My wife was diagnosed with Cryptic Arteriovenous Malformation yesterday. She is a 40 year old very fit female, with no recent head trama. She participated in an Ultra Bike ride in the beginning of October and did well with no physical issues. Shortly after she developed a low grade headache. Three weeks go by and she still had the headache. She decided it may be a sinus thing cause it felt like pressure in her head. Tried some allergy medication for a couple weeks with no improvement. After a total of 5 weeks she scheduled an appointment with her GP. GP orders a CT scan the next day. CT shows a mass in her Cerebellum. Less than 24 hours later we are sitting in a Neuro Surgeon’s office and being sent to get a couple of MRIs and an MRA. The scans show the mass to be blood. The neuro surgeon diagnoses her with Cryptic Arteriovenous Malformation. Treatment: Take it easy for three weeks then another round of MRIs to see how things look. I’m not an MD, what do you guys think of all this? How serious does it sound?
How big is it. What class of AVM is it. Options to treat may include surgery, endovascular gluing, radiation therapy. Depends on multitude of factors.
Don’t know how big it is and I didn’t know there were classes of AVM. I’ll look into both of these questions and find out. Do you have any idea why someone would have an AVM? Is there any life style choices we can make to decrease the odds of having something like this happen again? From what I have read so far she isn’t in any high risk categories. She’s actually had low blood pressure her whole life. Avoiding a high heart rate for the next few weeks is no big deal, but should she avoid bike racing and tris in the future?
Don’t know how big it is and I didn’t know there were classes of AVM. I’ll look into both of these questions and find out. Do you have any idea why someone would have an AVM? Is there any life style choices we can make to decrease the odds of having something like this happen again? From what I have read so far she isn’t in any high risk categories. She’s actually had low blood pressure her whole life. Avoiding a high heart rate for the next few weeks is no big deal, but should she avoid bike racing and tris in the future?
It is 3.25 cm x 2.44 cm x 2.16 cm
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Most AVM’s are thought to be congenital. The article quoted by JRenfro sums up a lot about AVM’s. Having done all my medical education and training at UCSF, I was able to see both the neurosurgeons and the neuro interventional radiologists work on AVM’s. This is purely my own opinion but if I had an AVM, I would have the neuro interventional guys embolize my AVM rather than have a craniotomy. The big issue is whether they can get to it. Not sure where the OP is located and how good your neuro interventionalist is. Higashida, Dowd, and Halbach are BAMF’s at UCSF. THey do have a fellow that they train but I wouldn’t hesitate to go to these guys or get an opinion from them as to who they would let embolize an AVM in one of their family members. Best of luck.
This is very similar to what happened to my husband! He is also 40, very fit, no head trauma. Great blood pressure and heart rate. Three days after my husband ran a marathon he experienced a seizure at home. He went to the ER and they found a small brain bleed. He had a CT angio, an MRI and a angiogram all of which showed no visible AVM–which could mean a cryptic AVM. A cryptic AVM is an AVM that does not divert blood so therefore it often does not show up on diagnostic testing. We were also told to wait a month and he would then have a repeat CT angio.
From what I’ve read and the neurologists I have talked to here, this waiting period and re-check is very standard when original testing doesn’t show a visible AVM. The blood could be obscurring something and they want to wait for the brain to reabsorb the blood so that they can get a better look at what is underneath. Interestingly, small AVMs are more likely to bleed than large ones. AVMs are hereditary. They are present at birth and have a small change of bleeding each year.
The neurologists here do not seem worried and have told us that most AVMs are treatable through surgery, radiation, or other options. Any AVM less than 3 cm is considered “small” and is more easily managed.
I am not an MD either, but I wondered if the bleeding could have something to do with the marathon?? Dehydration? Reading about your wife’s experience made me more curious about this. The doctors were all impressed with my husband’s physical fitness and had no explanation as to why someone like him would suddenly have a brain bleed that caused a seizure.
i’m a neurosurgeon and a multiple ironman finisher. embolization does not cure avm’s. it may be used as an adjunct to help the neurosurgeon remove it. all treatments for avm’s carry some risk, as does observation. if you pm me i’m happy to help you find an appropriate person in your part of the country to help your wife with this.
What did u decide 2 do?
We are getting ready to do a new set of CT Scans to see how well things have cleared up. Her headache has downgraded. Her current neurosurgeon seems to think we should do nothing and see how thngs go.
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