I am currently 17 days past a second bleed . I had a stiff neck on August 26th and immediately went to ER. Knowing my medical history, and having the same ER doctor from my brain bleed 14 years ago when I was a kid, I was rushed into a CT scan where bleeding was discovered in the ventricle, thank goodness not in the brain again. Luckily I am home and the blood seems to be draining on its own. A CT next week will confirm this. But I have had the Gamma Knife twice, once in 2007 and again in 2012, but the doctors said the AVM grew back. I was not a candidate for embolization last time, and a third Gamma Knife may not be possible, so if anyone has a suggestion for alternative medicine, I’m all ears.
Love to all,
Sorry to hear Julia, but certainly great the blood is draining. Nice to have the followup CT fairly soon so you have that answer. I can’t offer much in the alternative areas as far as treatment, I was straight gamma knife. I have started to se frankincense in a diffuser and a krill oil supplement hoping to help my overall brain health. Certainly not a treatment. Hopefully your neuro can provide some options. stay Strong, John
So sorry to hear this. . . I kinda have a side question, I suppose. Do you know why you were not a good candidate for embolization?
Ouch! I’ve no idea either, so I just want to say “well done for going to the ER when you did!”
Fingers crossed that the docs can recommend something for you.
Very best wishes,
The blood vessels do not feed directly to the AVM, they kinda hook downward. Embolization could potentially block off other healthy veins/arteries.
Gotcha. . . Thank you for replying, I’m quite interested in all of this “stuff” after having to deal with it myself.
My only other possible suggestion would be get a second opinion. . . But, that’s just me & that’s all I can come up with.
Where I got my embolization done here, they are very embolization happy - I asked. It’s their #1 way of attacking AVM’s - but, of course - everyone’s case is different
Hi Julia. I´m glad that you are recovering. I have survived four strokes ( all brain bleeds). I wasn´t a candidate for embolization either. I have had gamma knife and proton beam radiation. My avm was discovered in 1984 when the treatments were in experimental phase. I haven´t been able to find alternative medicine, but the work and teachings of Dr. Joe Dispenza may help you. There are some videos on youtube. I have been reading about him and his work since last year. I have been implementing the heart coherence in my daily routines. I hope this helps. God bless you. With all my love Angie
So sorry to hear about your bleed Julia. Best wishes for a full recovery. I am not able to have surgery or embolisation on my AVM due to its position (cerebellum). Every neurosurgeon I have seen has said its too risky and the likelihood is I would be left with other deficits. Lulu x
I had the stick neck symptom when I had my cerebral hemorrhage. Little, to no headache whatsoever.
Hope you convalesce well. Take care of yourself.
…and every AVM is different…
Hello JoJo, I see this is your first post and just wanted to welcome you to our community. Take Care, John.
My team is now discussing using embolization for the vein, rather than the artery. The artery feeds the AVM, while the vein takes blood back to the heart. I’m calling this technique “constipating the AVM rather than starving it.”
My interventional radiologist did suggest he might approach the AVM from both sides (i.e. from both the arterial side and the venous side) so I think it is not that abnormal a thing to do.
…but I like your description of it!
That’s one thing I missed on asking my neurosurgeon - what side did they come in on.
I’m just not sure - from what I can tell from the procedure transcript, it was one - he injected Onyx 18 first then Onyx 34(it might be the other way around, but high viscosity first would make more sense - I think)
But, since I didn’t ask - I am not certain. I just know that I had 3 arterial catheters & one in the main vein in my crotch.
Good question tho - I knew they’d be something I missed to ask
Hey Hermione, did you go ahead with the ‘conspirator’?
All the best
The “constipator”? Not yet. I had another angiogram for imaging earlier this month, and I have an MRI a week from Friday. Although my neuroradiologist seems hopeful that the embolization will work… they are hoping to do it before the end of the year.
Good luck Hermione!
I have bilateral AVMs but have not had a bleed ever (I’m 51) - how do I know when I need to go to ER? What could happen if I have a bleed and how bad was your stiff neck before you went to the hospital?
I have frequent headaches and often have neck ache but was unaware that the ache could be linked to my AVMs… I’d be grateful if you could help…
My AVM is right prefrontal cortex. When it bled during elementary school (I didn’t even know I had an AVM in the first place), I had a sudden severe headache, with a stiff neck. In less than 30 minutes, I vomited and fainted. I remember saying “I feel like I’m gonna die” just moments before I passed out.
This summer, no headache with the bleed, but it bled outside the brain and into the ventricle this time. I was a passenger in a car, and my neck was really stiff again. It felt almost “sloshy” on the inside. I tried moving my neck back and forth, hoping it was a muscle spasm or nerve pain, but it made it worse. So about 10 minutes after the initial pain, I demanded to go to the hospital because my left hand also went numb. I actually had the same thought enter my mind of “I feel like I’m gonna die.” At the hospital, I suggested to my ER doctor that the numbness is my hand could have been from anxiety, and he told me that I looked perfectly fine, but we rushed a CT anyways where the bleed was discovered.
I go in next month for venous embolization. All the best to you!!
Sending prayers your way but I would suggest maybe a second opinion if it’s possible… God bless!