I was told I had a 1 in 100 chance of regrowth and less than 1% chance of an agiogram problem. After surgery my family was told the AVM was completely removed. Should I have the angiogram ?
Is an MRI/MRA out of the question? While they are not as detailed as an angiogram, they are far safer, less expensive, and can still give a pretty good idea of whether or not the AVM is starting to come back.
Other than recent posts here, I’d never heard that an AVM can grow back. Not saying that it can’t, but we’ve been following info on AVMs since 1991 (when Chari’s AVM presented itself), and we’d never heard/read about it, other than here.
If your surgeon says it’s 100% gone, I’m not sure you need any more tests, or at least wait 2-5 yrs.
After embolizations, radiation, and finally microsurgery to remove the remanents of her AVM, the DRs at Stanford never mentioned doing followup Angios or MRIs to check it again.
Finally, after enduring brain surgery, the risks of issues with an angio seem pretty small to me by comparison. I worried very little when Chari had her angios. She probably had 4-6 on top of 4 embolizations.
A lot of your decision will be based on what you feel comfortable with. I would not try to influence you one way or the other.
Ron, KS
I too thought once they are gone they are gone…angio are still invasive…on what basis does your doctor think you should have one? I would think an mri/contrast is what found mine…You are right God bless you are well enough to be able to make the decision. I would discuss more with dr. and ask him what he would do if it were him…hmm… always try to get the docs to wear the shores, you know what I mean…plus I don’t know going back in poking and prodding…I think there’s less evasive…but you must feel comfortable with you decision after discussing in length with your dr. and ask the risks vs. the outcomes…I agree also on possibly seeing if a longer length of time again, speak to your doctor and if you don’t feel comfortable or getting a “weird” feeling get another opinion. I have an appt with my neursurgeon next month, I can ask him if you want…Mare
what are the signs to look for my husband gets headaches occasionally. should I be concerned? I don’t know anything about AVM’s I don’t even know what he is going through. me and our son get frustrated because we don’t have any knowledge about this. I am happy that I found this site.
Tina
Hi Tina,
Unless your husband has been told by a DR that he has an AVM, chances are very good that he doesn’t. Too many things can trigger headaches to guess what it might be.
I’ve been told that if an AVM ruptures, it can trigger the mother of all headaches generally. I’m sure there are AVMs that have bled that the patient didn’t have a headache. If you have an AVM and get a headache, I don’t think that’s cause for alarm. If you have an AVM and your head feels like it is going to explode, then it’s probably time to get to the ER.
Hope this helps.
Ron, KS
Tina said:
what are the signs to look for my husband gets headaches occasionally. should I be concerned? I don’t know anything about AVM’s I don’t even know what he is going through. me and our son get frustrated because we don’t have any knowledge about this. I am happy that I found this site.
Tina
Rex: no problem hae an appointment on December 16 but he’s a good doctor and good man…he’s out of Cornell and honestly they are awesome. Dr. Oz is great…he came to my church once so speak on health…great guy too! You are like me seem to research alot on these things… knowledge is power! Mare
Jason,
I think you are 100% correct saying not to take any posts here as gospel. I try to couch everything I write as “here is our experience, but all AVM’s and patients are different enough, what works for one does not necessarily work for another.”
I don’t think anyone here will try to post “wrong” or “bad information” on purpose; I’ve not seen that kind of post since I started following this wonderful site. But any AVM decisions should be based on what information your well-informed doctor(s) tell you, their experiences with YOUR kind of AVM situation, what you read in medical publications and studies, and finally give a little credence to what you read here.
I am hopeful that if a person posts that his local doctor who’s treated 5 AVM and wants to immediately operate, several of us will jump in and suggest a 2nd opinion from someone with more experience.
Hope this helps.
Ron, KS
Hi everyone, I never heard of that MRI (Brain Bucket)
I’m going to ask about it, it would beat an angiogram.
When my time comes for another angiogram it would be nice if I
could do MRI instead.
To my knowledge, it depends on whether all the avm was removed and what
type it is would determine whether it could grow back or not. I’m not sure what type they
say can grow back. They say that I don’t have the type that grows back.
Hi Rex,
I thought when they did the surgery, the docs did an angiogram right after, that is how they determine
the success of the operation. That is what I thought. Ask them to check your records to find out if an angiogram was done right after the procedure. They said it was gone so the docs must of looked some kind of way. If one was done, you may not need another.
Peace,
Ameenah
Me personally, I work with the doctors on my case.
Doctors are people too, they have stirred me wrong on occasion.
I don’t care how smart they are, they are people too.
i was not diagnosed with an avm until I was 49 years old, after a stroke.
I’m pretty sure now that it was bleeding on one of my trips to ER,
so I listen to the doctors and I research even more because they have not been right all
the time.
Peace,
Ameenah
Another way to look at it is to ask the question; What happens if you find something growing? What are the options? What would you be willing to go through? If there is a 1% chance something could be found, than there is a 99% chance nothing will ever be found. “When you change the way you look at the things,the things you look at change.” W.D.