We received the results of the cerebral angiogram this week and the AVM was found to be very small not as deep as they originally thought. They advised it is a grade 1 but too small for embolization. The interventional radiologist indicated he felt the gamma knife would be his recommendation since the AVM is so small he felt strongly it would only require one treatment. We see the neurosurgeon tomorrow and he will discuss more with us. I thought the Gamma Knife was used more for the deeper AVMSs? The radiologist indicated embolization would not be an option since the AVM is too small for the procedure. So it would either be via surgery to remove or the gamma knife. Since his has ruptured I know something has to be done in some way to treat it. Would appreciate very much any thoughts suggestions, ideas, to help us with how to approach the treatment.
Hi MJ,
I can see where this can be a little confusing for you. Gamma Knife is most often used on "inoperable avms". The deeper avms and very large ones are more common for this procedure. The down side of GK is, it can take up to three years for it to do it's job. The smaller avms quite often don't take as long.
The risk of the surgery to remove it play a factor in, what's the best way to treat it too. If the surgery option looks to risky, then most likely the dr. will recommend radiation (GK). If the dr feels he can safely remove it by surgery, then I'm sure he'll take that route. The location of the avm is an important factor to the dr to make the proper decision to safely remove it with minimal side effects..
I'm anxious to hear what the surgeon has to say and what he recommends. Please let me know once you find out and ((( Good Luck )))
Oh! One other thing -- When you meet with the dr. Make sure he/she explains all of the risks involved. The risk of the surgery (if that's what he suggests) and the risk of waiting for the GK to take effect (again, if it's suggested). Always make sure you know the risks involved. Even if you choose to wait to have it treated. -- You need to know what's the chance of having another bleed. Knowledged is our tool to help us make the proper decisions we need to make.
Ben
Hello MJ, On 10/31/12, an angiogram showed that I had a 2nd AVM in my cerebellum. The doctor tried to embolize it in January of 2013 but it was too small so I was sent to a neurologist who was qualified in radiation. This neurologist sent me to a radiologist and I had gamma knife done on this unruptured AVM in July 2013 and will have MRI/MRA's every 6 months until hopefully it is obliterated by July 2015. I believe the AVM is about 1 mm. I hope my treatment helps support the recommended treatment for your stepson.
Hi there. I was diagnosed in March 2005 with a very large AVM situated deep in my corpus callosum. I had had four bleeds by this time, diagnosis only after the forth hemmorhage.
April 2005 - first embolization - success in decreasing lesion size.
July 2005 - second embolization - success in decreasing lesion size.
Jan 2006 - third embolization- however too small by this stage for further success with this treatment method.
May 2006 - radiation- cannot remember which type this was but was certainly the most horrific- metal frame mounted into skull for the day long preparation by neurosurgeons and radiologists etc.
Jan 2008 - angiogram indicated a total cure and eradication of the vessels.
I would say if you can avoid surgery that will be good? Quite traumatic (not that the radiation wasn't but it lasted one day with no recovery from what I remember).
All the best with your treatment. Am happy to phone you if you wish.
Thank you all so much. Am I correct in assuming though that it must be treated - in one manner or another? Again it is about 3 cm in size, Thanks!
In 2006, I had radio-static surgery (GK) to embolize my 2cm unerupted AVM that was located on the left frontal hemisphere near the motor cortex. While they reassured me no side-effects, a year later, the right side of my body stopped working. My neurosurgeon was Dr. Isabella Germano, the director of the neurology department in Mount Sinai, NYC. She claimed that she has documented proof, of which I supposedly signed. Till this day, with constant requests, they never manufactured that proof.
The reason for me sharing this emotional situation is to tell you, and everyone, to be careful. Please do your research. Ask several neurosurgeon's opinions and recommendations. They should have experience in whatever surgery they are recommending, research that as well.
Currently, 5 years later, my physical state has improved 65%. I can walk but not run. My shoulder and elbow's range of motion is ok. Unfortunately the wrist is not, and my fingers are basically useless.
I can't emphasize enough about doing your research.
I was under the impression is was tiny. 3 cm. is a little over 1". Since you have had a previous bleed. The uncertainties of living with one of these is just that - uncertain. I think it would be a good idea to have it treated.
Ben
My AVM was diagnosed when it ruptured. If I recall correctly, it was a grade 2. My neurosurgeon recommended surgery to remove the AVM. We discussed the pros and cons, notably that with surgery, the AVM would be removed. GK would take some three years, each treatment had to be spot-on, and in the meantime, I would be at risk of another bleed. Also, it wouldn't necessarily be known if a treatment missed the AVM and affected a part of the brain adjacent to the AVM. The result would be damage that could take years to manifest itself.
I chose to go with the surgery as the AVM would be removed. However, as surgery is the most invasive and the AVM was in my cerebellum, I have balance issues, and most notably, double-vision. Something the neurosurgeon didn't even think to warn me of as it is so rare. I was an airline pilot and have lost my career.
I wish I had consulted with someone with GK experience so that I would have both options and risks explained to me. Perhaps I would have gone with GK.
Greg
Thanks Ben. The interventional radiologist used small and 3 cm and grade 1 all in the conversation so i assumed they were all similar. Thank you and everyone so much for all the information!!
Hi , I just thought I’d add to the other comments that my nuero said the smaller AVMs are more risky for bleeds. Mine is small to medium, don’t remember the exact size. 3 years ago I had 1 angio and 3 embolizations with GK to finish. I’m going in Christmas Eve for another angio as yearly MRI shows it hasn’t gotten shut down completely. The only complications I’ve had were blood clots in my lungs 1 week after the third embolization. I do have autoimmune issues that most likely contributed to the pulmonary emboli. Best wishes on your family’s journey with this.
Hi Mj. Once you choose your preferred way of treatment for your AVM, make sure your doctor is very experienced in working on AVMs. This site is a great resource if you are looking for a very skilled Doctor's who treat AVMS. Best of luck and let us know what your Neuro says tomorrow. You may also want to get a couple of opinions if your insurance will allow for it.
The best and probably most important suggestion I can make is to please do your research on doctors. There are not that many that are experts at AVM's, and some would like to treat just to get the experience in it. My son just recently had a 2cm right frontal lobe AVM removed. We chose to do the surgery because it was small and in the best place to reach operatively. The first set of doctors we went to all wanted to do radiation, but on a young teenage boy we were not going that route as there is no evidence of what it can do to the brain of a growing child. And quite frankly, none of us wanted to wait 3 years to see if it worked, while living in fear that it could rupture in the process. The surgeon/team we used came highly recommended by a friend whose son had 2 AVM's, the first ruptured and then grew back. Bottom line is to take your time and research all surgeons and interventional radiologists to be sure they have the expertise and knowledge in AVM's. Don't jump to any decisions. There is a lot of information on this site, and talk to people you know. As rare as AVM's are there were 2 other children in town with them. So you never know who has or knows someone with one. Let us know how you made out at the doctor and what they suggest. Good luck.
I spent all day yesterday going through at the University of Illinois Hospital health and science unit. the MRI was something loud that morning. Later on in the morning an Angiogram was performed. The results of the Angiogram was given to me that same day from the head physician. We talked about how it's been 4 years since my AVM aneurism, followed by an embolization. He went on to inform me that my AVM was fully gone and showed me pictures of the previous cluster. The whole unit came into my room one by one to see me and celebrate. I still can't grasp the relief. I still have seizures to cope with, but one of the neurologist there told me to follow up with him for treatment. My good health and 4 years worth of prayers have been answered. I'm looking to get involved with advocacy.
Yay for you, Anthony! Enjoy good health and thank you for sharing the good news. God bless you abundantly!
Thank You! My doctor was a heaven sent angel. The AVM was a nightmare from hell!
I have never heard of an avm growing back? my 100% eradication date is January 2008 and since then I have not had any scans or angiograms or anything related to my AVM.
MJ,
Good luck with what ever direction that you will choose!!! Can you ask GOD to give you HIS answer, somehow? I am no holy-roller, but since my medical-mayham, in 1990, I AM so much more Spiritual that I was ever in my younger life, and They can help so much more than we realize!
Lisa