Hey everyone my name is Jon. I was diagnosed with a 8x7x5mm R thalamic AVM Spetzler-Martin grade 3 (+1 size <3cm, +1 eloquent site, +1 deep venous drainage). About mid october i was getting some pretty weird symptoms like i felt so uncoordinated on one side of my body and then i started feeling numbness in my left hand (it was very hard to type and text as well as my left side of my face but it was only for a day and then it went away over a course of a couple days. I went to my doctor and they scheduled me an MRI a week or two later and then i found out i had a brain bleed but my body was reabsorbing it.
I then was referred to a neurosurgeon at walter reed outside of D.C. we discussed the reasons why this happened so i got a CT with contrast that came back normal and then another MRI that came back normal. I had an angiogram about a month ago where the avm was discovered. Two weeks after they attempted an embolisation but was unsuccessful due to feeder being too small and the surgeon didnt want to cause a stroke.
Now i was given a decision of radiation or surgery any advice will be greatly appreciated. i have been informed of the potential complications of both like memory loss or radio necrosis right left confusion and even cancer. The rad oncologist suggested i should do the surgery since im a young healthy man but both are honestly scaring the he… outta me. please give me some words of wisdom or encouragement
It sounds really scary what you have been going through and what you are now facing. I don’t have much advice to offer but I just wanted to say welcome to the forum, and to reassure you that everyone here is rooting for you (plus they are super nice and happy to answer questions).
Hi Jon and welcome. Its great you found us, but unfortunate you had a reason too. I’m going to preface what I say with the fact that I believe the “right” decision in many of our cases is not known until after the procedure. All procedures have risk, and varying risk. For me it was a choice between craniotomy and gamma knife as well. I wanted to be completely at peace with my decision, and it took two years and change to realize for me, it was the right choice. Had I had a second bleed during the lag period, it would not have been. For me gamma presented less risk of side effects than craniotomy due to location. I was fortunate that my neurosurgeon answered my question if it was him, what would he do. He would not tell me what to do, all semantics but I get the reason!
I am not sure if this help, mine was on the inside of the left temporal, and would require “mashing” through a bunch of brain to get at…thus the reduced risk of gamma. I hope this helps a little, take care. John.
Welcome to the site it’s a good place to get information and support especially during scary times like this; you just have to get all the information you can and make the best decision for you.
I went with the cranotomy because I didn’t want to risk a bleed in the interim believe me the craniotomy scared the crap out of me but I knew when it was completed the AVM was permanently gone and there’s no risk of future bleeding but that was a decision I had to make and it wasn’t an easy one but I didn’t want to have another bleed… good luck in your decision!
As we all have said, it has to be your own decision once you have gathered the risks and benefits of your choices. You have already demonstrated your skill in doing this through your introduction and explanation of the current circumstances. The decision making IS a heavy duty.
The one thing I could add to all the information gathering you have done, is to get a second opinion from another neurosurgeon. Considering the progression of your symptoms, I would make my moves quickly so as to obtain your preferred treatment sooner, rather than later. (Thank goodness you obtained an angiogram after the “normal” MRIs.)
No matter what your decision, be sure to avail yourself of all the support you are offered…before the procedure. It is best to have a so-called “significant other” (spouse, good friend) present at your appointments. Have a team of personal support there for you, post-procedure. The time after a procedure can be slow going and a bit unpredictable, as far as your needs go. Best to be prepared, as your healing brain does not like additional stress of decision making.
I am proud of you for seeking us out and asking for our input. Bravo!
lifeisgood
Welcome! The trouble that you’re going through is very much the same trouble as the rest of us.
The truth is that the risks you have will be specific to the situation of your AVM. So the best thing to help balance your decision is to get a second (or third) opinion. Sometimes doctors will recommend surgery because it is their discipline and others will recommend gamma knife because that is their discipline. So you need a balanced decision that you can rely on that says this approach is best for me (rather than best for the doctor in front of me). If you’re already getting good vibes from them that they are focused on you, that’s good but it isn’t always the case.
We all want whichever route forwards to be risk free but the reality is that none of the routes forwards at this point are without risk, so rationalise that with yourself a bit. The road has taken an unusual turn into a rather foreboding valley but a good doctor will get you out the other side.
I disagree with Rafa’s shoot-from-the-hip assessment of craniotomy. What you need is a dispassionate assessment of the balance for you.
It’s a hard decision to make: we all recognise that. Any way we can help you along the way, just say, and do let us know how you get on.
I wanted to get a second opinion but i dont know who or how i would go about getting one. my wife and i both trust my neurosurgeons and rad oncologist but it wouldnt hurt to get a second opinion.
Hi Jon, welcome to this group and hope you can find some support from people who going through the same trouble here. I can’t give you much advise as my daughter (15yrs old) is going thru the same trouble the same time as yours. She had a bleed on Oct 31 while taking a test in class, then she went to ICU, after a scan of MRI and angio, the doctor found a small AVM on her right frontal. AVM Spetzler-Martin grade 3 (+1 size <1cm, +1 eloquent site, +1 deep venous drainage). After two month’s of recovery, now she is ready to go back to school. Our neurosurgeon at Standford Children Hospital asks her to come back for a surgery in coming Jan or Feb. Before we came up with the treatment plan, it took us some time to decide whether we should just do a embolization or surgery or both. After our neurosurgeon had a good conversation with the embolization surgeon, they both agreed that having an embolization will have less success rate than having a surgery to fix the micro AVM. They also mentioned having the embolization might have higher chance of causing a complication, at the end they came up with the conclusion of just doing the craniotomy surgery. I think in your case, if you are doing the radiation, I’m sure that you know the radiation treatment will take longer time to complete which cause higher risk for the rupture. During the time of the radiation you might be limited with the sports you do, and living styles will change etc… If you go with the surgery, many people here mentioned craniotomy is risky, and I agreed it really depends on the experience of the hospital and doctor. But the surgery can remove the AVM completely if everything go well. Talk to the doctor and ask more questions, you will get a better sense of how comfortable of doing the surgery. You can ask the doctor for the location of the AVM, what motor skills are located in that area, the chances of having deficit, success rate of the surgery etc… good luck in your decision! Linda
So, having confidence in the doc is excellent. I think this is a lot of the battle. I don’t know what the process is for finding an alternate in the US, though I do know that you can get a “remote second opinion” from several of the US’s foremost neurosurgery practices via their website / online portals – by uploading your reports and imaging – no need to travel across the country. It is very affordable and could be a way to get a further expert opinion on the risks and benefits of each approach. I don’t think such second opinions are “in depth” but could help to support as a second opinion.
I can look a couple of them up for you if needed. I think the cost is in the range $100-$400.
I’m sure some of our US members can tell you the right way to find an alternate neurosurgeon more locally: it might be something you talk to your insurer about but all of that is very foreign to me (I’m in the UK).
There is often no perfect answer to how to approach a brain AVM. As John said above, his doctor suggested radiotherapy because his AVM was quite deep and he would have damaged quite a bit of otherwise healthy brain to get to it via surgery so radiotherapy was best for him. As Linda says, radiotherapy takes a long time to resolve, so your bleed risk remains higher for longer with that route.
With a craniotomy, there’s no question but it is a major assault on your brain but if the AVM is closer to the surface than John’s or otherwise easier to access, it can be a more immediate resolution to the matter. Both approaches have other risks so it is important that the surgeon explains which is more suited to your situation. Sometimes it is possible to do either.
My AVM was treated via catheter embolisation – literally glueing up the AVM to take it out of commission. This isn’t suitable for smaller vessels as the catheter is too large to go into the smaller vessels, so this may be why craniotomy or gamma knife are being mooted for you.
One thing I would add is that while this sort of surgery feels like the most urgent thing in life to get fixed, neurosurgeons are often quite cool about how quickly you need to be seen. Indeed, if you’re contemplating gamma knife, it cannot be something that needs to be fixed this month or next: it will take much longer than that. So don’t feel pressured into deciding too quickly. If the docs felt it was urgent, gamma knife wouldn’t be an option they’d be talking about and they’d be telling you to come in soon for the craniotomy. So take a sensible time to get whatever information you need to make the right decision for you.
Hi -consider a 2nd opinion at John’s Hopkins since you’re not too far away. Your primary should be able to help with referral. I did that and wish I had gone sooner. The neuro surgical team has some smart, talented docs.
@Shashiimi Welcome to the site - As Richard @DickD stated you can get a remote second opinion. Dr Michael Lawton is the best AVM dr in the USA and he used to be near me at UCSF but is now at BARROW in Arizona and they do remote consults. I highly suggest contacting them. I have seen his work and others can attest here of his skills. I am at Stanford and have had embolisms but if I do need a craniotomy I would be going to Barrow to see Dr Lawton.
Hugs
Angela
Hey Jon, I am sorry to hear about all that you are going through. Your AVM sounds a lot like my daughter’s in terms of size, grade and location. We were only presented with one treatment option due to the AVM location which was radiosurgery such as gamma knife or cyberknife. Open surgery and embolization was completely off the table. This took a lot of the decision making out of it and for us and the biggest decision we had to make was choosing a neurosurgeon. Having options is way better than having none, but I know I would struggle deciding between the options. If you have a little time, I would seek out the opinions of the top neurosurgeons that specialize in AVM’s. You can request copies of your MRI’s and other images from the radiology department where the tests were performed. You can send the disks to a few top docs who will get back to you with their opinion and treatment options. This is usually done at no cost to the patient in hopes of having you as a patient. You can also send your images to Barrow Neurological Institute (a top neurosurgery center) and for approximately $50 they will give you their opinion in writing. For us, this process was easier because all the docs agreed that there was only one option for my daughter’s thalamic AVM. We went with Dr. Lunsford at UPMC in Pittsburgh PA. It was out of network for our insurance, but they figured out a way to get our insurance to pay for everything. It is my understanding that for AVM’s in easy to reach locations, an open surgery is always best, but it gets a little trickier for locations deep in the brain. If you are leaning towards an open surgery, you probably want get more info on Thalamic AVM’s treated with open surgery to see how often this is done etc. I would also very specifically ask the neurosurgeon recommending the open procedure if he or she has ever removed an AVM from this location and how routine this approach is. Another thought: Consider asking your doctor if and why your AVM was so hard to spot? It seems a little odd that an AVM the size of yours wasn’t spotted right away on the MRI. I guess the thought I would leave you with is that AVM’s are not routine and I think most patients and advocates would agree you need to make sure you are talking to the right doctors with AVM experience. When we started we were in a world class hospital, but they didn’t know anything at all about AVM’s and they told me daughter’s AVM was inoperable. My daughter had gamma knife twice… her AVM was on the larger side and it was hard to treat. Her AVM is now gone. She did lose function of her right hand and has a problem with her gait, but she is fine and these problems came about as a result of the AVM and not necessarily the treatment. There were side effects from he gamma knife and at times it was hard, but it was manageable. She is in 9th grade now and all of this has been really hard, but the scary stuff is behind us and we can focus on the future. You will find lots if good information and support in this site. If you need someone to talk to or want feedback about my daughter’s treatment, please reach out. I am happy to talk by phone or chat online anytime. Hang in there - Jill
Update
I recently had another MRI done and the pocket that my hemorrage caused had closed so my neurosurgeon suggested i do the radiation instead since now the chances of damaging brain tissue goes up significantly. so now i will be doing the radiation.
Hi! Thank you for the update. Having a plan in place always helps, so at least you know what you’re doing and why. Feel free to reach out anytime along the way. There is a known side effect with radiation that can happen roughly 6 months after the procedure where you could have swelling. Pay close attention to how you feel so that if that happens to you can get treated. My daughter had swelling with both rounds of gamma knife and she presented a little differently so we didn’t get help until it was quite bad. The swelling was treated with steroids and it was all reversed, but it’s very important to get treatment for this if you need it. Best wishes and I am so hopeful that you will have this all behind you soon. Happy NEW year!
Hi,
Seems that you made your decision. For what it’s worth, I have had both and would do the craniotomy over the radiation any day. I had the radiation at Hopkins and assumed that I was in the best hospital for the procedure but found out that my poor outcome was based on my failure to look at other opinions and talk to people who had a similar situation as mine and found success. When I found a person similar to me who had a positive result, I met with her neurosurgeon and knew that he was the one to help me & flew to Boston for the surgery with great confidence. My complications from surgery are from the radiation damage( i knew the risk going in) so of course I wish I had the craniotomy first. The AVM removal part went perfectly so if I had it to do over again, I’d research better and find a doctor who specializes in my specific condition. Mine was complicated and thought to be inoperable. I’d think of you have options, maybe you would have a better outcome with either option. Best wishes to you in your decision making; this is the hardest thing you will likely ever have to decide.
Shelley
My family can speak personally to what Angela4 is saying. Michael Lawton is the best AVM surgeon in our country with the numbers and success rates to prove it. He removed my daughter’s grade V AVM safely in September of last year, after it had already had bled twice and she is compromised on her left side, but that was from the devastating second bleed, which no one wants. We maintained dual residency for 11 months from Missouri to Phoenix for Dr. Lawton to resect her AVM and the associated rehab there at Barrow’s incredible Center For Transitional Neuro Rehabilitation. She would not be back living independently at 21 like she is now if we had not chosen the right surgeon for a most difficult AVM and Barrow’s awesome rehab program. It surely wasn’t easy on the family but it was the right decision for our daughter.
I strongly urge you to utilize Barrow Neuro Institute’s second opinion portal on their website https://www.barrowneuro.org/ It is only $100 and we heard back from Dr. Lawton within 10 days or so. And he was the ONLY opinion of several we got that recommended immediate craniotomy resection. All other neurosurgeons wanted to gamma after her first small bleed in June 2021, but we were leaning craniotomy all the way knowing/understanding the size and complexity of her AVM. We just unfortunately didn’t get to Lawton before her devastating stroke in August 2021. My advice is don’t wait too long, especially if you’ve been recently vaccinated or had a booster. Local Brain Injury Foundations are reporting an inordinate number of AVM bleeds since the COVID vaccines were brought to market and eventually it is all going to come to light instead of shuffled under the rug like currently. That is my family’s hope anyway. Best of luck with your decision. We are all here for you.
Welcome to the family Jon & sorry to hear you have entered the new year with this challenge.
If the medical experts think they can help and eliminate the AVM with surgery then I personally would go through it, however the choice is ultimately yours at this time.
I had surgery to remove an AVM that also bled a month prior in the new year of January 2011 so I do understand how you may feel… it’s not an easy thing to go through but rest assured you’re not alone and there is always light at the end of the tunnel.
Prior to my bleed I was given the same options with removal and didn’t have a choice once it bled as they wanted it removed ASAP due to potential risk of further bleeding.
Please keep us posted and again rest knowing this is not uncommon as what we think as each day technology and treatment becomes more advanced… God bless!
