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AVM Survivors Network

Is there a time when u should just leave a AVM alone?

Hi everyone . I am new on this site because I just found out 2 days ago that I have a AVM. It is deep in the white tissue of the brain. I go to the Neurosurgeon on the 11th. I am wondering is there a time when u do nothing . I have high blood pressure but have had it all my life. I take blood pressure meds that work most of the time. I get terrible headaches sometimes. I have been in the er twice in the last 15 yrs with headache so bad my vision was blurred out, they gave me a shot of demoral and put me to sleep for a long time. Any feed back is appreciated. I am 57 active, healthy and happy :>)

Yep. Sometimes the risk is too great for treatment compared to the chance of a bleed. They were doing a study on untreated AVM's to see what the true risk is. It was just closed due to lack of participants though. My doctor told me he believes the rupture rate is lower than previously thought. Honestly if I was 10 years older I would leave mine alone.

Robin

how old are u , if u dont mind me asking. I am 57. Mine is very deep. The only thing i do get is sometimes bad headaches, like sometimes there is pressure behind my ear drums pushin out. Sometime if feels as though my head is going to bust , but it hasnt.

I’m 41. Mine is under my motor cortex so it is deep. I believe the on is cyberknife with no embolizations. It has less than 10% risk but only 65-75% cure rate.

I had a seizure during my sleep 4 months ago. It was right after a big sinus infection and part of my avm is by a sinus cavity. I had migraines the weeks before hand. I’m on. Anti seizure meds but decided I wanted to do something after originally being told nothing could be done because of size and location.

Hi, 9 years ago I had a high pressure and they ruptured a vessel and gave me an Aneursym too, that was just in the gluing prosses. I was 37 with 4 kids to raise on my own, there grown now so the truth. I did it for them.....I struggle with who I am now,because of what they did, if I didn't have my husband I would be lost, no joke. When you pick a Dr., follow your instinct.

Hi pongladi. Yes, there are times when one should leave an AVM alone, but that decision should only be made after seeking several opinions and understanding all of your risks and benefits. I would certainly recommend not committing to anything the first neurosurgeon tells you to do. I would take with you to the appointment a long list of questions that you have for him/her. If you can bring a friend with you to the appointment (and any others you may have), that is very helpful. Two sets of ears is better than one, so one person can write answers down and you can listen. Keep an open mind and don't make any rash decisions without collecting all of your pertinent information. Again, I can stress enough how whatever doctor you see, please make sure they are experienced with AVMs. In fact, this should be your first question. Don't be afraid to ask any questions either. This is the one time you have the neuro surgeon there for you and only you!!

GOOD ADVICE. THANK U :>) WILL DO

Oh wow, so sorry to hear that. Mine so far has not given me too many problems, so just not sure what to do. I will follow my instinct. good luck to you and best wishes.

Hope you are doing better. I have learned so much in just two days. I am nervous about my first appointment, guess thats normal too. I just don't know much about any of this other then my is very deep under the cerebellum in the white tissure. thats it.

Ask for a specific number because we learned that all hospitals seem to be the Regional referral hospital for AVM’s. If they won’t give you a number. RUN!!!



Also remember to ask if they have doctors experienced with avms when it comes to radiation oncology and radiation interventionilist. There are also different radiation equipment. Gamma knife seems to be gold standard because it has been around the longest. Proton beam and cyber knife can sometimes work on larger avms. So if a hospital says gamma knife will not work without embolization ask if cyberknife could.



There are more and more articles out there on higher graded avms should be left alone. Get multiple opinions because there are several hospitals that will give you a second or third opinion.



Robin

Hi Robin nice to meet you :> I spoke to a dear friend of mine last night and he has a PHD and is one of the smartest thinking people I know and he said , not to even worry about it. I thought wow, it sounds so serious but he did not feel it was serious in my case at all. I do get so confused. Did u have surgery and where How did it turn out thanks so much Brenda

great adive and trust me I am taking notes. thanks Robin and have a Happy Easter :>)

I have to agree with Debra on the point of bringing someone in with you. Mine happened back in 1989. I went in with my wife and she was able to talk and think like an intelligent person. I was so deep in panic that I could barely say my own name. I talked to two neurosurgeons. The one doing the operation was the surgeon developing the procedure. That is how we knew he was good at this operation.

You should sit down with the person going in with you and develop a list of questions ahead of time. Both of you should have a copy so you don't forget.

Good Luck with the doctor and let us know how things are going.

Hi pongladi and welcome to the site,

I agree with what Debra and Robin said.
I believe it's up to the individual and what there risks are and what the risk of the treatment may or may not be. I waited 16 years to have mine treated (with GK). That's only because I was having seizures and a few smaller problems from it at the time. It was pretty large back then. I'm now left with two small ones and I chose to leave these alone. By the way, I'm 51.

Ben

Armand i just told my husband what u said, and he told me not to worry he would be listening for the both of us. good, cause I am nervous to say the least.

Ben thanks for that feed back. It is sounding like location and current problems is the major factors for making my decision. I will deal with the headaches , I am so use to them. Not the really really bad ones but just the normal pressure ones. People on this site are so very kind and helpful . I am so happy I found it. Have a Happy Easter :>)

Yes. There are some avm's that can not be removed due to the location and there are people who have them many years with no symptoms and no bleeds. All of are different and all are rare. You have to go to a doctor who is very familiar with this type of surgery, usually a teaching hospital. Go to my page and you can read a bit of our experience on there. I wish you a long and healthy life.
Lea

Hi there, mine was discovered last May after a few headaches
that were horrible that I went to the Doctor. Mine is above
my brainstem by the midbrain. I am 44 years old. I went to
Shands Hospital in Gainesville Fl and they recommended the
radiation treatment. I would go to a University or Hospital
that has experience with AVM. They were great, they explained
due to its location, surgery would be to risky but recommended
the radiation (Radiosurgery) due to my age and that it was now
symptomatic (Headaches from Hell!). It does stink having to
wait a few years to see if it worked but is better then nothing!

.

Hi Pongladi,

First, welcome to the site. Second, you are the first person with an avm who has been scared and nervous (obviously just big time kidding)--your fear and anxiety is right on target with all of us here. You've never heard of AVM, now you find out you have one.

Print up your questions, make a copy for your partner, then at the appropriate time, just run down the list. If the doc steps out, start comparing notes on what you heard.

It's nice to hear stories from others, but the bottom line is all AVMs/patients are different, so in the end, you have to evaluate the pros/cons on to treat or not based on YOUR situation. Obviously, at least a 2nd opinion from a place that's treated a bunch of AVMs LIKE YOURS is required.

Then take your time, talk about it, and hopefully you can reach your decision. Whatever you decide for YOU, is the right decision!

Best wishes,
Ron, KS