I had my angiogram last week and it revealed not one but two separate AVMs - one is roughly in the centre of my forehead and the other is offset on the crown of my head. I’m still not up to speed with the right names of the blood vessels involved but the interventional radiologist said that he believed the course of treatment would be a craniotomy although my surgeon would clarify this in due course. As far as I understand, the radiologist said that blood vessels going into my brain were not involved. The angiogram itself was horrifying - the local anaesthetic into my groin barely did anything and I felt as if a screwdriver was being pushed into me. The dye made me feel as if my mouth was burning. The hospital know that I already have a complex PTSD diagnosis and the radiology team worked hard to keep the whole process and manageable as possible for me. Now I am waiting to be contacted for the surgical plan and I am in tears with fear about the effects that post surgery medication if required, will have on me, on top of possible things going wrong with taking out the AVMs. If you mention chemical sensitivity, I honestly don’t think anyone takes it seriously but it is a real issue with me - I had breathing difficulties with anti-nausea medication in a previous abdominal surgery and woke up thrashing and gasping in recovery after that operation was completed. How can I tell my surgeon that the benefit of giving me dexamethasone/anti-fitting medication would probably do me more harm than good as I react so badly with side effects? I am very very lonely with all of this at the moment. I can’t offload to my family as they would be horrified at how severe my panic attacks are, and I can’t bear feeling more guilty for causing more gloom and worry than I am at the moment. Seeing my mother’s face almost break with shock was enough and that was when I had schooled myself to present this to her in a strong light. Please someone tell me that you’re with me.
Firstly, Welcome to Ben’s Friends.
I can assure you, you are not the only one to have a reaction to the dye. I was assured that ‘No, no. There will be no reaction…’ but OHH BOY, there certainly was. So, I came home and did a bit of an investigation and it turns out that a reaction to the dye is not unheard of. For some people it can be minimal but for others it can be rather severe, admittedly it did settle down by the following day, but at the time it was rather scary.
Another thing I’ll assure you of is your fear, it’s normal. Let’s face it, we’re talking brain surgery here and the whole idea of it scared the bejeezus out of me. In my view 'That’s my brain, that’s what makes me ‘Me’ and you want to do WHAT???.." I’ve had the ‘joy’ of enduring a few neurosurgeries and it never gets any easier.
You ask “How can I tell my surgeon that the benefit of giving me dexamethasone/anti-fitting medication would probably do me more harm than good as I react so badly with side effects?” Honestly, you straight up tell them so. They need to know and you need to tell them. They may minimise your concerns, but if you do not inform them and you have an adverse reaction, they can say ‘Well, we didn’t know…’ at least if they have been informed you have covered yourself.
One of the problems we can often have with medicos is that they do this sort of thing everyday and, for want of another word they can seem a little flippant at times. None of them have actually been through all of this as a patient and they really have no clue what the realities of it all can be for us. We know because we’ve been there too, so come talk to us.
Merl from the Modsupport Team
Hello @talloak so glad you found the group and I am sorry that you are going through this. I first want to say please dont worry about the shock in others- You are the patient and the one going through the mental and the very physical issues. Its a great deal. Your mom is going to worry regardless she is your mom -
I too am super sensitive to medications and am actually deathly allergic to the dye used for angiograms/embolism so I have to take steriods for days before then I am super sick for weeks afterwards.
I am wondering what anti nausea med they gave you before and if maybe the nausea patch scopolamine would work better they put it behind your ear and you wear it for 3 days - in my family we can wear it for four days and it still works. - They usually just give people zofran via IV during surgery here in the states .
PTSD is a real thing. I hope you have support from your family and friends and that they can help advocate for you. My sister has it very badly and we have dr PTSD from them almost killing her.
Regarding talking to your surgeon about the benefit of giving you dexamethasone meds - more harm than good. My suggestion is to take an advocate with you to the appointment and plan on who is going to say what to the doctor. This is what I do with my family.
I am usually the advocate. If I am the patient then my husband is the advocate and we plan on what he is going to ask or what he is going to say.
We are here for you. This is an invisible health issue and people dont understand how scary it is to have an AVM in your brain. You are entitled to freak the F out . I know I did-
My story 10 years ago - I had previously had a massive stroke due to a 5 blood clots 7 months prior and had been in a coma -had paralysis - brain damage -which I thought was bad and then found out for bonus points my left side sigmond tranverse vein collapsed and my body tried to fix it by growing a DAVF with 30 attachments which looked like a spider which is one of the things I am afraid of ( mind you I chased a guy who mugged me two blocks, I am not afraid of many things ) so during my angiogram when I saw it and the drs were excited that it was way more complex then my scan showed my bp raised which then caused the anesthesiologist to do a main line iv to my heart which really hurt - and when I am in pain I want to punch someone so I told him - You better knock me out before I knock you out…Now Just a few months I was back at Stanford getting some pain shots by an anesthesiologist that I thought I had never seen before and I low and behold it was that same one from my angiogram and I told him I was sorry that I had threatened him - We had a good laugh about it. I did ask him if they ever practice on each other and he said no I said they should- Anyway I just want to say This is your time for people to care and worry about you- I know it can be hard . But you need to your energy to focus on getting better.
I cried when I read your messages to me; it is as if you are both in the room, standing next to me right now and smiling.
I think one of the many horrible things about this, is that if you speak up to the surgeon about what you do or don’t want to happen, the surgeon might end up saying that he doesn’t want to operate on you if you don’t accept these particular meds. Or he may just shrug his shoulders and then if it goes wrong, then it’s all down to you being awkward in the first place. I would actually like to say something like ‘do what you can for me, leave out meds and let’s leave the rest of it to God’ because getting an AVM diagnosis is like the last point in the road and beyond is just a void. I then imagine him rolling his eyes and maybe talking about me with his colleagues.
The PTSD is definitely shouting here and has a lot to do with being dominated by men in positions of professional power. The fact that you have to surrender your brain, the most precious, private treasure that you have to someone who you don’t really know, is sickening to me.
I do feel stronger though, about being clearer to the surgeon that I respect how he needs to follow a very carefully thought-out procedure but I am not just an average patient and all his hard work will go out of the window if he shoves the standard shopping list of meds into me and I then get very sick with side effects. I will definitely ask about patches for anti-nausea; thank you tons for the good idea. I would be so grateful if anyone has ideas about how to catch panic attacks in the evening before they tear you to pieces. I’m just about managing to get into bed around 3am on average and am desperate to re-boot my sleep routine to lark, not owl. As ever, heartfelt thanks.
I have just had my hospital appointment letter for my next meeting with my surgeon to discuss my angiogram results. It is next Wednesday and it feels as if that’s going to be the time when I find out how disabled I’m going to become. I’m not sure how I can bear the thought of losing what few things I actually thought I was good at, like my quick memory and love of words and writing spontaneously. I honestly don’t know if I want to have a life where I’m aware of how disabled I’ve become. There is no comfort from the hospital; it’s just a machine that processes people.
Who says you’re going to be disabled?
There are risks but you could go into this starting from “I could be 99% fine out of the back of this” or “I’m worried that everything could go wrong and I’ll be a wreck” or you could have some limitations by the time this is all over. Going through that sort of change is always going to be something to have help with but you don’t have to start worrying about it now. Find out what the neuro says and then let’s talk about it.
Do you worry about the risks when you go out shopping? Or drive to work? Or use the cooker? Or carry stuff downstairs? No, well I hope not. All of these things have risks associated with them. Crossing the road is probably the most risky thing we do. Tripping and falling downstairs is, I think, the most frequent office-related accident. Crashing the car is the most frequent work-related accident. We can kill ourselves if we are not careful when doing any of these things. But we don’t because there are things we can do to mitigate the risks: we look and listen as we cross the road, we hold the handrail on the stairs (when I’m carrying too much, I decide before I go downstairs which things I’m going to drop and which things I need to hold on to in order to grab the rail if I go, and I make extra sure I’m putting my feet against the back of the step each time) and so on. If we worried about the risks of crossing the road, driving, using the stairs or cooking we might never go out, never go to bed and we might starve. But we don’t.
In the case of the hospital, it is mostly the doctor and nurses who we are charging with considering the risks and making sure they look both ways, count the swabs in and count the swabs back out again and all that sort of thing. There’s a bit of trust required in the process but that’s what it is. For an embolization you’re under general. Same for craniotomy (usually, I believe). I’m a complete wuss when it comes to operations of any kind. I had an embolization, the risks were pretty much the same as a craniotomy, though in some ways probably less risky and I went in, got looked after, and woke up afterwards feeling like not very much but it was really amazingly gettable-throughable. Mostly to do with good drugs.
Rather than worry your way all the way to next Wednesday, are there questions you want to be asking in that session? Are there things that we can share with you about what our session was like or the questions we wished we had asked or anything else that would be good for us to help you get set up with rather than spend the whole week worrying?
I’ve moved you into your own thread by the way. If you don’t like the title, find the pencil icon under the title and rename it . I just think you deserve your own space to go “aaaaaaaaaaargh”. This is it.
Very best wishes,
@talloak I wish I could I reach out and hold your hand right now - The way I explain it to my drs is that I am rare and rare stuff just happens to me, then my husband chimes in and says yes when she had mri contrast she passed out in the dressing room not during…( I always seem to have a delayed reaction to things) this is just one example
Speaking of God and Drs I have a funny story to tell you- My AVM dr he is the founder and head of the dept of Stanford and of course has a huge ego. During my first angio/embolism which was only 11 months after my massive stroke- I had a mini stroke and they wanted to go back in soon after…in my appt post about a month later I said I think I need some time for brain and body to heal ( I am deathly allergic to the dye during the angio etc so I feel like crap for 2-3 weeks from that) and he asked if I was still hearing the whooshing I said sometimes when I turned my head a certain way but then I would pray and it would go away… He said oh maybe we should just pray away your DAVF- Of course he was being snarky… So I said Geez if you think one moment that I survived a CVST with 5 clots and now this without the power of GOD I feel sorry for you! Then fast frwd 4 more years my gf actually ran the MRI dept at Stanford and she was retiring so I got scared he might be retiring so I scheduled my angio/embolism with him and guess what some of my attachments sealed on their own! its rare but can happen. The rest he doesnt want to touch cause it can cause paralysis so we are just watching and in a hold pattern.
I wonder if thinks about my comment…cause he was definitely nicer the second time
Here in the states we meet with the anesthesiologist separately usually a few days before or they call you to go over your allergies etc.
If they dont want to give you the patch I just recalled a nurse gave my mom reglan after we had insisted with anesthesiologist to give my mom something stronger during surgery than zofran cause we get very sick from surgery and of course he did not listen - so the nurse took pity on my mom cause she had spinal surgery and had to lay flat and was vomiting. So she order reglan and it really worked! But the patch is the best and in my family it works for 4 days not 3 like they say.
Remember it is your body and your mind. You have every right to speak up for it. We are not cookie cutter patients to begin with .
Also here in the states in the hospitals we have social workers - not sure if they have them there were you live but you might want to ask for one - dont be afraid.
I have turned Stanford inside out when my sister got the flesh eating virus and one dr kept trying to take her off one blood thinner for one that did not have anticoagulant and she has von willbrands which is a bleeding disorder. I also threw the head of rheumatology out of her room and told her to never set foot in her room and told her she was a liar. When she also got cervical cancer and post surgery the team of drs thought she was bleeding internally and they were all pressing on her tummy separately cause they could not be bothered to come in together. I threw them out of her room as well and her heart dr and nurse asked if I would come be their advocate when they were in the hospital. Everyone needs an Angela advocate and if you dont have one usually the hospital has one. To help with sleep my pain dr suggests keeping a strict schedule of waking up and going to bed. She also says its important to start your day with protein. There is a supplement called Taurine that I find helps as well I take 1000 mg a few hours before I want to fall asleep.
She also prescribes a muscle relaxer for me - I also take magnesium at night. I take low dose naltrexone 4.5mg here in the states its compounded and its helpful for sleep pain and ibs
Amazon also sells a magnesium lotion or oil by Ancient Minerals its good to put on your legs and feet to help relax.
@talloak It may not be bad news. Drs have to tell you the risks- there are risks with any kind of surgery. Thats why I personal wont go with a young dr and I always ask them how many people have died with you how many strokes etc . I was the first to have a small stroke but after a few days I was back to my new normal.
Be sure to take along with your whatever is going to make you comfortable in the hospital, lip balm, book, download your fav music or movies. Bring your favorite crackers and snacks. Let us know when your surgery is so we can be sure to be online to check in on you.
The brain is amazing and remaps all the time. I dont think I mentioned I have a cat named Koko well Kokothemiraclecat and he has half a brain. He does everything a normal cat does except purr so when is happy he grunts. He is on Instagram and Facebook - He is very spoiled by us esp his catdad I think if he were our real son he would of had a sports car at the age 5!
This is where I am thinking. It is the one thing where they have to let it be your choice to have the surgery. That makes it a difficult call but my interpretation of these things is that if they believed you were better off not having the surgery, they wouldn’t even offer you a surgery option.
So I’m hoping you get to find out how big, how complex, what deficits they think you’d most likely have, which ones there is a risk of. Oh, and the standard ones that I got of “5% chance of a stroke or killing you…” Like I say, even an embolisation carries serious risk that we have to just trust the docs in.
It’s a rubbish situation to be in but honestly, we’ve all been there: we know how it feels, and you will get through it.
Very best wishes,
@talloak - I love reading through all of the responses and seeing how others look at things as well. I could write a lot more, but I don’t have time so let me just share a couple of thoughts.
At last count, I think I’ve had 18 angios and embolizations. I feel like my blood vessels from my groin should get frequent flyer miles. Some of them have been done on just local anesthesia, some of them have been with general anesthesia. If they are uncomfortable, tell the docs that you need more pain meds. If you’re anxious about it, have them give you something to help you relax.
My understanding of it, there isn’t much they can do for the pressure, but they certainly can for the uncomfortable/painful part of an angiogram. And the dye, the only thing I can say is that I’m glad it doesn’t last very long (at least for me).
I have taken to writing out my list of questions and concerns for my doctors before every appointment. It takes extra time, but it really helps them understand and see your concerns. And take a copy of it with you so you can refer to it as well.
General Motors t a therapist/counselor - I can’t tell you the number of times in the last 3 years (the worst of my 42 years battling this AVM) where having a therapist to talk to, unload on, to share my real feelings has helped me walk back from, as I call it “the cliff of hopelessness.”
Write on here more often and shorter. I’ve found that the best way to get answers to questions on here is with shorter and one question at a time.
Well, that’s all I’ve got time and energy for tonight. Hang in there and keep in touch!
@DickD Yes in trading we call this risk weighted probability then during lay offs people would always wonder why I wasnt worried I would say cause I have no control over it - I am just going to do my job and get on with it . Just like @DickD has said they wont offer it if its too risky -
Interesting. Mine was rear occipital, and I did also get a burning sensation but it was on I think the side of my face upper cheek and eye area. My surgeon was Dr. Cusimano here in Toronto. During the Angiography I had a sense of humor, and told them that if they were looking for my brain the needed to head south not north to find it. True. My “PTSD” really only showed up a few months after I was back to work. I was nuts. Are you coping ok? Took a year to knock the chip off my shoulder, but to this day I don’t get angry in rush hour traffic anymore.
I feel pretty overwhelmed with the generosity of everyone’s messages and have tried hard to think of all the different viewpoints that everyone has been putting forward.
My appointment with the surgeon is tomorrow and I have already emailed a list of my questions to him which actually wasn’t the difficult bit - the part of me that analysed and evaluated everything at work just gets switched on straightaway and I’m back in research and learning mode. The difference is that the research project is my own brain this time. I don’t know how people cope with an arm diagnosis after having had another life-changing diagnosis before but I cannot make sense of what is happening to me. I have managed to survive somehow with a breast cancer diagnosis that happened four years ago and which was tied into a terrible toxic work environment where I lost colleagues to suicide, and now I have an arm diagnosis. It seems as if I’m much better at doing ‘dying’ than doing ‘living’. I completely believe in trying to get therapy help and have done all I can to do so but so far, it’s been pretty dire and done more harm than good.
I know you’re not meant to blame an avm on yourself but I know how much I’ve driven my body on work adrenalin which wouldn’t have helped my head trauma after falls from my bike or from horse riding. I either want to scream ‘why did doctors and medics never tell me when they had the privileged access to the knowledge?’ or ‘why didn’t I find out the knowledge for myself at the time?’
Well, I just want to say “good luck” for tomorrow. I hope you have a good conversation. Are you there in person or is it a telephone consult? I’m hoping the doc can talk you through whatever images they have. I know that’s what I wanted to see.
I don’t think anything of this is “you”. It is simple time and chance and the hand that we are dealt.
When I saw my initial consultant (he happened to be an interventional radiologist because the team had decided that embolization was my best treatment) I have to say I found him quite “mechanical”: very much an engineer rather than someone who was there to help me with the emotional side of it all. But, you know what? The things he told me, the careful, exact way in which we had the conversation showed me his focus on the physiological task at hand (not the emotional task at hand) but that worked for me. I decided that if I were to trust my brain to anyone, this was the guy. Quite odd interpersonally but clearly an engineer who knew exactly what the trouble was, how to fix it and as reliable as anything. I was happy.
I hope you have a decent meeting tomorrow, get to ask most of the questions that you have and come away feeling that the doc understands the situation.
We are with you all the way, as far as you want us to walk.
Very best wishes,
@talloak Good luck tomorrow with your surgeon- I think many of us are like you when we found out about our AVMs we did as much research as we could - I am sure your surgeon will appreciate that you are prepared with your questions - Like @DickD said my surgeon who is the founder and head of neuro radiology he isnt known for his bedside manner but second go around he found out one of my good friends was also his friend who ran the MRI dept and he was much friendlier But really all I care about is the quality of his work.
I’m know how hard it is to swallow the anxiety of medical situations. Even a checkup can spin me into panic attacks. My mother, who was schizophrenic, told be by the age 8," Doctors are trying to kill her…" Someday you just sit down and buckle in, close your eyes and leave it to God.
Then I had an emergency 14hr emergency craniotomy.
God will not give you more than you and your support group an handle.
Thank you from the bottom of my heart for these replies. My surgeon’s appointment yesterday is now a blur and whilst I remember what happened and what was said, it’s like I wasn’t there. He told me that they believe they can now see from my angiogram another 2 small avms along with the 2 bigger ones that were obvious pretty much straight away as soon as the radiologist had finished doing the angiogram. These are all clustered along my sagittal sinus (I’ve remembered the name at last). As a result, I’m going to have a bigger wound opening in the shape of a hairband along the top of my head and he cannot guarantee that the pain I have at the moment will all go away. I think he meant that it would be replaced by post op pain. He said that it didn’t change the procedure too much for him but this is now considered definitely pretty rare. I asked whether he could see any patterns in the formation or anything, anything that would give some idea of the cause like for example if the artery itself is damaged or infected. He couldn’t give me any further understanding or knowledge but needs me to have an X-ray CT scan as he wants pinpoint accuracy for when my craniotomy is going to happen. Everything went downhill after that. I tried to get across to him how terrified I was about the noise, bright lights and horrendous atmosphere of being put on an open ward for recovery when I wouldn’t be able to move a muscle and he ended up saying that whilst he hears my concerns, Covid infected patients are going to take priority for quieter side rooms than someone who doesn’t like a radio. I broke down into a full blown panic attack and remember shrieking and sobbing in his office. I think he was a bit shocked and I heard him say that he can now see how serious this is for me and how ‘this was not going to work’ on an open ward. I left with a pounding head on fire, locked myself into the ladies toilet in the clinic and cried. The clinic staff were knocking on the door for some time but one of the women was very kind and seemed to understand what it must be like to offer your brain up to people who are complete strangers and whom you have no trust in. I don’t know how you all do this so cheerfully; I just feel deeply humiliated and trodden over.
Don’t EVER feel humiliated. EVER.
None of us ever choose to be ‘here’ and how we react emotionally is very individual. Let’s face it, it’s bloody shocking to say the least when we’re told we need brain surgery. My first surgery was an emergency situation, so I was a little unaware of what was happening around me, but with the subsequent surgeries I knew what was coming and my physical reaction at being told further surgery was required was to vomit.
Trying to explain the emotional context of it all to medicos is near on impossible, I know, I’ve tried. They deal with this sort of thing everyday and become a little desensitized to it all. But for us it’s very shocking and very real, we don’t have the privilege of just ‘switching off’ to it all. I don’t think I’ve EVER been accused of doing all of this cheerfully, in fact quite the opposite. I can be a little…OK a LOT… Confrontational about it all. For many years the medicos minimised my symptoms as an over exaggeration, that was until it became an emergency. That’s never happening again. I have a little motto
“Don’t be stepping on my toes because in retaliation, I’ll crush your foot”
Some medicos do not appreciate my ‘self-advocacy’ but this is about me, not them. How they feel about it all doesn’t count.
Merl from the Modsupport Team
I think this is the key. The simple fact you had something of a meltdown is enough to show the doc that it’s serious: you’re not minorly affected by this. So I think a chat again as preparations are made will reveal that they have changed their minds about your needs.
I have had a similar situation with the fact that I can go into a vasovagal syncope at the drop of a hat and it was quite fun because on one occasion I went to the hospital for a minor op, but one where I needed to lie still through the procedure and I told the doc about fainting. Well, once I’d made it clear that there was a bloody good chance I’d faint (and therefore might move during the procedure) he was like “I’m very sorry Mr D but I don’t think we’re going to be doing this operation today”… (I’m sure I’d waited several months to get to that stage) and he decided to refer me for the same procedure under general.
So, they do listen.
When it came to the hospitalisation to do the same op under general, the anaesthetist came to see me and told me I was going to be “done” under local (again) having waited another 6-9 months to get a hospital appointment so I had to re-tell the story. Then the consultant came to see me and again tried to push the “local” anaesthetic. Then I saw the anaesthetist again and I said to him “I thought the consultant had decided we were going to have a go under local?”
“You persuaded him…”
So we were back to discussing a general.
They do listen when it is a real problem. Just be clear and consistent with your needs. I think you’ve made it clear, so I think further conversations should get you there.
Hope this over-sharing helps. I’m sure I’m just as embarrassed by my ridiculous disability with a cut as you are with yours.
Very best wishes,
I found your introduction very interesting, especially “being alone.” I"m now in year four since my diagnosis and Gamma Knife surgery. I was to have had my 3rd year aniversary Angiogram which has been put on hiatus since the outbreak of coronavirus and COVID19. Now since I was supposed have had the last Angiogram and am still waiting to have it scheduled. Now with having said the above, I find myself feeling alone and unable to do anything about those needed tests and it just creates feelings of uncertainty in so many ways because we (myself and doctors) don’t have a game plan.