AVM Regrowth

Has anyone heard of an AVM reforming years later after it’s been removed and cleared on angiogram? I’ve read where it can happen in children but Im wondering what age your risk for this decreases? http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ArtikelNr=47612&Ausgabe=227508&ProduktNr=224153 There’s a small abstract talking about it.

Amanda, mine is a facial AVM and unfortunately it regenerated which from what I have read and researched, plus from what the doctors have told me, is characteristic of AVMs. I was a teenager when they first operated on mine and some 30+ years later it’s back. Shalon can probably answer your question much better as she is very well read on all types of AVMs. v/r Steve

from what i understand the only way it can grow back is if there is residual avm left after surgery…this is what i have been told by both my surgeon and neurologist…this is why the night of my op after surgery a angio was done…the surgeon told my family if there was anything left he was going back into get it that night…i have also had an mri and mra done one year post op which still shows the same no residual avm or no sign of any avm regrowth

I had regular MRIs for a year following my craniotomy, then had one 6 months later, then another at the 2-year mark. Since these results all came back clean, they decided to end the MRIs unless I had some type of symptom that caused suspicion.

I would imagine that since vessels are made up on living cells and the body is known to “repair” itself, it is quite possible that an AVM could regenerate. That being said, based on most things that I have heard, it is pretty rare for an AVM to redevelop once it has been removed.

My neurosurgeon also told me that after he saw that in surgery all the avm was removed it can’t come back again only if it was treated only with embo’s and if the smallest suspicion was left then it can grow up again.Now i am facing secere headaches like those after the embo’s only you know how they feel like and my doctor told me that it’s because of the humidity and because the wound is huge

My Connor was Six years old and it was removed by surgery but it grew back. He has now had radiation and it can not be seen again but I have been told that it could grow back as a adult. But I was told the risk was min.

I ask this because I had to have surgery again to remove the rest. As far as now Im AVM free. It got me curious though so I got my records from 10 almost 11 years ago and was reading that my post op angio showed no clear evidence of an AVM. Do you ever really feel free from it? I dont know if Im just over stressing because I had surgery thought it was gone but it wasnt…had two gamma knife radiations that did NOTHING and finally another surgery. Ive been dealing with it for half my life almost. Maybe I just need to sit back,relax, recover fully from my surgery, get off my seizure meds and live my life and try to quit worrying about it. =)

amanda,
i think you should take you advice…dont spend the last half of your life worrying about your avm growing back its not worth the time and effort…enjoy your life…and go for your dreams…leave the rest in the hands of the universe…just have fun now

Hey Amanda-

So ya, everyone has pretty much said it. It CAN grow back if it isn’t all removed. And I don’t know if the risk decreases with age at all. Not sure that there is a correlation between the two things. That is an interesting question and I’m not even sure where to start looking at that!

I don’t have any statistics on it, but I really think this is the EXCEPTION to the rule. If you have a good surgeon and they are pretty certain they got it all…they probably did. I think that the statistics are probably skewed because some surgeons who aren’t really experts and aren’t really qualified try to remove them and don’t do a good job. I think the chance of regrowth is higher from them…

And I think the brain ones are more “completely” removed than the extremity ones. Most of the regrowth I’ve heard of are from extremity AVM’s (like Steve) and rarely the brainers. But it has happened like Conner and Andrew. The brain ones tend to have less other tissue involved and are a little easier (I say that word with caution!) for the surgeon to tell that all of the AVM vessels are gone. With the extremity ones the AVM invades the muscle, bone, nerves, skin, just about everywhere. It can become so spread out that getting all of the AVM related vessels seems impossible. At least that is how I understand it with my complete lack of medical expertise! :slight_smile:

And while I’m sure it is scary, I would have to absolutely say to take Alicia’s advice. I just assume the chance is so very low that it isn’t likely to happen. Wishful thinking? Probably!!! :slight_smile:

Hi Amanda,

My understanding is the same as everyone’s here - basically it can grow back if there is any residual AVM remaining. I had an angio very close to my surgery to ensure the avm had been completely removed. I had follow up mris and one last angio done 5 years post surgery. I was told my neurosurgeon that they used to do the final angio 7 years post surgery, but with women of child bearing age, the final angio is done 5 years post surgery to allow time to have kids if you want to. Once I had the final angio done and it was all clear (yay!), I was considered completely cured from my avm.

Short of having continual mris and angios (and angios carry risks within themselves), I think you just have to trust its gone and definitely live your life - and be thankful it was found and removed :slight_smile:

I had a sz last september after 4 years of being AVM free…had to have antoher cerebraoangiogram to make sure it did not grow back…I spoke with the head of neurosurg/neuroradiology at the University of Pgh…he recommended the procedure. He said that if they miss even a small littl blip of AVM, itcould posibly grow back-very rare he said-but could happen. There apparently are a few published reports, did not look them up-I trust this guy-helped improve ONYX and trained under my neurosurgeon in Dallas.

My daughters neuro said that only an angiogram could be used to look for AVMs. I’m truly confused by that because everyone here keeps talking about MRIs. My daughter had an MRI just before her AVM was removed to map her brain for the surgery. They used a device called a “Brain Lab”, which I thought sounded like something they picked up at Toys R Us, and it needed the MRI to show them the least intrusive way to cut into her brain. Since angios carry a significant risk, why would they do them if an MRI works to see the AVM? I know they took a lot of CTs, but I was under the impression that was to monitor the swelling and blood in her brain to know when it was okay to go ahead with surgery. I didn’t ask a lot of questions during that month (very unlike me) and there is a lot I still don’t understand.
I guess the folks here might not really a representative sampling. I think if your AVM was cured and no problems that you might not ever seek others out. If you have recurring problems you tend to keep looking for information. So, there may be more people here with inoperable or recurring AVMs.

My undestanding is that it depends on age, type and if they got it all whether or not it grows back.
My understanding is not real clear on the subject of growing back. I was told that I don’t have the type that grows back. By the way I’m 50, my avm showed with a bleed when I was 49.

Peace,
Ameenah

Hi Shalon, I know I am replying to an old post but I have just come across it. Craig is now waiting to see a new Plastic Surgeon & an Interventional Vascular Radiologist so he can decide whether to have embolization or surgery for his facial AVM. Having read that you had sooooo many embolizations before having surgery, I am wondering is surgery was an option for you before you had all the embos done. Do you think embos are the best way to go. We have seen 3 Plastic Surgeons who are not willing to treat it as they have no expertise in this area, but so far contradicting opinions. One said the only way to treat is with surgery & the other said Surgery has too many risks & would have devastating results as it is so deep in his cheek & involves muscles, nerves & tissue as you have mentioned. I would be interested to hear your thoughts as you have so much knowledge on the subject & have been through so much yourself. Hope all is going well for you. Take care. Michelle :-)

I am wondering the same kind of thing. I think it won't regrow once it's totally removed by surgery. Maybe in case of kids it's diffrent because a child and it's brain is still growing.

I have a AVM and CM wich are not removed. The cavernous angioma is not completely closed. Since a CM is a bunch of bloodvessels, I wonder if maybe it can develope new vessels and the malformation gets bigger again.

Hi Amanda - I don't think that's possible, but I'm not a doctor - I only play one on TV.

Hi Again - After reading the posts, my TV doctor character will refer you to Shalone since it seems she has a great deal of research on the matter.

Hi, Michelle, Shalon hasn't been active on the site for awhile, so I thought I would take a stab at answering your question. First of all, brain AVMs and extremities AVMs behave differently, and it will cause endless confusion if recurrence for both are discussed together.

Brain tissue is compact and dense, and brain AVMs tend to stay localized and tend to stay gone once removed, though if the patient is still growing, or subject to additional trauma or to hormones, or the removal was incomplete, brain AVMs can regenerate.

AVMs outside the brain are a totally different animal. They have a wide field to expand in, and many different types of tissue can get involved. They do not remain localized if they are untreated, and the longer they have been allowed to expand, the more difficult it is to remove them completely. Resection is the best chance at a permanent solution if the AVM can be removed completely. Partial resection is sometimes indicated if a critical function is endangered (hearing, sight, eating, or breathing) or if the AVM is so large that there is strain on the heart. If there is a partial resection, there has to be a management plan for the AVM as a whole. The AVM that remains after surgery has to be embolized with onyx, alcohol, or glue, or there needs to be further surgery. The AVM cannot be left alone after a partial resection, or it will continue to expand and cause problems.

With a facial AVM, if there is no chance for a total removal, then the goal is to slow the AVM down as much as possible, minimize the symptoms, and preserve function as much as possible. If there are bleeds, you can try anti-hemorrhagic drugs like tranexamic acid. If there is rapid revascularization, you can try Doxycycline or Sirolimus to slow down revascularization. Each drug has its own consequences and side effects, which is why you want the best doctor you can find managing the case. Healthy living can improve your prognosis. I know you said Craig can't travel, but that doesn't mean you can't seek opinions from US doctors. Some will offer opinions by email or phone if you send photos and a history.

One more point -- Embolizations for facial AVMs should be spaced no more than 2 months apart at the start of treatment; when the AVM is better controlled, then the interval can be longer. The embolizations have to happen faster than the AVM can regenerate, or there is no progress. Hope this helps!

Hi, Your information is amazingly helpful, as we are still trying to learn as much as we can and understand this beast. Do youhave an email contact for Dr Yates? Thanks heaps. Michelle :-)

I don't have the email, but the address and phone are here: http://www.swedishhospital.com/find_a_doctor/detail.htm?id=2596311&hosp=smc

If you type "Yakes" in the search box, you can get in touch with some of his many patients here, and they will probably know his email.