Numbing & Weakness

Symptoms & Treatment Gamma Knife Radiation
1

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

2

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

2 Likes
3

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!

1 Like
4

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.

2 Likes
5

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.

6

@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

7

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!

8

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.

9

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.

1 Like
10

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.

2 Likes
11

Hello Catmama

It is a neuro who does the nerve test and really any neuro can do this test. I have had a few times once before my stroke and then a few years ago when I was having increased pain in my feet. Neither are neuros that are part of my Super Team . They stick a small needle on your foot and maybe ankle and it measures how fast an electrical impulse moves through your nerve. During the test, your nerve is stimulated, usually with electrode patches attached to your skin. The speed is then calculated by measuring the distance between electrodes and the time it takes for electrical impulses to travel between electrodes.

One thing I learned a long time ago due my b12 defieciency was that we need it to coat our nerves and most drs are happy with a lower level. I have something called Ehlers Danlos which is a connective tissue genetic disorder and for some reason we dont retain b12 D etc and so mine got down to 100 and my drs like mine to be around 900. I was doing b12 shots for years and was wondering why I was never getting any better than read Dr Lynch who talked about different types of b12 and of course the common kind including the shots is synthetic and actually has some cynaid in it!

So I switched to his brand since I saw his was actually tested on Dr Oz and I signed up for https://www.consumerlab.com/ to double check which supplements had been tested and which had passed. and his was just pure b12 ( seeking health brand) type methylcobalamin and finally my numbers started to go up. I still need to take it but just not as much and laking in b12 also can cause brain fog.

I agree with Jessica if you can get an appointment with a neuro-opthalmologist which if you are close to Georgetown hopefully you have a good selection of drs. One of my best friends lives in VA and if you want me to have her ask her dr for a recommendation I can do so. I know she has been really happy with Georgetown with her dad and his alzheimer’s. Its definitely very important.

And you might need to first figure out your eye issues before fully diving into PT - I know sometimes for me in the beginning when I still had swelling I would get super naseau and even once threw up on my poor therapist.

Also the nerve test would be good for your pt person to know as well. My PT person found that taping me also really helped me too for my weak arm and even around my knee area. Putting a bit milk of magnesia on before tapping really saves the skin and even made the the tapping last longer I just bought my own bottle and put some in a smaller container for my pt to use it takes about 30 seconds to dry to a powder.

My Pt for my lower body as I have balance issues due to my stroke and weakness on my left side. My left leg always feels like a bad hamstring pull. I used weight lift and used to be able to squat 175lbs. I grew up with twin brothers and my dad jokes that I am his first born son. I played sports my entire life and was playing softball until I moved in with my husband which I was 38.

So I still strive to get back to that strong self or near that I accept that person I am today as I feel so greatful that I can walk and talk - Being paralyzed really sucks and not being able to talk etc.

My Pt was a lot of band work, balance work, pilates, that worst thing I hated and still hate is the foam roller for my IT bands. Lots of clam shells and bridges. I would have my husband or sister film me at PT so I could re watch to recall the exercises and to make sure I was doing them correctly. Some of the moves are like golf, tucking, squating , keeping your head in a certain position etc its a bit coo coo at first.

I would think back to what to I used to be able to do and at first I could only maybe do 3 reps but I did them everyday and I got stronger and more stable. I just have to work at it. You will see me in line standing on one foot doing my PT. For me its going to be a life long committment.

Swimming is great too. Ask your dr if there is a therapy pool around you. We have one but its really hard to get into cause there is such a wait to get into.

Keep us updated
Hugs
Angela

12

I used to look into service dogs awhile ago but for seizure alert. It’s great that you had such caring neuros and they didn’t brush your case aside. They really looked into it which I think is rare considering all the neurologists and doctors I’ve seen. Being in a big city must help a lot, I’ve always lived in small suburban areas which is bad when you need specific doctors for health issues.

I’ve seen a regular eye doctor that knows my case and kept up with me ever since my avm was discovered but they always said my eye sight is fine and there’s no change. Which I’m sure at the time was accurate, but now I know for sure it’s not because my neurologist noticed my left eye moves differently than my right. Now my mission to find a good ophthalmologist!

13

My neurologist never even suggested a nerve test, and he knows everything that’s going on with me. I’ll have to bring it up next time so he takes it more seriously.

Keeping up with deficiencies is tough. I know about B12 because my dad has to take the vitamins since he’s off (which I’ll look into the the one you recommended) but I also have epilepsy due to my avm and the medicine sucks the life out of you and all vitamins. Doctors don’t recommend much to help us with the brain fog, memory loss, weakness and just everything else that comes along with it. You’d think that by now they would be able to give you a list of vitamins to try out knowing the medicine for epilepsy are life debilitating.

Should I see an ophthalmologist or a regular eye doctor first? Georgetown is about an hour from me, but all good doctors are so I would have to drive that far to any neuro-phthalmologist I see anyways.

I’m sorry you went through so much, being so active and being able to do everything on your own is such a blessing until you get slapped in the face with health issues. I hope you’re able to get close to how you were before, cheering for you!! You’re so strong and I appreciate your advice on everything.

Thank you guys!! :slight_smile:

1 Like
14

Hello Catmama
Sometimes I think the drs esp neuros ( since I have four of them) think they mention stuff to us but actually dont. I was so surprised when I started to pick up my medical records what was actually in them and said to my husband did I miss something or did they say this is in the visit and each time the answer was no. So I learned to pick up my medical records every month or quarter depending how often I am going. These are more detailed then the immediate notes you get printed out when you leave a big hospital.

Most of my drs are at Stanford and since my stroke was so rare I see all the heads of each dept and then with my DAVF I quess my brain scans have even been seen by the top orthopethic and have had talks been given by the top radiologist. One of my gf just happened to run the MRI dept at Stanford and told me how famous my brain was.

I would see whomever you can get in first with regarding your eye but if you see a regular eye dr make sure that they have the tech equipment to take the photo of the back of your eye.

My background is finance and I learned drs are not good at math nor nutrition. My stroke dr who is the head of stroke at Stanford and I guess very well known didnt even know that warfin has a bad interaction with onion and garlic. I thought I was having another stroke ( mind you I am half Italian and half Spanish both which use a ton of garlic and onion) He told me to stop eating them…I said thats not going to happen- He said he never heard of it I had to tell him it was a reaction.

Also the way our records show up when we are in the hospital its just the last thing that shows up first. When my younger sister was at Stanford for flesh eating virus one dr kept trying to switch her of heparin blood thinner to a new one that did not have an anti anticoagulant and she has a bleeding disorder. So I could not understand how he kept missing this key issue with my little sister. I final asked one of the nice nurses after I told off that dr. She told me how bad the filing systems are and that is super scary and now I can understand why mistakes are made. So then I was basically at the hospital from 5:30 am to 11 pm with breaks from my mom.

I hope you can get in soon with one of the eye drs and contact your neuro and tell them you need a nerve test. Also get them to order some PT as so many people are retiring it might take time to find one that you like.

Please keep us updated
Hugs
Angela

He also just told me to limit my vit K intake to one cup of green veggies a day but then when I started to look into matters I realized that my cooking with fresh herbs was the real issue and I would rather continue that then eat the green veggies. He also didnt know that licorice has vit K in it either which I had been eating as a treat prior to my blood clot stroke.

I feel very lucky that I made it through it all and we are all here to support each other and share- This group was such a God send when I found out that I had my DAVF and I was freaking out. I did end up having another small stroke during my 1st angio/embolism but I had lost my ability to swear weirdly after my 1st stroke and working in trading as a woman sometimes you really need to swear and I was talking like a 5 year old when I was mad, like knuckle head and doo doo head…so people were like wth is wrong with Angela?

So after the second stroke it must of zapped something and I got it back thankfully.
I know my stroke dr thought my husband and I were crazy that we were so concerned with my loss of swearing.

I am sorry to hear that you also have epilepsy due to your avm. My old neighbor is a great epileptic neuro surgeon at UCSF and he took my first cats two sons. He also helped me figure out what was the condition with my special needs cat Kokothemiraclecat who was born with half a brain. I guess it can happen both in humans and animals where a virus attacks in the wombs and eats the brain.

You can see Koko on Instagram and we have a website up for him www.kokothemiraclecat.com He gets seizures and is on meds. But we also feed him more frequent meals which also seems to help.
We were told he would not live much past his 4th birthday but he will be 15 this May. He had a rough start with his first family who stepped on him at 2 months old and broke his jaw and wanted to put him down. We adopted him at 3.5 months and he started to have seizures about a year old and then we had an MRI done and the vet neuro said he never had seen it and would call us - but never did - So then I called my friend Bill. Koko does everything a normal cat does except purr he grunts when he is happy and he is blind in one eye so he is always close by so you have to be careful walking. But he has us well trained.
He is rules all the other cats even though he is 8 pounds and we have two other boy cats who are brothers who are 22lbs!

Sometimes it worth the drive to see the better drs. I am lucky I am about 25-30 minutes from Stanford. But one of my other specialists is about 2.5 hours of heavy traffic away and we end staying in a hotel when I have to see her for my TOS. It can take time to build your team .
I am lucky that I started off with the head of stroke cause he has made sure I got all great drs.

15

If you’re close enough in Virginia to DC/Baltimore area, Johns Hopkins probably would have all the specialists you need. Or you might be able to send your scans to specialists in any part of the US. I know Dr. John Henson, the neuro-radiation oncologist in Atlanta, will evaluate and treat patients long distance. He’s kind of a tame genius, he has board certification in about 5 areas which is really rare. He does research about radiation necrosis, and says if I need him about the weird cysts developing in my spine he’s happy to consult long distance. Some other doctors who do AVM research and also see patients are in neuroscience centers in Arizona and California. With a lot of docs doing more telemedicine (one of the few things this pandemic was good for) it’s a lot easier to consult with experts pretty much anywhere in the US as long as you have decent internet. AVMs are rare enough that I’ve had some bad experiences with neurologists who hadn’t treated very many AVMs and gave me really bad info, or blew me off because they didn’t recognize that my weird set of symptoms meant I was having a particular rare complication that was treatable if someone actually recognized it. Fortunately my family was able to advocate for me in some of the worst situations and find specialists who actually knew what they were doing.