I just wanted to say you are all my hero’s thank you for your courage !!
I haven’t seen a Neurosurgeon yet. He said he thinks it can wait. But I have a lot of symptoms. And I have yet to speak w him
This is really hard stuff. Maybe you can help me please. I have a question or two. I am seeing things out of the corner. Like dark shapes. It is scaring me.
Do any of you feel these symptoms before your surgery or is this post surgery problems?
Also misinterpreting what others are saying and my hearing is getting worse very quickly.
Another. My neck is extremely sore and jaw. Temples. I believe is related.
Please tell me if this is what any of you have felt before you had treatment
Another symptom that comes out of nowhere. I have a pounding that goes through my head like a heartbeat. Like as if I have been flipped upside down All of a sudden and makes me feel dizzy for a second or two…while the pumping through my eyes and head happens.
Is this Avm?
Also have tinnitus that feels like pressure, neck pain and pressure. Ringing happens 30 seconds
My Short term memory Is shot. Can’t remember many things and husband is like “I told you that yesterday or like this morning” I used to pride myself on how well I listen to others because I care…where did that go?
Head is pounding ugh! Hope you all are having a good day. I’m so glad this site is here or else I would feel more lost than what I am right now
Hi Jaylah. I see you’re from the lower Mainland so I’m almost a neighbour. Even tho I’m from Vancouver Island I was treated by Dr. Haw and the neurological team at Vancouver General. He saved my life. I suffered progressively worsening symptoms for 5 years before my AVM was diagnosed after it bled. Pulsatile tinnitus was the worst symptom leading up to the bleed. Relentless, deafening, and maddening. Headaches, double vision, memory loss…all symptoms before treatment. I had a coil embolization then 2 years later a stent to improve blood flow. I still suffer from headaches and lingering effects like stilted gait, and minor short term memory problems. Realistically, I don’t think my problems are over but I try to carry on as if they are. Make a list of all your concerns to discuss at your appointment, it helps. It’s really hard to remember everything on the day. Regards and best wishes.
Before I start I want to say I’m in Australia, so the systems may work a little different, but here’s a bit of my journey:
I’d been having ‘odd’ symptoms for years, no one had any great answers. In fact it was all put back on me like it was an act or as a child I was attention seeking. So I learnt to ignore these ‘odd’ happenings. I gave up telling anybody.
Fast forward a few years and I’m driving down the road and I saw the brightest flash ever in the corner of my eye. I pulled over and within 5 minutes my central vision was black, I could only see with my peripheral vision, like a ring around the outside of my normal view. I went to the dr and he gave me ‘that’ look, the look of ‘This fella’s crazy’, I wasn’t having any of it, I’d had those judgements before, It wasn’t happening again. I wasn’t crazy, this was real AND getting worse. I convinced him to send me for a CT scan and sure enough, there it was.
He gave me a referral to see a neurologist which was going to take 2 months, who then to make a referral to the surgeon… …eventually. I had had wrong diagnosis/misdiagnosis for WAY too long, been told it was nothing and not to worry about it. I have this thing growing in my head, my symptoms are getting worse and it’s nothing to worry about???
My wife (My support person) took me to her dr. Like JennyS states ‘Make a list of all your concerns’, trying to think of everything whilst in a dr’s rooms is near on impossible. I would recommend taking someone, a support person, who you trust along to the appointment. It can all be VERY overwhelming. It was that my wife knew some of my symptoms that she could add to my list at the appointment because it was all fairly overwhelming at the time. When the dr noted the list it was a bit shocking and he made the neuro appointment himself, expressing the urgency.
My point here is don’t let them minimise your concern. Every time you have a symptom write it down and tell your dr. HINT: In medical terms our (The patients) reports can be seen as hearsay. But a Dr’s records are official documents. Have your dr record EVERY incident. Also Dr’s talking to surgeons has more weight than a patient talking to the same surgeons. Some dr’s and surgeons act as if they are ‘Lord’s of their Domains’. They are not. They are human just like you and me and just as fellable. You know yourself better than anyone and if something’s not right and you know it, you have every right to get a 2nd, 3rd, 4th… opinion.
Best of luck with it all
Merl from the Moderator Support Team
Thank you Merl. From reading your story
I’m Feel it is right to ask for a second opinion. I’m being put on the back burner. Thank for your time in answering to me
Thank you Jenny
You have EVERY right to be seeking a 2nd opinion, in fact I’d recommend it.
My ‘neuro journey’ has been l. o. n. g. and frustrating. I have had more diagnosis than I can count on my fingers (and toes), many of them false and have required 6 neuro surgeries. None of it has been what you’d call ‘fun’.
Being ‘put on the back burner’ is not unusual unfortunately. Some dr’s have a ‘wait, watch and monitor’ policy, because, let’s face it, neurosurgery is the last thing you want if it’s not medically necessary. Some people are fortunate enough to have a small AVM and have minimal symptoms, so surgery could cause more harm than good. BUT you are symptomatic, it is concerning to you and it is having an impact on you. I would strongly recommend a 2nd opinion as a priority.
Merl from the Moderator Support Team
Hi Jaaylah. Sorry to hear about all the troubles you are having. The shapes in your eyes may well be AVM related. AVM seems to mess with your head like this. My hearing and sight is getting worse too but thankfully noy that quickly. I also have some issues with misunderstanding people and finding some instructions difficult to follow. Not sure if your neck pain is related or not but your pounding may be a bbruit…i have one of these and it drives me mad at times. But it’s basically the sound of blood flowing through an AVM and very common.
So sorry to hear you’re experiencing these symptoms. I know it’s scary, especially when you don’t know what to expect.
I have visual disturbances, and the first one I had was seeing “fighting robots like Transformers lol” but that was just prior to the hemorrhage. I still have visual disturbances (not the Transformer kind but not being able to see out of the corner or most of the eye), but I haven’t had any treatment. I have extremely sensitive hearing as well as tinnitus. I get the overwhelming sense of the smell of cigarette smoke too as well as hearing the “ocean” - with respect to the hearing I’ve pretty much learned to ignore, but I have the symptoms you speak of and like I said, I haven’t had any treatment as yet. I’m suppose to, especially of recent where we’ve learned pressure has built up in the brain, but the embolization process had to be postponed given COVID-19.
Hope this helps and sincerely hope you start to feel better.
Forgot to mention, the neck pain is constant and I find that if I relieve pressure there, it helps with the headaches sometimes to some extent. Same with jaw - I have TMJ but not sure if that’s related.
the only thing i had that i think might have been a sign was my ocular migrains. when i told my neurosergeon about them thats what made him even think about me having an avm. so when i have one coming on its always my left eye, your supposed to see halo’s around thing with the classic migrain but i dont get that. its jist the extreme pain. i would describe the pain as my eye being scooped out with a hot spoon
Do not wait to receive a 2nd opinion.
As you’ll read a lot on this forum, knowing things sooner than later can greatly help with giving you more time to pursue more treatment options.
The pulse/pounding you’re describing could be a tell tale sign of AVM. Some MDs call this a bruit. It’s an audible pressure of abnormal blood flow within your artery and vein structures. No scares intended.
In short, pursue the right MDs ASAP.
Ok. I will take your advice.
I’m going to call my doctor today.
I could barely stand the head pain last night That also set off major pain shooting across and down my insides and then down my left leg. Happened many times. Leaving me in bad state. I wear ice packs every night, they help a bit.
I took clonidine at 10:00 pm (another bewitching hour it seems …I have about two or three climb the walls for a bit during the day)
and it actually helped. When I mentioned that clonidine helped lower intracranial pressure pain. My family doctor said she doesn’t recommend that and it shouldn’t really be helping. It sure works for me when it’s critical lvl I can’t take this anymore
Sometimes I feel like we are teaching them for goodness sakes. Oh…I had better watch my language. Sorry …Language
Dick, you are right. I need help RFN and I will take your suggestions.
God bless and all that jazz
Sorry to be late to the conversation but I’m with the other guys. It does sound like you are noticeably symptomatic and I would likewise encourage you to get the docs to take it seriously.
Are you still waiting on an angiogram? I’d want to get that done ASAP.
It sounds like we’ve got you motivated right. Oh, and I would say you will be educating your primary doctor / general practitioner. The neuros should know what they’re looking at but a GP will perhaps only meet one person with an AVM ever. Our practice has you meet a random GP each time you visit and I soon discovered which ones hadn’t a clue, which ones were motivated to learn something to try to help me and which ones were just too busy to think outside the box. I also met a junior doctor who asked if she might listen to my bruit (you could hear mine through a stethoscope on the back of my head) as she might never hear another one in her career. Apparently I was “absolutely textbook” with my bruit!
Everything the guys say above is good. The ball is in your court.
Very best wishes,
Hello @Jaylah as others have said your symptoms are avm but I will say that except for the heart beat sound. I had all your symptoms prior to having my AVM, I had a rare stroke called Cerebral Venous Sinus Thrombosis or CVST for short , I had 5 blood clots throughout my brain - I do get bad migraines and thought maybe my migraines were changing…but never even told anyone the pain I was having and also thought my neck pain was due to my torn Rt cuff.
About 3 months after my stroke I felt weird and more pain towards my left occipital lobe, then since feels like someone is pulling my hair and it itches. Also started to hear the whooshing sound . So I see the head of Stanford stroke due to my CVST stroke and he said you can’t have another rare brain thing.
I said oh you are just getting to know me .
I found this site and found out that Dr Michael Marks was the dr at Stanford who founded and ran the neuro radiology Dept …so when I went back in after my MRA both of the two neuros were sitting in the room I knew I had it.
Now when most people complain about head pain they just run a reg mri , you need an MRA with spin labeling to see AVMs and yet another type called MRV to see blood clots!
You can also have a stroke from migraines which I never knew until I was at Stanford.
My Stroke dr referred me to the pain clinic and she explained the longer we are in pain that then our brain thinks it’s normal and that’s how we will feel- I got centralized pain from my CVST stroke and had another stroke during my embolism.
Definitely push to be seen and only by a neuro who is familiar with AVMs .
And make sure they have done both MRV and MRA types of MRIs.
We are here for you , it’s scary and we understand.
I am so sorry to hear about your symptoms, they seem horrible yet very relatable. Just a question where exactly is your AVM located? My AVM is located in the Occipital lobe (responsible for vision) and having said that the doctors usually use this for the reason why I experience very bad visual symptoms. Also after Gamma knife, these did worsen with 1- permanent daily small visual deficit and 2- vision loss that comes and goes with a ‘migraine’ (this also happens daily)
With my experience, I really wish I did more research before undertaking treatment and seeking for a 2nd, 3rd, and even 4th opinions, because research is NECESSARY, especially if we’re talking about our life and wellbeing.
Please do make sure you seek out more opinions and read more of the articles here on elsewhere to maybe figure out what are causing you these symptoms. We are our best helpers, so make sure you do your part alongside your doctors! Wish you all the best for your surgery when it happens! and I hope these symptoms lighten and ease with time. May you find the quality in your life that everyone deserves to find.
Lots of best wishes,
I am sorry that you are not feeling well and your Doctors are not hearing you, I would definitely get a second opinion, I had my AVM burst with left side paralysis 30 years ago, prior to the burst I had to go to the ER a month before the burst they gave me a muscle relaxer and sent me home if i had pushed for a CT or MRI they would’ve found the AVM and possibly I would not have had the left side paralysis and the complications that go along with that. Good luck ! Be your own advocate.
Sorry it’s taken me so long to reply. I have been experiencing ocular (well my eyelid has seizures ) has an MRI. Haven’t seen a neurosurgeon yet because of covid.need angiogram done apparently.
Below is MRI REPORT APRIL 1,2020 (April friggen fools day…not funny)
The blooming artifact in the cortex of the
para sagittal right superior frontal gyrus was seen again. (2nd MRI, 1st without contrast) this MRI IS WITH CONTRACT.
This correlates with a small abnormal. Appearing artery. The concern is for a vascular malformation which involves an arterial component in particular and AVM. The blooming artifact would be consistent with small volume associated prior to hemorrhage. A fistula or venous malformation with associated hemorrhage could also produce these appearances but it’s less likely. Neurosurgery referral and the catheter directed angiogram is recommended.
I Have called the surgeons office and talked to the receptionist about my symptoms worsening. She said she would see what she can do. My pain doc. Is not patient reporting , so I called my family doc, who has been getting all the details and has been listening.
So I called her and gave her the update and the severity of the decline.
Last 3 nights, I’m not seeing shapes anymore, but the symptom that is really scaring me. I started experiencing sharp zaps down my left arm and left leg.
Weird thing is. The pain I felt made some areas on my skin go rigid? Like the skin was swollen and rigid. On my left leg and my left inside arm. Also felt my eye and face felt a bit numb and tingly.
Im going to have my husband look at me tonight to see if I have any paralysis… lips and eyes when I talk. Cause that has happened two nights in a row. But I wake in morning without paralysis …? Wtf?
I don’t know much medically, so I’m just going to say what I think I would do and what I’d be thinking about. The rigidness / muscle spasms to me are like a seizure. Seizures do cause that sort of thing (I think) so I’d definitely be telling the doc about them. IF YOU GET ANYTHING THAT SCARES YOU GO TO THE ER. If you get stuff going on that is about as scary as you’re describing, go to the ER while you’re having the symptoms, as they might then take you seriously. There are definitely other examples of folk here having difficulty getting medics to take them seriously, so it is definitely an issue we have to fight occasionally. I think the ER guys know what to worry about when they see these symptoms. If you go because you’re worried that something is going on that’s dangerous, my experience is that if you’ve got something that seems serious and current, they’re happy to check you out. They are less generous if you’re just being impatient with your primary. I had a decent lump form in my groin after my catheter angiogram and ER admissions were perfectly happy that I had gone in to get checked out.
If you get any significant or sustained symptoms, just go. I have lived on the same knife edge that you’re on, as have a bunch of others here. It’s not a nice place to be but if you’re worried, it’s better to be near the ER if it is going to do something significant.
You do sound like you’re having something going on from your VM / AVM so you’re not wasting people’s time (in my view).
Very best wishes,
Before I was diagnosed, I felt a weird sensation in my Lower right legs and my right hands. In my hand, it felt similar to a bandaid in between my Fingers. I wasn’t numb, just a weird feeling is the best I can compare it to.
I also had vertigo when I dropped my head in a certain position l. Downward dog position was/is nearly impossible for me.
What took me to the ER after a week of feeling “wavy” was my right side of my my face was drooping. Thought I was having a stroke.
CT confirmed the mass. MRI confirmed the AVM.
Hope this helps!!
Hi, yes it helps. Quite a bit. My fam. Doc said that go to emerg just l have been told to.
I called my doctor today. Thank you. So I did. Reasons: face droop. Eyelid droop. Sharp nerve pain down left side limbs. Even have taut from muscles and some redness from that.
I also forgot to mention I get wicked chest pains. Everybody says it’s just anxiety. What evs
CT was done. Results showed same Avm still present. Now I wait to see if this will speed up neuro consult.
Then I am suppose to have a referral to a neuro clinic. Next week.
Thank you for the advice and for sharing❣️