Does anyone out there have a similar situation?

Hi Tina, my AVM ruptured in 2002 and I happened to be at a hospital (for my daughter) when the bleed happened. I do think that if I were not at a hospital at the time of my bleed, there's a very good chance I either could have died or I may have been severely disabled (my AVM was quite large and I was 43 when it ruptured). In my case, I have found that the problems I incurred from my surgery (short term memory deficits, high level executive function) have continued to improve with time... It's been 11 years for me, and I have never regretted having my surgery :)

Just a quick note agreeing with Mary that you shouldn't base your decision on not having symptoms. My doctors believe I had my AVM for at least 23 years without symptoms or treatment, but two neurosurgeons independently described mine as "a ticking time bomb" when it was discovered. For me, the decision was terrifying, but easy, especially after reading many stories of people who suffered severe bleeds. Many people live full, long lives without treatment or even knowing they have AVMs, but I wasn't comfortable with the risks. You have great doctors - they can't decide for you, but they'll give you the best assessment for your situation.

Susan, that "ticking time bomb" analogy must be used across the board by neurosurgeons... my neurosurgeons described AVMS's the same way :)

Hi Mike…thanks so much for sharing your story. It’s good to hear a positive one . So glad you are doing well and AVM free.
Did you have embolizations as well? Thanks!

Hello Tina,first of all you have been seen by one of the best in the world…Phillip steig…he did my avm and the situation sounds very similar…if I can be of any help to you please contact me at my home …my number is 6035086193…I was 48 years old when I had my embolizations and craniotomy…I am very healthy and attribute all to dr.steig…call me…merry Christmas…Gail malliaros golec

Hi Tina,
I also joined this support group several months ago in February 2013 and have been in denial I am from the UK and the AVM was also found completely incidental I lost my voice while shopping for 15 minutes when to hospital the following day for a MRI , they found the AVM on the left lobe draining on the left ear. It is 4.5CM so I was told it was inoperable at the beginning embolization was suggested together with radiotherapy (gamma knife) but as it is big they will have to do it in two goes and he believes that embolization will not be required I have no treatment scheduled as the neurosurgeon has told me that as I have no bleed I have time to decide also as I am 59 time is on my side but like you I am having so many second thoughts. I have headackes but since I have been taking Fenatoin the headaches are much better. I have had 1 seizure, and the radio also carrys a 2-3% risk of problems and it does not guarantee that the headache will go, that is why I should monitor before deciding the only problem is that I have been able to go forward with my life . I am a widow and have been un-employed for the last two years so been an emotional wreck does not help as I start crying for no reason, Sorry I can help you in your decision, but I have been told that we have the most difficult of the decision , but also told that the younger you are the more benefits you get by doing the surgery. All my best wishes and would like to know what you have decided to do. Merry Xmas to all your family.

Hi Tina
My AVM was discovered when I was 9, the first 2 bleedings where in 1984 and 1986, at that time my parents decided. My last 2 strokes where in 2002 both on the same week, after that some specialists suggested embolization but after reading and lot I felt it wasn’t for me. Then I went to see my neurosurgeon at the time,I told him my doubts about embolization, and he agreed it wasn’t the treatment for me. In 2004 I had my last treatment in Loma Linda California, thank God everything went fine.
From my personal experience I would suggest that you listen to your inner voice, talk to your doctors and decide what you consider is best. I will be praying for you. If you want please contact me and I will be there to listen to you. My email is ■■■■■■■■■■■■■■■■■■■■■■■■■■.

Trust that God will help you decide what’s best for you and your children.
God bless you
Angie

Yes I just joined up. My surgery was 11/07 and I couldn’t be happier. No side effects and life is good Good luck and don’t wait too long they are unpredictable.

Hi Marina…I know exactly what you are feeling right now. You are not alone and I’m finding that the people on this site are amazing…filled with a lot of knowledge as well as compassion and support. I have talked to a few people on this site that have also used my surgeons and that has made me feel so much better about doing the surgery now, instead of waiting. You should join the UK group .Get second or third opinions and make sure the dr you pick has a lot of experience with AVM… Best of luck. Keep us posted. I will do the same. Best, tina

Hi…glad to hear you are doing well, outside of the depression, and AVM free. Are you taking anything for it? Thank you for your post…

In my case the AVM was discovered by an ear, nose and throat doctor when he ordered scans to make sure my mild hearing loss wasn't due to a rare type of tumor. He didn't think so/was just erring on the side of caution. Since I had some headaches - other neurological stuff going on, he ordered a whole head MRI as opposed to one limited to just the ear.

It was graded between a four and a five. Some said five, others four, in any case it was large, deep and everyone agreed inoperable. I wasn't a candidate for cyberknife or embolization but was offered gamma knife. Even though gamma knife tends to work best on smaller AVMs that's the procedure my neurosurgeon recommended and others I consulted recommended the same thing so that's the route I went.

Gamma knife occluded it and in just one dose/round of treatment. However the the gamma knife caused mass swelling which provoked major seizures. At one point after gamma knife I was on 26+ pills a day with the majority of those meds being three different types of "seizure" meds - and still I was having break through seizures.

Radiation also killed off some healthy brain tissue and later/years down the road I developed brain necrosis. Steroids helped some but not enough so I had to have a craniotomy back in April to clear that up. Of the two procedures for me craniotomy was easiest/gave the longest lasting, best/most satisfying results.

While many people who have gamma knife have an easy, breezy time of it not everyone is that fortunate. Everyone who has gamma knife is to be informed, told of the possible worst case scenario possible outcome/complications. They go over this before you have radiosurgery. Most people will never have that kind of outcome however when that one in however many people rare exception to the rule person turns out to be you... well then let me tell you - man does it ever really suck to be you!

Even though craniotomy seems horrible and gamma knife seems so much easier, simpler, better if I ever have to go through it again then I hope I am able to just skip the pain (gamma knife induce headaches big time) humiliation (just dropping whenever, wherever to have gamma knife induced seizures/flopping about like a fish out of water down on the ground pissing myself in plain full view of God and everybody) and all the "hurry up and wait" psychological torture B.S. involved with gamma knife and just proceed immediately, directly to surgery.

Not to mention if you have gamma in addition to all the things I already mentioned, until it occludes (assuming the gamma knife is a success and it completely occludes because sometimes you get zapped, have all those bad effects and it still doesn't fully occlude) you still have the risk of a bleed.

Any kind of bleeding at all in your skull - never, ever a good thing. In fact it's so bad that doctors are willing to risk doing what is essentially in essence a controlled bleed by operating on you. It's much better to bleed that way than have the AVM bleed.

I was actually surprised how quickly I recovered from my craniotomy. Discuss with your surgeon how he/she plans to address post surgical pain in particular in the recovery room after surgery when you first come to but also after. I didn't do that. Mine was an emergency procedure so I wasn't thinking clearly. In any case do discuss it with your doc. Make sure you are as comfortable with his/her after surgical plan of care, in particular pain management protocol/strategy as you are his surgical skills/planned AVM removal approach.

HI Tina - Yes, that is us! Our son turned 14 a few days after we came home from the hospital. You may absolutely give us a call!!

Hi Tina,
Did you happen to find my post on the AVM website, called my asymptomatic AVM story. It is very similar to yours. My Dr. was Dr. Solomon at Columbia/NY Pres
if you want to talk to someone or have any questions, i'd be happy to do so.
Lilia

Hi Tina,
My daughter’s AVM was an incidental finding. We brought her to the doctor for depression and when the doctor asked “what’s bothering you Jaime?” … her response was “well I’ve been having headaches… every day for 3 to 4 years”. This was a total shock to us…she’d never mentioned headaches. Anyway…our pediatrician sent us for an MRI right away and that’s when we found it. Jamie’s was on her right parietal/occipital lobe. She was diagnosed at 12 in May 2009. Surgery was July 2009. Its a personal decision but for my husband and I, and most importantly for my daughter, none of us could envision living with the fear of a bleed ! Jaime had 1 day for embolization and the second day was craniotomy. (After the embolization we were advised that it was a good thing we’d scheduled the next day craniotomy…that they’d found the AVM was bigger/more spread out than the MRI had shown and she also had 3 aneurisms…if second day surgery hadn’t been planned we’d be having an emergency craniotomy as one of the 3 aneurysms was quite large and looking ready to bleed…I could see it with my untrained eye)

Long story…surgery was a success ! Recovery was much better than we ever imagined. My daughter was running within a month. As for side effects…she has a field deficit in her lower left peripheral vision but it’s minor. Drs say she can drive. She got her license last Oct and is doing great. She is being treated for depression but we don’t know this to be related to the surgery.

If you are interested, Jaime was treated in NYC and we loved her doctors. Dr Berenstein did her embolization and Dr. Saadi Ghataan did her craniotomy. Let me know if you’d like their numbers.

Best of luck to you! Will keep you in my prayers !!

Hi Lilia…thanks for reaching out…I read your story and have been wanting to talk to you for a month now. Is there any chance I can call you if you don’t mind? Thanks so much, Tina

Hi Rhonda…I don’t know if I ever thanked you for this post. I felt terrible for what you have been through yet it made me feel better about choosing to have someone cut open my skull and move around in my head! My first of 2 embos is Monday and surgery on the 5th. Hoping for the best…thanks, Tina

Hi Tina, I'm heard you and Mike had a chance to talk, hope it helped. There are so many posts on here, Im not sure what the latest are. Did you decide to go with Dr Steig?

Hi Lyla…can I call you?

Hi Lyla…is it ok if I call you to ask some questions? I did it!!! Surgery was on the 5th & I am already home!! I read your story and I felt exactly every thought you did…it was unbelievable to read! Helped me a lot in sticking to my decision to have the surgery. Thank you.

Sent you a message with my contact info