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AVM Survivors Network

20 year anniversary approaching

First of all i would like to send my regards out to each of you reading this; if you are reading this that means you have been afflicted with a horrible condition- but as you can see on this site- you are NOT alone!
I am not one to use sites, discussion boards, or even facebook for that matter, so this is something outside of my norms but i feel it necessary for me personally, and i hope that it may help at least 1 other person out there…

History- My first bleed occurred on Feb 3, 1999 when i was 14 and happened as i was lifting weights. My 2nd happened a month or so later the day i returned home from hospital and i went right back in for another couple weeks. I have had something like 15-20 bleeds in all. I have had 2 doses of radiation (max allowable), something around 10 embolizations, brain surgery (about 5 1/2 yrs ago) to remove what was left, and a subsequent stroke following the brain surgery.
Since then i have been doing my best to live my life, but it has been very difficult. Physically the only thing that i have lost is partial eyesight out of my right eye - maybe 35-45% loss. BUT the physical is not where my problems lie. I still have headaches every single day of my life, though, they have definitely changed thru the years. I was on pain medication for well over 15 of the last 20 years, only coming off of it within the last year. Basically i got tired of the side effects… which leads me to medications, what they did, how they worked (or didnt work), and side effects i have experienced.

Medication: So like most of you i have been on a plethora of meds. pain meds, blood pressure meds, anxiety meds, and another group of meds which the name escapes me (depakote, topomax, and many others in this group of meds). Last ones first: depakote, topomax, etc - I HATE THESE MEDS. Doctors kept telling me that these will help, or if one doesnt, the next will. Well that is FALSE - remember they call it PRACTICING medicine for a reason. Every one of these meds made me a full on zombie, i couldnt think, my coordination was gone, it felt like pure evil. Therefore, all the doctors could do for me was keep me on painkillers for year upon year and about a year ago i got to my wits end from taking narcotics constantly- I just could not think correctly and i missed my brain, so i made the decision to go off of them entirely and try and find other avenues. What i ended up doing was trying marijuana to help out ( I have tried CBD too but with ZERO help). I know there are many contradicting opinions on this, both for and against, but i was willing to do anything at that point… and you know what this HELPED! For the first time in my life i actually felt relief!!! Problem is i live in a backwards state (Indiana) when it comes to this topic. It is highly illegal here, but relief is worth the price to me and i will never look back. Another thing i just recently found were natural remedies that my professional doctors scoffed at when i inquired about them. Currently I am using peppermint oil, lavender oil, and bergamut oils. There are tons of these out there and i am just beginning to get into 'em, but so far i am CERTAIN that the peppermint oil helps more than any of those depakote/topamax ever could have. I am getting actual relief for the first time in my life!!! Seriously! The marijuana keeps me relaxed- but with me personally, an actual boost in energy too! I dont feel stupid like narcotic drugs (vicodin, lortab) made me feel. When i get headaches i apply oils to my temples and neck and get quick relief. And of course i still have to take blood pressure meds.

Work: This may be my biggest struggle to date (other than headaches obviously). My whole life i have been a hard worker, always the best at every job ive had, not bragging just stating a fact. But this fact has made it worse for me because i will work too hard, ignore side effects of doing so, and eventually wind up in the hospital (I still end up in the ER once a year or so to get morphine shots). So because of this I havent worked in over a year, i have no insurance, i have no money, i still am forced to live with my parents on our farm. I HATE IT! I just want to be able to make money and support myself and live as normal a life as possible- but apparently that is not in the cards. All of this has led to an extreme anxiety problem… been a struggle just to put this into words. BUT that is what life has given me…
All of you out there who feel the same or similar ways- we arent alone! I will try to be proactive on here, my new years resolution. If i can do anyting for anyone i sure will. My best wishes to everyone on their road to recovery. They say a recovering alcoholic is always a recovering alcoholic, well recovering from an AVM is the same i think. Take it one day at a time. Do not get overwhelmed. Try not to stress for it only makes everything worse, find your center. I love ya all.

-Cody J
PS - Find a hobby, skill, etc - something that makes you happy and pour your focus into that. When i was recovering from the brain surgery 5yrs ago, and recently out of the hospital i found mine. I would fall asleep on my balcony and one nite i witnessed a red fox coming onto our property (they are pretty rare out here nowadays). As I watched that wild animal i became enamored with it. 2 years later when i was healthy enough i adopted a silver fox pup. I have poured my energy and love into that little turd of an animal. I would not be where i am today without her in my life… just some food for thought.

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Cody,

It’s good to hear from you and I think you’ve got plenty that you can offer others in this community. I’m very lucky that I’ve not had a bleed and I’ve got away with just one embolization so far, so I can (and do) encourage people in a similar situation, that actually we all arrive as scared as I did, post diagnosis.

However, I don’t know about the long game yet, or a stroke, so there is plenty of opportunity for you and others to play in that space.

And I prattle too often. It is good to hear diverse voices.

I agree a hobby is a useful thing to stop us focussing only on our AVMs.

Very best wishes

Richard

Hi Cody:

Thank you for your post. My AVM journey has not been nearly as hard as yours, but hard none-the-less. I so appreciate your post because it helped me shorten today’s pity-party brought on by a comment my Husband made. I agree with what he said, but I didn’t appreciate the way he said it! Some times I think he forgets I have the AVM and he is my AVM-ride-or-die helpmate! And … he’s a great helpmate! I pray your journey gets better & easier and kudo’s on adopting the silver fox pup. Wishing you Prayer & Patience because it works.

Sharon D…
Sharon D…

Congratulations! It is good that you have made it 20 years. Excellent time to take a break and think about what you are doing.

And, I think I’ll take my own advice. I am approaching my 30 year anniversary. First problem is to find the actual date. It’s March (or April) 1989 that I had my crainiotomy. It was the early days for this type of surgery. Mine only took 26 hours. It will take awhile to find the date.

But, I’ll take a day to hide from the world and think about what has happened and what I’d like to do. It’s a miracle I’ve lived this long (as you all know), so I want to think about what I want to do with the time I have left.

I meant this to be a message for you. But, you’ve given me ideas…

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My AVM ruptured on June 3, 1973. I am still here and living my best life, as Oprah would say. I was 16 when it happened and am now 62. After all of the PT and OT, I went to work. At 18 I moved out into my own place and never looked back. I stayed in touch with my neurosurgeon and had CT scans and whatever else he said I needed. I have a daughter and a granddaughter. My life has been good. I am just glad it happened to me and not any of my sisters. Most days I feel pretty normal, sometimes a little tired. Old people get to take naps-lol. When I was in my late 50’s I had to go on disability because I can not focus long enough to do my old job. The people at the other end of the table in my hearing saw my CT scan and granted it in less than 10 minutes. I am so glad I was able to work as long as I did. I am rambling and will stop.
God watch over you all.

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Thank you so much for sharing your words here and heres to another 20 years… God bless!

im sooo terrible at keeping up with this stuff. thank you all for ur words. everything works out as should. the universe is an amazing place we reside. every action has an equal and opposite Re-action… im still waiting on that karma to fall my way- but it will.