In July 2021 I had an embolisation that went a little sideways and I had a stroke during the treatment - they sorted the aneurysm but only approx 65% of my AVM (I almost fully recovered - just minor things like speed of movement in my left hand fingers are slow - and am even back playing semi-professional football). Due to placement of the AVM and having a stroke when I had an embolisation… they opted for my further treatment to be Gamma Knife Radiation.
I had Gamma Knife Radiation in May 2022, but ever since then, I have been experiencing some weird sensations. Here is my log:
18/5/22 = Treatment
25/5/22 = left leg intense pins & needles for a few minutes while light jogging
31/5/22 = left arm intense pins & needles for a few minutes while on stair machine
17/7/22 = left leg intense pins & needles for a few minutes while playing in football match
11/9/22 = left leg flushing feeling (like the angiogram dye-shooting feeling in face… but in my leg) for a few minutes while football training
13/11/22 = left leg flushing feeling (like the angiogram dye-shooting feeling in face… but in my leg) for a few minutes while driving
27/11/22 = entire left side of body intense pins & needles and flushing feeling for 5-10 minutes during warm up of football match
16/1/23 = left arm flushing feeling (like the angiogram dye-shooting feeling in face… but in my arm) lingered for 5+ hours while sitting in office at work
18/1/23 = entire left side of body intense pins & needles and flushing feeling for 5-10 minutes after football training
I wondered if anyone has experienced anything similar?
I have had a CT scan, MRI and EEG but nothing is showing.
They did tell me that some things may happen that they can’t explain i.e. miss-fires of the brain due to them prodding around my brain and possible edema in the brain where I had the embolisation… but all of these sensations happened right after Gamma Knife.
The last couple of weeks I have been experiencing another weird sensation which feels so real but I know it isn’t (blood trickling down from one of the sites of the frame I had during Gamma Knife) - this did actually happen… but obviously isn’t happening now, but it feels like it is sometimes?!
I feel like I am going crazy!
Truth is that I have had 2 treatments - The embolisation I had a stroke and woke up paralysed. The gamma knife frame fitting was pretty awful for me to say the least (I genuinely thought they had miss-calculated and were about to crush my skull like a watermelon… I froze in shock and they were shouting at me to breathe before I passed out! Then I had the bleeding from one of the sites issue).
Anyway, I think I am just reaching out to see if anyone has felt anything like I am describing?.. and let me know I am not crazy?
Hi Ashleigh, I’m not sure I can be a lot of help but I always have an opinion and some experience! I think it would be unlikely that the sensations that soon after gamma are related, we usual see some things showing up around 6 months. But not impossible! I had a couple dribblers from the gamma frame, it was the sound that git me as they had me numbed pretty good. It was sure nice when it came off.
Have you spoken with a neurologist? They may be able to associate what you’re experiencing to the location of your AVM, and if the treatment could be influencing. I haven’t experienced anything like you are describing in respect to the tingling, other than injuries. I bashed my back up once pretty good playing hockey and had some weird pins and needles coming and going, once the injury healed that went away. It did take quite a while to heal in that case, some of it being my impatience to keep playing! Sorry I couldn’t be more help.
I thought it was soon too - but it literally is a feeling I had never experienced before pre-gamma?
Yes I think maybe my numbing hadn’t come into affect before they started - I’ve unfortunately had many injuries through football so I am pretty used to pain, but this literally took my breath away! If I ever have to have gamma knife again, I am going to ask that they knock me out!
Yes I have spoken to them and they have sent me for many tests, but no finds so far. They also explained that unexplainable things may happen, but that is pretty hard to get my head around. When there isn’t a reason/answer it is difficult because no one knows the seriousness which is why I am just told to keep them updated. I was hoping someone on here may know what I am experiencing. I’m only 30, so the thought of dealing/managing this for as long as I live is daunting to say the least.
After I had the stroke and woke up with paralysis and had to learn to walk/talk etc all over again, everyone thought that was so tough and must have been hard mentally etc, but I didn’t find it too difficult because it was my only focus and I was seeing progression every day. I find right now the hardest - I look fine and back to normal which is great… but my treatment is still ongoing and these weird sensations are frustrating and sometimes a bit scary… every time I think I have found the pattern or cause, it comes on differently. Now I am getting the weird trickling sensation occasionally and I know that’s not real, I am questioning if the other sensations are actually physical - but it really does feel physical and I get pretty fatigued following them too.
The beauty of the brain! My neurosurgeon was awesome and when he said 90% chance of success, I knew that was as close to 100 as I was going to get, as there never seems to be anything for certain with the brain. Great you are keeping track of everything, you might find a pattern or trigger of some sort. My first go to on headaches is always hydration, back is the injuries. Like you said injuries are not something new! When I was playing a lot of hockey it felt weird when something didn’t hurt.
I hope something starts to add up! Take Care, John.
Good to hear from you again!
I think what you’re getting is called paraesthesia – distorted sensations. These can be an element of migraine “aura” or “prodromes” (= heralds of a migraine) and sometimes people get tingling etc as a sign that a migraine is coming on.
In the book Migraine by the late Oliver Sacks, he describes all sorts of things about migraine, of which paraesthesia is one, different types of aura is another and a third is “migraine-like” symptoms. What he says in the book is that migraine typically transgresses from one side of the body to the other. Any apparent migraine that doesn’t migrate from one side to the other is to be considered a bit rogue – that there is some underlying thing that is giving these migraine-like symptoms. (And that would be your AVM or the changes that the gamma knife is making).
So, only based on having read some of that book, I’d say a possibility is that you’re getting a bit of paraesthesia as an aura, derived from a migraine-like thing that is probably a bit of irritation from your gamma knife. I’d discuss the idea of paraesthesia with your neurologist next time you see them and maybe that the effect, while not a true “migraine” is “migraine-like”.
(Dr Sacks also wrote the book Awakenings and was represented in a film in 1990 as a character called Dr Sayer. That’s the man. He was a neurologist who settled in Brooklyn, NY and passed away several years ago.)
That you’re quite fatigued sounds like you might be getting a bunch of things from a migraine-like episode. There are too many things that migraine can involve for me to list: I’d have to go and find the book (and I may still have loaned it to a friend )
I agree with John that hydration is important and probably your only partial defence against what’s going on.
I had visual aura for several weeks after my embolisation and angiogram. In a similar way, there was no consistency in when they were provoked. Mine faded quickly but insofar as you’ve got gamma knife busy making changes to your blood flow for quite some time, I’m sure you’ll be having to cope with these for much longer than me.
Hope this might help.
Thanks Richard - all noted.
I am having an appointment soon to look into it all further so will definitely bring this up.
I had weird symptoms for a few months after gamma knife, mainly headaches including sharp pains and strange aching in my face, as well as generally feeling rough. I was very anxious about it and it lasted a few months but then gradually passed and I’ve had no issues since (touch wood!). I did not have any pins and needles. That sounds scary. I’m not a doctor but the fact that your AVM stroke resulted in temporary paralysis, and your symptoms are one sided (presumably the same side as your paralysis?) and seem to mainly appear during or after exercise may suggest there is some AVM involvement triggered by elevated blood flow. Obviously you have done the right thing telling your neuro team.
I hope the GK works well for you!