New to the Site, Just Saying Hello

Welcome & Help New Member Introductions
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Hello, I’m new here and figured I’d introduce myself. My name’s Erin, I’m 28 years old and living in the States.

In early 2022, after experiencing worsening migraines with right-sided vision loss (which I have had since I was about 8-9 years old), I had a CT scan done that revealed a grade 3 AVM in my left parietal lobe. I’m fortunate to have not had any bleeds or ruptures, but of course now comes treatment options.

Doctors didn’t want to operate due to high risks of visual deficits, so I went with gamma knife radiation. Quite the experience! That was last August. Follow up scans since then have revealed healing has been going quickly, which is good.

Fast forward to this summer, and I’ve now been dealing with the side effects of radiation. I ended up in the ER at the end of May with some vision loss that wouldn’t go away, as well as a very intense headache and disorientation. Scans showed no bleeds, but definite swelling that doctors believe is causing the vision loss. I was prescribed a 6 week round of decadron to bring down the swelling.

Unfortunately, follow up scans revealed that the swelling had actually gotten worse. I was prescribed trental and vitamin E, but after a couple of weeks, ended up back in the hospital with more significant vision loss, a very intense headache, confusion, nausea, and vomiting. Scans again showed no bleeds (thankful for that), however did show signs of radiation necrosis. I’m currently back on another round of decadron, and have discussed next options like Avastin with my doctor if it comes to that.

All of that to say, it’s been an adventure, and has been particularly overwhelming recently. Lots to take in, while also dealing with the effects of the swelling and of the steroids. Just wanted to say hello, and thanks to everyone who has shared their stories here so far.

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Welcome Erin, hopefully we are able to do what we can to help you. You are having a tough time. I am a gamma knife recipient, and we have many here. A number of folks from our group have faced experienced post radiation challenges. I was fortunate to have minor effects of gamma, less than the bleed, so can’t pass along personal experience but hopefully can give you some areas to look.

If you click on the magnifying glass on the top right corner and do a search of radiation necrosis, gamma knife swelling or related areas you will get the listing of possible discussions that may be of value. One forum member I recall is amcoffey, who experienced a lot of challenges following cyber knife. She complemented the pharmaceutical assistance with hyperbaric chamber with some success. If you search her, who will see her posts. That is one member I can think of that may be able to help. There will hopefully be several that can add along their experience.

I have to head off to work but will check back in later to day and see if I can pas along any other information. Take Care, John.

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Welcome to the family & sorry to hear about your experiences… please keep us posted on your journey as we wish you the best in achieving good health… God bless!

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Hi Erin!

I can recognise myself in your story.
I also had migraines and visual problems since I was very young…
I have been diagnosed with an AVM on the right occipital lobe a few weeks ago and my file is now waiting to be reviewed for Gamma Knife surgery.
You come across as a very optimistic person! At the moment all I want to do is hide, but I do know something has to be done…

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Hi Sarah,
I’m sorry to hear that you’re now part of our club–it’s a lot to take in! There are certainly days for me that are overwhelming, but it helps knowing that we’re not alone in all of this and taking it one step at a time. I hope all goes well as your file is reviewed and for any future treatment. You’ve got this!

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Hi Erin,
it seems we are near each other in terms of recovery status. I also received gamma knife for my grade 4. I started feeling relatively ill and the nurse at the high school I teach at insisted I check myself into an ER to be looked at. Sadly, they found swelling with a brief noncontrast CT scan. I was discharged after my regular neurosurgeon at a different hospital requested me to see her. I’ve been placed on dexamethasone for the next two weeks and my keppra was increased. I’m praying I start feeling normal once again as I’ve been seriously struggling with my situation before my change in feeling. Best of luck to you on your path Erin!

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Hi Kev,
I hope the change in meds has been working for you and giving you some relief! The steroids can really be a beast but can also really help. Best of luck to you too!

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Thank you, Erin.
As of now, it seems the steroids have mostly done their job. Swelling is significantly reduced. That said, I guess its necrosis. It has been a difficult thing to read. That said, I am on them a little longer for a continued slow weening off. I hope I will be back to normal after them! I look forward to having normal food again at some point (maybe)! Although, I will say, it was kinda nice that I dropped nearly 30 pounds in the few weeks I’ve been going through all of this. Though I do not feel like going shopping for new clothes. Thank you for the well wishes!
Kev

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