It’s a small AVM in the cerebellum 2.4 X 2.2 and pressing on the brain stem. I have this white sound in my head, dizzy, nauseated, memory problems, lack of coordination and I’m having episodes. They think these episodes are panic attacks but they sure take a toll on me. It starts with confusion and fear. Then I go into a stare and feel filled with fear and at times forget where I am and everything looks strange and unknown. It feels like a monster is coming. I even say: “It’s coming…”, when they start. It ends with me sweating, heart racing and I can’t get my breath. When it leaves, I feel depleted and a bit confused. What I would LOVE to know is how long after the Gamma Knife surgery will I start to feel a reduction of symptoms? My doctor said as soon as the procedure is done the chances of it bleeding goes down 50%. Has anyone ever heard that before? My overall mental health is alienation and frustration. I alienate myself because I don’t want anyone to see those episodes. Frustration because I can’t think straight, I can’t even walk straight. To eat, I have to take a pill or risk losing what I’ve eaten. They gave me the option of open brain surgery but I wanted the least invasive procedure. I hope I made the right decision. Thanks for reading, I’m sorry it’s so long. Having problems getting out what I want/need to say. I appreciate everyone of you and you all are in my prayers. Much love and peace to all.
Karron,
Hi. I hope others pitch in, too. I can’t give you experience of gamma knife radiation but I completely get the fact that you want to avoid a craniotomy. I’m in the same space there! The honest answer I think is that from what I’ve read, the gamma knife takes a long time to do its job. I don’t know if it has an immediate effect that grows a bit over time or what but it is definitely something that takes a long time.
So… I hope it does have at least some effect pretty quickly as despite being small, if it is impacting your brainstem, I can see why you’re having quite a rough ride. I do believe the 30% reduction in stroke risk: I just hope that translates into 30% reduction in symptoms, too! You’re worth it, as they say!
Brainstem is the big deal. I had my angiogram this week and at one point, the doc was flushing contrast material in near my brain stem. It was quite a thing. The contrast material he used generally makes you have a proper hot flush wherever it’s been injected. When he injected near the brain stem, it gave a good sensation of dizziness. His explanation being that so many sensations go through the brainstem, the sensation of the contrast material was heightened. Nothing to worry about but a very interesting experience.
I really hope it goes brilliantly and that others can encourage you with their experiences.
Richard
Hi DickD,
Thanks for responding. I’m sorry you’re going through this too.
And I think you’re correct about the brain stem. It causes complications in its own ways.
I have a lot of test on the 8th but I think they are saving the angiogram for the day of the Gamma Knife. They said they will be putting me to sleep for the whole thing. Which has me wondering why. I’ve never read, heard or seen (youtube) them put anyone to sleep for this. Any idea?
I’d be lying if I said I wasn’t scared. I am scared stiff but I know that it has to be done so I have to ignore the scared part. I’m actually looking forward to the procedure.
Keep me informed of how yours goes. When is your surgery and are they using the Gamma Knife?
Thanks,
Karron
Karron, I had Gamma knife November 10th, 2016. I went in early in the morning, and had the “halo” mounted, for this I sat on a bed, they did some local anesthetic at the screw sites and bolted in on. It was tender but not too bad. I then went for a CT scan and then MRI, these didn’t take long as they were very focussed as I had many scans previously. I didn’t need an angio that day as I had two previously, one on May 13th, that was day two in the hospital when my AVM bled and then one August 3rd. The MRI was only 20 minutes, my previous one was over an hour, really loud with the frame mounted. I had a bit f a wait and the actual gamma knife procedure took 24 minutes, plus a little time to get situated. It was quiet, music playing and actually quite relaxing as I was glad to be on with it. Once done, they immediately removed the frame, and the pressure was gone. I was home that afternoon by 1:30 pm. This was a Thursday and I was back to work on Monday. I have never heard of the immediate 50% reduction in bleed possibility, but these are all different, I know it reduces as time passes.
If the staff at your facility is like mine here, they are incredible, I was really relaxed and treated great. I was happy to be there, be treated and get the clock started. I’m now just over 6 months out and go for a follow up MRI at the one year mark. I have had some head aches lately, but nothing concerning and could be due to a little bit of swelling, nothing I need medication for as of yet.
My choice was gamma due to significantly less risk associated to the craniotomy, due to location, fairly deep and a strong possibility of my sight being effected. If you have any questions I may be able to help with, feel free to fire away. I’ll answer then as best I can based on what I experienced. Take Care, John
Hi JD12,
Did you have symptoms before the bleed? If so, have they been relieved any? This dizziness and noise in my head is frustrating. I know the radiation route takes a year or two and sometimes up to 5 to close it.
I don’t think my question was very realistic of me. I don’t think there is a time on when one will feel relief. Everyone is different and I know this. But I’d like to know if you have felt better since the Gamma Knife and if so, how?
I’m being seen at Baylor Scott and White hospital in Temple, TX. They are generally good but it’s always good to know your doctors. They are great about letting me know what coming up next. So many visits and still more to come.
Thanks,
KSue
Don’t ever apologize for writing. We are all in this together… each with our own struggle. I haven’t heard of that type of episode but that does sound very scary. One thing I can tell you is I am going in for radiation on 6-13-17 also. Mine is grade 4, already bled, and I am just hoping to reduce the risk of another bleed. Mine is inoperable. I also have some similar symptoms although I don’t have the episodes. Confusion, searching for names that I have known forever… that’s a little embarrassing, but I’ve learned to really slow down what I say to give my mind some time to recollect. I am off balance but…I’m alive. I’ll take it. I will be praying for you when I’m having my surgery on the 13th. God Bless and I hope the episodes stop right away. Please keep me posted even if it’s s while after. I love to hear victory stories, and also help with disappointment. The truth is, it could always be worse. Let’s count our blessings and stay positive, and we will find our happiness in our new normal☀
-Lorna
Hi Lorna,
Yes, the confusion and name searching is hard. The episodes are the worst part. The embarrassment just makes me want to go kick stones.
I also, will be praying for you. Let’s do keep in touch and compare notes. I am scared of the procedure but more afraid of doing nothing. Mine hasn’t bled but it’s been doing something different. I know by the problems I’ve been having. I feel like I’m in a race with the clock but I know that God won’t take us until he’s ready. I hope he isn’t ready for either of us.
If I had a working brain, I feel these stories would make a wonderful book. I’m no book writer but I know a good read when I see it.
Thanks,
KSue
Karron,
I was asleep for mine. I had an embolization on 3 April and an angio in the same sitting. The doc said that they do ops under general when it will be a long session, as it means you’ll lie nicely still throughout.
Having the whole thing back in April was fine. As I’ve said to Reem recently, I’d describe it as unpleasant rather than painful. But note, I’m talking about an embolisation not gamma knife. You need to look to others for a description of what to expect with GK. I believe the “halo” is at best unpleasant and I would think the worst part.
My recent angio was to re-scan and I got the “all clear” last week. I about half believe the all clear and need to get used to the different pressures in my head.
Good luck!! Its a good thing to make some progress. No point in worrying about it. It needs to be done, it is important and you’ve been waiting to get it done, so go do it!
Very best wishes,
Richard
Hi DickD,
Thank you for your words of comfort. I am freaking out and confused doing it. I’m actually having some sort of a laser surgery. They said it was like the Gamma Knife but a little better. He said it was just like it but he liked this one better. I just call it Gamma Knife because it seemed easier.
I do worry and fret way too much. I need a hobby I can do. Maybe, instead of kicking rocks I should paint those suckers and put nice messages on them. Then just leave them around town so others can find them when they are kicking rocks.
Thanks,
KSue
I had no warning prior to the bleed, or at least anything to alert me something was wrong. I now know not everyone has pulsatile tinnitus! Mine has become more noticeable lately, since gamma and I hope it is just more obstruction to the blood flow as this thing is hopefully closing off. I didn’t feel a whole lot different after gamma, a few mild head aches, and now possibly a little swelling as the radiation does its thing. I can tell you, your questions are fair! No worries there, I do feel relief, maybe not physically but certainly mentally as I know I’m treatable and have been treated, to me that is a tremendous relief. Feel free to ask anything you like, I agree with Lorna, we’re in this together and are so fortunate to have a group that understands. Take Care, John.
Karron,
Here is a link to the different types of radiation therapy (or at least 2) that I moved into the 101 reference section the other day, in case you are interested:
http://www.avmsurvivors.org/t/photons-vs-protons-what-s-the-difference/1238/1
Starting a hobby that engages the mind is a very good idea. I went mad and made an electronic clock from first principles (never successfully done electronics before, probably won’t have the patience to do it again) but it forced me to properly think about something else. I don’t recommend electronics but something that requires patience and concentration is much better than something that leaves the mind free to idle.
When are you up? I’ve lost track.
Best,
Richard
DickD,
Thank you for that information. It was quite enlightening.
And yes, I was going to pick up some rocks while I was out but guess what happened? Yep, I forgot. But you are correct in busying our minds with whatever we can do.
Lorna and I both have the procedure the same day, June 13th. Two weeks away. I wonder how many rocks I can paint before then?..lol.
My dad used to fiddle with clocks and I helped him. I loved when I actually fixed one. I think I fixed two in total, lol. It was fun.
Thanks,
KSue
JD12,
You just answered what I needed to know. I read about the symptoms and procedures but not when it actually starts to help. Sometimes, I feel like I’m losing my mind with all the noise it my head and CRT (can’t remember things). I sit alone most of the time, not wanting to go out and risk an episode in public.
I do appreciate this group and can not wait until I’m on the other side of this. Healed and well. But will we always have brain damage from this or does it repair itself?
Thanks,
KSue
The brain is amazing! The reading I have done talks of near plasticity and the ability of the brain to adjust and re-route. On my scans I have a “void” where my AVM is and the largest clot formed, and had some fairly significant effects post bleed, but over time, and still today over a year later little improvements here and there. I’m pretty much where I was, minus a wee little bit of aphasia from time to time. Even this is far less than it was. If you get a chance read My Stroke of Insight by Jill Bolte Taylor, great book, it helped me understand a lot.
John
It is amazing. I’ve had trouble with this AVM all my life but they just found it about a month ago. I overcompensated when I could but would fall behind when I had migraines. I was diagnosed with migraines when I was 5 years old. They always did MRI but didn’t use contrast. This time they did and found it.
I had a nose bleed twice in my life. One was caused by a softball and the other from a nightmare. Both were direct hits with lots of speed, lol. If my nose started bleeding from out of no where I would think I was dying. Seriously!
I do believe our brains can regenerate but we have to exercise it in the area’s that we know are marked.
I just hope they have a sharp shooter on that SRS Laser machine that day, lol. It’s pressing on the brainstem and I need that.
KSue
Yes…for sure we should stay in touch. Don’t waste time on fear, that’s not from God. Sometimes God uses the most unlikely of people to further His purpose…I’m ok with that. I, like you, trust that He didn’t take me yet, so there is still work for me. He will use everything, waste nothing, and work all things out for the good of those who love Him. Stay strong in the Lord, never give up hope…He knows. He cares for you. I can’t wait to talk to you around the end of June, when we have our wits about us. We. could write a book.Aso many people don’t know…and I find it truly fascinating, even though it is somewhat debilitating. All things are possible…keep the faith and God Bless☀
-Lorna
I read that and have it, if you text me your address I’ll send it. Great book!
-Lorna
And BTW, mine is SRS LINAC as well… how coincidental 
…stay well, it’s almost here… let’s be positive and know that we can do all things through Christ who strengthens us …Phil 4:13… I am praying for us both. Then we can write:sunny:
-Lorna
I’ve been having some symptoms such as temporary blindness and things appear such as zigzags with color of yellow, black, grey and white in my line of vision. This has happened many times before but while this was happening I loved the colors and plan to paint a wall in my house just like what I seen, lol. Got to find the blessing where I can find them! I didn’t sleep well last night and feel tired today, well, I feel tired everyday. I force myself to do things but the doctor told me to take it easy. Yes, the date is near but the waiting is wearing me out. I thought I read and seen every youtube out there on the procedure and they all said it was done on an outpatient basis and you stayed awake. When my doctors office called me they said they would be putting me to sleep and I would be staying for a day or two. What have they told you? It is crazy that we have each other at this time. Thank you Lord! He’s got this and us. Everything is going to be just fine, in 12 days!
Hi JD12, I was reading this post and I found your answer, I had the bleeding on 22 of March of 2016 two moths before you and had the GammaKnife at 14 of December…but I never returned to work…I have many pain and lack of sensation on the right side, did you experienced this? I gained an irrational fear f going back to work, I get tired easily , I don´t like being around too many people because I started to get irritated and the pain gets worse, I can t also stand noise for a long time, my head feels empty when I try to concentrate in one task, sometimes I am afraid that the avm ruptures again …But I miss having a normal life…should I assume this is phisicological issues (besides the pain) and just give the step and say my neurosurgeon that I want to get back to work? Reading your post and seeing that you got back to work so soon made me feel concerned about myself…Wasn´t it hard for you to take this decision (phisically and mentally)?