Well i don’t really care if anyone reply’s to this or not but i can’t really rant to anyone in person so i’m ranting on here lol first time for everything
The title basically says it i am just very fed up with feeling like a medical pincushion
I’m just so done with not being able to walk, run, dance, drive a car without being in some form of pain or discomfort
I’m also just ticked off the more and more i learn about AVM’s the more i learn most of my health issues are connected in some way to an AVM and it just sucks that somehow hundreds of dr.'s, nurses, technicians, etc. never made that connection over the course of 20 years
I fed up with how most of my dr.'s ogle my medical file like it’s some amazing, crazy, incredible, out there, bizarre, strange puzzle that they have to solve (or they don’t want to touch it with a ten foot pole)
And i get that they probably don’t mean it badly but, it just sucks that i have to actually remind them that i’m still there in the room sometimes
And now i was told yesterday that once they get the final okay from my insurance my surgery will be scheduled for about the first week of august. Which is great and i know there are plenty of people on here who either can’t have surgery or they have to wait a heck of a lot longer than a month. But honestly a month seems like years away
And i don’t know, I’m horrible talking about what i’m thinking/feeling so i guess i’ll leave it at that
Hello there !
I am so happy that you are getting the care that you need and deserve. This disease is something that no one in the world should have to suffer through no matter how big or how small. I will be hoping all goes well for you.
Being, 18 and 15 at time of diagnosis I know how you feel. I went from living a life of a varsity athlete, to a girl who runs through pain and pure exhaustion. It will get to a point in your life where you will find some sort of sweet relief from your pain and discomfort. I’m not going to lie and sugar coat it for you. I haven’t had a day without discomfort since my AVM was found, but I have found things to overwhelm my pain with joy, and happiness. I have surrounded myself with people who understand my pain, and discomfort. A best friend who will pop in a movie, bring me oreos, and hold heat compressed on my leg when I am sore. Another that will go out to musical fests with me and give me a piggy back ride when it hurts to walk for longer periods of time. Positive people can make such an influence
I know the pin cushion feeling as well. I have had an AVM a cancer scare. I also have had a fatty tumor removed from my neck that a grown man could fit perfectly in his hands. Biopsies, needles, MRI, CAT Scans, and crying to nurses later here I am. You will find your peace I promise.
-N
I know how you feel about being a medical pin-cushion… I hate needles and fought against needing contrast dye for my MRIs. Then when I aged out of a children’s hospital, I went for an MRI at another hospital and they didn’t even request that contrast dye be used!!
I also understand how it feels to be objectified by doctors. While recovering from the Gamma Knife, tons of strange doctors would come in and look at my angiogram scars and ask me tons of questions, and it was very embarrassing, especially since I was only 16!! Because I was treated at “a learning hospital,” the doctors would be followed by many students, and I was so frustrated that I said, “Get rid of the other people–I am not a lab-rat!”
I wish you all the best, and I hope you can at least find some comfort talking to other survivors here!
KoalaLove, a good rant is great for the soul! I think you have every reason to be frustrated, and I’m sure after the length of time a month does seem like an eternity. My wife is a nurse and her friends in the field were always really interested in my AVM, bleed, treatment etc. with lots of questions but my time of poking and prodding was short so I can’t imagine 20 years of it. I look forward to hearing your surgery date and how it goes.
AMEN, agree 100% !! Please rant rant rant!! Finally someone like me, I’m dealing with the same cattle line, Dr to Dr, head scratch to head scratch, O that’s odd, never heard that before, been to so many neuro’s and have done so much research they pull out a note book and start taking notes, who’s the Dr here?? My job is my user name, so I knock on your door and say I’m “practicing” my trade, I wouldn’t get past the door, I’m with you, totally feel like a pincushion lab rat, and I’m going on 30 yrs POST surgery, personally I do better taking care of my self, when I try and fill perscriptions I’m treated like a drug abuser/addict, did I mention I’ve been doing this 30 yrs, thank God for medical marijuana, now I’m ranting!! Thanks for getting me going, people need to here it, if they like it or not, they don’t care cus they don’t have to live with/ deal with it, as long as the insurance clears, your in!! it’s a total joke out thier and a complete shame,
Hi wow well you are the closest person in age i have met on this website
(I was 19 when they found my AVM and turned 20 about a month ago)
I can’t really relate to the athleticism lol i was clumsy and unable to keep up right
from the start my sister was an athlete though so i was always at soccer, volleyball,
and basketball games
Anywho that is very good advice
Advice that isn’t exactly applicable to me but none the less i hope it is someday
I say not applicable because life circumstances (moving a lot, health issues, being in
a hospital/home sick a lot, etc.) have prevented me from having/making friends, and
being in situations like that
Though i am very glad you have such friends having just one good friend does
wonders
I can relate to the cancer scare as well: doctors thought i had brain cancer when i was a baby and breast cancer/cancer throughout my rib cage (there was a name for it but i
honestly have no idea now i’d have to look it up in my medical file )
Anyways i did not have cancer just some very unique health issues but even so the
tests, conversations about preparing myself (since they were pretty sure i had cancer)
are enough to freak anyone out
Thank you again for the reply and the wonderful advice
I hope things are going well for you
“a good rant is good for the soul!” I’ll try to keep that
in mind in my family it’s not really looked down upon so
much as not promoted to speak your mind, say what you really
think/feel, etc. So it’s nice to have this website
Well it would probably be less frustration if i had only been dealing with
the AVM issues but throw in all my other health problems and that’s what
usually does me in (in terms of frustration/anger).
yes i can very much relate to your experiences
I try to stay positive, even in the midst of my frustration/being upset
Though i will definitely be the first to say it is really not easy
but it is a life goal to never become an insufferable cranky lady with
a bunch of health issues
So i’ll keep trucking along
Great attitude and approach!! I’m with you, be strong,positive and never
give up!! Only you know what’s best for you, thanks for your reply, I’ll
follow your advise if you follow your advise, lol, sometimes that’s the
hard part, you caught me at the perfect time, yesterday was my once a
month Dr day, re up scripts, get blood drawn, cattle line at acouple
different docs,ECT,ect, so when I finally sat down and saw your post,
well yeah, kinda got fired up!! like I said been doing this along time and
I’m so over it I just had to add my two cents, you are surely not alone,
thanks again, I was expecting alot of negitive feed back, take care and
never give up,
Thanks
Lol yes it can be hard to follow our own advice sometimes
I don’t know, maybe if we just keep reminding ourselves too.
We’ll get it right eventually
I feel as long as I’m not a cranky insufferable lady even if my
day was horrible, I’m in pain, feel awful, etc. I’m still doing okay
Now if someone ever tells me i’m an insufferable person then,
I’ll have an issue
YES!! Your right on track, not eventually, I’m here to re affirm you are
already right!! It’s when someone who doesn’t understand avm’ers says
something negitive we start doubting or self’s, that’s why I try very hard
not to judge others, just remember people really don’t have a clue what we
deal with on a daily basis, I really enjoy your encouraging/ positive
post’s, I usually tell em, at least I have an excuse, what’s yours??
Just keep doing whats best for you,. KOALALOVE!! carry on, be strong
@KoalaLove - You are so right to be pissed off - Hopefully we can use swear words on here.
I am so glad they are finally addressing your avm but so sorry they took so long to figure it out.
I started to have health issues very young and have also had a few misdiagnosed things like at 19 they told me I had leukemia -
Then when I had my gall bladder out - it was one giant golf ball sized stone they even kept it to show their students.
So used to hearing that is rare…that is strange…that cant be…you look fine…oh if you had that you would be crying…
When I had a massive stroke at 43 a few years ago which caused my avm to form…seven months later I mentioned some symptoms which my stroke doctor said You cant have another rare thing…HELLO…Yes we can! So I told him Dude you are just getting to know me…my family always has the rare weird stuff. I am mostly Italian but my mom has some American Indian and I believe that is were all my weird health issues come from…
Every single neuro and radiologist and some other surgeons at Stanford have all seen my brain scans due to my stroke being rare…then 2 years later my sister got the flesh eating virus and almost died at Stanford so we are known as the Stanford sisters…
At my 1st angio.embolism the fellow dr actually shook my hand and said I was a celebrity. I said they why dont you write something for us fucking patients…
He treated me terribly after my embolism in recovery and did not realize I had another stroke and so I was doing sign language that I was in pain and to get my stroke doctor who is the head of stroke at Stanford. So they grabbed my husband who does not know sign language and did not know I knew - but he got paper and pen and was about to fight the doctor to give me some pain meds…then my husband went to waiting room and my family all 14 broke into the room but they had already transferred me to ICU. I was so mad the next day - my stroke doctor came at 5:30 in the morning - my husband and brother were there and I said where were you and he had no idea what had happen to me…
So that fellow is no longer at Stanford- my medical marijuana doctor who is also a neuro said he is probably practicing in Guam…no offense to Guam…
I tell the doctors all the time no when they bring in a team of students or fellows. I just dont have time or patience to go through all their tests…I try never to go to Stanford in July that is when the new fellows start…I am not sure if this is at all hospitals
Even in teaching hospitals you have the right to say you dont want the fellow doing anything to do. I do that all the time. I have been through too much already to have a mistake happen with my brain…
Sorry for my rant…I have PTSD from the hospital time that my sister was in for her health issues. And my mom is going to Stanford Monday for spine surgery so I think this is all stirring up some anxiety for me.
Just know your rights and start packing for you hospital stay. Get together a play list, and anything else that calms you. It will be here sooner than you think. I had to wait 2 months and it felt like forever.
I am so glad you found this site and only we can understand what you are going through - its tough to explain to our loved ones what we go through every moment…
I wish you the best for your procedure and please let us know how it goes-
Hello -
I am fairly new to this also and agree it is hard to find people that understand (or know what to do) AVM. After 2 years of being diagnosed with a vascular mass, my current doctor just diagnosed as an AVM. Mine is in my leg also and spans from my butt to calf. I can still run and be active and it actually feels better when i keep it up. The doctor said it is helping with the blood flow?? Who knows!?!?!
Any suggestions on doctors?? I seem to be getting the run around. I am seeing someone new next week but in the same group.
Hope you are having a good week!!
Hi Megan
Yeah there’s definitely (from what I’ve found/been told) a lot of dr.'s out there with a lot of different opinions when it comes to AVM’s, vascular/venous malformations, etc. My thing I would suggest is if a dr. doesn’t want to treat it, or wants to do a treatment you don’t think sounds right/isn’t the best option get another opinion. I had two dr.'s say no to treating my arm so far and 4 dr.'s say no to treating my foot, you just have to keep searching. For me I want to be as informed as possible (especially since it seems not many dr.'s are) about AVM’s so I have done hours of research, reading medical journals, etc. I’d definitely recommend it: that way when a dr. suggests a surgical/interventional option you have an idea what their talking about and can ask whatever questions you want to about the surgery. I myself am waiting to have more paperwork sent by previous dr.'s to Dr. Wayne Yakes in Englewood, Colorado who if everything goes to plan will be doing my surgery I hope that helps somewhat Good luck with your appointment!
lol first time for everything
