Hi… Not really been on here much, I pop on every now and again to bring me back to earth. Some people on here have been and are going through hell, and I do feel for them. Makes my story small. But I have a worry and advise will be taken on board.
5 years ago it all started with headaches and struggling reading. Long story short. AVM behind left ear causing headaches and cutting field of vision in right eye say 12 o’clock to 3 o’clock ish. So had Gamma knife. Not a bad experience at all, rather relaxing and it helped with the headaches within a few weeks, but eyesight stayed the same.
Fast forward 5 years. Oh every year they called me for a MRI scan to watch it reduce. (it was quite big at the time). Anyway big dos little dos. They called me back, part of the AVM is still there and they are offering me the knife for a second time. Great that’s ok. But now I am being told there is a risk it could take all my field of vision in my right eye and I would lose my driving license or I could leave it and risk a bleed.
It would be great not to have to drive, but I need to to earn money and look after my family. This total loss in only a small risk, but its a risk, the risk of a bleed is smaller, but I am getting older.
I am quite worried because I am a worrier by nature. Lol. But as a lot of you know people don’t really understand how to give advise as they haven’t been here. I haven’t told anyone yet except you on here.
Has anyone been in this situation, or something sommelier.
Hi Matty, its unfortunate the first go round didn’t get it all. My biggest decision associated to my AVM was craniotomy or gamma knife. I went with gamma for a variety of reasons, based on risk and advice from my neurosurgeon. It presented less risk if side effects, particularly due to location, but it presented the risk for a second bleed, which I certainly didn’t want. I was told there was about a 95% chance of obliteration in two years with one dose. I was happy with a number like that as I don’t think there are 100% of anything dealing with the brain so took it as close to being sure as I was getting.
While different than your situation, the similarity lies in the decision process. The determination of "right"decision is sometimes delayed. About 27 months after gamma I had an angio that said it was obliterated, no bleed in that time, and no further deficits. Prior to that day, I was “at peace” with the decision I made based on all the facts. If I had another rupture in the interim while still being at peace with the decision I made, it wouldn’t have been the right one!
Sorry for being so long winded, if I were in your shoes, I would weigh the options and determine my “at peace” decision. Sitting here having oatmeal and a coffee also makes me realize that is easy to say, but really hard to do! Take Care, John.
Hi @matty. Sorry about what you’re going through. For me, I bled in 2000. Bled in 2010, and had a stroke in 2019. I had preventative gamma knife in 2003, 2009, and 2018. As you can see, the surgeries didn’t prevent all the bleeds. I also had my gall bladder cut out, appendix cut out, and part of small intestine as well. My point? At least from my perspective, is that we all will kick the bucket one day. Yet, what do we pour into the bucket? I want my life to remain as a testimony and marker for those who come after to see this person found a reason to live. For me, it’s providing the best life possible for my wife, my children, and those around me. I guess to draw it all together, I remember that gamma knife was a cinch compared to some of the surgeries I and others have had. So to be hopeful and helpful, remember we only have a few years to live on this earth, but we have a long time afterwards for those who come after to reflect on our lives as an encouragement to those who as left. Check out www.mymalformation.com.
I’m with John, really. There’s no perfect answer here and I’d say there’s no “wrong” answer, either. The biggest thing is which one you are most comfortable with.
We all have to make these decisions, whether it is having gamma knife in the first place or to have an embolization (in my case) or a craniotomy. None of these things is without risk. Even the angiogram is risky (and I didn’t even hesitate at that)!
Oh, and please don’t feel you should diminish your medical story: there’s no one-upmanship here. Choosing what to do seems “easy” on the surface but actually having to choose one danger or another is not easy at all.
Well, put Richard! It’s a bitter pill to swallow - and, there are no definitive answers.
As for me, I’m glad my situation unfolded as it did - I hemorrhaged, had no choices left - die, or try.
But, having these decisions laid out in the table has to be so so tough - like Richard mentioned. Shoot, even an angiogram has a possibility of severe side effects(stroke, from I mostly heard)
At Barrow where my work was performed, they don’t push angiograms at all - I thought they were going to be routine, but no - they stay clear of em until they are completely necessary.
GL brother! Definitely no real input from myself - just restating facts:/
It sounds like your AVM is in a similar location to mine - I never got blind spots in that quadrant of my vision but I lost the ability to process what I saw accurately enough to be a safe driver for about 3 years until the swelling and radiation necrosis stabilized after my gamma knife. I had a big AVM in my left parietal lobe, left motor cortex, and left occipital lobe, stage 4 on Spenzler-Martin scale. I was fortunate enough at that time to be disability retired and have good friends who drove me most places, with the ADA bus available to schedule cabulance-like service for when I needed to get someplace and my friends weren’t available.
I agree that there aren’t any easy answers here. I think you just have to decide how much and what kind of risks you are willing to live with and go from there. Which is definitely tough when none of the choices are great. Do you have a therapist on your team who can help you process those decisions?
My AVM was big enough that some of the neurosurgeons I saw wanted to not treat it at all after my bleed. I was fortunate to live in a big city with a big research university with a couple different neurosurgeon groups who were actively doing AVM research so I didn’t have to go out of state for a second opinion. It might be worth seeing if you could get a couple of second opinions. Easier these days with telemedicine to send your scans and schedule a zoom with the best experts.
Best of luck with your journey. I’m glad we have this community who ‘gets’ us.
Hey I can empathize and understand how you’re feeling right now, it’s been about 8 years since my gamma knife surgery. I had a bleed and they did surgery but it left me with hand paralysis and epilepsy but luckily it’s controlled and I can still drive. Honestly I still think about what my life would be like if I hadn’t had that surgery, but if I was in your situation I would probably not risk losing my sight. If the risk of having a bleed is less I would just go on living your life and spend as much time with your family as possible because we don’t know future. There’s absolutely no point in stressing about it. I wish you the best of luck.
Hi Randombegger… Jesus my friend. You’ve been trough it. That what i like on here. Sometimes other stories put things into prospective. I hope all is good with you now.
Yes i want to havw a full bucket when i kick it. Providing for my family is my priority even though some times i am quite selfish. Like now.
Good point. I was at Manchester 5 years ago (when it first appeared) and had a quite big AVM. they were just going to leave it and monitor it. But i did want it out. When i went to the next hospital they were keen to remove it.
So its smaller now, risk of a bleed they say is 4% but gets higher with age i believe.
But yeh, I need to ask a few questions to my surgeon, i have email him just waiting for a reply.
Hi Jessica
Thanks for your words. No i dont have a therapist, I have you guys. My family wont understand, the 2 people i have told (besides you lot) dident seem to understand. Yes a second doctor type opinion is what i want, and to talk to an optician.
The bit you said where you could not process what you saw. I think i have this, a few years ago i told my doctor in some cases for example. I have seen a big car coming near me and still walked out in the road, then i saw it again and stopped. I thought i was imagining it and i think my doctor did too. So is it possible to do this.
I’m doing well, thank you. I’ve currently got other health issues that are driving me crazy at the moment but hopefully I’ll get through them ok!
Another thought… you said the docs indicate you could lose “all of your field of vision”. Do you mean all vision or all of your peripheral vision? I ask because it makes quite a difference but also because losing the peripheral vision seems like a commonish problem for operations in certain areas of the brain (and therefore we do have others in that boat already).
Hi Dick… Field of vision right hand side. All of it. At the moment just 12 to 2 ish. in right eye.
I am trying to post a sketch, the way i under stand is that field of vision on my right eye is touch, this could also affect the field of vision on my left eye right hand side. it very strange how the eyes see. Its not just one optic nerve to each eye. Of sorts.
You may already know this, i am not telling you how to suck eggs i hope.
I mean, that’s a big decision, isn’t it? It seems (from reading here over the last <6 years) that losing peripheral vision is more common, so I thought I’d ask.
I’ll stand by my previous view that there is no right or wrong answer, it just comes down to whether you prefer the rock or the hard place, the devil or the deep blue sea.
I just wanna thank you for posting the graphic. I believe it was called heterogeneous teleglantsia or something like that but basically it’s where one of your eyes just goes dark. I had that happen, ran tests at Duke Opthalmology and Dukes neuroopthamology. They said for me the retina and functional eyeball is fine. It was the brain side of things that was giving essentially a bad connection. Duke told me they couldn’t do anything further but if I would like I could get shaded glasses in case one or both of my eyes started staring off in a different direction. Now nearly two years removed from that visit to Duke I’m glad I went when I did, but there has got to be a better mechanism to getting the word out. I wrote a book about it from the patient’s perspective in “Malformation: when bad things happen to the right kind of people”. However, there is very little funding or research being done because there are so few people affected by it. Ah well, Grace & peace as you continue, blessings as you go!
