Numbing & Weakness

Hi guys, I’m here again to seek some guidance and maybe similar experiences.

I had a 4x4 avm in my brain, right parietal. So I had gamma knife 1-2 years ago, had seizures in 2020. I have major brain swelling/edema on the right side of my brain as a result of GK.

Im currently having issues with my left side. My left eye vision is getting worse, like I can’t catch onto things quick, it’s just slow and blurry. My left leg feels numb and weak as if I’m dragging it everywhere and will fall. But I’m not! The sensation is just gone and I can’t feel it. Im honestly afraid that I’ll eventually lose feeling in my whole left side.

Now I know some may read this and be like oh hell nah you have some serious issues go see a doctor. BUT I really wanna know, is this normal?

I don’t have a go-to neurosurgeon. I moved and now my new neurosurgeon doesn’t want to deal with me, and my previous neurosurgeon can’t really do much since I moved to a different state. I’m not sure what to do I just wanna quit trying to seek answers at this point lol

Seems like you’re looking for a “yes” to this. Honestly, doesn’t fit “normal” in my mind. It sounds like you’ve got something going on – whether it is just impacted by increased pressure due to the oedema or something else, I’ve no idea but it doesn’t sound normal to me. :grimacing: Sorry.

If your AVM is 4cm by 4cm, that’s no small AVM, so probably needs rather more care and attention than someone like Chloe who has 2% of hers remaining to get zapped. So I assume you’ve had quite a big zap and therefore you’ve got more going on than most people.

I recognise this is exactly the answer you didn’t want but it’s what I think. Note that I’m not a doctor, so could be talking complete tosh.

With you all the way, though!

Richard

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Lol yes! I was looking for a “yes” answer :joy: I’m expecting my edema to lessen so I was confused that left side is acting up now, I guess I’m alone in this. Thanks for replying!

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Hi Catmama,

It’s been awhile since I posted about my severe radiation necrosis post gamma knife. My AVM was a level 4 in my left parietal lobe, motor cortex, and occipital lobe. When I was dealing with the radiation necrosis, I experienced similar issues to what you described on my right side, along with weird visual problems in my right field of vision. I’m really sorry you are having to go through this!

The good news is that all the swelling likely means that the gamma knife is probably doing it’s job and collapsing the AVM. The less good news is that sometimes there’s collateral damage to the nearby areas, and if the radiation necrosis involves those, you need to treat the necrosis before the healthy part of your brain that’s affected curls up and dies too.

My neurosurgeons were pretty uninterested in treating the necrosis other than giving me high doses of steroids, which also has a lot of other awful side effects. But they were also scalpel guys and radiation necrosis isn’t really scalpel guy problem.

My neuro-radiation oncologist, on the other hand, was fabulous and super responsive. My radiation necrosis had progressed to the point where steroids were no longer effective so she was able to get my medical insurance to pay for hyperbaric oxygen therapy which worked really well for me. It took a couple months before I started feeling better, but I was able to get back most of the sensation and muscle control on my right side, and the vision stuff recovered enough so I could drive again. Radiation necrosis snd brain swelling is more of a radiation oncology issue. I’d suggest following up with the neuro-radiation oncologist who did the gamma knife and seeing if they think you might be s candidate for HBOT. I know everyone is different, but it was an absolute lifesaver for me.

Best of luck with your journey. I’m sorry it’s so rough right now.

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Catmama - sorry I missed the part that you moved to a different state. You might email the doc who did the gamma knife for a referral to a neuro radiation oncologist near to you. I’m in Seattle - if that geographically ok for you I’m happy to share names of my team. If you are near Atlanta, Dr. John Henson is a top neuro oncologist who is a radiation necrosis research guy and sees patients. He and his wife (also a top neurologist) both treated me when they worked in Seattle. You might also see if anyone in this community recommends someone good close to you.

@Catmama Hello I am sorry to hear that you are having some new issues with left leg and your eye.
You should definitely get a new neuro who will take your concerns seriously and run the necessary scans to ensure that you dont have anything goiing on. Also you should see a good eye dr to make sure you dont have anything going on with optic nerve make sure they have high tech equipement where they can take a photo of your eye. When we have swelling in our brain or other things going on in our brain that puts pressure on the optic nerve which is sensitive it can do damage.

I am a cat mom too. My story started out with first with 5 blood clots in my brain and then I had a massive stroke and I went into a coma. Then about six months later my avm/davf started which is common after you have a cvst stroke.
So I was paralyzed but regained my movement etc but I still have weakness and issues with my left side. In fact last week I had a bad fall because of my left foot. So even though my scans show a perfect brain now MRIs dont show everything and I still have to do constant PT to work on my left side.
Dont be afraid to adovocate for yourself. Especially if you have moved to a new area maybe go on your local nextdoor and ask for a recommendation. If you are near Georgetown they are supposed to have some good ones.
There are also drugs that can help with swelling on the brain. You also might have nerve damage that could be impacting your foot and left side which a nerve test can help assess. I have this as well.
please let us know how you are doing.
Angela

The swelling has definitely helped remove my avm although it still shows in MRI’s. My new neurosurgeon said that’s just what happens? But he said in the angio gram he performed, shows no avm is there. I’m just going to take his word for it.

I had no clue we could see neuro-radiation oncologists! The guy that performed my gamma knife quit after he did mine… lol pretty weird to me. As if he didn’t do a good job on my GK and had to abort. Why wouldn’t my neurosurgeon or neurologist recommend seeing one? Probs cause no one cares.

HBOT sounds a bit scary, I’ve seen some people having a seizure increase to it. But it’ll definitely be something to consider.

Thank you for filling me in on new things to try! I wouldn’t have known about these if it weren’t for you!

I live in Virginia which is quite far from both of those. I go to Inova which seems to be the best hospital in the state (I have yet to see that for myself) so hopefully there’s a good doctor here that I can find.

Wow that’s quite the story, you’ve come a long way! I’m taking notes for things to do, the eye doctor stuff especially cause I didn’t know how much swelling effects the optic nerve. I was considering to do PT as well but that’s one thing that I’ve been putting off to the side even though I know it’ll be great for me. Right now going up and down stairs is my biggest struggle cause my left leg feels as though it gave up.

Who would perform a nerve test to see if there’s any damage? I want to get that done as well.

I also worked with a neuro-ophthalmologist… another very specific specialty that specializes in visual issues that are brain related rather than specifically diseases of the eye. They have to do fellowships in both neurology and ophthalmology so it’s a double dose of training. I live in a big city, but there are only about 4 neuro-ophthalmologists in my area. Very different perspectives from the other docs on my neuro team. For example- The two neuro-ophthalmologists I saw were the only docs on my entire team who insisted that the service dog who helps me walk and balance, and also helped me compensate for the weird spots in my right field of vision needed to be on my bad side, like a guide dog, rather than in my good side like a crutch or walker. They also fought it out with the physical and occupational therapists. I’d been training my dog to help me on my bad side because it worked a lot better and it was great to have experts on my team validate that. Also the only docs on my team with any experience with service dogs, although guide dogs for the blind are definitely different from mobility and medical alert dogs, which are who I roll with.