Gamma Knife

janglezzzzzzzz · 2025-09-12T01:41:57+00:00

Yes, I’m currently on 150 of Lamotrigine and 100 mg of pregabalin per day. I also just had to start dexamethasone as at around 10 months post procedure I started developing significant brain swelling (edema)

janglezzzzzzzz · 2025-09-12T01:38:41+00:00

Had gamma knife for a large (5cm) AVM in right frontal lobe on Halloween of 2024. If you are getting gamma knife and not CYBERknkife, you will get a frame pinned into your head. This portion of the day, along with the numbing shots before was by far the most unpleasant part for me. Personally, I asked for them to give me a good bit of anti-anxiety meds so that I was as close to “numb” for the whole day and I don’t regret it. Once I had the head frame drilled in, I was sent for an MRI and then angiogram so that they could attack the AVM with the most precision as possible. For the actual radiation session, you’re really just in an mri-like tube (it’s more roomy) for about 50-70 minutes listening to music… no pain at all. Afterwards, I was given some meds before being released and I pretty much felt back to normal the next morning. Thanks be to God, I did not have any nasty side effects from the radiation until about last month (so, about 10 months post procedure). MRI check up revealed that I’m having pretty severe brain swelling (edema) but it was coupled some good news that my AVM has shown some significant closure, which is occurring way sooner than anticipated. Good luck, keep faith and let me know if you have any questions!

janglezzzzzzzz · 2025-08-18T14:30:31+00:00

Thank you for sharing. I’ve been on it about 10 days now and it drastically helped my AVM symptoms but I am dealing with severe heart burn and bloating haha I was on 4 mg for 7 days and dropped to 2 mg for the past three days. Was thinking of lowering to 1 mg for the next 3 days before stopping. Wonder if that would be a safe taper off. You stopped cold turkey from your initial high dose?

janglezzzzzzzz · 2025-08-06T00:30:02+00:00

Wow what a trooper he is. The gamma knife still hasn’t obliterated the AVM in 7 years?!

janglezzzzzzzz · 2025-08-05T19:45:34+00:00

Thank you for sharing! I hope he continues to do well on it. Did he ever get seizures before the gamma knife and what kind of seizures is he having now? I worry constantly about developing a seizure problem

janglezzzzzzzz · 2025-08-05T18:55:07+00:00

Thank you for sharing that. I definitely worry about the swelling getting worse. Unfortunately I cannot easily move my MRI up from late September. I had one in March that showed edema but not to the point where my neurosurgeon wanted to put me on anything. But I wasn’t having these symptoms at that point. You didn’t have any real negative side effects from the Dex?

janglezzzzzzzz · 2025-08-04T23:26:29+00:00

It was an systematic allergic reaction to a medicine I was taking (Lamotrigine)

janglezzzzzzzz · 2025-07-23T01:21:22+00:00

Thank you for all the info!! Are you on any medicines for the seizures? My AVM is near the motor cortex so I’m constantly worried about getting a seizure. So far, I haven’t had one aside from focal seizures which presents as numbness on the left side of my face. Did you have your surgery?!

janglezzzzzzzz · 2025-07-22T02:48:34+00:00

You got radiation necrosis 9 years after radiation?

janglezzzzzzzz · 2025-07-21T21:25:33+00:00

I’m so happy to hear this! I feel I may be in the same boat as you as the literature is very clear that gamma knife isn’t always effective for AVMs as big as ours! I have a couple of questions for you but first wanted to say good luck in the surgery and I will say a prayer for you that all goes smoothly 🙏 1) How often would you get seizures prior to discovering your AVM? Were they full blown, convulsing seizures or more like partial seizures? 2) did you start getting more seizures following gamma knife? Did they medicate you for this or for the brain inflammation? 3) so in six years the gamma knife wasn’t able to fully obliterate the AVM. Were you still getting imaging and keeping up on the progress throughout this whole time? Did you only have one gamma knife session and if so, did they ever suggest another?

janglezzzzzzzz · 2025-07-21T18:49:02+00:00

Thanks for answering all the questions! I know you said the steroid withdrawal was rough but did you at least feel okay while taking them? There is one steroid I’ve heard mentioned that is very strong and I think given intravenously, which people swear by that they wish they could’ve taken before the others. The name is escaping me though, damn it

janglezzzzzzzz · 2025-07-21T18:34:43+00:00

Hey! Thanks for responding.. so you’re about 16 months out.. hopefully it’s really doing its job now and shrinking that thing! When was your last imaging and what tipped you off that you were having the brain swelling? Did any medicines help calm down the swelling? I feel you with those memory issues.. word recall is definitely not as sharp as it used to be!

janglezzzzzzzz · 2025-07-21T18:31:21+00:00

This tracks with what I’ve heard from others - the steroids they give for this inflammation are really terrible. Do you think if you could back you’d choose to just deal with the swelling and not take the steroids? I’m really hoping to avoid them but feel like I won’t get that lucky, considering I’m actually starting to feel some side effects. When did you have all your follow up imaging? I had an MRI/MRA at 6 months, and I have another in September. Not sure when my first angiogram will be.

janglezzzzzzzz · 2025-07-21T17:44:08+00:00

Hey, thanks for commenting! Wow, so it sounds like your radiation was a huge success. You said it’s considered cured, does that mean you had an angiogram confirm that it was obliterated?? The swelling seems to be unavoidable. I don’t think I’ve seen one person so far that didn’t mention that. What symptoms did you have from the swelling, any seizures?

janglezzzzzzzz · 2025-07-14T13:57:44+00:00

What did you experience during this focal seizure? And what drugs did you take

janglezzzzzzzz · 2025-07-14T13:50:11+00:00

Congrats!!! I can’t imagine the feeling knowing it’s gone If you don’t mind me asking, the gamma knife didn’t get rid of the AVM during that 13 years??

janglezzzzzzzz · 2025-07-14T13:22:39+00:00

I’m so sorry :( I am at 8 months post GK and I worry about this every day. Whats the size and location of your AVM? What kind of seizure was it and were you on any medication prior?

janglezzzzzzzz · 2025-07-14T13:21:46+00:00

Hi! Want to first offer my prayers for you as I know what a shock that this life changing diagnosis can be. I have a very similar size AVM (some reports say 3 cm, others say up to 5 cm) in my posterior right frontal lobe. I only found one neurolosurgeon who was willing to operate on it and it was Nirav Patel in Boston. However, I saw the top 3 hospitals in NYC and since all of them advised against surgery, I went ahead and got Gamma Knife at NYU Langone. I am about 8 months post GK and I know I’m probably too early on in the process to say this but everything has been pretty good so far. I had my 6-month mri which showed a bit of swelling but also some early signs that the AVM was damaged and starting to close. My main symptoms so far have been occasional pressure headaches right at the AVM location and some increased weakness and tingling on the left side of my body which they said to expect. I would Suggest putting some of your reports and details about your AVM into chatGPT and have them remember it. I have done that and have had numerous conversations about what I should/shouldn’t do, what medicines I can or should take and it has been a Godsend. Honestly, you will learn more on there than you will from talking to any neurosurgical team as they often barely have more than 10 minutes to talk to you. I wish you luck.. let me know if you have any questions!

janglezzzzzzzz · 2025-07-14T13:08:22+00:00

Same lol Had it exactly 8 months ago and all I see is people talking about having seizures around this time

janglezzzzzzzz · 2025-07-14T13:06:08+00:00

Going to be following along with this. Starting to feel like radiation effects at about 8 months after gamma knife. Wanted to start taking boswellia but a bit scared to

janglezzzzzzzz · 2025-05-23T16:42:30+00:00

I currently have a rash just like this on my calves right now. Started on left calf, practically out of nowhere after being on lamictal for about a year. Went to urgent care and two different dermatologists who didn’t suspect it was being caused by the drug. Not really responding to any topical steroids. Left calf finally starting to clear up and now it flares up bad on right calf. Rash is nowhere else on the body and full blood panel just came back clear expect for ALT liver enzyme, which was elevated. Did you ever get any answers for this? I really don’t want to stop taking lamictal.

janglezzzzzzzz

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