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AVM Survivors Network

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


#21

Thank you for your sharing, Rachel!


#22

Thanks for sharing your story Aimee! I hope the new job and insurance work out and you find a plan that alleviates your AVM!


#23

Kenny - Can you share with me the hospital and doctor that you used to treat the AVM? 8/8 is my bday and the same day I had my angiogram done! WOW!

Thanks
Jamie


#24

Thank you for sharing, Rebecca! Organization is the best way to be! I hope your husbands journey is a continued success.


#25

The same happened to me I found out I had AVM by accident to and I know how you feel It’s better to treat it before it bleeds. I didn’t want to do the surgery but it was better to do it before anything bad would happen and now since I had my surgery a year ago I’m glad I did it. Yes it was terrifiying but now its all worth it …that I am alive and healthy. Even though no one my age understands what I went through its okay I still fit in nothing has or will change. This is your life the only one we have solive it to the fullest extent. Be strong because if you do the surgery your in for a hard journey. Best of luck to you Jamie


#26

Hi Jamie!!! I have NOT had a bleed. I'm in my fifties and have had headaches since I was in my twenties. In the "old days" they did not have MRI's. Because nothing could be found on neurological exams, I was told to live with it. So, I learned to live with it. I didn't mention it to doctors anymore because I felt it was worthless to bother. I wish I would have bought stock in Tylenol and Motrin, because I used a bunch of it over the years, to no avail. About ten years ago I was sent to an ear specialist for pulsatile tinnitus(hearing my heartbeat in my ear), only in my RIGHT ear. About 18 months ago I started having a tingling sensation on my left facial area, accompanied by a bout of nausea; all of this lasting less than ~30 seconds or so. The reason I mention all of the above is because they are all symptoms of an AVM. After tracking my symptoms for several months and looking for any type of correlation between times/activity/etc I was FINALLY referred to a neurologist in December of 2012. The MRI showed an AVM ~3.5cm right temporal region, and a number of aneurysms. Thus far, I've had one embolization and one coiling of a large aneurysm. I'm scheduled for my next embolization on 11/4/13. After that, at some point, I should be getting gamma-knife treatment. For me, personally, I didn't want to take the risk of a bleed. Like Rachel, I put my faith in God. So far, the surgeries have been a success. You need to do what's right for you and your family. I'll keep you in my prayers, Jamie. Please, keep us posted. We're here for you, whatever you decide is right for YOU.


#27

Princass -

My doctor recommends 2-3 emobilizations followed immediately by a crainiotomy (after the last emobilization). He thinks the gradual gluing effect will allow him to safely remove the AVM completely. How are you coping with the emobilization? Are they giving you any bad side effects? Ours are exactly the same size, just different areas of the brain. Do you mind if I message you directly?? I want to move progressively quickly with mine. I was diagnosed mid July and want to start emobilizations no later than 11/1/13. Knowing I have it, just makes my anxiety worse. Thanks for your response :)

~jamie


#28

My doctor also planned on 2-3 embolizations and then possibly gamma-knife. So far, I've had one embolization and one repair of a large aneurysm. I'm scheduled for my next embolization on 11/4/13. After the embolization, I felt like I had a MAJOR hangover for about a week or so. Beyond that, some headaches in the region where the AVM is. I suspect that's from the process of the gluing shutting down the errant vessels and the body re-routing the blood with new vessels. I felt EXACTLY the same as you, with the anxiety; I wanted to get this taken care of asap. I felt like I had a stroke dangling over my head. My risk factor for surgery, based on the AVM location, was memory issues and possible loss of sight. I figured I could have those problems if I had a stroke. I explained it to our adult children like this: it's good news, they found the problem and they can fix it. Of course, you may message me directly. SMILE!!


#29

Almost exactly a Year ago I found out I had “something” in my head due to a soft bump that had a pulse. By Christmas I had been through several doctors and finally knew it was an AVM. My treatment included an embolization in March and June followed by an almost 2 hour gamma knife treatment yesterday. I personally feel lucky that I found it before a bleed or seizure and have been able to treat it with zero side effects or limitations on my regular routine.


#30

It may be frustrating to deal with the side-effects of treatment, but a bleed is a type of pain that you can't imagine. It hurts so bad and so long and there is no relief while the pain is going on. There's no thinking through the pain or reasoning through it. It's unbelievable. You can't function. And then once the pain is gone you deal with a you that suddenly can't do some things that you were always able to do before, that you were even really GOOD at before. There's no aspect of you that does not seem changed in some way. I wish I could have bypassed the whole experience myself, because after two years I still find myself struggling with things that should never have been a problem for me and it's discouraging. Good luck with your choice. You may be lucky and you may never experience that sort of thing, but there's never a guarantee. I don't wish that experience on my worst enemy. Thank about it and spend lots of time reading up on it if you are not already. Eventually you know what is best for you, so good luck with everything in the interim.


#31

Well said, DeAndra! I'm praying for your continued successes in recovery. Keep fighting!! God Bless.


#32

Hi Jamie,

I hope your feeling well. I have had two embolization's and craniotomy in May. I too used to suffer headaches(migraines with optical aura). My headaches were gone after the first embo. My AVM was in my right occipital lobe. I also had aneurysm so to me my only option was surgery. The aneurysm was ready to go. I can't complain everything went very well for me. I had not had a bleed and was healthy While I still get some visual disturbances I have not had a headache since. If you have any question just reach out. I wish the best for you.


#33

Treat it, even if conservatively. I'm surprised your doctor didn't give the whole spiel about how you'd be crazy to not treat it, even if it's asymptomatic.

If you're worried about putting your life in a surgeon's hands with resection, and if you just want to keep on keepin' on, you should seriously consider getting radiation.


#34

Jamie, I went over 20 yrs after my diagnosis as a teen to finally NEED treatment. Check out my blog when u get the chance. All avms are unique and not necessarily "ticking time-bombs". I have lived ,and continue to live, a normal, healthy lifestyle with my avm. I wish u the best in ur research. Find a good TEAM of surgeons to consult. -GK


#35

Hi Jamie,

My surgeon's name is Dr. Daniel Barrow and he is the head of the Neurosurgery Department at Emory Hospital in Atlanta, GA. I just met with him on Monday, exactly one month after the surgery, and was cleared to resume regular activities.

I wish you all the best.

Kenny


#36

Amazing you are doing so well! I hope for your continued success, Sampson!


#37

Thank you for sharing, DeAndra. I'm moving forward with treatment, and pray that everything goes smoothly.


#38

Thanks, Tcm423. First emobilization is scheduled for 10/10/13. I can't live with knowing I had a chance to treat it and didn't. So, emobilizations and surgery it is! What are the visual disturbances you experience, if you don't mind me asking?


#39

My doctor emphasized his suggestion of emobilization w/ surgery or radiation. I'm not a patient person, so I'm forgoing the radiation. Emobilizations with surgery are what I've decided on. The risks from that seem less than gambling with time and just hoping it never bleeds. Thanks, sgomex11!


#40

Thanks, Greg K!!