Hi all, I’m new to this group.
Im 35 from the UK & earlier this year I was diagnosed with an AVM in my knee after years of being misdiagnosed. Whilst i’m still on the 17 week wait list to be seen about this, I discovered a lump on the top of my neck/ base of skull which has a strong pulse, I was sent straight for a CT scan which has confirmed a large AVM in my occipital area.
This has been very overwhelming, they seems to be so much to learn about AVM.
My symptoms are: eyesight has deteriorated alot over the last couple of years, I suffer from daily headaches, I can hear my pulse in my left ear & dizzy spells.
The next stage for me is to have an Angiogram in 2 weeks time which I will be awake for and just a day case in hospital.
Could anyone give me some advice on this, I am unsure if I will feel ok after it and would i be able to work the following day? I am a Bridal Makeup Artist so i’m stood on my feet for 6/8 hour periods without a break, and carry around a heavy kit.
Any advice would be appreciated
Thanks
Welcome to AVM survivors! It’s great you found your way here!
I can say that I almost certainly had a different AVM from you (mine was physically small but diverting a serious amount of blood) but it was in the same place. My first diagnosis was in August 2016, MRI in the September and referral to neurosurgery by November 2016. Since I’m not very good with needles, my doc agreed to do the angiogram immediately prior to an embolization, which was eventually scheduled for April 2017. I’ve had two subsequent angiograms and got on fine with them.
In general, the contrast material used to illuminate your vasculature on the x-ray table makes you feel a bit imperfect – it varies from person to person – but can be almost nothing, to a bit of a hangover headache to being less well if you don’t get on with the contrast material at all. Some people are allergic to it and it becomes more difficult. So difficult to say accurately but with luck there’s no good reason why you wouldn’t be at work the following day.
Oh, and yes, I was dizzy and had the pulsatile tinnitus. I was lucky that it all got fixed in one sitting but it did take a long time to feel back to “normal”.
If you’ve got questions about any of it, feel free to ask.
What I can’t remember (because it was so many years ago) is whether driving was banned for some time after the angiogram. You may need to stop driving if you’re feeling dizzy anyway. It is certainly something to discuss with your doctor and you may well need to advise DVLA of your AVM.
When I had my first two angiograms, I wasn’t driving anyway because of the dizziness. What I can’t remember is whether you need to stop driving for a few days if they go in at your groin, in order for it to all heal nicely.
Hopefully someone who has had an angiogram more recently will say.
Thanks Richard, sorry to hear about your case. Are you fully recovered from the AVM now?
Ive been referred to Neuroradiology but ive not had an appointment to meet any of the consultants yet, i’m getting angiogram first. But I have seen on notes to my GP my avm goes from the base of my neck to my scalp and the fact its ‘large’ is frightening. So i feel pretty much in the dark with any information, or what i should/ shouldnt do but this group has really helped alot.
That doesn’t sound too bad for the angiogram, my job isn’t strenuous so I should be ok
The main advice is not to do anything to increase your blood pressure: no coffee / caffeine, chocolate, alcohol, smoking or straining of any kind. I look upon this as “self help” stuff: basically just avoid giving it any special reason to go pop.
That it is large indicates that it is more difficult to treat successfully / without any side effects but if you already know you’re being referred to neuroradiology, then it may be that your favoured treatment is by that route, partially by that route or simply that they’re drawing radiology in for an assessment.
Mine was pumping blood into my right transverse sinus but with sufficient force that it was disrupting flow past both ears and I had a patch on the outside of my skull on that side where the veins on the outside inflated and deflated once a second with the pulse. It’s a worrying thing to have happen but we know lots of people who’ve gone through these things and come out successfully on the other side, so it’s very doable. Much that I think we have to do is to rationalise the strange and unwelcome turn in the road that life has taken and get ourselves ready for a slightly different course for a while.
That sounds awful, but pleased to hear you are all recovered now!
I will have to be careful regarding raising blood pressure, i don’t think the stress of dealing with this will he helping & every treatment option i look at seems to come with so much risk involved, such a daunting time but im trying not to think about it too much until i have my results.
But defo gives me hope seeing cases like yourself able to go back to living a normal life afterwards.
The other thing that’s interesting for you is multiple AVMs. That’s unusual. In among the rare conditions, you’re a bit more rare, so I would ask about genetic testing for something called HHT or any other genetic markers. Probably don’t look it up unless they tell you it’s relevant but get it crossed off the list Most AVMs are not due to any genetic trait.
Yes it has been playing on my mind, could i have more?
As i have only discovered the two I have due to finding a mass in both areas.
I will write this down on my list of questions for the consultant.
Thanks again for your support & this brilliant group, its so comforting to speak to people who have been through it or going through it and knowing you arnt alone.
It seems unusual to me to have two: most people here have just one. Of those who have more than one, the numbers vary, as soon as you’re into “more than one” it’s worth looking more widely or checking off the genetics. I say this based not on any medical training but based on my impressions of hanging round here way too much!
Thats good to know, considering the amount of cases you will of came across on here.
Ive seen a few cases of people having more than 1 avm in the same area (brain, lungs etc) but not completely separate locations.
Im been referred to a different hospital for the one in my knee, guessing its not as serious considering the long waitlist to be seen. My doctor did mention it may be best to leave it alone, but i am symptomatic -
I have pain when touching it, i often get quick zaps of sharp pain, it can seize up then I cant fully bend my knee, its also growing in size although very very slowly.
I was misdiagnosed for bursitis and sent to physio therapy on and off for years.
@Stephanie20 welcome to the family & sorry to hear about your recent diagnosis.
I’ve had so many angiograms & all have been under light sedation to keep me alert & awake, however not completely out.
I was so worried about them but once they drug me up I felt so much better & relaxed… it didn’t hurt but I couldn’t drive for 24hrs later & didn’t work the next day also… the key is to rest.
I am pleased your angiogram’s went well. I would love something to help me relax a little, my letter only mentioned I will be numbed so it will be painless process but the thought of what they are doing makes me feel a little uneasy.
I am having good days (where I try to ignore whats going on) and bad days which are filled with worry and wondering what my future may be like. I dont know how everyone copes living like this? but i am really trying to stay positive and not let this consume my every thought but its changed everything.
Im hoping once i get angiogram results it may make me feel abit better instead of overthinking everything.
I’ve had a couple of angiograms since my brain haemorrhage due to an AVM in my brain stem way back in 2012. In my experiences an angiogram is painless but an ‘odd’ feeling. With my angiograms they went through my groin with a small tube/catheter and some how up to my brain, then they put/inject a fluid that gave off a warm sensation in my head (very weird sensation). The team warned me that I may feel like I’ve urinated, however it’s just the sensation (very very weird sensation)
I also had radio surgery to rid me of my AVM. I was fitted with a metal frame to my head ( Not a nice experience ) and 6 years later I was given the all clear from the AVM… Best news I have ever had.
Yes, depending on which artery they are injecting the contrast material into, it gives you different effects – hot flush, burning in the tongue, stars in the eyes, nausea, dizziness, etc but the doctor should usually tell you what to expect for the area that they are introducing the contrast and it lasts for maybe ten seconds each time.
Thanks for taking the time to send over your advice
this doesn’t sound too bad. When i had my first CT scan with contrast I also got the warm feeling and metallic taste in mouth.
Hi Stephanie i found out about my avm in a simular way i live in the uk to i had an angiogram which to be honest itnt the most pleasent experience and for couple of days after i had some migraines and some brusing on my leg where it had gone in so took me a few days to feel ok after having my results in salford royal my consultant gave me all the options watch and wait, gk or craniotomy it took me a while to make a descision but in the end i opted for craniotomy im so happy i went a head with treatment as my surgeon confirmed that when he got in there my avm was very angry and i definitely would of had a bleed, im now 5 weeks in to my recovery and am starting to feel better please keep us updated and if you need support il be happy to help with any questions or worries. Good luck in your journey x
I have had 10+ angiograms plus three embolizations. Caution on doing lifting even the following day. You need to take it easy and allow your body to heal especially 24 hours after the procedure. Itook it easy for about a week with no heavy lifting and strenuous exercise. Best wishes to you and postive outcomes for you.
I had two angiograms last year for a small AVM (that had grown from a larger one I had clipped, but left in place as a child in the 70’s). I also had another under anaesthetic after my surgery 6 weeks ago.
For the ones I was awake for, they put a catheter in at the top of the leg (right side of groin), that can sting a bit like an injection (I found that on the first angiogram it stung when they put it in, and on the second it was a bit painful when they took it out - so I guess some people might feel nothing at all - either way it’s ok). You feel nothing as they feed the tube up to your head (amazing, I was absolutely trying to notice something) and then just have to lie perfectly still while the dye and x-rays take place. The effect of the dye is not unpleasant at all, the warmth felt like someone had just moved a hairdryer around the back of my head, and the visual stars/fireworks were brief, but also kind of cool.
They will advise you not to do anything too strenuous for a little while, just to ensure the point at which the catheter was inserted into your artery heals ok.
In summary, try not to worry about the angiogram, and good luck with any subsequent treatment.
Thank you for sharing Lisajane. Sorry to hear about your AVM, I cant imagine how worried you must of been going through such major surgery, pleased to hear your on the road to recovery, hope you are doing well.
Have you had any side effects from the surgery?
I have decided take a couple of days off work after the Angiogram just to be on the safe side. Looking forward to getting some answers afterwards and finding out what my options will be
Thank you Jbo, hope you are well. I have decided to take some time off afterwards to be safe as my job does require me to carry heavy loads. Thanks for the advice
& every treatment option i look at seems to come with so much risk involved, such a daunting time but im trying not to think about it too much until i have my results.
Most AVMs are not due to any genetic trait.