Possible avm after cerebellar decompression

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I'm not even certain where to begin so I'll just try to touch on the main points. I am a 29 year old female and I started showing symptoms of a chiari malformation when I was in elementary school. I wasn't diagnosed until my senior year of highschool, I believe because my family doctor new the women in my family had migraines, so he just assumed I was milking them for attention, because even migraines wouldn't be that debilitating and keep me in my room for weeks at a time according to him. His exact words included the phrase 'teenage angst'. Turns out I had chiari. I have since had decompression surgies done twice, the second of which they were supposed to cauterize the tonsils. I have also had medical issues with endo and pcos, again with doctors who prior to the diagnosis made me feel insane for questioning what didn't seem right, and basically telling me that I was just being a wimp, right until they find whatever medical cause that turns out 'Oh, I guess you weren't faking after all.' I guess it's easier to assume that since I stayed home and gritted my teeth through a 4 day long csf leak after they removed my stitches after the first surgery, that they can't be that painful. Incorrect assumption.

I'm giving all this backstory hoping to give a little insight to my current state of mind. Last week I tried to make an appointment with my gp mister teenage angst, (Yes, I am in the process of finding a new gp) who was out of the office, but I needed some meds refilled so I saw his nurse instead. He could tell something was off with me besides just needing my sleping pills and immitrex, so asked me what was wrong. I told him that I was having problems with issues I had noticed all my life, but the last few months have gotten far worse. I used to occasionally get head rushes when I stood up, that I knew everyone got from time to time. I assumed the pain that feels like a knife stabbing through the top of my head if it was too strong was normal also. It used to only be when I pushed myself too far, but now when I cough to clear my throat the room spins. I had a respiratory infection a couple of weeks ago, I thought maybe it was all related, but the symptoms have persisted even after the infection is gone. When I stand up the dizzyness is followed by a pulsing in the base of my skull, I can also now constantly feel my heartbeat in my head, when before in was only when I strained or exhausted myseld. Also for the last year or so I have had issues with random nausea out of nowhere, at all times of the day. (Which I have seen his boss for 3 times, the last time he told me he would give me some protonix, and an endoscopy to follow if it didnt help. A week later I still had no meds, and my doctor had forgotten we had even spoken about it. The nurse laughed at his absentmindedness when I called to follow up) He told me that the symptoms I was describing sounded like patients he had in the past with avms, so he set me up for an MRI tomorrow (our favorite pastime). I asked him if there was a higher instance of avms in those that had chiari, he told me yes. He did not know I had chiari even though he was looking at my chart, I assume there was no metion of it since he seemed confused while looking through it. I wasn't too concerned though because I thought avms were strictly congenital, and surely one of the dozen mris I have had would have shown it at some point. Then I did some research, turns out they can also form, aren't always just there. Then I thought back to my last MRI 6 years ago, the one they couldn't finish because I couldn't lay still enough because of the rushing and pain in my head. To be honest at the time I was so depressed and tired of dealing with this crap when my neurologist didn't request a new scan I left it at that and went on with my life, or tried to.

I've tried to push past, accept my lot in life and deal. Sometimes I can get a few good weeks, at best a few months. I'm not really sure what I'm hoping to find here, maybe just some empathy. Every member of my family in the last few years has told me at one point or another 'I know it's hard, but you have to do this regardless.' And I know they are tired of dealing with this like I am. But I can't explain to them what I don't understand. I can't tell them why well before I was ever diagnosed with anything I would have a meltdown anytime anyone touched the back of my neck and head. It's hard to get someone to believe when you tell them 'All I knew when I was younger was anytime I got too excited, happy, or mad it felt like my head would explode, so I trained myself to stop feeling emotions like you should.' Like I can't get them to understand that the reason I haven't been able to really leave my bed the last few months is because it's like my body is telling me all these plans I have, simple easy damn things, go to work, clean the kitchen, do my laundry, anything involving reaching, bending or twisting, I stand up to get started and my whole body starts to shake. I take a shower and turn to rinse my hair and have to catch myself on the wall. So I've been using my endo as an excuse, because I at least know my mom had that and can understand a little. I am not lying about what I'm feeling, but I lie when I say that's the main reason. Physical pain I can handle, but this I can't get through by sheer force of will. My life has been a series of fights to get people to listen, and in truth I get that. You don't tend to believe someone who is telling you something, but they can't explain the how or why. I guess I was just hoping by now my record would speak for itself. I'm like the grumpy man that hates going to the doctor unless I feel like I'm dying. But from looking at the volumes of my medical files, I guess doctors assume I'm just a hypochondriac (never mind that every series of tests finally led to a diagnosis that has required surgeries). The sad thing is, I'm actually starting to feel like one.

I apologize, I had no intention of starting a novel but I guess I needed to get that all out. My question now is has anyone else here received an avm diagnosis after chiari? If so, any particulars I may want to know on what to expect going forward?

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6 Replies

  • Posted

    Please check out the Institute de Chiari in Barcelona, Spain.  The 45 minute surgery there got me out of bed after 2-1/2 years, whereas my Chiari decompression surgery gave me 4 weeks of false.  I am back to raising my kids, running the household, church and HOPE! 
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  • Posted

    Three US neurosurgeons perform the surgery: Dr. Heffez in Wisconsin, Dr. Bolognese in New York and Dr. Henderson in Maryland.  I chose Dr. Salvador in Barcelona, Spain because he reasearched/discovered/invented the surgery in the 90's, and because their communication and website is such a thorough instructional tool.  Additionally, in the US the process takes about 1 year to have the intitial meeting with the neurosurgeon, plus the pretesting then the actual surgery.  The whole process took about 6 weeks for the Spain route.  God Bless, and THIS IS NOT YOUR LOT IN LIFE!

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    • Posted

      As I said I have already had surgery twice, Dr. Heffez is actually who performed my second surgery. Unfortunately with all the changes to our healthcare it is almost impossible for me to get back to see him, even though he's already had the pleasure of playing around in my cerebellum once, and I was very happy working with him. Couple this with the fact that my local neurologist is no longer practicing, and I feel like I'm just floating in a sea of medical bureaucracy without a tether.

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  • Posted

    Hi Alisha,

    I fully understand how you feel - it is very hard to deal with the condition let alone the peoples around you do not understand it.

    First thing first - (I assume you are in the UK) as mentioned GP - contact the organisation called Ann ROy Trust - get your gp to refer you to Dr G. Flint in Birmingham Neuro Hospital - he done decompression each week ..and have around over 90% success rate.. but listen to your body - do not pay attention of others, stop winging..deal with it..if you need to rest just rest, makes sure you drink plenty of water  (2 ltrs) somehow that helped me in the past - I troubled with my cndition I could not even left the hget the right surgeon  - fainted very often..its just unbelievable ..but the soonest I woke up from DR FLint surgery - I was fine - I am now pain and drug less

    Be positive - praise your creator each time - thanks for this experience - because once you really get that ree-done with the right surgeon you will be find.

    God Bless

    THINK POSITIVE - ACCEPT YOUR CONDITION - LISTEN TO YOUR BODY

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    • Posted

      Unfortunately I live in the US where our medical system seems geared towards making it nearly impossible to get the help you need, then punishing you for not getting help sooner. That is if you can even pay them to begin with.
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  • Posted

    Dear Alisha,

    It does not matter where you are - you surely have an organisation who policing the health care system..? can you not find the right channel and find out if they can help you with - go to chiari charity organisation like we have here called Ann Conroy Trust even though they are not able to take side but they are significantly importatnt to advise where- what - how to do when needed help...

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