Hey guys I was wondering if anybody here had treatment for a grade 4 AVM and what were the results. Also any doctors recommended, I'm in the process of sending my MRIs and Angiogram to UCLA for DR. Martin. My AVM is around 4.6cm and is in my motor cortex. Doctors in Chicago said that microsurgery was out of the question and that gamma knife was still highly likely to make me paralyzed. I was also told by a radiologist that hypo-fractionated radiotherapy might be a better option but that UCLA would be a better spot for that due to the hospital's high volume of AVM treatments. Any insight on results and doctors/hospitals would be great. I still got to check in with Northwestern on Friday for their consultation of Staged-Radiation 2 sessions, which University of Chicago said last week would be way too risky. Thanks for the help and support.
John, have you looked into the Mayo Clinic in Rochester, Minnesota? I'm from Manitoba and was doing some research as I'm going down my treatment road and they might be worth having look at for you. They certainly seem to be highly rated in the neurological area. No personal knowledge here but a lot of reading on line indicated they're very good.
I was thinking of going there set an appointment and all just canceled to go to UCLA because a neurosurgeon had informed me to go there more than Mayo due to volume of patients and type of radiation. He also said if I go to Mayo they will do my tests all over again and I’d have to stay there for a week. I’m still unsure taking this real slow to get the best opinion since I discovered this incidentally with no symptoms. When are you scheduled to go? What grade do you have and do you have symptoms? Good luck with this. I’m sorry all of us have to go through this.
I go for a follow up angio here in Manitoba on August 3rd. The first one was obscured by some blood an clots which have now cleared. I have a grade 1, and had a bleed in early May. I have a follow up with the neurosurgeon at the end if August and should know my treatment then. The best to you John, and good plan to take it slow and find the best option available.
John...Did some research for you on the Network. Go to Members and go the member Ivanna...She posted on a discussion "Top Doctors" that could be of use for you. Wishing you the best in your search for the best AVM doctor available.
My prayers to you. Keep me posted on your treatment. Grade 1 is easier to treat than grade for and Mayo Clinic should be perfect for you. Mine is a more complicated which sucks only good and lucky thing is nothing happened to me yet.
Hey Louisa thanks for the reply I had seen hers and plan on trying to see the same Dr’s as her. I also tried adding her to see if she can give me advice. Thanks so much!
Hi John, I also have an AVM in about the same place. Partly in my frontal lobe and also sitting in my motor cortex. Presented with a seizure back 1982. My AVM is about the same size, Grade 3 (no deep venous drainage). I was reevaluated periodically over the years but every time the doctors recommended no intervention as The risk-to-benefit ratio was always too high. Given these recommendations, I have lived with the continued risk of hemorrhage while choosing to live my life normally since I don’t really have control over what happens even though I would love to I think otherwise.
In 2013, I did have a small hemorrhage. I was very fortunate that it was only a small. It affected my right side as well as my ability to recall words for about 6 to 8 weeks. But I slowly regained my right-sided function and my word finding difficulties cleared up. I do have some very slight residual right-sided weakness but not enough to really notice.
Right after my hemorrhage and in spite of my slowed thinking, I sent off packages of my MRIs, C, and all related medical records to various specialists around the country for their opinions. I scheduled telephone consults with most doctors even though seeing them in person is always best.
I contacted and spoke with the following neurosurgeons:
Dr. Michael Lawton at UCSF
Dr. Robert Spetzler at The Barrow Institute (no)
Dr. Neil Martin at UCLA no but referred me to Dr Nadar Pouratian (see below)
Drs. Duke Sampson and Hunt Batjer at UT Southwestern (Batjer had just left Northwestern and started at UT Southwestern at that time as Dr. Sampson was getting ready to retire). I actually went to see both Drs in person and met with the neuro-interventional radiologist, Dr. Neil Pride.
Every neurosurgeon (except Dr Batjer) said don’t touch it as risks of permanent deficits with surgery were too high. Some said my only option was to try stereotactic radio surgery with craniotomy at the end but still couldn’t guarantee no deficits.
Some of the neurosurgeons referred me to the following neurosurgeons specializing in radiation or neuro-interventionalists:
Dr Michael McDermott at UCSF (3 Gamma knife treatments + craniotomy, if anything. Wasn’t too encouraging in my situation. Had consult in-person.)
Dr. Lee Pride at UT Southwestern (skeptical, had consult in-person.)
Dr. Nadar Pouratian at UCLA (could try hypo-fractionated radiation. Probably safest route but no guarantee of complete obliteration. Would still need craniotomy in the end with all the accompanying risks.)
After much soul-searching, I decided to run the risk of possible future hemorrhage based on all the recommendations. I would rather have quality of life now and be fully functional.
With that said, EVERY CASE IS UNIQUE and you should do your own exploration with doctors. Every person’s mindset is unique and only you will know what’s right for you based on your personality and input.
I outlined my experience so you would know which Drs you may want to contact for evaluations.
It is gut wrenching to be in our situation. Please feel free to contact me anytime.
P.S. Sorry for the typos! I am typing from my phone and couldn’t scroll all the way up to proof.
I type from my phone too. It’s a hard decision to make. Do you think you would eventually give in to surgery Dr’s are becoming more experienced with AVMs but there’s still a long way to go. I am going to see Dr. Martin soon but I’m sure my surgery would have to be the micro fractionated. I’m a little worried though because I have deep drainage. A neurosurgeon at University of Chicago said if he was me he would do nothing or see about the hypo-fractionated but that’s no guarantee either. Have you ever looked up some Dr’s overseas, like Germany or anything?
I think it's not so much about the technology anymore. The doctors have almost everything they need to perform incredibly intricate surgeries and embolizations. But you do need to find an extremely experienced neurosurgeon with AVMs.
Every type of AVM treatment has its limits depending on many factors. Mine is in my motor cortex/frontal lobe which can affect motor movement (motor cortex), speech and language (pressing down on this area), decision-making, high executive functioning (frontal lobe). My AVM is also fed by 2 main arteries (anterior and middle cerebral arteries) making it risky to go in and shut down blood flow (embolize) as it feeds other areas of the brain, too. It's kind of diffuse outside the nidus and is difficult to neatly embolize and cut-out. Thus, the no-go on surgical removal without shrinking it somehow first which is also risky.
Gamma knife radiation is very precise but you must have an extremely experienced team, both physicist, neurosurgeon and radiation specialist to work together to determine the right type of radiation, the dosage, the location, and how many radiation treatments as any type of radiation comes with its own set of issues. A neurosurgeon who specializes in radiation treatment is the best combination such as Dr. Nadar Pouratian at UCLA (Dr. Neil Martin at UCLA referred me to him as he said he wouldn't operate.) Dr. Pouratian proposed 10 hypo-fractionated treatments in my case but said it would not be completely gone (BASED ON MY AVM). This type of radiation is lower dose so seemed a bit safer in my case but, again, it depends on YOUR AVM structure and situation.
Dr. Michael McDermott at UCSF, is a neurosurgeon specializing in Gamma Knife radiation. Regarding AVM size, it is my understanding from my research and talking with him that GK is typically more effective at obliterating AVMs under 3 cm. Anything over that size gets dicey. He proposed 1) not doing anything 2) 3 separate GK several years apart + craniotomy at end if all went well (BASED ON MY AVM).
Dr. Hunt Batjer, at UT Southwestern, was the only dr out of all of them that thought he could take my AVM out surgically with several embolizations before hand. I met with the neuro-interventional radiologist, and he said I would need 5 embolizations and each time would come with risk of hemorrhage or cutting off blood flow to a critical area (BASED ON MY AVM).
After consulting with these drs. and the ones outlined in my previous reply, I took a leap of faith and made my decision for no intervention.
Again, EACH AVM IS UNIQUE so don't rely on my statistics or info because your AVM is COMPLETELY DIFFERENT even though it sounds like it's in a similar area. It's probably fed by different arteries, different venous drainage, more compact or diffuse, just so many factors at play in each neurosurgeon's opinion.
As I heard with every consult, I wish I had a crystal ball and could predict the outcome but there is no such thing. I just felt I had to be rational and make an educated, informed decision that I felt comfortable with. And yes, I am at higher risk of another hemorrhage over my remaining lifetime now that I've had one hemorrhage. But statistics are just statistics. Either it will or won't happen. I'm good with that. I'm not in denial - for me it's about quality over quantity.
I don't usually type in capital letters but that's how strongly I feel about each person researching and getting several opinions based on their own AVM. Yours is one of kind and will need it's own specialized treatment or not.
Also, I am not advocating for any certain doctor mentioned in my replies. Just giving you the list of the doctors I consulted for your information.
Bottomline, you are on the right path in gathering as many doctor opinions that you want. At some point, you may decide you have enough info and have asked enough questions. Only you know when it's enough. Then, dwell on your options for a while, and make a decision that YOU can live with.
FYI - in 2010, I had an extremely rare cancer and had to advocate for myself again. It pays to see the most experienced drs with AVMs similar to my finding the best drs for appendix cancer (MD Anderson Cancer Center). I have had no evidence of disease for almost six years. You must take an active role in your treatment as you are doing! Here's a post I wrote about this for MDA's Cancerwise blog:
Appendix cancer survivor: Take an active role in your treatment
Wow that’s a long reply and I appreciate it. I am going to get all the opinions I can get and take my time making it. Your right on each AVM is different that’s why every Dr I seen strongly feels the ARUBA study is not right to base these percentages. I feel like there’s still a way for doctors to find out more about AVMs, I mean there’s more to discover with results of treatments as the amount of AVM treatments is higher than the past let’s say 30 years. I now wonder if there are/were any people with an AVM and never had anything at all happen to them and lived a long life. Just a thought. And I’d rather live with “4%” hemorrhage each year then risking early on at a young age to be paralyzed. Mine is pretty much in the same spot as you, smack dab in the middle of the motor cortex. Hey maybe even staying active and eating right can help lower the risk as well. I heard and correct me if I’m wrong that smaller AVMs bleed easier than larger ones. Thanks for everything!
Yes, treatments for AVMs have definitely improved since 1982 when I first discovered my AVM. Back then even the CT scan wasn't very clear! So it's been amazing to see how things have improved.
This is a good question to ask the doctors - do you see better treatment being developed that might help me down the road or research that is currently being conducted that would help me or I could participate in?
According to the NINDS.NIH.GOV, some "malformations tend to be discovered only incidentally, usually during treatment for an unrelated disorder or at autopsy." So there are folks who never knew they had an AVM because they didn't have any symptoms or events.
But if you do know you have one, you have the option to do something about it or not.
About staying active, I would check with your drs about what kind of activity you should NOT do. It's definitely a good thing to be fit and healthy but there are some activities they might recommend to avoid - usually things that drastically increase your blood pressure. I had my hemorrhage while swimming in the pool as part of a masters team program. I was extremely fit but I think the extreme exertion at that point in the swim contributed to it. My dr says to stay fit, just don't overdue it. Reasonable amounts of exercise without getting my heart rate at the upper end of the chart for my age and size. That's a bit frustrating at times but, hey, I'll take it!
About the smaller AVMs bleeding more often, I've read that, too. But what to do with that info? How small is small?
Thanks Ivanna, I am actually going to ask the radiologist this tomorrow when I go to Northwestern to see about staged radiation. I will ask about better treatment or studies being developed. The 2 main things doctors said about staying fit is not to over do it and not to go scuba diving, that’s it. I’ll keep asking as I get all my opinions. Appreciate every and you taking the time out of your day to talk and give advice.
Wishing you calm nerves and a clear mind during your visit!
You are doing the right thing getting as much info and as many opinions as you need to on your AVM. My avm is near the motor cortex and I haven't made a decision as yet. I have seen the best surgeon here and have been advised that they can take it out but there is a small risk of losing or having weakness on the right side.
Its not an easy decision to make, I admire people who can be decisive and jump right in and make a decision. Everyone is different though and you have to do what is right for you. My daughter said to me yesterday, "just concentrate on one thing at a time and make a start" and also "don't overthink what you read on the internet". She made the point of saying listen to what your specialist says as he or she is the expert, not something you read on the net.
Anyway I will be very interested to see how you get on, you have a great attitude and thats half the battle:)
Thank you and your daughter is right, concentrate on one thing at a time. I personally wouldn’t jump right away until I feel comfortable and it’s really just scary thinking about the risks. I would highly be paralyzed on my left side mainly my leg. So I really want to get a lot of opinions till I’m comfortable. Who was your neurosurgeon? Thanks for advice and God Bless.
hey John. I wish you the best of luck. I know this is a hard thing to live with. We have all been dealt bad cards, but its what we do with those "cards" that count.
I was diagnosed at 27. I didnt have a bleed until I was 34. I started feeling comfortable with having this avm and started crossfit, which kept me healthy in some ways, but I think contributed to my bleed in February. My neurosurgery team at NYU has been great. AT first, they didn't want to do anything (I have a grade 4 avm in the pons), but after it bled Dr. Kondziolka decided to do gamma knife is 2 treatments a year apart. One at 12 units of radition, the other with 10 (I'll get that next May). He was originally at Pittsburg, but just moved to NYU a few years ago. Hes supposed to be the best of the best. I wish you the best of luck John.
Hey Eric thanks for your reply and I feel the same way. I would rather live with the risk now instead of deal with the risks of treatment. And since I never had a bleed I’d rather take my time and see my options and live life. I was actually going to be a fireman in Chicago but that’s out of the question now but it’s probably for the best. I plan to stay active as well but not o we do it.