You as well! All the best to you on your journey. Please reach out if you need support or anything at all. 
The 2 women in the picture were my occupational therapist an my physical therapist. Was thinking about stopping by last summer because it was the 20th anniversary of my bleed but then coronavirus hit. 
. Maybe some time this summer.
Ashleigh,
They didnāt discover my AVM until I was 64 following a seizure at the gym. The Doctors decided to just monitor since it hadnāt ruptured in my first 64 years. Weāll a year later I had another following a workout and then a year later a third seizure while out for a run. Needless to say, I started to cut back on my exercising, and started to look at my options for treatment. The neurosurgeon gave me the option of radiation treatment, but he was 50/50 on the need. Then a month later I suffered a stroke and sealed my options. I had radiation treatment in December and just had my first MRI two weeks ago and everything is looking good.
I have been fortunate that with a few months of speech therapy my only long lasting effect is a little short term memory recallā¦but then again that might have something to do with my age. The neurosurgeon estimates 2 years to heal, and I am gaining confidence every day that it will happen. I can only recommend that you educate your self on your options and be as aggressive as you feel comfortable with in treating it. Except for lifting things, toning down my exercise routine and staying off ladders, my life is pretty much the same.
I plan on living a full life within limitations. The Docs said Iāll probably canāt run a marathon, but that wasnāt on my bucket list anyway. I look at it as belonging to a pretty exclusive club. Good luck to you .
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Stay strong! Networking is wonderful. Good things come to those who are virtuous and clear minded. You and I are similar in so many ways. Feel free to contact me personally. You arenāt alone!
Lillian (Lilly) Eickhoff
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I think the best decision making tool I found is to ask the professional what they would do and if it was them, who would they go to. I think that was how I found the best results. If youāre not already, you should prepare for consequences of the cure. For example some of the tissue being fed could atrophy. In my case, the operation was a complete success. I now have stroke like symptoms from either the ooze or the operation to repair it. I would have chosen this over before but I was unprepared. I had this magical idea that I would die on the operating table or be good as new.
Thanks Richard, that is really useful stuff to know!!
Hey TSparky, thanks for replying! I am glad things are looking good for you so far! Sucks you have had to cut down on the exercise a bit, but good you can still do some. I have done a lot of research on Gamma knife but nothing really on embolisation yet as I didnāt even know it was a possible option - but I for sure will now 
Thanks - yeah thatās what Iāll be researching too for sure. I feel like I just want to know every possibility
Hellp @ashleigh I am glad you found this site - Finding out you have a rare brain life changing invisible health issue is heavy emotionally.
My health journey started out a little different where I had 5 blood clots in my brain CVST ( the kind they are talking about now that people are getting due to the vaccines) and I went into a coma. I was having a lot of pain but just thought my migraines were changing. While I was in my coma on day 2 I guess I was not doing too well and they actually told my family I was going to die. I think this is when I thought I was in Maui. At first I saw big doors and then warm light like when you feel warm sun on you after you have been for a swim and I wanted to go into the light but I felt like I was being held down but then when I looked out it looked like Maui. So when I did wake up from my coma I was paralyzed and I could only say one or two words. I had brain damage. My dad told the drs it was okay I could afford to loose some! I was thinking in my head shut up! I want all my brain cells! Oh its true too you can hear everything when you are in a coma. I was 43 and very active - I thought wow my husband is 10 years older than me with high bp and cholesterol but I am the one who had a stroke? My stroke had nothing to do with those things but my body seems to like to hold onto vit K and had been eating too healthy.
Then about 6 months later my AVM/DAVF was found and thought is this really happening I just got back my movement. I told my dr just cut it out I need to have a Christmas partyā¦clearly I was in denial of my health issues. My drs who are both the heads of their depts at Stanford told me to relax and that I would not be having anything cut out but would have an embolism in Janā¦
I even went back to work against my drs orders which I learned the hardway was a mistake. Can you tell I am stubborn?
So once I accepted the new me and the still strive to get back to the old me. I think it was good for me and for my family as they were all stressed each day when I was going to work. I did decide to concentrate on my health,listen to my doctors and leave work.
When I still could not speak well or walk well and was doing many days of physical therapy and speech therapy I would see much older people with their paid care givers who had strokes and the paid care givers usually were not paying any attention. I thought to myself if I did get better that some how I would give back. So after I left my job - I started to volunteer with a no kill shelter and then got asked to be a board member. Then a few years later and still to this day I am a commissioner on my local counties Aging Commission even though I am not a Senior I have been through some of their experiences. We may change because of our health issues but we always have value and ways to make a difference no matter what- I think talking about your fears is important with your support team- My fear now is having another stroke so when I had my first angio/embolism My husband and spoke a great deal about what to do if I got paralyzed again on my left side and if I could not talk. So my angio/embolism was 7 hours and guess what I had another stroke! So when I woke up for some reason I felt like I was being zapped and only the student/resident dr was there with nurses so I started to sign āI am in Painā then " Go Get My Stroke Dr" ( he was also part of my surgery team) but instead my nurse Greg whom I told earlier to get the baldest man in the room and only tell him if things go wrong cause there is about a dz of my crazy loving Italian relatives in the waiting room who will wacko on you cause they cant take another bad thing happening to you. So Greg did go get my husband and saw my Italian family and once clear of them said we dont understand what Angela is signingā¦my husband looked at me and said I dont know what she is signing and F#$$ing did know she could sign! But we had talked about writing if I could not speak even thought at that time they still thought it was the same part of the brain - he got pen and paper and I wrote the same things I was signing in both English and Frenchā¦I dont recall that part but thankfully my husband knows some basic French. Then my husband a black belt in 3 forms of martial arts proceeded to threaten the doctor to give me some pain medsā¦ and maybe Greg the nurse thought he should of grabbed my mom instead - They soon had my husband leave and then moved me. I think they kept me medicated until the next am where my Stroke dr came to check on me and my husband and family alerted him to what had happened. The student/resident dr lost his job I think because he never informed his boss the head of neuro radiology or my other dr the head of stroke what had happened. Thankfully by the am I was back to myself again. Then they wanted to go back in a month or two but I wanted to go back to work and I wanted to give my brain some to heal - So I waited 3 years and the angiogram showed some how some of the feeders had sealed themselves - this is rare but can happen- the rest of the feeders cant be touched without risk of paralysis so we are just wait and watching. Anytime I feel a bit off I ping my stroke dr and then he runs MRA and and MRV since I had CVST too and then we see if there is anything new and I need angiogram and so far in 6 years nothing has turned up. We are here for you- Its a weird thing to have an invisible health issue esp in our brains!
Hugs Angela
WOWā¦ that is a lot to go through and deal with!!! Iām glad you havenāt had any added issues the last 6 years! Are you back to full function - as in walking and talking fine now? How long did it take you, with working with a physio, to improve/get back to walking?
Thanks - yeah itās such a strange thing!
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I wholeheartedly agree. Angela, itās great to hear your story laid out a bit more like this. Thank you.
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Sooo questionā¦ has anyone had Gamma Knife then had a rupture after? Was just thinking that as it can take years to work, if anyone has ruptured before it had the chance to work?
It is a risk. From what Iāve read, if the docs feel that youāre likely to rupture before gamma knife has done itās job, they might recommend a different treatment. If itās your only safe treatment option, then obviously itās a risk youāll need to understand.
I believe straight AVMs are congenital, so youāve had it since birth. In this regard, it may not be a rush to get it fixed as it has been there a long time. DAVFs seem to make an appearance later in life, so I think there is a theory that at least some DAVFs are acquired. In this regard, there is likely to be more urgency to get it fixed as it hasnāt already been there for 50 years (in my case).
Sound the doctor out as to whether there is a big risk of it bleeding while you wait for it to work (and therefore a better/safer alternative treatment) or whether in his or her opinion gamma is the best choice.
Make sense?
In your case the doc is recommending embolization + gamma knife and I think this is the best option youāll get.
The embolization will sort out the major vessels but you canāt get a catheter into the really tiny vessels, so gamma knife is to address those. My assumption is that your risk of a big bleed is addressed by glueing/coiling the major vessels and to have the tiny ones have to take a few years is as good an option as you can be offered, other than surgery.
Sometimes, the risk with surgery is the collateral damage, so embolization and gamma knife seek to address the problem without doing so much collateral damage to healthy brain tissue.
Makes senseā¦ thank you!!
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So I am waiting for my meeting with the specialists for the results of my angio & what treatment they recommend (9th June), but I got some news/answers from the nurse.
- From the sounds of it, I donāt think embolisation is a possibility for me after all, I think maybe just GK.
- My AVM has bled a tiny bit.
- They canāt agree on whether I am able to do contact sports or not (which is kind of important as itās my job!).
To be fair, the season has just finished and my meeting is in 3 weeks, so I should know more before the next season starts up again.
I am a bit uneasy that it is an aneurysm and has bled a little, as I know a proper bleed is reallyyyy bad news for me. I wonder if there is a way they could estimate when it bled?
As I guess is the case for mostā¦ I just want to know more!
Iām sure they should be able to tell you more about the bleeding. Certainly, they will be able to say whether it is an extensive bleed or more of a āweepā. Since you sound well, it seems likely not to have been an extensive bleed: I think youād know about it before now, otherwise.
Honestly, I think you probably need to sit tight and get good feedback from the neuro as to what it all means and is gamma knife still the right / best option.
You mentioned an aneurysm as well: did you mean that or did you mean AVM? Iām less sure about aneurysms but I think they are more regularly treated through open surgery or embolisation, not GK. But it might depend on the size.
Best not to second-guess all this stuff: just find out the facts. If there is anything we can do to help you going into that meeting, let us know how we can help. It might be āI can think of these questionsā¦ is there anything else important I might ask?ā The one question I can think of re contact sports would be whether wearing a head guard of any kind would enable you to carry on with football safely: you know, the sexy things we see rugby players wearing, for example 
but even heading the ball seems increasingly to be considered damaging these days. Now Iām second-guessing things. Letās not guess. Find out the facts. Then you can work from there. I always tell my wife never to worry between ānowā (feeling poorly and waiting for a Dr appointment) and whenever the appointment is because sheāll worry herself to bits in the meanwhile. Thatās pointless. Just get the facts and work from there.
Anything we can do to help meanwhile, just say.
Very best wishes,
Richard
Thanks Richard, i appreciate it.
I will for sure be going in with a list of questions - the nurse also told me to get a big list haha!
Oh yeah that lovely head-wearā¦ Iāll definitely wear it if it means I can keep playing though.
I think it was more of a weep, but Iāll know more on the 9th like you said.
The nurse said I have an aneurysm in the middle of my AVMā¦ sounds like I like to keep things interesting haha?!
Iāll probably write my list of questions over the next few days and pass it by you guys to see if I am missing anything.
Thanks, Ashleigh
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Thinking positiveā¦ maybe the aneurysm will become redundant if the AVM gets shut down around it. GK might still be the route out of this mess 
The main thing I feel about having had to go through this stuff is to stay positive. Itās really quite difficult but I know I put myself through more than I needed just because of worry. If thereās any way you can persuade yourself to just go with this as a rather unusual turn in the road but that youāll still get to where you thought you were going, go for it.
We are here for as much as you need us. Best wishes,
Richard
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