That’s true, bleeding during this period is still probably the biggest concern. I hope you never have to experience that again. How have you been recovering since your rupture?
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Thank you very much!
I’m slowly improving,a little double vision and some balance issues that are getting better day by day,other than that everything’s like before
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Hi all, I am new here. First thank you Shpat for sharing your story, this is very helpful. I am so happy for you to hear that things are going well for you and bettybo.
My 25 year old daughter was diagnosed with a small AVM 2 years ago and told to just monitor it. As we have learned more, we realize that monitoring this is not the answer. We met with Drs at NY Presbyterian and next steps are Angio and then probably Gamma knife.
For those new to this, I found this video on YouTube “Brain Arteriovenous Malformation - Philip E. Stieg” Where Dr Stieg does a nice job of explaining the Options and statistics to other neurosurgeons. There are some other good videos on YouTube that i have found helpful.
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Thank you so much. I believe you guys are doing the right thing and it seems she’s a good candidate for gamma knife. Best of luck to your daughter, I’m sure all will go well!
Thanks Shpat. I have a question for all on this chat. The angiography that they use to plan the Gamma Knife surgery is a bit invasive, and I’ve read about a CT angiography (CTA) which does not require using the catheter may be an alternative to the standard angiography. Has anyone encountered this?
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My son didn’t go through invasive angiogram. They did 3 angiograms called CTA, MRA and a regular MRI. The doctor told us it was enough to plan Gamma Knife treatment on 3/19/24. Hope this helps
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I’m sure we’ve seen people here who have used CT angiography to see the detail. The vast majority of us brain AVM people will have had the catheter angiogram to lay out the detail. It may be a little influenced by the neuro’s own preference for being able to read the information and see what they are looking for.
Good luck with it and do let us know how you get on!
Richard
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Thank you, we are going to check with the neurosurgeon and report back. I feel like this has been around for less than 10 years and is still getting accepted. Here is what AI said on the matter.
FROM CHAT GPT
When considering stereotactic radiosurgery for the treatment of arteriovenous malformations (AVMs), the choice between cerebral angiogram and CTA (computed tomography angiography) plays a crucial role in planning. Let’s explore the differences and implications:
- Cerebral Angiogram (DSA - Digital Subtraction Angiography) :
- Purpose : Cerebral angiograms provide detailed images of blood vessels in the brain. They are particularly useful for visualizing the vascular anatomy, identifying AVMs, and assessing blood flow.
- Procedure : Invasive and involves threading a catheter through blood vessels to inject contrast dye directly into the arteries. X-ray images are taken as the dye flows through the vessels.
- Advantages :
- High spatial resolution.
- Direct visualization of blood vessels.
- Detailed information on AVM location, size, and feeding arteries.
- Disadvantages :
- Invasiveness and associated risks (albeit small).
- Two-dimensional nature limits contour creation for radiosurgery.
- Necessitates multiple scans, increasing patient risk.
- Use Case : Historically used for radiosurgical planning but has limitations.
- CTA (Computed Tomography Angiography) :
- Purpose : CTA is a non-invasive imaging technique that provides three-dimensional images of blood vessels using contrast-enhanced CT scans.
- Procedure : Contrast dye is injected intravenously, and CT scans capture the flow of contrast through the vessels.
- Advantages :
- Non-invasive and safer than DSA.
- Three-dimensional visualization.
- Allows generation of time-lapsed images (4D-CTA) showing contrast flow.
- Can outline the AVM nidus with minimal interference from feeding arteries or draining veins.
- Suitable for importing into radiosurgery programs.
- Use Case : Emerging as an alternative for radiosurgical planning, especially for AVMs.
- Example: A case report demonstrated successful use of 4D-CTA and MRI to delineate the AVM nidus for Gamma Knife radiosurgery, resulting in complete obliteration over time 1.
The trouble with using things like ChatGPT is that it makes some stuff up. So while this may all be true (or there may be some elements that are not true) the fact that it is derived from ChatGPT means it can’t be relied upon.
I can’t tell you one way or the other on this.
Having said that, the referenced article makes a lot of sense (and corroborates the sense of the ChatGPT text, though I’ve not read the ChatGPT statements to corroborate each one).
I’m less familiar with stereotactic radiotherapy (my AVM was attacked endovascularly, so a flat image is probably no issue to the consultant doing the work). However, it may well be that most people who go for gamma knife etc have a combination of visualisation techniques exactly to counter the two dimensionality of the catheter angiogram as described.
I do think that if you’re uncomfortable having the catheter angiogram (and I agree there are risks associated with it, and we have had at least a couple of people have trouble with those risks) then I’d discuss that with whoever is doing the radiotherapy. One assumes that all consultant interventional radiotherapists would be familiar with multiple approaches but maybe it is to be validated! I wouldn’t push a doctor out of their comfort zone in order to accommodate my comfort zone: them being 100% with the approach taken is more important to me.
Agreed, that is why i made sure to say it came from Chat GPT. It had an interesting study attached at the end.
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Hi Mike,
From my understanding, the cerebral angiogram that uses the catheter is the gold standard on diagnosing and locating AVMs. When I did mine at UPMC prior to radiosurgery, they gave me a twilight sedation, so I was awake, but I did not feel anything. Also, the chances of complications are near zero with this imaging procedure. My groin was a bit sore for 2 weeks, but nothing terrible.
Thank you Shpat, The Dr. did say those same words, that it is the gold standard, and it does seem to be what almost everyone is doing. I truly appreciate you and this group. I feel very greatful to the fellow that started this site.
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I can tell you he’s Ben Munoz, he’s still around and he’s the chair of Ben’s Friends, the non-profit that operates avmsurvivors and over three dozen other rare disease support forums. This was his AVM story:
If you’ve friends or family or people in high places who would like to support the work that Ben’s Friends do, please encourage them to find the donation page 
I agree. I think this place is a wonderful way to support people going through tough times.
Very best wishes,
Richard
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Hey @Shpat How are you doing after your radiation? Hope its going well
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Hi @synchro - I’ve been doing well so far. Approaching 4 months since the procedure back in December. I will be going in for an MRI in June for a 6 month check up. Wishing you the best on yours in the future. Trust the doctors and all will go well!
Thank you for checking in,
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@Shpat Glad to hear it. Hope the course stays the same with no changes (well apart from tbe chages we all want).
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Appreciate you! Hoping the best for you as well.
Just checking in, Monday is the date we set to get the angiogram. This site and all of you have been a great help.
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Hi Dageris, could you let me know what hospital that was at? We are set for the standard angiogram on Monday in NYC but would be interested to know for future.