AVM Guide For Patients & Their Families - Question #5

AVMSurvivors.org is in the process of preparing a guide for individuals that have been diagnosed with an AVM. The purpose of the approximate 20 page guide is to provide hope for a vibrant future, information about treatments, life expectations, and help for family members encouraging an AVM survivor. Over the next week, you will see me asking various questions concerning your AVM experience that will be shared in this guide.By participating you will be a source of help & encouragement to newly diagnosed AVM patients, their family, and concerned friends. So over the next week or so, be looking for questions from me concerning your AVM. By responding to these questions, understand that your answer may or may not be shared in the guide. After the questions have all been answered, a team from AVMsurvivors.org will begin the editing process, which will conclude with a guide that for many years can be a reference of hope for those in our growing community.

Question #5 - What treatment did your physician recommend for treatment of your AVM? Did you elect to do that procedure? And if you did, what was the outcome?

As an example, my physician recommended to my family an emergency crainiotomy because my AVM was profusely bleeding, and the AVM was clipped via the glue method. My AVM is now dormant, and not expected to present any future problems.

Thank you for participating, we are getting so many useful results from the questions, and the team looks forward to your answers!

Blessings!

The AVM Guide Team

James Larken Smith - Project Manager

Hi James - I don't think (?) anything was recommended??? (I wasn't the official recipient of such) but I did a few full therapy rounds including neuro-psych, PT, OT, and Speech plus others.

Hi James
Last year I was given the options of Stereotactic radiosurgery (GK) with embo, Micrsurgical excision (crainiotomy) or leave it. As I currently very few side effects i am leaving it, but this could change if I find it too difficult to live with. I found out about my AVM last year.

My Neuro recommended stereotactic radiosurgery as it was too risky to treat my avm any other way. I had this done on the 26th April 2012. State of avm is currently unknown but it is expected to close off within 3years. I was told there waas a 70% chance this treatment will work.

We first tried embo, in 2 sessions. The second one wasn't successful, he said he couldn't reach the artery he was hoping to get, but said it was no big deal. After some deliberating, I decided not to wait until after I had the baby (I was around 4 months pregnant) and to just have the thing removed. The craniotomy was a success but I'm still hemiparetic, as expected LOL:)

My son's surgeon recommend resection of his facial AVM, as it was still relatively small (half the size of your thumb) and well localized. We had the AVM resected, the facial nerves were saved, the scar is minimal, and two months out from surgery, things are looking good. The surgeon is 98% sure he got it all. My son will keep being monitored for recurrence.

My surgeon recommending a series of embolizations followed by a craniotomy. I'd had a massive bleed and he felt another was imminent. My surgery was successful and the AVM was completely removed,

As my daughters AVM is cranofacial and diffuse the only option we had for treatment was embolization with onyx or glue. This treatment is only for management not cure as at present due to lack of credible research there is no better treatment .

ive had no treatment yet cant be embolized because of location mabye will have to have some kind of gamma knife treatment

Hey James!

Dr. Vardiman (from what I remember) gave me options and I picked the craniotomy to remove the thing surgically 100%. If I remember right, I just wanted this thing outta my head (literally). Had a little Bells Palsy of the face, double vision and dizziness and nausea afterwards. The nausea went away in a few months and they told me they got it 100%. Although I still wonder what would happen if I did nothing (hey pushed with weight training, had a baby the old-fashioned way, and even went diving and had pressure changes there), but can't go back and would probably do it again if I had to. Dang just realized how much I wrote. Sorry about that.

Smiled at this question…options were very limited back in 1988. MRI machines were practically non- existent…only one in all of Atlanta GA. Proton Beam was in its infancy. Gamma-Knife…not really available. After having spoken with 3 different neurosurgeons with 3 very different opinions. I chose to have a craniotomy done.
I was quite blessed and returned to work a little over a year after my bleed. It took about another year before I really felt I had my stamina back.
I joined this site to prove that you can survive and have a full life after a AVM bleed and a craniotomy. Not everyone is as lucky as I am but it can happen!!!

I had to have a craniotomy. Titanium clips were put in to clip the offending area.
I elected to have the procedure. I was 16yrs.
Later I saw a neuropsychologist to help with work problems,
I then saw another neuropsychologist as Life Plan A wasn't working and neither was Life Plan B or C. D or E....

First they wanted to treat mine with stereotactic surgery, coz it was too big and deep for surgery - the risk of dying was too high, I couldnt have an embo either, coz there were too many brain supplying feeders. But then a very good and experienced neurosurgical professor said, he could do the surgery with a 90% chance of everything going well. So i choosed surgery, coz I wanted that thing outta my head. It went pretty well and I am left now - physically with a 25% loss of my vision field to the left on both eyes and fatigue, plus some psychic issues. . They got it out completely.

James, I had Proton Beam Radiation to treat my AVM, but I had a massive brain bleed 6 months later. Sorry my response was not a great one.

Hi again - just re-read some of the discussion board topics - My ex and one sister approved the emergency craniotomy - I'm guessing the embo. was recommended by my neuro. surgeon to either my family or the Rehab. Hospital.

My AVM was not diagnosed until I survived my first and only brain bleed. Therefore, the first option, which I had no control over, was to embolize my AVM while in the midst of a massive brain bleed. This was the option that was presented to my family as a means to stop the bleeding which saved my life...AMEN!!! Upon waking up days later, the 2nd recommended treatment was brain surgery to resect the AVM. My family and I agreed to this treatment yet the surgery was cancelled as part of the pre-op process. As part of the pre-op process, they did an Angiogram the day before to mark the spot where the AVM was located. They then discovered that the embolization procedcure treated 85% of the AVM and it was too small and risky to resect ... another AMEN!!! I was discharged from the hospital 21 days after my bleed with the option to proceed with Stereotactic radiation via CyberKnife which I did agree to. One year later, after a followup Angiogram, my neurosurgeon told me that he feels as though this beast is GONE and am just waiting for the "official all-clear" report which should be coming very soon...the third AMEN!!!
I put my complete Faith into my physicians hands and trusted their judgement and recommendations and am so very grateful to have landed under such wonderful care who were able to save my life ... my final AMEN and Praise God for watching over me thru this!

James, my Neurosurgeon told us that I HAD to have surgery as I was having 'small' bleeds regularly, so we decided on having a crainiotomy. Unfortunately, when my surgeon was removing my AVM, he realised that it was twice as big as the MRI/MRA had shown. He had to remove viable tissue as the AVM was very deep in my brain & he had great trouble stopping the bleeding. My family were told that I wouldn't survive the surgery. Obviously I did (lol), but due to the size of the AVM, I have brain damage with memory, speech, reading, writing issues. I am now epiliptic due to the surgery & have seizures. I'm sorry that my story is not so good, however, I have come a long way, much more than the surgeons & Neuro's ever believed possible!! I am also positive and NEVER say NEVER!!, and thank God every day for my life and this wonderful Site!

My neurosurgeon said that both gamma knife and surgical resection were good options for me and it was my choice. I was very confused about which to choose. In the end, I decided against having my brain exposed in an operating room and decided on gamma knife. My AVM was declared obliterated after two year. Those two years of waiting transformed my life and made me a better man.

My surgeon recommended 3 options, embolisation, GK or CK. He felt CK was appropriate for my AVM. I opted for CK in April last year. I had an MRI scan one year after the treatment in April this year. The scan shows a decrease in the AVM. He said the rate of decrease was as expected. I meet with him again in April next year. He said it could take a further 18 months to completely remove the AVM.

Hello
First they said the MRIs did not show anything and wanted to do an angiogram to find out what was going on but we pushed back and then they did an MRA which showed retrograde blood flow and then I got to meet the head of neuro radiology who said my DAVF was magligant and suggested angiogram and possible embolism. I did have the angiogram and embolism the same day (7 hours) which they used medical glue and onyx. There was 30 connections on the artery side but they could only reach 29 and said the last one was too small...and also had a connection on the vein side which they left alone. They wanted to go back in for another angiogram after two months but I got occipital neuropathy since the procedures so I asked if it would be okay if we waited until next year. I did have a nerve block to help with the pain that lasted three weeks and then in March had 30 shots of botox in my head which took 3 to 4 weeks to help. I think I will have to have another round of them June or July. I wont let them do them in my neck or trapes again I had a bad reaction and felt very sick for the first 10 days.
Angela