Same exact thing they told me. But, being honest - I use anything that helps + I still use a tad of aspirin for anti clotting + I donate blood because my hemoglobin tends to go high and so does my RBC count
I had a headache that decided to stick around for two weeks about a month ago. The wife gave me the last few percocets she had - those were the only thing that helped
I think any kind of thinning of the blood would be a problem for starting a bleed. Ibuprofen isn’t a blood thinner but they say “can act like a blood thinner” not sure the difference. Aspirin would definitely scare me. Thanks
The way I take it is that if you’ve had your AVM treated, anti-inflammatories are low risk (and necessary from time to time for some things). If, however, your AVM is not treated or for some reason you’re at risk of a haemorrhage, then obviously thinner blood is going to wreak more damage for longer than if it were a bit more likely to clot.
So I think if you’ve a haemorrhage risk, it’s definitely worth avoiding. Otherwise, you’d think it doesn’t increase the risk of a bleed, more likely the impact or duration of one if it happens. However, I’m just going by common sense/logic rather than medical advice I’ve been given.
Yeah, hard to say. I don’t want any risk lol. Think I may stay away and find other alternatives. Swimming helps a lot with my back. I am healthy with exception of back spine problems. I think lifestyle plays a part in all medical problems. A nurse friend of mine, who when I told her that the people on this site think I am longer survivor than most, stated that having other artery problems from maybe high cholesterol and blood pressure which damages the artery walls plays a big part in bleeding. hhhmmm, I guess it would. She mentioned because I am 30 years vegetarian and 5+ years vegan it may have helped more than we think. Due to very low cholesterol. My blood pressure is under control with mostly lifestyle not meds and my Cholesterol has been about 140 on average my entire life. I know lifestyle matters to a point with all med problems but wonder how much it could have helped me with this one. I was always a health nut but become very much aware after the AVM. Just another thought we will never know the answer to.
Shoot, that’s awesome & a very good point.
I’m still 220+ pounds, lift fairly heavy & eat garbage(no need to sugar coat it)
My BP is stable now, but I’m on two BP meds + 5mg of daily cialis
I have definitely been considering some life changes. But, it’s not easy - I been this way for a long time. And, what’s really something is according to my neurosurgical team I wouldn’t make this recovery as I did if I wasn’t in this physical shape.
I definitely take it easier than I did prior to my hemorrhage/stroke. But, I’m still very intense - let alone considering my brain has 3+ CC’s of glue rerouting blood flow. My PCP just put me on prescription testosterone. Which I was quite surprised by. I just had routine blood work & she’s like - ummmm, you produce nothing. I haven’t taken anything supplement like aside from natural stuff for months. She asked if I wanted to see a specialist to get more head imaging. I told her, I had plenty already - just about 6 months ago I had another MRI. So, she prescribed it - her thought was it’s from brain trauma. But, that’s just her opinion - I have no idea
I feel great now - so, who knows
For sure changes are hard. After all this time I still run things by my neurosurgeon office. And only we ourselves can decide how far we want to take things. And if the changes are worth it. I have a sister who if she couldn’t eat certain things would rather die. For me health has always been my first concern and I really can give up just about anything but I realize that’s not for everybody. We all make the right decisions for ourselves and no one else. But this is why we really can’t compare with each other. So many variables just on the medical side alone. After I had my AVM surgery the doctor said to me it’s done, it’s over, you never have to worry about it again you will not die from THIS AVM. This correction will last your normal lifetime he said. You could get another one or you can die from 100 million other things but this one is done. He was that confident. But I think that’s before we knew about the glue deterioration. The knowledge that’s out there all these years later that may not be true any longer. I should go through my file and see which glue they used and look into it. I called her office yesterday but they haven’t gotten back to me. You would imagine with age changes in artery can change everything just hope I have a lot more time left. And I hope that for all of us.
@Q11 I take 200mg of a prescription anti inflammatory drug called Celebrex which all three of my Stanford Neurologists ( all heads of their depts ) know I take .
Now my orthopedic who I adore says Mobic works better cause it also helps with pain but I am afraid to try cause it took so long for my insurance to approve the Celebrex.
I’m actually supposed to take it twice a day I only take it once a day. It’s really gentle on my stomach and I’ve been taking it even before my AVm and I was on 100 mg once a day prior to my stroke.
I can’t take most opiates anything that sick Tylenol doesn’t do anything for my head pain and the only thing that has worked is ketamine infusions and since I got the ketamine infusions I get ketamine that melts under my tongue it’s only 20 mg which is I guess is a light prescription but I am a lightweight.
They also make ketamine compounding cream of ketamine pills also come from a compounding pharmacy.
I also get Botox shots in my head, my jaw and in my trapezoids every three months. my pain neurologist does it where my head pain is which is off protocol and they say it doesn’t make sense but they do it because it helps me actually wears off two weeks before they’re supposed to do it and it takes about two weeks to work and I am able to get this because I get migraines and my migraines intensified after my strokes.
Even if you are on Medicare you can get this treatment.
Angela
Everything is so individualized. I sure hope you’re getting some relief for your pain. I never heard of some of those. Keep us updated I hope you’re doing well. I really hate drugs. I try to stay away from them at all costs but sometimes we have to take them and these are those times. I do take Tramadol for my back. Best to you
@DickD you are correct when they found my AVM/ DAVF I still had my five blood clots in my brain that caused my massive stroke and coma. I was on blood thinners and they took me off but never stopped my Celebrex.
They only gave me blood thinners during my Angio embolism.
I was super worried when they stopped my blood thinners that my clots would never go away , but they did.
Obviously my neurologist explained that dangers of the thinners with the AVM.
Richard great topic I have no idea about the glue deteriorating… I wonder how many of us have glue…
Hugs Angela
Yeah, me neither, so I’m definitely interested in how we glueys get on! I think @mike_az_21 and I are glue-only and there are others.
My experience of reading round here over the last 6+ years is that it seems to me to be pretty stable for brain AVMs but the guys who have extremity AVMs seem to have a much more difficult always-chasing-another-embolisation situation. My personal theory about that (which I use to settle my mind somewhat) is that in an extremity AVM, there are often lots of moving parts and no protection from bumps and bangs, whereas mine is hidden inside my skull. So I’m hoping there’s much more longevity to embos in the brain than seems to be the case with the Extremity guys.
As we discover more about this area, it will be good to share.
There are quite a few combinations they use now aside from a craniotomy. Coils, GK & embolization copolymers, clips, etc. - and, they mix up whatever is necessary from patient to patient
In my case, they were like - we have a straight shot to this thing, we’ll get it in as many tries as it takes. And, consider yourself lucky that embolization is now an option - otherwise, well - they showed me what part of my skull would have to come off - I def would look “different” to say the least
As far as long term deterioration, that’s a tough one. Theoretically deterioration can be caused by whatever substances we take in.
Deterioration is a new thought for me - makes sense though for sure.
My first concern was recanalization, which seems to be low
New AVM formation
And, the list goes on
I like one of the original thoughts - forget about it after it’s fixed
GL to us all, pretty much
Ok, so I talked to my neurosurgeon’s office. They assure me there are many people still doing fine with the same procedure I had performed for an AVM, this many years later and longer. Most, she said, don’t have a problem % is low and if so, it’s usually close to the correction time of the AVM. So, longer doesn’t mean more likely to bleed. I asked if I could make an appointment to be checked out and maybe do imaging to make sure things are ok. They said they would ask the Dr and call me for an appointment. So, I will let you know how it all goes. She said the same thing I did. People move on and only go on the sites when there is problem, so long term isn’t reported, and they haven’t done studies long term because they don’t feel they need to. I was glad to hear people have survived much longer than I have so far. Good news for all of us. Say a prayer. I get back to you whenever I get the results, providing they decide to do it, if not sooner.
It’s definitely an encouraging message. Thanks for sharing.
I just want to clear something up, I don’t mean to confuse people. I was the one who brought up the deterioration of the glue. I believe it was one of the polymers that was used for a very short time at the time I had mine done around 1999. Which is why that was said to me. But I don’t think I had that one. In the last 20 years they have all been good and I don’t think anybody has to worry about deterioration. If I go to my appointment I will ask about that to double check.
@Q11 I hate drugs too but have literally let the pain Dept try everything on me even shots up my nose that must be a medieval form of torture which of course did nothing to improve my pain but screwed up one of my nostrils for a few weeks.
Once my husband passed out from the big needles they were using and he could hear the crunchy sound that I thought I could only hear from the needle hitting my skull.
I thought they were talking to me when they said Are you going to pass out? 
Good or Bad as my drs say it’s bad that I have a high tolerance of pain so usually if I feel something then I know I usually need surgery.
Nighttime is the worse . I try to stay busy during the day
I think we all just put one foot in front of the other and push frwd and carry on.
.
Yes you are right. Sometimes we just have no choice medicine is the only option left. We all make decisions based on what we know about our situation. One day at a time.
Hey, thx for all the info!
Def hard to get a survey going of patients way past their procedure.
Well, you keep on keeping on! 23 years & counting don’t sound too bad to me right now one bit.
Thanks you’ll get there. I am sure