New member; so glad to connect with others who I can share with and learn from

I will try to keep my introduction short. I was 36 years old when I began feeling strange. I have other health problems, so days went by and I kept thinking I would feel better. Finally, when I could barely walk, I was taken to an emergency room. I told them all of my symptoms and they gave my IV fluids, said I was dehydrated, told me to follow up with my primary care doctor the next day and sent me home. That night I was alone and things kept getting worse. I ended up driving to my dad’s house because I was so scared. He took me to my primary care doctor the next day and I knew something was really wrong. I’d been seeing this doctor for years and I couldn’t tell my dad how to get to her office. We finally got there, and on my way in, my legs seized and I fell to the ground. I forgot to mention that for at least a week (I think maybe 2) prior to feeling strange, my legs and feet were extremely swollen. Now I’m at the doctors office and I fall on my way in. I tell her what happened at the emergency room and explained my symptoms (including the new ones) to her. She said I had vertigo and gave me medication for that. My husband had been in NY and I was supposed to drive 2 hours to pick him up from the airport after my doctors appointment. My dad drove, and he needed to stop on the way home to eat. When we got out of the vehicle, I couldn’t walk more than a few steps before my legs would “seize” and I would fall to the ground. My husband was trying to keep me from falling, and he did help as much as he could, but he said that when this happened, I was like “dead weight” so he wasn’t always able to keep me from falling. As we sat in the restaurant, my symptoms were progressing. I began noticing that my eyes would uncontrollably cross, and my head would shake uncontrollably. I was scared. I was embarrassed. I asked my husband to help me outside where I sat. People who didn’t know me kept coming up to me asking if I was okay. One couple prayed for me. I can not describe how I felt or what everything looked, sounded, tasted and smelled like. It was as if all of my senses were heightened. He took me to a different emergency room that night, and I was accused of overdosing on my prescription medication. I’m trying to keep this as short as I can, but there is so much to tell. My son was taken from my custody. I was put through pure hell for the next 6 months. I was kicked out of the practice I had been going to for treatment of several illnesses. After being released from the hospital, they did an angiogram and found the AVM. They still didn’t say they were wrong about the overdose. I saw a neurologist who seemed like she was genuinely concerned and I thought she would help me. The next appointment, I was seen by a nurse practitioner and told that I wouldn’t be able to see the doctor again. This was April 2016. I am going to see a new neurologist on October 11th. I’ve been waiting this whole time. I’m not the same person I was before. I was told in the hospital that I would receive cognitive therapy, but instead I was nearly forced into rehab for the medications I’m prescribed for my other health problems. I never got the cognitive therapy. I haven’t gotten any help. I pray that this new neurologist will help me. I’m thankful to have found this forum. I hope that I can connect with others who can help me understand what I’m going through. Thank you for reading this. I do hope to get to know some of you and share stories, share encouragement. I will go for now. I really look forward to hearing your stories. Blessings to you all.

Hi Kaila…I hate reading stories like yours as it forces me to relive my own “journey”. Some journey; It was a five year nightmare and despite so many symptoms and referrals to so many doctors (26+ I counted) no one took me seriously. I live in a small community so our hospital is small. I lost track of the hours I wasted in that ER only to be told I had vertigo, fluid in my ears, a mini stroke, brain infection, not looking after my diabetes, etc etc. One doctor told me to get a pedicure and it would make me feel better. Even when I was babbling incoherently unable to form words the ER doctor told me he refused to deal with me unless I talked to him in the “first person”. I had no idea what I was saying. Each time I was given morphine and told to go home and rest. I woke my husband up in the middle of the night and said I’d had enough and wanted to end it. The cheeky bugger hid all the meds in the house. It wasn’t until I was so far gone that he bullied his way in to see a neurosurgeon in Vancouver. That was my lucky day. The dr knew immediately what was wrong, admitted me, and performed a coil embolization on my AVM the following morning. Just in the nick of time as apparently it had bled and my brain was full of pooled blood and reversed blood flow. So the moral of this story is find yourself a skilled neurosurgeon specializing in AVMs. There is lots of information on this site and names for referral. Check them out; you should be able to find one near to where you are. It’s your best chance. Good luck.
Jennifer

Welcome to the forum Kaila, its great you have joined us. You’ll find a wide variety of experiences here with AAVMs and our interactions with the medical world. You have sure had a tough go of it! AVMs are often more than challenging enough without struggles with the medical folks. I was fortunate in that regard, I can’t imagine the additional difficulties that could have been faced. I hope your upcoming appointment is beneficial. Take Care, John.

Thank you for your kind words and for sharing. I forgot to even mention that I had a hemorrhage which is what caused me to be hospitalized. Then the seizures came and I just haven’t been myself ever since. I’m not sure if it matters, but it was my frontal lobe that was affected. I just want someone to help me understand why I feel like I’m not even the same person anymore. I wish you all the best and thank you again for your kind words and for sharing your story with me.

I apologize, it’s difficult for me to sort all of this out and see who I’m replying to. Thank you both for welcoming me. I hope that you can both see the post where I mentioned that I forgot to tell that I had a hemorrhage which is what started all of this. Thanks so much for being so kind to me. I just pray that I can either learn how to adapt to myself as I am now or get back to the person I was before. Blessings to you all!

This is all very confusing to me. I’m not sure who I’m replying to and I apologize if I’ve replied to you already. I just want to be sure that anyone who commented on my post will see what I wrote. Blessings to all!

No worries at all! Once you get used to the forums its a lot easier, just takes some time. I’m not tech savvy at all so there was some trial and error for sure. Your posts look right on to me! I had a bleed, my AVM is in the left temporal. That is 17 months ago, it was long time until I was feeling decent again for sure. I feel good now, but I would say that I have a new normal for sure. John

Kaila - once your AVM has been treated your life will change and you will find your new normal. That’s not necessarily a bad thing. I have restrictions; I’m weak on my left side and walk with a limp, I tire easily, and have a fussy appetite (altered taste and smell) but I’m still so much better off than I was. Priorities change and life slows down a little but just remember to laugh a lot and enjoy what you have, rather than grieving over what you have lost…Jennifer

I’m trying responding by email and maybe that will be easier. I would be okay with having a new normal, but I don’t feel that I’ve gotten the help to learn how to be my new normal, if that makes sense. I was supposed to get therapy to help me learn things again, but they were too busy trying to make me go to rehab. Even after the neurosurgeon saw the AVM, he was too full of pride to admit he was wrong. No one cared about my physical wellbeing. I didn’t know who to turn to. I still don’t. My bleed was in April 2016 and it seems that I’m feeling worse all the time. I think mostly (or solely) because I haven’t gotten any help. But I have hope. Thanks again for being so kind. This is a horrible thing, and I have tried to learn as much as I can about it, but it would be nice to have a doctor sit down and explain things to me. Take care.
Kaila

Thank you so much for the encouragement!! I have hope that I will get the medical attention I need and learn how to adapt to my new normal. May I ask where your AVM is? I’m assuming you had a bleed? I think I read that’s how most people find out they have an AVM? Thanks again, you have been so kind!

Kaila

My AVM is now obliterated thanks to embolization surgery. It was described medically as “right sigmoid sinus DAVF dural fistula presenting as venous congestive encephalopathy”…basically it was located behind my right ear in the lining of my brain. Although it first starting causing problems in 2010 it didn’t bleed until October 2015 (sudden loud roaring noise followed by severe headache). The ER doctor performed a lumbar puncture (spinal tap) and it was full of blood. Surgery was performed in January 2016. By the time it bled I was shaking, falling down, double vision, vomiting, excruciating headaches, and trouble talking and writing to name a few. It was almost too late. The neurosurgeon said I wouldn’t have lasted another 48 hours. I was in a semi coma for several days before I became lucid. The neurological team described my recovery as “miraculous” so I guess I surprised everyone. Not bad for an old babe, eh? Keep asking questions and research everything.
Jennifer

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Wow! I am so sorry!! I’m certainly not trying to push my beliefs on anyone, but I will keep you in my prayers. I was ill for many years before my bleed, and I have several chronic illnesses. But now I just wish I could be the person I was before this all happened. I don’t know how much the AVM affected me before the bleed, but I know that I don’t even know who I am anymore. Every day I wish I could feel the way I did before this all happened. It’s like, life before and after the “hemorrhagic stroke” and life after. I’m still hopeful, but the hope is fading. It’s been so long and no one even seems concerned about it. I feel like I’m fighting a losing battle; like it’s me against the world. I’m trying to keep faith. That’s the only thing that’s gotten me this far. I hate that you’ve been through so much. I’m thankful that you’re here now to tell your story. I do believe in miracles. There’s so much inside my head that I want to share, that I feel like I need to share, but I’m not capable of putting any of it into words. I used to read and write a lot. Now I can’t remember what I read by the time I get to the next page. Sometimes the next paragraph or sentence. You guys are helping me already see the bright side of things. I really appreciate your support, kindness and openness. I will pray for you. You have an amazing outlook on things and make me want to be a better person and have a better attitude/outlook. I hope we can stay in touch. I will always continue trying to learn more about this. It’s just really frustrating when I feel like I’m beginning to understand things a little then it’s like I’m back at square one, like I have no idea what I’ve learned about it all. I’ll go for now, but I do hope to connect with people here who I can relate to, who I can help and who can help me. You’re truly an amazing person and I really admire you. Thank you again for sharing and for your encouragement. All the best.

Kaila

Hello kaiami. All of us that have had an AVM rupture wish we could go back in time and stop it from happening. My AVM rupture was back in 2000 when I was just a 10 year old. It changed a lot of my life. The years 2000 to 2002 were the craziest years. You still have luck on your side. My rupture was a crazy ride. Ended up emergency surgery just to stop the bleed. Ended up having 4 surgeries from the bleed that spread. To this day I’m in great health but it was a long recovery.

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Wow sounds like you’ve been through hell and back, what an awful experience, I was diagnosed with a AVM which was found by accident from an MRI , I had pulsitis tinnitus in my right ear for some time , I was referred to ENT who went through the sinuses route but found nothing , they did a MRI and found a front right lobe AVM, obv I was very worried , I was told the only option was surgery as it was too big for radiology. Had elected surgery on May this year and am now AVM free. I’m awaiting a post op apmnt on Nov this year to go over how I am. Had a CT Angio scan in Aug which they will go over results in the Nov apmnt to make sure it’s all gone. I hope you get your AVM resolved in the easiest way possible journey and have a speedy recovery we

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Thank you so much for sharing your story and for your kind words. I don’t understand why no one has told me that it’s an option to have the AVM removed. I thought it was just something I will have for the rest of my life. I didn’t understand what you were telling me about the symptoms in your right ear, so I looked it up. I have the same thing. It’s like I hear and kind of feel a thumping in my ears. For me, it’s both ears. It might not be related to the AVM, but now I wonder. I’ve had it for years but I have so many health problems I’ve never talked to a doctor about it. I had tubes in my ears at least 13 times and when I was 10 years old, they had to remove them because they didn’t come out on their own. When they removed the right one, it put a hole in my eardrum and I had to have surgery to repair that. I’ve always thought this feeling/sound in my ears was caused from all of the ear problems I had as a child. Now I wonder if the AVM could be the cause. My AVM is also right frontal lobe, and I was told that when it bled, there was “permanent damage” done to that portion of my brain. I’m seeing a new neurologist on the 11th of this month, and I’m hoping and praying that they will be able to help me. I just want answers. I’m not the same person I was before the bleed, and I just want to know if I can get back to being myself, or if I need to learn how to deal with my new normal, as others said they had to, then I need help learning to understand and deal with that. I’m so limited to what I can do, and even my close family gets frustrated with me because they tell me things and most of the time, just moments later I have no recollection of being told. I thought at first that they were wrong, but I finally accepted that they can’t all be wrong, I’m sure they aren’t doing this to hurt me, it’s obviously a problem with me. I also get lost very easily and it makes shopping and just every day tasks so difficult. Thank you again, you all have been so encouraging and I feel so much more hope than I did before joining this group! I have some images of my AVM, and I’ve often wondered if it’s “normal” or “big” or “small”… I don’t know. I wish that someone would take the time to explain this to me. No one has explained anything to me, and I think it’s because they made the assumption that I had been abusing my medication and that caused the bleed. After they found the AVM, they didn’t apologize for accusing me of something I didn’t do. I went through so much, having my son taken away and everything. I’m not having a pity party, I feel so relieved to know that I’m not alone. I just want to learn more. Thank you again. I wish you all the best!

Hi yes AVM’s can be treated , the usual treatments are Surgery to remove it which will get rid of it totally, usually I’ve been told 90-95% success rate or there’s a type of Radiology which is a radiation which shrinks it but this can take 2-4 yrs and in this time people could have a bleed with the 2-4 yr period. But not necessarily. Usually radiology can only be done on smaller AVM’s , and also there is Embolisation which is a catheter through the groin and they put a glue on the AVM to slow the blood flow, but this has a low success rate as the glue can dissolve in the body. But they can use embolisation before they do surgery to slow the blood flow. Which is what I had before my surgery. So there are treatments for AVM’s . A lot of people don’t know they have AVM’s until they have seizures, hemorrage, bleeds etc, I was lucky and it was found by accident , due to the results of the MRI , from getting pulsitis tinnitus is usually in the ear from the fast blood flow coming from the AVM. Hope this info helps.

Hi forgot to say I don’t know if treatments are different if anyone has had a bleed , it’s something you would have to check with a Dr.

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Thank you. Yes I’m very anxious to see what the doctor has to say when I go on the 11th. I’m kind of shocked that neither the neurologist or the neurosurgeon ever talked about any kind of treatment. The neurologist did say that we would discuss treatment options, but I was never able to see her after my initial visit. I think the hardest thing about all of this, putting aside how much my life has changed, how much less I’m able to do, comprehend, have conversations etc., what’s worse than all of this is the fact that because they didn’t do an angiogram, just a simple CT until after I was released from the hospital, they told my family - as a matter of FACT - that I had overdosed on my medication and to this day my sister who I was always very close with believes that I abuse the medications I HAVE to take! Every doctor I’ve seen since they found the AVM has said it’s absurd that the neurosurgeon would say that this happened because of an overdose, but there isn’t anything I can do to go back and make him take it back. He won’t even admit that he was wrong. When he saw the results showing the AVM he told me what it was, not at all in depth, then proceeded to ask if I was still “using amphetamines”, which I had been prescribed Adderall for 15+ years and never took more than prescribed, usually less, but since he couldn’t find an immediate answer, he blamed that for the bleed and it’s torn my family apart. I apologize if I’m being too personal. I just feel like finally I can talk with people who understand what I’ve been through and am still going through. No one else can understand. Thank you all for being so kind to me. I’m hopeful that I will leave my appointment with more hope and understanding, and maybe even a treatment plan! I wish you all the very best and hope to stay in touch with you all! Blessing to all!

Good luck with it all and hope your apmnt goes well.

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Thank you! I’m getting ready for my appointment now and I’m very nervous and excited to know if they can offer any treatment options. Best wishes to you all! I will share with you all what happens today! Please keep me in your thoughts and prayers. Thank you all for sharing and for all your encouragement! :heart:

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