Did anyone have symthoms with an unruptured AVM that lead to it being discovered? What were they? What did you think was wrong with you?? Smile!!
Hi Misti
My daughter aged 26 at the time started experiencing a tingling sensation down her right arm. This would last for about 5-6 secs and the disappear. She got this about 2-3 times/week. We did not know what it could be but an MRI confirmed it was an AVM in her left parental lobe. She had 2 radiation treatments 2 years apart which did absolutely nothing for her. She recently underwent neurosurgery at the end of July 2012 and after a long 9 weeks, she is now AVM free and making a remarkable recovery. You should check out any unusual sensations/symptoms that you normally would not experience, plz do not leave it unchecked. If I can be of further help, please let me know.
Thanks so much! Headaches the tingles and vision change have been my biggest issues! I have my first appointment w the neurology surgical specialist today. I made a list of all the crazy stuff that has been going on with me!
Good! right thing to do. Good luck and i will follow your posts for results :)
My unruptured AVM was discovered when I had a totally unrelated aneurysm that ruptured causing a horrible headache and hydocephalus. Before all of this happened I did not have any symptoms that I was aware of. Hardly got headaches and when I did they weren't bad (usually something around that time of the month or if I skipped by morning coffee).
Mine is located in the right parietal lobe and after my anuerysm was taken care of the doctors wanted to do some additional testing to see if the AVM was causing any deficits that they couldn't determine just by looking at me. I did a neuropsychology test that took the better part of a day and they couldn't find any deficits related to my AVM.
Because i don't have symptoms the docs have decided to leave it alone as they also feel it isn't at a very high risk to rupture.
I got pregnant with my son and had a few stabbing head pains behind my right ear before he was born and I told my doctor. She blew it off and said it could be allergies or sinus. He was born May 27 and was 9lbs 15oz. I had him natural and had a hard time delivering him. When I got to come home my arms would go numb when I would lay down and I started getting severe stabbing pains behind my ear again. I finally told my husband I couldn't take it anymore because I was having trouble staying focused and my ear and neck were starting to hurt. I went to my physician and he recommended a MRI to make sure I didn't have an aneurysm or a tumor on a nerve. Turned out to be an AVM. It's weird because all of my life I always felt like something in my brain was going to kill me. I told my husband that all of the time. I'm glad I found my AVM.
yes, I had a seizure and that was a blessing in disguise
looking back overtime I recall having numbness in my left arm while sleeping on a 15 hour flight I figured it was just I was leaning too much on my arm but I recall having it several times in the past year on many business trips but blew it off also I used to get this sort of pulsating sound in my ear I figured it was just sinus and my ear was a little plugged up but a doctor told me that is often the AVM pulsating
I had full body tingling, more intense in my upper body, AND I would feel like I was going to fall backward toward the right. (These are now called seizures) It raised my BP, too.
Hi Misti B,
My symptoms were "headaches from hell" and a pulsating sound in my head. Both symptoms have disappeared since my embolization last April. AVM was discovered following a MRI last March. I have a cerebral angiogram next month to confirm if my AVM has been obliterated or nor not.
i thought i had an eye infection, but i was also getting facial paralasis. My doctor thought i was having a stroke. The ct scan was fine but the vision was unexplainable so they ordered an mri and found two avm's. Other than that i hust had short sharp headaches that never bothered me.
Just me!
I have come a long way since this discussion to a more complete diagnosis. I actually have two DVA and one has a CCM involved. We are all in the same boat as far as the “worry” but I feel your son’s condition is way more severe and needs prompt attention where as mine is a “wait and see”. My brain did bleed last summer and I am recovering very well. Waiting a year for an MRI barring any symptoms of a bleed!! Smile. I wish you and yours all the best and the answers you desire!! Be blessed!!
Misti, I had no symptoms before they found that I had an AVM. Except that I mentioned to my dentist that I had a headack after having my teeth cleaned. He wanted me to have an MRI just to see if it was a dental problem. So my AVM was found just by accident.
Hi. My daughter’s AVM was found incidentally. We had her gone thru a MRI because she was complaining of having double vision. Turned out, an AVM (3cm) was found on her right frontal lobe.
There’s no evidence the double vision (which she’s still having) had anything to do with the AVM.
Apparently, she’s been complaining of having headaches since young but somehow, we didn’t pick it up.
Due to the size of her AVM, embolization is not r commended.
Success rate of SRS (Stereotactic Radiosurgery) is only about 50%. Hence also not a viable solution.
However, this was still being recommended by 3-4 out of 5 doctors we consulted.
Surgery also has its associated risks due to 1 vessel which can result in paralysis or weakness of her left limbs if it was damaged.
Right now, we are adopting a wait-and-see attitude.
Appreciated any advice on what we can / should do as so far, other than headaches, she has no rupture; something we want to thank God for.
Yes, I never knew I had an AVM until one day I went to the gym and drank a pre-workout powder and later after the workout I had a grand mal seizure. There was no rupture or bleed thank god, I was very lucky. I was admitted to the hospital and I got several scans after the seizure and thats how they found it! Still no bleed as of today but I have been treated with cyber knife radiation and am keeping a close eye on it until the radiation is able to close off the AVM hopefully in the next 2 years.
Alyssa
My main symptom is pulsatile tinnitus, the ability to hear a whoosh in my ear every time my heart beats. Very much like the noise the washing machine makes when it is pumping out. I’ve had what I would consider to be mild headaches for years which might be related but could just as easily be caffeine withdrawal headaches.
I’ve been diagnosed in the last week as having an avm in my right occipital lobe and a possible thrombosis in my transverse sinus.
My PT has become loud over the last year and I can now feel an abnormal pulse on the back of my skull, which I assume is blood pumping directly from an artery into my transverse sinus (“TVS”) and inflating many of the lesser veins that would normally drain into the TVS. If I press onto the abnormal pulse, it is strong enough to push back!
I’m starting to feel that im getting a tiny bit dizzy and a tiny bit “thick headed” but I may be over analysing it.
I also feel as though the pulse is reverberating into my arms, but again can’t be sure I’m just making that up / whether that is normal.
Hope this helps someone…
Hi Lindsay. I am in the same position as you. At 12 I started having awful headaches and 2 years later the hospital discovered Hydrocephalus. I have a VP Shunt now which has been revised several times. On one of these occasions I had an MRI which showed up a large AVM in my Cerebellum. I was advised that surgery wasn’t an option for me and that Gamma Knife would have to be accompanied by multiple embolisations first. I don’t suffer any deficits or have symptoms day to day. My AVM is monitored every few years but is stable. Therefore my docs are leaving it alone too and I am happy with that decision.
Hi Misti-
I’m a newly diagnosed AVM patient.
About three weeks ago I had a very bad headache like one I never had before no Advil/Aleave could make it go away. It lasted for one day but for two days after I was having mild headache that was managable. About 5 days later I woke up crawled out of bed and while walking to the shower I started to get dizzy and fell over. At first thought I assumed I just stood up too fast. While in the shower I started to get nausea but brushed it off as related to standing up to fast. While rinsing the shampoo out of my head I got dizzy again and had to sit down in the shower. For the next few days I had mild headaches but got real dizzy sitting or laying down as well as getting up from lying down or sitting. I had some nasal congestion so I was thinking I may have a inner ear infection or sinus issue. After two more days of dizzy vertigo loke aymptoms I decided to set up a Dr appointment- Dr said my ears and nose throat all looked fine. He said let’s do an MRI… Well MRI on Dec 16th- yesterday- Dr called back and said report says AVM right posterior occipital/ perinatal… Got neurologist appointment next week…
Robert
Between my post above in Oct and today, my thick head and dizziness got worse as i think my avm is changing but I’ve managed to get back in control.
Best guidance I can offer you, whilst you’re waiting for proper medical intervention is to keep your blood pressure low. If you smoke, drink coffee, alcohol, eat chocolate or other “stimulants” you’re as well to get off them, if you can.
I’ve not had a rupture and I’ve got to wait till next spring for my treatment, but I’ve found I can manage my thick head and dizziness by cutting out (in my case) coffee and chocolate. I’m back to being largely headache/ thick head free, and not so dizzy.
You sound like you should get attention more promptly than me, so don’t expect to have to wait anything like as long.
Very best wishes,
Richard
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