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AVM Survivors Network

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


#1

I am torn between whether I should just leave this thing alone, or treat it. It was found completely by accident due to headaches, and now that I know about it....I honestly think I have yielded myself to feel more awful b/c of it. I've had 3 children, a very normal lifestyle, and I've never had issues until accidently finding out I have the AVM. I have read through posts here, and find a heavy heart at what most of you have been through. It's so saddening. I guess what I'm wondering is, are there people out there living with it un-treated? Or, for those of you that had no bleeds, strokes, seizures.....if you did get it treated, what was the outcome? What procedures did you have done? I am looking for any and all information for those that can relate.

Thanks so much and God Bless you all...
Jamie


#2

Jamie,

Welcome! There as many stories and outcomes as there are members here (about 6,000).

We had two young kids (4 & 6) when Chari's AVM showed up. No bleed, but grand mal seizure. Everyone has to make the decisions for themselves. For us, we thought it better to try to fix it, versus waiting and hoping.

We travel some, and often find ourselves HOURS from a major medical facility. If your AVM ruptures in such a place, the odds of a good outcome are probably less good. If your's bleeds, the closest hospital DR will operate, whether he's treated an AVM or not. If he doesn't operate to stop the bleeding, you might die. We thought it better to have it treated by someone who deals with AVMs day in and day out, without being rushed.

It's worked out well for us as her AVM is now GONE. Took two proton beam radiations, 4 embolizations, one brain surgery to fix an aneurysm, one surgery to remove the last of the AVM, and one ankle surgery to fix a foot drop resulting from an embo.

Chari started this process in good health at age 40. Youth is an advantage to healing I think.

But it is a personal decision. You have to feel good with whichever you choose. Once you choose, it's the right decision for you.

Best wishes,
Ron, KS


#3

Thanks Ron, for sharing your story. How has your wife been since the treatments/surgeries? I think it helps to hear experiences and then opinions from varying doctors. I definitely cannot forget I have it. So approaching the best option now, is my biggest fear.


#4

A little more background. Her AVM showed up about 1991, and was deemed "Inoperable". Technology improved, and (the short version), her AVM was completely gone in 1998. She's had some leg deficits as a result of one of the embos, but otherwise, very healthy. She can't run or play tennis (the leg issue), but otherwise, you'd never know what all she's been through.

She successfully fought colon cancer last year, and is doing GREAT now.

Best wishes in your journey.

Ron, KS


#5

Hi Jamie, I'm in the same situation as you. Never've ever had any symptoms, or recurrent headaches, no seizures, no nothing ... I'm fine physically because I've always done a lot of sports (running, gym, kitesurf, ...).
I doubt much whether to treat. Nobody can guarantee as remnant after surgery and that worries me. I do not want to stop practicing my hobbies, no I think that rather not be alive ...
Much encouragement.


#6

Have you had any recommneded treatment options from your doctors? I'm of the belief that it is best to treat if possible. I never had any problems with mine either other than headaches (I didn't knwo I had it) and then I had the major bleed. My surgeon told me that had I known about the AVM before my bleed he could have removed it successfully and I wouldn't have the defecits that I do now. Like Ron said, it's a personal decision but I would just suggest you seek multiple opinions from reputable AVM specialists before you decide to treat or not to.


#7

Ron -
Thank you for being so candid and sharing your wife's struggles and winning over both the AVM and cancer. What a brave and strong woman she must be!

VICS -

Thank you, too for sharing your thoughts. It's always tough to decide how to proceed when faced with so many questions/doubts.

Trish -

I've been told by my doc that mine can be treated one of 3 ways. Radiation (have to wait 2 years to see if it works), Surgery (go in, cut it out), or Emobilization prior to surgery (glue it off, then cut it out). My AVM is in the left occipital area and I could have impairments and/or complications with my vision on my right side after surgery. However, it has not bled as of today or caused me any known problems other than headaches and fluid build up in my head (causing severe bags under my eyes and pressure/pain behind the eyes). So, it's really up to me how to proceed. Surgery in any form, is scary. As well as the unknown.

Anyone had any luck with emobilization with surgery??

Thanks for all that have responded thus far,

Jamie


#8

Hi Jamie I am responding to your message regarding leaving or treating the avm . I was in the same situation that you where . Mine was discovered in May 2012 whilst at work I had a seizure and an MRI showed I had this thing in my head shock, horror. I have been fit and well all my life. I waited 9 months before choosing to have any treatment preferring to ride it out and take my chances however during my decision time I thought about it constantly as it pecked away at me to make a decision. I have been lucky and have never had a bleed (thank god )and never had a headache.
My neurologist is Mr J.O. Farah at the Walton Centre Liverpool England explained the 3 main options of treatment and I elected to have Stereotactic Radiosurgery in February 2013 , this treatment seemed the least intrusive . This treatment may take 2 to 3 years to work by using your bodies DNA to shrink and dry the avm. In your message you say that your avm was discovered via headaches, so I am presuming the headaches are caused by the avm. The risk of a bleed in the brain from the avm is a concern to all of us with a brain avm and my neurologist explained to me the risk of a bleed increases each year that we get older.

Always remember that everybody’s avm shape size and location are generally different and the best advice is best taken from the medical professionals. I found that keeping myself busy helps me stop thinking about the avm and I’m sure with 3 kids you don’t get a minute .
I had an MRI two weeks ago and have just discussed my results with my doctor , he said that its the same size and has not shrunk and that’s normal as its only been 6 months since my treatment . He said I must be patient and wait. I hopes this helps you .
Dave


#9

Hi Jamie, I am so sorry that you have just found out that you have an AVM. My 16 year old daughter was like yourself, had a very normal healthy lifestyle without any symptoms whatsoever then suddenly out of nowhere suffered a brain bleed last April from an AVM that we never knew was there. It was in-operable because of the location so she had gamma knife radiation done this March. So far so good with how she is feeling but won't know any results for another year. It is a very difficult decision to make as to leaving it alone or having treatment I wish you all the best in the world!

Lisa x


#10

Hi I’m a girl of 21 and had my avm embelliosied but it went wrong and I had a bleed and due to this I have many disabilitys now I was having headaches is that what u said you was having? …people can live with avms untreated but if you know its there you obvi dnt know what will be best…I have asked the nuro surgeon a lot of questions so if you have anything you want to ask I’m no doctor but feel free to message me x


#11

Hi Jamie!
Check out my page for details. Bruit only, no headaches. Once they started embolizations I also had a couple of short, periodic visual field defects. I chose to treat it conservatively with embolizations. That worked for 9 years when it developed an aneurysm. The surgical decision was a no-brainer (Oooh, did I REALLY say that???) ;-) Without surgery I would certainly have bled and died. We are all different and you are wise to ask!

FB


#12

Jamie my AVM was found by accident. At first I wasn’t going to do anything after all I had it from birth, but when the angiogram showed a larger aneurysm the choice was clear…surgery. For me the surgery was a breeze and recovery has been pretty much uneventful. Yes I have headaches and my right eye flutters and vision is changed but for me these are small consequences to pay. I have my follow up in October and my eye exam next month.


#13

Jamie,
I have a large size AVM in my L temporal lobe. I have two daughters, when my youngest was 3 months old I had a CVA and when awoke I was terrified and constantly questioning how this could happen without me knowing it?? I was involved in cross country, volleyball, and track every yr. in high school. I can relate to you in that here I had two kids and was terrified to have surgery because of the risk and how at that time I was feeling alright?? For me and my children I decided to trust God and the Dr.'s to treat the AVM. I have had 4 rounds of embolization, 2 rounds of Gamma knife and I'm feeling great for the most part, I have a minor seizure disorder. Very rare headaches(possibly 3 migraines a yr.), ironically I stayed home today because of a migraine...Possibly meant to be so I would read your story?? =) Praying for peace of mind for you and your family in whatever you decide. If you have any questions regarding Gamma Knife and embolizations feel free to ask =)

Rachel


#14

Hi Jamie,

Thank you for posing this question. I was diagnosed almost a year ago, and my AVM was found because I was having what I thought were numbness and muscle spasms, and turned out to be simple, partial seizures. No loss of consciousness and no other issues...No headaches or anything. I was originally told that I, too had the options of embolizations followed by craniotomy or gamma knife. They did a Magnetoencephalography (MEG) test, and determined that the results showed the AVM was too close to my right side facial and dominant side motor skills and speech/language to attempt embo/craniotomy. So, I went for a consult for gamma knife.

The doctor was honest and very frank, which I appreciated. It was a combination of a neurosurgeon and radiologist who would plan the procedure, but from his experience (he has treated 8 AVms in his career, and the university hospital I was at treats "a lot" of them..."like 10-15 per year"), and the size (4 cm) and location of my AVM (left parietal/temporal), he thought I would have a 50% success rate, and it would take up to 6 years to know if the treatment was successful.

I also have 5 aneurysms within the nidus and 2 on feeding arteries, which could also lead to a bleed caused by the GK.

I decided that if I were to move forward with the GK, I had to be educated and accept all that could come with it...I am just not there at this point. So, I am holding off on pursuing the GK.

I started a new job, and now have new insurance and will have to get all new doctors...So, I am looking at it as a second opinion.

Best of luck to you and I hope that you continue to have little to no issue with you AVM...I will be interested to see what you eventually decide! :)

Thanks,

Aimee


#15

Hi Jamie,

I am one of the few here who has known about mine for over a year, has not had symptoms but I have also decided not to treat it for the time being, I did have a bleed, however my bleed was from an aneurysm that the doctors were able to isolate and obliterate. Because my doctor was able to determine that this was the aneurysm that bled and not my AVM the AVM is still considered to be enraptured. Before my bleed I had no symptoms and even after having surgery for my aneurysm i have no symptoms that I am aware of.

As for why i decided not to treat is a person decision. For one thing i already went through brain surgery last year for my aneurysm (technically two brain surgeries, one to place a ventriculostomy in my brain to drain Cerebral spinal fluid and another do treat the aneurysm). WHile both surgeries were minimally invasive, it is brain surgery and the less brain surgery i have to have the better. I have a lot of life goals that I want to accomplish and with a lot of them I need to use my brain :p.

I have spoken about it at length with my doctor and mine is considered to be a grade 3/4, approx. 3cm in diameter, meaning that it is operable however my doctor also can't tell me what any deficits i may have after surgery due to the placement of my AVM. It is in my right parietal lobe but also boarders on the occipital lobe. Because removal of the AVM can cause issues to the surrounding brain tissue there is a chance i may have major issues afterwards with spacial relations, or motor issues with the left side of my body. I was given the option of having GK, but that would have a 75% chance of obliteration with a 5-10% chance of deficit. I have met quite a few people who have had gamma knife and a large majority of them have had issues with cerebral edema and tissue necrosis which is also something i want to avoid. The neurosurgeons I have talked to all agreed with me that proceeding for the time being with no treatment is probably the best option since they can't guarantee that i will come out unscathed and without major deficit that could affect my every day life and my ability to live it the way i want to.

I haven't stopped living my life after the diagnosis though. Since last year I moved to Alaska, did a 20 mile bike ride and climbed a 3500 foot mountain. I just watch my blood pressure to make sure that it is stable and if things start to feel difficult I slow down a little bit.

There is always the risk of a bleed...in my case I was told a 1% chance per year.But I also know that there are many new technologies coming out that could help the way we treat AVMs and am kind of holding out for some additional research that may lead to less invasive AVM treatments as well. They may not be doing a ton of research on AVMs specifically but we have to remember that gamma knife is primarily used and was researched for use a treatment for brain cancer. I used to travel a lot for work and I always carried my MRI and CT films with me, plus I would get the name of the nearest neurosurgeon that specializes in neurovascular surgery. I also have a medical alert bracelet that I wear as well as a wallet card that describes my issue along with mention of a history of hydrocephalus. Even here in Alaska I have a doctor that mine recommended and knows personally who can treat me in the event of an emergency. :)

I hope my experience has helped you somewhat. I am a little unique in my decision and I don't know if my decision will stand forever depending on technology and other medical advances we may experience.

I wish you so much luck and happiness and please let us know what you decide to do!

Cheers,
Lindsay


#16

Hi Jamie,

I recently had a craniotomy to remove an AVM which was found by accident, and I am very happy that I did. My surgery was on August 8th and I was probably back to 80% recovered within two weeks. The first week was a little more intense than I thought it would be, but all in all my recovery has been pretty easy going. I too feel very fortunate to not have had a bleed or experience any other complications due to the AVM, and I am definitely happy that my family and I do not have to worry about it anymore.

I hope, no matter what you choose to do, you remain happy and healthy.

Take care,
Kenny


#17

Hi Jamie,

I too have an untreated brain avm. I had already had 4 kids before it was discovered, by accident, during a ct scan for the lymph nodes in my neck. I had my 5th baby in May 2013, and everything went well.

When the avm was first discovered in February of 2011, I had an mri done, and they referred me to doctor after doctor. They told me that surgery was not an option due to the risk of paralyzation to the right side of my body (because the avm is deep in the left side).

Doctors reassured me that i would probably live until i was 98! However, per my request, i had a second mri done just recently, only to discover that the avm has grown from 1 cm to 1 1/2 cm.

So, I say trust your instincts.


#18

Hi Jamie,
It is a very hard decision to make. My husband has had his treated through surgery three times. This last time they could not get to two of the spots to put the glue and or coil into place. The choice that we made a year ago this Oct. was to leave it and live with it or to have radiation or open brain surgery. My husband is 70 and his doctor told us both if it was him he would leave it. Open brain surgery, he probably would not survive. Radiation takes around a year to start helping.
It was very scary to live with at first but we are now used to it and although he has headaches at times, nothing is to bad. This is after three major surgeries though. He has been through enough and the first surgery in 2010 did save his life. The second one also was positive but the third one he did have a stroke which has really slowed him down.
He has a lot of glue from the embolizations (which is part crazy glue) and also coils. This in itself also causes some confusion or speech problems when he is stressed or tired.
So, these are the things we do live with. He does over all but it affects us both.

The things you can do to really feel somewhat better. Set everything up in your life as if it is going to erupt. Find a great doctor (we have Dr. Zauner at Cottage Hospital, Santa Barbara, CA) who is the best. Make an appointment with the doctor and then set up your life again, not if it will happen, but when it will so that you can get help and surgery on time. We have helicopter insurance and my husband would be flown in to Dr. Zauner right away. Time is the issue. You would have to get somewhere within 60 minutes. Also, make sure who ever is with you is someone that would call right away and insist on getting you the best treatment. If I had not insisted my husband be flown into Stamford or Cottage he would not have survived.
Finally, if you do see a doctor like Dr. Zauner and he does think he can do embolization, going up through the brain and using glue to stop it and you decide to have the surgery. You can to prepare for this. My husband was a Marine and then a police officer. He was in tip top shape at his age and this really did help him survive the surgeries. I also was able to care for him and provide the support he needed. Planning and preparing for either situation is very important. You can really help the stress of both by doing this.
After my husbands first emergency surgery we went to lawyers, we talked to family members, and we built up a network of support. We told people if this happens again this is what we need. We also live prepared. Now that we do it doesn't bother me. Even having a gym bag packed and ready to go and knowing our neighbors would take care our or dog helps. These are all things you want to know would be taken care of in any emergency situation.
Anyway, I wish you the best of luck. Most of all, I know you will have peace once you put a plan into place. My husband was very depressed after his last surgery and stroke and after six months we both made peace with this. It isn't easy but being prepared and organized truly helps. It is the only control you can have. Again, good luck and God Bless You. Don't forget that it can also go away. This does happen. Take Care, Rebecca


#19

VKaye - I'm so sorry you are dealing with issues after trying to glue off the AVM! Have you had further treatment since? Praying for you!

Thx,
J


#20

Scotswoman - Where did you have surgery? Who was your doctor?

Thanks
Jamie