Severe Headache ended up with AVM

Hi, I just discovered i’ve AVM after go thru a MRI scan 2 days ago. It started with severe headache for 1 week. According to my MRI scan, that “little fella” is on my left hand side brain with around 2cm in size. Currently detect of bleeding. I’m totally clueless about this illness and schedule to meet up with my neuro surgeon tomorrow to further discuss on this matter.

From what i gather, i have the option to either opt for surgery or radiosurgery. At the moment, i will consider going for radiosurgery. Would sincerely appreciate if anyone out there would be able to answer some of my doubt.

  1. What’s the risk of radiosurgery?
  2. How long is the treatment?
  3. What’s the duration / procedure?
  4. What’s the chances of recovery?
  5. Is the treatment insurance claimable? According to my insurance policy, any malformation / inborn is not claimable. I need to know this is i sincerely need financial aid as the treatment is very much costly and i do not have saving for it.
  6. Any side effect after the radiosurgery? (eg: pain, vomitting, hair loss, loss of sight and etc)

Presently there are some many questions in my head which i really need lots and lots of clarification. These few days i keep asking myself…Why me? Will i survive? What if i dont have money for the treatment?

Anyway, it’s great to discover a support group which i could gather more information about this rare illness.

How long the treatment takes will depend on size .I did have a small amount of hair loss I could cover it with other hair.That and being a little tired was my only symptoms . Everyone is differant I had Cyberknife so I didn’t have screws ,which made mine less painfull.Recovery is differant for each of us. I hope you get the answers you need here.

With radiosurgery you will find people have different issues, some depends on the area in the brain where your AVM is. With radiosurgery it can take as long a 3+ years for obilteration. The smaller the avm the better chance of radiosurgery being effective. I know from the site and research some people will get brain swelling or necerosis a year or two later. With open surgery obilteration is immediate if they are able to get it all. The risk are bleeding, swelling, infection. Both options have huge risk, but doing nothing does, too. Your neuro should go through the options and risk. Depending on the size and exactly where it is located they will recommend what they think is best. Also, get several opinions from different doctors. Look for vascualr neurosurgeons. This site is full of survivors, just read our stories. It will give you hope and strength.

I found out about my avm the same was that you did…with a horrible headache for about a week and went to the ER. I had a crainotomy, actually 2 of them, and the avm is completely gone…but to this day I have had the same headache and it has never went away. They did decide that my avm did bleed several times so that is why they decided to do the surgery. With every procedure it depends on the area of the brain that they will be dealing with. Mine was also on the right side of the brain and about 4 cm I never had seziures before but do now…lol and of course lost a lot of hair because of the seizure meds and because of the shaving to do the surgery. I know that a crainotomy is totally different than radiosurgery but i just wanted to let you know a little about me and the open brain surgery side of it all. I hope you are handleing all of this well. I was only 20 when we found mine and had just gotten married 3 months before the discovery. It was so terrifying but having faith in God helped me out tremendously. There are reasons to everything that happens in life…just keep your chin up and remember to smile. :slight_smile:

Hi,

Definitely get a couple of opinions. I’ve found that some surgeons treat AVM’s aggressively and some take a more cautious route. It’s good to know all your options. And there are quite a few now. I had a proton-beam treatment. 24 years ago. It’s painful with the pins, but necessary and after the medicine kicks in, it is not so bad. I lost some hair in the back, but it grew back after a few months. Recently, I had an endo. treatment, which involves shooting glue into the affected arteries.

Read the stories on thiis network I think it should be of help.

Good luck.

Thanks Pauline, Janice, Britanny & Mike for your reply.

To be honest, now only i start learning to accept my illness (AVM). I keep asking god and myself …why ME? It’s definetely very painful and difficult period in my life to discover such as news.

This forum has provided me with lot of informations and it’s also comforting to know that many has survived.

I will be meeting up with my neuro surgery today and will definetely try my level best to gather as much information as possible from him.

Now my second biggest worry is the treatment cost. I was informed that AVM is not insurance claimable. Without getting financial aid from my insurance company, i dont think i could afford to go thru the treatment as it is too costly. How? Anyone out there able to suggest any solution? Or anyone managed to claim using their insurance?

Welcome Sally.
I too was recently diagnosed with an avm, mine is on my left parietal lobe about 3x4cm. I had two embolization procedures and will have stereotactic radiation soon…sometime in April. My Neurosurgeon felt surgery was too risky for me (could be size and location but I’m not sure why)
I am pretty much symptomless so I just live my life and try to forget it is there. I only had two episodes in the past year that caused me to question what was going on with me. I had a visual aura followed by numbness, tingling, dizziness, confusion, headache , vomiting… they happened almost a year apart but it was really freaky. I’m glad I questioned it and my Doc was proactive in getting it checked out.
Now as far as insurance goes my insurance has covered my two embo procedures almost 100%… thank God because my bills have added up to over $100,000. I have no idea what radiation will cost. You should call your insurance company. How could they not cover it??

Keep us posted. (hugs)
Rachel

Hi,

Met up with my neuro surgeon last week and discussed with him on my illness. He advised me to proceed with the radiosurgery soonest posssible.

Over the weekend, I went and consulted acupunturiest (alternate medicine - Chinese) and did discussed with them too. Apparently my illness is cureable and do not require any surgery or even radiosurgery. According to them, i just need to treat it for 2 to 3 months (with consuming chinese herbs as well as acupunture) and probably 3 or 4 months later for another round of MRI scan to check on the status. Should i believe in them? Guess i will try and find whatever possible and harmless ways in curing my illness.

I have spoke to my insurance agent and was informed that any malformation is not insurance claimable. Hence it’s another long and difficult process as i need to find ways in securing financial should i require any form of surgery or radiosurgery.

Anyway, so far am still doing good but with occasionally mild headaches and numbness on my hand.

Take care everyone :slight_smile:

Sally,
I know with my surgery (the 1st one) about a week before I had it my insurance company dropped me…and with it being so costly the hospital decided to pay for it for me since me and my husband both had jsut gotten married and were still in school, we didnt make much money. You can always look for financial assistance of any form whatsoever. Any help would be a tremendous weight lifted off of your shoulders. Since AVM’s are considered life threatening a lot of times, most doctors will find a hospital that are willing to accept you as a patient. At least that was how it was here for me. I am not sure where you are from tho. Just keep your chin up and remain positive. I am praying for you! What side is your avm on? One thing I have learned in life (just 23 years) is that there seems to always be something awful going on and you just have to think about things positive. No matter what the situation is there are always good things that come of it. Examples are for me and my avm…it helped me appreciate life and made me a stronger person. I am sure it will do some kind of great thing for you too. And plus we will all be here for you to encourage you every single step of the way!!! :slight_smile:

Hi Britanny, you are indeed very fortunate in getting financial aid from yr hospital. Somehow i find it rather unfair for any insurance company to exclude us from our claim. My insurance policy already with me for the past 7 years and i still continue paying them every month. From what i gather any form of “inborn” is not claimable. Any i will continue to write in to appeal and get them to re-access my case.

I’m from Malaysia and as far as i know, no hospital is willing to do it for us free…not even in government hospital as it’s rather costly. Well, it going to cost me around RM45k which is around USD13k for the initial treatment. This will be the biggest hurdle which i need to face it.

My AVM is on my left parietal. Well, i know i need to keep a positive mind. But somehow, especially when i’m alone, i tend to think negatively. Now i also need to stopped my favourite hobby which is scuba diving due to my illness. Err, it’s already 6 days since i know about my AVM. It’s still tough to accept this but all i need now is to save my life… :slight_smile:

Thanks for your pray and take care my dear.