well i have a spinal avm i discovered it 6 years ago by having a routine mri scan because i was having a lot of back pain i was really shocked at the start as i had never heard of this condition so then i had to have angiograms done to find out exactly what was happening and the drs discovered that the avm is inoperable because of its location inside my spinal cord anyway after 6 years of hospitals and second opinions ive been told that if they operate i wil be paralyzed and if i have a bleed i wil also be paralyzed so i found this very hard to accept for a while so the best thing i can do is not have any treatment and just get on with life basiclly i suppose what im trying to say is that it gets easier over time to accept what the situation is and try to make the most of life im sorry for the long reply i just hope this is of some help to you take care


#53

Hi Jamie,

I know I already replied to this but I also wanted to give you a little bit more food for thought.

When making your decision on what to do, the most important thing is to ask your doctor what the potential side effects of treatment will be. This will all depend on where you AVM is located and will also take into consideration the surrounding brain tissue and it's function as well. Best thing to do is sit down with your doctor and ask them a few questions like

a) what are my chances of this thing bleeding? Based on the AVM, doctors can often times give you an estimate on what you chance of it bleeding is ( as i mentionedmine is a 1% chance per year cumulative so at the age of 60 with my diagnosis being at the age of 29/30 I will have a 30% chance of rupture),

b) If you were to treat me with gamma knife/embolization what are the chances of obliteration? Again using myself as an example radiation would have a 75% chance of obliterating my AVM. Embolization is not something that my doctor feels is an option for me due to the size of my AVM. In addition people usually have embolizations done before surgery to "dry up" the AVM. Usually it does not result in obliteration.

c) If you were to treat me with surgery/gamma knife/embolization what will the side effects and possible deficits I may have be? I think this is the most important question you can ask you doctor. Making a decision to have something like brain surgery is never easy. Sometimes we wish a doctor would tell us that we need to have it done or let them make the decision for us. Talk to your doctor openly and honestly about the issue you may run into after surgery. While your AVM may be located in one part of your brain, during and after surgery, the brain does swell and this could possibly cause damage to other areas of the brain surrounding your AVM. In addition, you will also want to talk to your doc about the genera surgery risks you would face such as infection.

Once you get these answers from your doctor you can sit down with your family and friends and all of those close to you and discuss if all of you can live with the outcomes/side effects of surgery or radiation.

I hope this gives you an idea of the steps to take when it comes to making a decision. Only you know what the right decision is. But I also want you to not thing of your AVM as a death sentence. There is a chance it could bleed tomorrow but there is also an equal chance that you will live to 95 and die of old age! You need to decide what is best for you based on the information you are able to get from the medical professionals.


#54

What does ur dr. Suggest? I had a small bleed and headaches and found my avm 4 yrs ago. Mine is not operable. My dr. Suggested gamma knife and I have have it twice. The reason for it is to try and shrink the avm and prevent it from bleeding. My avm has minimized with the two gammaknife procedures. Maybe that would be an option. Good luck with ur decision.


#55

Tina, Hi Andy here. Regarding your GK treatments. Have you had any edema that resulted in the breakdown of your GK? MY wife did and others too. She had one GK treatment.


#56

Well I've found out about mines by accident as well, but mines started to bleed and I had to be rushed to surgery fortunately they found it because it may have saved my life. Now that you know about it I don't think you can not know about it and just do nothing. Many people's experience have been different but think about it from this scenario: your walking down the street and have a seizure or your laying in bed and have a stroke mind I'm not speaking any of these things in your life but these are some of the realities of this condition so my suggestion to you would be, be mindful of not doing nothing!


#57

Andy, I'm not sure I understand what you mean by the "breakdown" of the GK. Did the GK treatments fail to obliterate the AVM or did the edema cause a failure of the GK? Please explain.


#58

Hi,
I'm Tammy. I found mine because I ran into something and needed stitches but I have suffered with severe headaches all my life. I just thought it was stress, sinus problems, my time of the month, everything you can think of.
So they found a 2.5 x 3.0 AVM in the left side, I found a neurosurgeon and he recommended Gamma Knife Radiation to treat the AVM. I did the research and was afraid of having a stroke or seizure and thought if it would get rid of my headaches it was a good idea. I had the procedure in July 2013. It went well and I only had 2 or 3 headaches from July 2013 till January 2014. Now I am at a loss. The entire month of February I have had a headache, vision problems, hearing problems, confusion. I have been in the hospital for 5 days because the AVM has swollen to 3.5 x 2.7 and it has bled. The doctor does not know why and I 'm ready to cut my head off!
I wish you luck and God bless you!


#59

I haven't had bleeds or seizures, but I'm glad I had treatment (3 rounds of Gamma Knife Radiation). During the first GK treatment, the doctors also found an aneurysm. I had a craniotomy to clip it and they found a second one & clipped it, too!

I do still have migraines, but they are fewer and tend to be shorter in duration and less intense since I've had the GK & crani.

I think I would spend my life worrying more if I hadn't opted for the treatment recommended by my neurosurgeon.


#60

Of course that the best answers you will receive is from your doctors; but, I did read in an academic paper that as one gets older the probability of a bleed goes down (as long as there have never been previous bleeds). Treatment has its risks. You have to evaluate with your doctor your risks (risk of intervention vs risk of doing nothing). And yes, if possible ask more than one doctor. My parents consulted with three different doctors; they all agreed that mine had to be dealt with (as is often the case with AVMs that have bled).