Hi Susan , I do appreciate your input, originally the neurologists were saying that AVM was to large to embolize therefore suggested radio and then embolization, but now the neurologist in Sheffield is saying that they can do radio in x2 treatments . I had trouble with the angiogram as they could not find the arteries and severed a nerve and I am having problems with my leg, that is mainly why I cant make decision as they will have to give a angiogram and MRI each time they give me radio, with this reasoning my head is exploding with the indecision, but the more information I am reading from the AVM family one minute is yes the other I am holding back with worry, What part of the continent are you in residence? I am from the UK but I was borne in Spain , Thanks for all your time.
I don't have any headaches.... But a side effect of my bleeds was that I now have epilepsy and tremor in my right arm and leg. The tremor caused me to have an 18 hour awake operation to insert a device in my brain that controls the tremor. And due to all the meds and cortisone I received in hospitals I now have a lot of problems with my hips, knees and ancles.
I am 53 years old, I found out about my avm when it ruptured, I was 18 years old. Lucky for me, it healed. My Drs told me that it could rupture again. When I was 22 they performed surgery. It was on the left side of the brain so affected right side of my body. You find the best Nerosurgen, and you get the surgery. Please let us know. I will pray for you.
Hi Mary,
It was discovered when I was 46, an AVM in my brain. The docs didn't do a MRI until then but I had my first grand mal seizure at 26. The AVM caused it. I didn't go for the suggested surgery because going into my brain with surgery just wasn't appealing. Also, my seizures were controllable through medication. While I still continue to have seizures (petite mal as there called) they haven't restricted my life at all and I am 66 now
Please let me know how you are doing.
bob
Oh, Marina, my heart goes out to you! (from Houston, Texas in the US, BTW) Folks who haven't dealt with AVMs can't imagine the fear. When my AVM was first diagnosed, they frightened me sufficiently ("this is a ticking time bomb") that I didn't question or seek alternate opinions. After one partially successful embolization and another unsuccessful attempt, I interviewed four surgeons and got three different treatment directions before having "good old fashioned brain and spine surgery" (My most dangerous one was feeding from the basilar artery, wound around the spinal cord inside the dura, then feeding into the main vein going through the spine.) My only regret is that I didn't have the calm logic to do that kind of vetting the first time.
I expect that we all wish sometimes that someone could just tell us what to do. But letting someone poke around in our brains is the most uniquely personal, lonely decision anyone can make. This group is so incredibly supportive and wonderful, but it still comes down to our individual research, situation, and confidence in our neurologists.
Hi, Mary. I think it's really important that you seek treatment for your AVM if treatment is an option. It's expensive, even with insurance. But hospitals will usually work with you on a payment plan. Also try negotiating your bill if it's just too much. Amazingly enough, I've had family who had their hospital bills reduced just by negotiating on the price.
The risk of AVM hemorrhage increases with age, but there's no way of knowing if you'll live a long and hemorrhage-free life or if you'll hemorrhage tomorrow. My medical bills were crazy high, but you can't put a price on a life. Good luck!
hi mary. I was 26 when my brainstem AVM ruptured We had no pre-existant notion of it Im lucky to have survived
I do have permanent disabilities due to it but thinking back to the beginning of this dr's told me & my family id never walk again proved them all wrong I use a walker & wheelchair to ambulate but i get around Anyway now onto the good(isn) part
We sought medical advice from several neurosurgeons an many of the more conservative mindset and they were all to afraid to touch me lol
many times my family and i left meetings in tears. There seemed to be little hope
We consulted the original Dr. who diagnosed me and he determined tje AVM was seeded to far in the brainstem for embolization. He recommended cyberknife surgery for extracting the malformation I realized the risks involved (long-term) but had to consider what my baseline chances were for survival.
After 2 session i was done & now i am scheduled for yearly angiograms to see the progress of the AVM.
Look:long-story short> there is no definite answer for how long we got after an avm is discovered. There are so many stats and possible outcomes based on yearly analysis that will honestly make your head spin.
Its hard to do- but make the best of everything you got. We are all lucky in one way or another.
Honesty god Bless and please feel free to ask any question you have
Sincerely
Scott D Harris
Mary,
I am no doctor, so here is just my opinion. I believe that there are so mana KINDS of AVM's and so many different types of AVM issues, that it is hard to answer your question about living long with it. I believe that each AVM is different, so some people CAN live w/a mild AVM, yet others can not live long w/ a massive, problem AVM. However, what are YOUR specific symptoms coming from your AVM? (Headaches? Migraines? Seizures? Grand Mal Seizures etc.?)
I have the largest kind of AVM, and over 20 years ago when I was in my 20's, I DID get worse and worse w/ my migraine headache and grand-mal seizures. I had grand-mal seizures, and year by year, the seizures got more frequent and more intense. So, when I was 29 years old, in 1990, I elected to get brain surgery, because I could not take my symptoms any longer. I got most of my AVM fixed by a miracle neurosurgeon, Dr. Robert Spetzler, in Phoenix, Arizona.
Mary, do you not have any insurance to help with any future monetary assistants?
847.392.8159 Please leave a message, because I rarely pick up calls if I am not aware of who they are. Thanks
Lisa A. Stuckel
What a great review, Lisa! Thank you!
I wish Mary would rejoin the conversation and let us know how she's doing. Her post was in early 2012, so all of our posts this month may not be helping her, but I hope they will be helpful insight for all of the people currently trying to figure out how to deal with their AVMs. I'm so grateful for this group - advice I got here led me to the surgeon (miracle worker) who took care of me. The support of people who have been through the same fears and difficulties is irreplaceable.
Hi All,
Anyone with AVM. Pl. consult :
Dr. John Reevey Cantwell : Director Critical Care Hospital - NeuroSurgery
http://www.neurosurgery.vcu.edu/people/cantwell.html
Dr. Daniel Rigamonti: Director of RadioSurgery
http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_are...
I was advised Non-Invasive treatment for my AVM which bled on 10th Nov 2010 and I was in ICU for 3 months. It is now more than 3 years since I had a Radiosurgery by Dr. Daniel Rigamonti. In another six months I will be fully assured that there will not be one more bleed.
Dr. Reevey Cantwell stablized me at Critical Care hospital, Richmond, VA. But for Dr. John Reevey Cantwell I would have been dead at Age 24.
Giridhar
Now back at India working at INFOSYS from Nov 2011.
I been diagnose with avm last 3 years.. from 2010..
I didnt had any follow check up...
Even though I like to had a follow up check up I cant afford it...
Hi Mary,
You have to get your medical records and fight for finality. Go see the social worker at the best hospital near you. Tell her you have an AVM.
Avmās are like Cancer in the way they are all treated differently. It depends where it is. Some are sub-surface and can be removed. My son has had so many things done. His are Iām n his brain. Please go see the social worker. Keep fighting for your rights. God BLESS you!
in my case, mine was discovered via MRI and followed up by a CTA and ruled to be not active,, basically what this means is at some point it must of ruptured and sealed itself up with calcium and now has no activity or rather blood flow coming too it or going from it, i believe they call this Spontaneous occlusion, this is a rare instance but does happen to few AVM sufferers, it is like some have said "wining the lottery" anyway,, in my case it is best not to do anything more for it as i am 50yrs old and am better off without future intervention, i do have some deficits in blance and coordination and slightly in speech but that could of been from the bleed that caused the AVM to seal itself,, bottom line for you would be to get it checked out whenever possible and weigh out all your options, as this is a serious matter,, good luck to you and God speed.
Yes you can live long. Take care of yourself, exercise, eat right, and do calming things/techniques. I had an AVM rupture at the age of 25 and I'm now 29. My downward battle with doctors and surgeries became an uphill battle when Charity Care got involve. Stay strong and try not to stress hard. blood flow to the brain builds up pressure during stressful moments and can be devastating.
Hi there. I hope you realise by now that everyone has different opinions and is in a slightly different position. There is no right or wrong answer here about whether to treat an AVM or not. Some people might think Iām mad. But I chose not to treat mine. It is not symptomatic in my everyday life and doesnāt cause much bother. It hasnāt ruptured and is in a difficult position to treat. Therefore the risk of deficit from treatment has always seemed much greater than the risk of a rupture. I am 43 now and my AVM was ādiscoveredā when I was 14. Good luck.
I had an undetected avm that ruptured at 51. Dr. says you have about2% chance per year of a rupture so at 51 I just passed 100%. I wish it was discovered sooner as it almost killed me and I have multiple defecits to overcome. do anything you can to treat it before it ruptures.
The risk increases every year 2%-4% of rupture and if it does happen to rupture the risk of it rupturing again is much greater. A rupture is very dangerous, it can lead to stroke, paralysis, and even death. If there is any way, please talk to a neurologist about any options. I got radiation but everyoneās AVM is different. I am 24 and found mine at 23. It is very important you stay on top of it. Best of luck
Hi Mary,
I have an angiographically occult AVM (the vessel canāt be seen on an angiogram) which was discovered because of seizures when I was 28 years old. It is located in the most active part of my brain and I chose to treat it through drug therapy rather than let a surgeon poke around in this very sensitive area in my brain where I potentially had a great deal to loose. I am now 59 years old and have had a fairly fulfilling life. I may be wrong but when I discovered my AVM I was told that the longer I went without a re-bleed the lower my chances of a re-bleed were. Physically I am in good shape and I think that has been a great help because I have fewer seizures when I am in good shape because of lower blood pressure. The only area where I have struggled in life is in my job. I have a hard time concentrating through the day with a lot of desk work. If, after talking with your doctors, you decide to use drug therapy donāt be afraid to try new prescription drugs and new drug levels to continually improve your living situation. My long winded answer to your question is yes, there is a potentially long life without surgery. But, donāt give up on it, there may be programs available to allow you further treatment without much additional money. Itās imperative to make your decisions with the help of doctors though, your situation could be completely different than mine! Good luck & keep on it.
Hi, I have the same question How long can we live with this condition. I havenāt see a doctor for about three months now, before that it has been years. I have only been treated with medications but I know something is wrong my headaches for the past months have gotten worse and the area is swelling I really canāt afford the doctor also he asked for an MRI I cannot afford that can someone answer this question. How long can we Live without medication intervention or surgery
You have been through so much. Incredible.