Hello I'm Maggie

Hello - my name is Maggie and I live in Courtenay on Vancouver Island. I have just had a diagnoses of an AVM occupying the right anterosuperior margin of the right parietal lobe that is 21 x24 x 25 mm. It was discovered during a CT after a fall. Since a MVA in 2014 I have been having drop attacks. This one was bad, fell on face forehead. I am still in pain and muddle-headed, this website is very confusing. I have an EEG on June 19th and an MRI on Aug. 4th. It is all so new and confusing for me, I had not heard of this condition before. It would be great to chat with someone local.

Hi Maggie I’m from Campbell River so practically next door neighbours! I had my AVM surgery at Vancouver General Hospital in January 2016. No disrespect but June and August seem a long time off for your testing when you’re falling and hurting yourself. Maybe you should push for a referral. Just my personal experience, but I found the doctors I saw on the Island to be lacking. It took me 5 years of mucking about with dozens of doctors and tests all over the Island before I ended up with a bleed and in VGH. An angiogram was the definitive test for an AVM diagnosis. I am so thankful VGH did my surgery. They saved my life and the results have been more than anyone could have hoped for. Good luck with it all.

Thank you for your reply. I appreciate your time, I did not find your email until today, I find this website very confusing. I am very interested in your journey thru this mire. I am particularly interested in knowing why it was such a struggle for you with so many doctors. I do not want to pry into your private live, but would be grateful for whatever knowledge you are willing to pass-on.

I am seeing a Dr. Fleetwood in Victoria after the EEG and MRI, I am going to go back to my GP with more questions as I was pretty toodle-headed when I last saw him which was just 4 days after my fall. I have been doing some research, I had not even heard of this condition prior to my diagnoses. I have the feeling that I need to be grateful to a very astute CT technician, she must have spotted something on the 1st CT as she then told me that she was going to do a second CT with contrast. My understanding is that this condition is very rare and one needs to have an experienced neurosurgeon. Thanks again for making contact, providing it is ok with you I look forward to further contact. As your time and patience dictates, I would very much like to hear more of your experience.

Sincerely
Maggie Brooks

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Hi Maggie…good to hear from you. I too had no idea what an AVM was. I was searching for answers because I suddenly experienced LOUD pulsatile tinnitus 24/7 so I was referred to ENTs, internalists, head/neck specialist, vascular surgeon and many GPs. I had 3 CAT scans (they mixed up my films with an old lady and said I’d had a stroke; found the error a month later), MRI, angio and ultrasounds. My AVM bled in October 2015 and being from Campbell River, I went to the ER here with the mother of all headaches. The ER doctors were pitiful. They ordered a spinal tap to see if there was blood and it was done by a resident (student) under supervision. He almost paralyzed me. An OR doctor was called in to fix the mess and I did indeed have blood in my spinal fluid apparently indicating a brain bleed. The ER doctor called a neurosurgeon in Victoria for an over-the-phone consultation. Guess who? Dr. Fleetwood. He didn’t seem concerned and said he would call and arrange an appt to see me. That didn’t happen for 2 weeks and I was in insufferable pain 24/7 to the point of considering suicide. I went back to the ER 4 times in that period and they gave me morphine and sent me home. It didn’t help. I was desperate, my life was being lived from minute to minute trying to combat the pain. The trip to Victoria was a nightmare, a 3 1/2 hour drive in excruciating pain. Dr Fleetwood was apathetic. Said he didn’t remember the phone call and would order an angiogram within 2 weeks but he was going to be away on a lecture tour and not available. He did put me on a course of pain medication which helped some. I had to phone his office 3 times before they got an appt for me again in Victoria. The day I went down for the angio it was a raging November storm; my appt was for 1:00pm and the power went out at Vic General at 12:00. I waited until 4:30 then they cancelled. After throwing a hissy fit they agreed to reschedule for the next day. I heard nothing back from Dr Fleetwood, phoning several times over the next weeks and always told I was on a “to call” list. My condition became critical over Christmas and my husband finally got hold of Dr Fleetwood. He said he would call when he had time and when my husband finally convinced him that time was running out he suggested he call Dr Charles Haw, a neurosurgeon in Vancouver to see if he could help. He called and told them he was going to bring me over and camp on their doorstep until I was seen. They agreed to see me and Dr. Haw admitted me on sight and operated the following morning. I was in a coma by this time and have little memory of what happened. Dr. Haw did a catheter embolization on 26 January, 2016 and I had 12 coils inserted in the AVM to block the attached vein; he said blood flow was virtually stopped to my brain and was backing up/pooling in my head. It was successful and I gradually improved, returning to Campbell River Hospital in February. I was back home by mid February. I have had a miraculous recovery, no more tinnitus, headaches or dizziness. I’m a little weak on the left side and have an altered sense of smell and taste. Nothing I can’t deal with. My last MRI was in February 2017 and all was clear. Dr. Haw has called me at home to check on my progress as has one of his residents. Exemplary service. I am so glad I had my surgery there as I honestly believe if I left it to Dr. Fleetwood, I would likely be dead. That’s just my opinion based on my experience. I don’t mean to discourage you from seeing him as he is supposed to have a good reputation. The best thing he did was refer me. Gauge for yourself and if you don’t feel comfortable with Dr. Fleetwood, don’t be afraid to ask for a referral. It was the best outcome for me and I have my husband and Dr Haw to thank for my life. Dramatic, but true. Stay in touch, and I’ll try to help you with any questions. Good luck, Maggie.

Hello Jenny - I can’t thank you enough for your input, I am one of those people that the more I know the more comfortable and in control I feel; even if the info is scary. Husband (Les) and I lived many years in North/West Vancouver and that was my reference point for doctors, I found the attitude of doctors here perplexing. I am now 73 and quite often have the feeling that they consider anyone over 70 as in the ‘Green Room’ waiting for God. I have often felt the need to and have explained to med. profession here that my parents are still alive at 95 & 96, living independently. My mother was still driving until age 95. My mother has a sister, brother in their 90s still living independently. I have a newspaper article about 2 of my great, great uncles being the oldest living brothers in London, England.
at the time. I stop and wonder why I feel the urge to put out this info, then realizing that I feel dismissed as old and not to expect much. It may be the GP that I have, I have never been comfortable with him, however with the situation at hand as you know, the only alternative is a walk-in clinic. So what I have decided is that I must manage my doctor by arming myself with as much info as is possible so that I can not be dismissed. Thank you for being a huge benefit in my learning curve with this condition. If you don’t mind may I ask where your AVM was located. I have one further request of you, If your answer is ‘NO’ I will completely understand and respect your answer. the request is that I may show my doctor your email to me describing your history; of course blacking-out any reference to your identity (also that of Dr. Fleetwood, if you so wish). I make the request because your story so dramatically depicts potential debacle. Before we moved here our family doctor was a semi-retired ENT specialist, he said to me to watch doctors especially specialists as they consider themselves as exotic birds of paradise. To be fore-warned is to be fore-armed’, my thanks. I am going to read your email again now as I want to take it all in. It is mind-boggling and hard to comprehend that this happened to you, this emotional shut-down and lack of accountability by some doctors is really amoral. It is so good that against all odds you had such a positive outcome, you sound like one very strong lady and my compliments to your husband and his attitude and determination. I very much want to stay-in-touch with you, however I feel the need to tell you that I am very good at the unvarnished truth and so if I ever become burdensome please let me know as I will not take it personally and will adjust accordingly. Life is busy enough without extra burdens.

Best regards
Maggie B.

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Maggie…I will respond to you through Private Message so check your PMs.

ok thanks

Hi Maggie. I’m not local to you. But I just wanted to say Hi and welcome to the site. All of us here have been or are being affected by AVM. But it is still a relatively unknown condition. I remember feeling very alone when I was first diagnosed. But this site has helped me to realize there are others in the same position. My AVM is in my Cerebellum and is unruptured and untreated. It first showed itself in 1987 but I have been advised against treatment because of its position.

Hello Lulu - Thanks for making contact. I have dual citizenship and used to live in Plymouth, Devon and so there is kind of/sort of a neighbour bond there. I am so new with this condition that I do not really know anything yet. I’m waiting for an MRI & EEG and then get to see the neurologist. I will let you know my update. It sounds like you have had a rough time with your condition. Do you find it difficult to deal with emotionally? I think that I am still in the shock stage, feeling a bit numb and fragile, sort of waiting for the other shoe to fall. Do you get to the stage where you can put it out of your mind on a daily basis and just carry-on with and enjoy daily life? It really is helpful to be able to chat with someone who knows & understands.
Can not tell you how great it is to have contact with you from the other side of the pond. I live on Vancouver Island which is the extreme west of Canada, in the Comox Valley, British Columbia. We are on the east coast of the island, surrounded by mountains behind us. It is rich fertile soil here, lots of farmers, ranchers, vineyards. Lots of locally raised animals for market including Buffalo. There is a herd of water buffalo, locally produced cheeses. Very Artisan community, very Green no pesticides allowed. Great Salmon fishing, lots of really good seafood. We get lots of tourists in the summer. Look us up, lots of info online. I am going to look up your community, I want to have a mental picture of where you are. Thanks again for making contact, I look forward to developing a friendship if that works for you.

All the Best
Maggie Brooks

Hello - Lulu, did you get my message? Hope all is well with you. Look forward to hearing from you.
Maggie

HI Maggie. Sorry I didn’t manage to respond sooner. I would love to develop a friendship and am grateful that you contacted me back. We are all ‘in this together’ and I think there is a lot to be said for having things in common! Your home sounds absolutely wonderful. You’re really lucky. I have a work colleague who went on holiday to Canada last year and had the best time. It seems like a lovely place. Personally I have never been outside Europe. But ho hum, there are some pretty gorgeous places here too. Milton Keynes where I live is a new-ish (well 1970s) city. It gets mocked because we have grid road and lots of roundabouts. We also have ‘concrete cows’ - a sculpture that was designed years ago for city-dwellers that had never seen cows!! Still, we are a pretty modern city with lots of work and parks/open spaces. So all in all its a good place to be. Please do let me know when you have any update about your condition. I really do wish you all the best. Since I have known about my medical condition since I was 14 I have sort of got used to it and accepted it as part of me really. My AVM journey has been a fairly long one. But I consider myself one of the lucky ones in lots of ways. I have a supportive family, great job and a generally positive outlook on life. When I first found out about my AVM I remember it being a shock and my mum almost passing out. So I can imagine what you are going through. I think I was also a little relieved though to be honest that it wasn’t ‘all in my head’ (ie imaginery). Take care and hope to speak to you again soon. x

Hello Lulu - thanks for making contact, I look forward to future chats with you. I am short on time at present, have my 96 yr. old mother living with me and I have to take her to an eye appt. love the sound of your ‘concrete cows’ I’m going to look them up. I’m doing ok, do not know much yet waiting for testing and so talk about me at a later date. I do not feel emotionally distressed, just some shock, 'Holy concrete cows, I’ve got a WHAT!. All the best to you. Will message you later.