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AVM Survivors Network

Tired and cognitive issues following gamma knife/ sterotactic suregery, Anyone else?


#1

Hi,Gamma knife treatment on small avm 8 months ago, have not been able to work since as I am so tired and my brain will not take any load. My head feels foggy. I have had 2 MRI's which showed minor and moderate improvement in avm since treatment. I have not had any bleeding. Has anyone had cognitive issues following treatment or know of any papers that refer to this. Thank you


#2

I had the radiation treatment on my small inoperable avm back in 2005. Since then there was a time when my speech turned really bad, I knew what I wanted to say, it just didn't want to come out. A few days later my walking began to look like my talking. I knew I wanted to walk to a certain point and I could, it just looked like I had rubber kegs and I wobbled around. People would rush up to grab me thinking I was drunk and about to fall down, and some would tell me, if you are going to drink this much, you don't need to be walking around. Oh well, also about the time, I was having these tremendous headaches that the doctors couldn't explain. I had an appointment with a neurosurgeon at a well known hospital here in North Carolina and I told him about them and he said I would have to go to the emergency room to be seen. I'm thinking, I am in a neurosurgeons office in the neurosurgeon wing of this hospital which I was taking when myvAVM ruptured and I have to go to the er to be seen about my headaches? He said no worries, ibweill call them and tell them you are coming, they will take you on back, since we live 2 hoiurs away. 8 yes EIGHT hours later, they call us back and we care met with a student intern. All the ER drs had gone home for the night. I tell the fella what is happening and he goes and calls another neurosurgeon, the one who put my shunt in, one I was told was the best neurosurgeon in the world, to see if maybe my shunt was misfunctioning? He said no, if it was, he could be having horrible headaches, give him some Tylenol and send him home. When he walked in a headache hit me, I grabbed the bed rail and his arm, not on purpose, and when it was over, the bed rail was bent and he vsaid "I think you broke my arm" I apologized profusely but said this is what I deal with on a daily basis, sometimes once sometimes 10 times a day. He went back and called the neurosurgeon, and he said, there is nothing wrong with hius shunt, he would be having very bad headaches that he could not handle, give him Tylenol and send him home. I told him I appreciated the offer but knew how much they were going to charge me for each Tylenol and said I had some in the car, and that I knew it wasn't his fault. My next visit back to the hospital, Mr. Wonderful was no longer employed there. Turned out he was not the best neurosurgeon in the world, not even in the state or the hospital that I thought. Anyway, finally found a dr that would look at my shunt. Very hard to get another Dr to check on somebody else's work, but got my family Dr to pull some strings and got him to check me out. Turns out, the shunt was no where close to where it should have been so we have no way off knowing if it was the radiation or the fluid build up in my brain that was causing the problems. I still have da8ly headaches, some of which they call thunderclap? But mine feel and sound like I get shot right through the head with a high powered rifle. I can hear it and feel iut and within a minute I am puking my guts out.BUT, I am alive and that beats the alternative.

oh, after 11years, my last MRI showed no change in the shape of my AVM. The only thing they can tell me is that blood is starting to flow back through that part if my brain again. I have not been able to return to work, which kills me. I grew up on a farm and was used to working alot. When me and my family moved to where we are, I had 2 full time jobs and a part time job that I worked at least 24 hours on, on Saturday and Sunday. It hurts me not to be able to work because where I am from its a man's job to provide for his family. Out of all this, the headaches, the throwing up and all that goes with it, not being able to provide for my family hurts the worse.

#3

What a journey? Thank you for sharing. There are experts and experts. Fortunately and I get very mad headaches. I have problems with problem solving and holding conversations, finding words. I have not worked since operation 8 months and this kills me 2. Todate insurance has kept family afloat.
My head just feels full. My quest is to find someone that knows what going on.


#4

Hi Wilco,

Sorry you are experiencing this. I can somewhat relate to the fatigue and fog. I had open brain surgery almost 3 months ago due to a hemmohrage and aneurysm from AVM that I was clueless about. A medical catheter also ruptured in my brain during an embolism and glued vessels it shouldn’t have. Brain Fog was a huge deal for me after. 6 weeks after the surgery I was rushed to the ER for seizure like symptoms. The ER doc was with me as I was experiencing what I was. I slept for 24 hours afterwards. I woke up and the fog was gone. They’ve tried to diagnosis me with everything. I believe it was my brain’s way of getting rid of the fog.
I’m back to work 8 weeks after surgery. I experience fatigue. I usually sleep over 12 hours a night and a TON on the weekends. I look at it as my brain’surgery way of healing. It has less to do when I’m sleeping then when I’m awake.
I’m still experiencing a lot. I plan on finding some type of therapist that specializes in the type of therapy for those who have experienced what we have. I’ll be seeing my neurosurgeon on the 16th. I’ll be finding out what type of therapist to see and what type of treatments have been researched and known to work. I will let you know what I find out.
Hang in there. I’ll be sending you positive thoughts. I wish you all the best.


#5

Thank you. What a traumatic experience you have had. I am glad the fog has cleared for you. I have fortunately been accepted into a brain injury unit and with a speech pathologist to help with finding memory, occupational dr to help get me to work, etc, they work as a team to address issues even fatigue. Positive thoughts and wishes for you too.


#6

Hi ive had stereotactic r surgery twice. Now 12 years or more. R temp lobe. Still having cognitive problems. Memory probs.attention probs word finding and i have drug resistant complex partial seizures. Im having work probs. They are sending me for cognition testsas i make so many mistakes in my work. Not sure if they will be prepared to make further adjustments to my work. So i may be retired on health grounds. So yes to your question i think it does.


#7

Hi Wilco, I too have not been able to work or do my usual things since Gamma Knife. I just had it on Jan 22, and fatigue is daily issue, with need to nap around 1pm every day. Also short term memory problems and focus were bad before surgery, but worse now. Hard to complete a task, only one thing at a time for me and it takes forever! Your not alone. I try my best and challenge my brain with puzzles and games. My family is supportive, talk to your Dr and just know you are not crazy. Best of luck!


#8

Hi Wilco, I had Gamma Knife treatment for a small avm in my right cerebellum about 9 months ago. And yes, I am increasingly challenged with fatigue. I get easily a bit confused with stress, it is as if my brain refuses to take in more when I am stressed. I get really quickly tired after having been up only a coulpe of hours, and I do at times sleep double of what I used to earlier. I was like that the first couple of weeks after the gamma knife, then more or less ok until 5 - 6 months after. Christmas holiday helped a lot, and I was better after some weeks rest. But all back with fatigue again, and on sick leave now. Had MR check up after 7 months, and pics show that the AVM has started to shrink (yeah!), but also some swelling / gliosis around the AVM. Doctor was not concerned about that. Short term memory and concentration are not completely off, but not at their best either. And I quite frequently loose words, or use the wrong word. Doctor says that this would not be typical symptoms based on AVM location, but I am still quite certain that it is related. Good luck to you and hope your fatigue & AVM disappear!


#9

Hello Wilco, I found your topic because I am exactly at the 8 months mark after radiosurgery also in a very small avm in Thalamus and I feel exactly like you! I have felt better but now it seems that I have periods that no one can talk with me because I just need a moment to stay steel and not be forced to think or talk! I havent returned to work also and I feel so sad because 8 months is already so much time for not being able to do the most “basic” stuff , can I assume that radiosurgery is at her biggest period now (I read somewhere that it is between the 6th and the 9th month) and just have mre patiente and faith that I will feel better again? How are you now and when t ended this fatigue? Thank you so much!


#10

Hi
I am adjusting to having these symptoms. The AVM 2 years after treatment is still present although not as dense. Surgeon still confident of it disappearing. No explanation on symptoms. Although others Neurologist have suggested radiation damage and/ or FNS. I have tried a number to improve memory and reduce fatigue to no avail, although starting new one soon. I only get headaches when I push my brain to much. In addition to impact on work, it has had a huge impact on my relationship with friends as I find it hard to have long or detailed conversations. Best wishes Tim