I mentioned it earlier, but I just had an “embolization” - shoot, my vision got better since I don’t have any built up blood vessel pressure behind my right eye
I think you’ll do alright - today’s medical advances are probably the most amazing thing I have come across.
I never thought I’d have a normal life after my rupture. But, hey - go figure. And, most issues I deal with now are from the rupture, not the procedure itself.
Wish you the best!
Hello, I’m coming up on 7 months since resection for my unruptured right temporal Grade II AVM at Mayo Clinic-Rochester. I now have upper left quadrantanopsia, which means a section of my upper left vision (in both eyes, this is caused by the inflammation from surgery) is missing. It’s not blacked out or anything but when looking straight ahead I now have a thin oval-shaped blind spot. Agree with comment about getting a visual field test done before surgery if possible. My visual field was perfect pre-surgery. At first I thought peripheral was fine after surgery but then I noticed I didn’t see people coming directly at me when walking. I also have “tipsyness” about 60% of the time that comes with this condition due to spatial awareness changes. I am doing visual therapy to overcome this and it’s working slowly. Find yourself a good neuro-optometrist who can work with you. I’ve had two visual field tests (2m after resection, 6m after) and it IS getting better. I drive only to places nearby at off hours on days when I feel good. I can hit a tennis ball against the wall 30 times without missing. I can ride a bike but must be as careful as driving. Emotionally, this has been difficult to deal with. Only today have I felt able to type this. I do meditation daily and see a psych. I had a neuro-ophthalmologist tell me that therapy doesn’t work, that I may not get better, but I fired him and I will continue to work on it and watch my visual field tests get better. There is nothing wrong with my eyes. Things that affect my healing: 1. Quality sleep, 2. proper nutrition, 3, Exercise, 4. staying positive. To prepare for surgery I told myself “Reframe fear as excitement, it feels almost the same in the body.” This is a quote from Alex Honnold, a “free climber” who was the keynote at some neurologist conference last year. It was exciting: 4 nights in ICU and 3 in a regular room. But I got through it and can do most things except drive. One day. Good luck with your surgery. Sending you positive vibes.
Again, thanks for everyone who has replied to this, I did not expect so many! With four days to go, I am in this sort of limbo stage as I have finished finals and I don’t have much to distract me, so I am excited to have my surgery and start the recovery process. It is hard to predict what I will feel like, but the advice I have received here will most likely make recovering much easier. My surgeon seems very talented and I keep hearing great stories about him and have even met others he has operated on.
When able, I will update this post about how I am feeling. I hope that will help anyone else who is going through this prepare and at least know what to expect. Regardless, this experience will be life-changing for anyone that must go through it, but it will grant a new outlook on life and much better resiliency going forward. Looking back, this process so far has forced me to amend many bad habits and in a way, has been a COVID rebound. With positivity and faith I believe anything is possible and I must remind myself that there are always upsides to downsides. I will update again soon. Thanks everyone!!
I’ve watched a few videos of Dr.Baskaya doing surgeries and a few of his talks on YouTube. From my understanding, he is a great neurosurgeon and has a lot of experience with AVMs. My guess is that he won’t be embolizing in advance. He has mentioned in the past that many smaller AVMs don’t need embolization due to the risk.
What has he said about your possible risks for deficits?
Please keep us informed with how you make out.
Yeah, Dr. Baskaya definitely talented and he is the director of multiple neurosurgery programs at UW. I was originally scheduled for the 20th, but Dr. Baskaya is actually running a microsurgery conference!
The possible deficits he talked about were visual field deficits on the right side of both eyes since the AVM is on the posterior left side of the brain. The outcomes of his patients are very good and I believe the chance and severity of deficit would be much lower in surgery than an uncontrolled rupture.
I’m guessing he will not be embolizing?
No speech issues in your case? Hopefully the visual field heals with time. Do you live in Wisconsin?
He isn’t embolizing. I don’t remember exactly why, but something to the effect of it not being necessary or that it interferes with surgery?
I am from Wisconsin and I go to UW-Madison, so I am pretty comfortable here. Ironically I am a neurobiology major!
All the best to Eazy and Jenifer for your surgeries. Your positivity will serve you well and you will be able to focus on recovery put this episode behind you.
I know you said originally your surgery was scheduled for the 20th but it was pushed out due to the conference. When is your surgery date scheduled for now?
Best of luck! Please let us all know how you are doing when you are able to. We are all wishing you the best. You are in good hands.
I was wondering how your surgery went? How are you doing?
Probably still in hospital but hopefully doing well. I always find this stage of waiting for someone to return quite a worrying wait.
I often feel a bit like Brian Hanrahan counting people off to hospital and counting them back home again (but you’d need to be British to know the reference).
Wishing u the best brother!
High there, my AVM is not in my brain but I still wanted to wish you luck!
My thoughts are with you and your family
Updates five days from surgery:
Surgery went really well, it ended up taking 7 and a half hours but when you are on anaetheshia it feels like no time has passed at all. The only unbearable day was the first, and after taking oxycodone I felt very nauseous and refused to take any more. I am wondering if anyone else experienced that.
I switched to tyelenol and that has worked much better for me at least. I only have occasional headaches that are eased by the tyeleonl and I take steroid pills to reduce swelling which has worked very well. I was walking a little the second day after surgery but I had trouble looking at a phone or books for the first couple of days. It also didn’t help that I didn’t have my contacts in. My advice is to be very patient the first days and realize that you will improve with time. I have some peripheral vision loss, but that has also seemed to improve. My doctor even seemed irritated with my occupational therapists that they suggested that I had visual deficits so soon; he expects my vision to improve over two months. Just because you have a visual field cut doesn’t mean that you won’t start to compensate for it.
I think four to five days is a reasonable time to expect to be in the hospital (at least for lower grades AVMs). You won’t feel like doing or eating much the first days, but then your hunger comes back STRONG. It was kind of amazing to see how much I improved each day. One of the most annoying things for me as a young person, was being hooked up to monitors and the constant neuro checks they gave me, but that’s not saying much! There are countless people at the hospital that are there to help you and the nurses were all great.
My restrictions as of now are mainly physical. I am not supposed to bend my head below my heart or lift more than ten pounds. It will also take a while to drive or ride a bike safely.
If you have an unruptured AVM consider yourself blessed! I know each AVM is different and there are many outcomes, but receiving care, if safe to do so, is always the best route to go. I hope this gives some people who find this post some hope and solace that everything will be alright. If your AVM is similar to mine, take precautions seriously, especially before surgery and remember to move forward with patience. I wish everyone the best on their journeys, this is a hurdle that you can overcome!
Great to hear! We have been patiently waiting for your update, and there will be a lot of people to hear you are doing so well! Take Care, and take it easy! John.
Good to hear from u so soon!
And, up walking!
Same here, but not even close - being on a bed alarm sucked. I’m double your age but, just as active if not more than an average guy 1/2 my age.
Time stood still for a while
Post my hemorrhage & then embolization I was off opiates pretty quickly. Before hand, was a different story - I was put on Percocet, Fentanyl & Morphine < unfortunately, I like the combo(not that I use any now) - the nite prior is when I overdosed & flat lined - definitely better to do without em. In my case, it was just to keep my stable.
Sound like you’re doing real well man!
You’ve been through quite a lot! So long as things go well (and it sounds like everything has gone nicely) I think it’s surprising how well people cope with operations. I know I was surprised I copied with my embolization better than I anticipated.
Some of the effects you’re having (e.g. peripheral vision) might be caused by or exacerbated by swelling, where everything has got upset by the invasive procedure. As things settle down, some effects will go away completely and some effects may reduce or stay. It’s quite normal to have things going on post op that will fade away in time. So be positive: you’ve properly been through the mill and come out well so far on the other side.
Well done! Be patient and take things really easy.
It’s very relieving to know you’ve got through well.
Very best wishes,
So glad it went well @eazy . If you have surgery again one thing that works for me is Zofran or phenergan. I too like you got super nauseated from the pain meds so they would give Zofran via iv is best like 30 minutes prior and it made a huge difference.
It can be exhausting to be in hospital with them checking on you so much . You can’t get much rest . It’s so much better to be in your own bed.