Thank you for your kind welcome!
I am a friend of a female avm survivor. Please hel me. Doctors disagree about risks of having sexual intercourse with brain avm. Her Avm is 23 mm in diameter and has developed 5 cm edema on her brain part of spinal cord where nerves for heart and breathing are situated. THANKS!!!!!!!!If I haven't messed up my understanding of metric, that sounds like a large AVM.
Any activity that increases your blood pressure could be considered a risk of the AVM bleeding I believe. Now does having sex pose more risk that running 3 miles, 5 miles? Can't say. Some or many doctors suggest that you not get pregnant if you have an AVM, or if you are pregnant, they might suggest a C-section, to reduce the amount of blood pressure involved in delivery. Maybe that's why they say to avoid sex--not to get pregnant.
It is commonly understood that AVMs don't just "show up", such that one day you don't have an AVM, and the next day you do. Even if you don't believe you've had it from birth or shortly after, it's probable that you've had the AVM for a long time. And if you had sex before the AVM showed up without issues, I can't see that stopping it now due to risk is valid.
None of us here are doctors, and the one expert you should consider is her Doctor. I'd want to find out what his concern was. And if he says it's too risky, I'd ask "Well how come nothing happened when she had sex BEFORE the AVM was discovered?"
Hope this helps.
Ron, KS
Thanks Ron,
I haven't mentioned that she is 45 now and was born with her AVM. It was first diagnosed 3 years ago. She has survived pregnancy in her twenties, but now she has recently had some serious problems with hormone status, concerning larg genital bleeding, and I have read that hormone deficency due to aging makes blood vessels porous, and that after the age of 40 chances for bleeding are more than 80%. She had breathing and heart problems years ago but she didn't know the cause, now she has serious headaches and her symptoms are getting worse. That's why I am concerned about small rupturse in her forest of irregular blod vesels surrounding the avm.
Ron, Kansas said:
If I haven't messed up my understanding of metric, that sounds like a large AVM.
Any activity that increases your blood pressure could be considered a risk of the AVM bleeding I believe. Now does having sex pose more risk that running 3 miles, 5 miles? Can't say. Some or many doctors suggest that you not get pregnant if you have an AVM, or if you are pregnant, they might suggest a C-section, to reduce the amount of blood pressure involved in delivery. Maybe that's why they say to avoid sex--not to get pregnant.
It is commonly understood that AVMs don't just "show up", such that one day you don't have an AVM, and the next day you do. Even if you don't believe you've had it from birth or shortly after, it's probable that you've had the AVM for a long time. And if you had sex before the AVM showed up without issues, I can't see that stopping it now due to risk is valid.
None of us here are doctors, and the one expert you should consider is her Doctor. I'd want to find out what his concern was. And if he says it's too risky, I'd ask "Well how come nothing happened when she had sex BEFORE the AVM was discovered?"
Hope this helps.
Ron, KS
Hi.
Well, as we all know, women (and men too!) start falling apart about age 40!(grin).
I have never heard the comment about vessels becoming more porous as we age, but maybe that's a word that doesn't work well in translation, or it might be the way her DRs have explained it to her.
I have also never heard that an AVM has an 80% chance of bleed after 40. There is a near constant discussion about what the real chances of a bleed are. Many agree that the risk 2% each year. The debate come in with
does that mean 2% in year one, 2% in year 2, 2% in yr 3, etc. Or does it mean it is cumulative: 2% in year one, 4% in year 2, 6% in year three, 8% in year 4, etc. In the later case, if you have the AVM at birth, at age 50, you have a 100% chance of bleeding. I guarantee you, there are many 50+ year old AVMers that have never bled.
Now, it is generally accepted that if you have one bled, your risks of having subsequent bleeds go way up.
Hope this helps.
Ron, KS
Hi Dubravka,
It might be the edema that makes the doctors unable to agree on her risk. It might make your friend's case unique and more complicated than with a simple AVM alone. In that case, I would personally be unwilling to trust my own reading or the advice of others who are not doctors.
Is she able to see a doctor for the new symptoms, and does she have a choice of doctors? In that case, there are some discussions you can search for on this site to help you pick a doctor whose advice you can trust. Has the doctor treated many AVMs, have they treated this type of AVM with edema, do they perform different types of treatment (or have partners who do), what is their success rate, and so on. If you can find a doctor who has a good record of treating many AVMs, that is the best person to answer your questions, even if the other doctors disagree.
JH
I am 36 and was diagnosed with a AVM in the CNS, I had 4 children before it was discovered. My Doctors have told me that if it was discovered before I had kids they would have recommended not having any!! Questions that should be considered while talking to the doctor; IS there a risk of a bleed? Is the avm being constricted? And what is the concerned about having sex? Any questions are great! I know that I had no idea what a AVM was until i started doing research and asking the doctors more questions. I would take a tablet and pen with me and when I thought of a question I would write it down so when I saw the doctors again I would be able to ask it. I am happy to say that my brain AVM was only 5 CM and had Gamma Knife surgery within a few months of finding it. Last January they said it shrunk down to 2 CM and I go in again for all the tests in August to see if it shrunk anymore. But I am starting to get the migraines back again, and that is my concern. I wish your friend luck in finding out all the answers she needs. Just remember the more questions asked the information you should receive back.
Thank you for your answer!!!
One more question please. If anyone knows about risks of long jorneys up to 24 hours by coach. Is a plane better alternative? Can pressure in it worsen or cause bleeding? Thanks!!!
Again, I’d ask the DR for his opinion on travel.
24 Hrs is a long time to sit. Is it possible to split that into two 12 hr trips, or three 8 hr trips?
As for flying, the modern jet is built to pressurize to about 8,000 or 9,000 ft if I recall correctly. So unless the plane loses pressure, it doesn’t matter how high it flies, your body won’t feel higher than 9,000 ft. I’ve flown a lot for 40 yrs, and I’ve never been on a jet that lost cabin pressure to the point the air masks deployed. It might be a risk to an AVM if it depressurized at altitude, don’t know.
Ron, KS
Thanks Ron, I’ll see what option to choose, thanks a lot!!
Ron, Kansas said:
Again, I’d ask the DR for his opinion on travel.
24 Hrs is a long time to sit. Is it possible to split that into two 12 hr trips, or three 8 hr trips?
As for flying, the modern jet is built to pressurize to about 8,000 or 9,000 ft if I recall correctly. So unless the plane loses pressure, it doesn’t matter how high it flies, your body won’t feel higher than 9,000 ft. I’ve flown a lot for 40 yrs, and I’ve never been on a jet that lost cabin pressure to the point the air masks deployed. It might be a risk to an AVM if it depressurized at altitude, don’t know.
Ron, KS