I was in my local newspaper on front page b/c I have VMs through out my body and there isn’t anything they can do, so I’m having a benefit to help prepay future funeral cost. Saw Dr.
today & things aren’t looking to good. Anyways I get a call from a producer of the show called MYSTERY DIAGNOSIS on the DISCOVERY HEALTH channel. She says they are interested in
doing a show on AVMs or VMs which ever you prefer. They are having me fill out an application that will go over my medical history. I’m REALLY sick but I have to do this. If we can get the info on our conditions out there people will become more aware of these problems. It’s a HUGE step for the VM community! The producers are wanting to speak to people that have had difficulty with diagnosing their condition or if it took a long time to diagnosis the condition.I know their are people who have symptoms of it & it gets brushed off as something else like migraines or allergies or sinuses etc., or it doesn’t always appear on imaging right away(like myself).If we speak up we can change this.If there is anyone that wants to tell their story please feel free to contact me. You will have to give me your background story I’ll take that to Leah(Producer of show), after the show reviews the info. I give her, she will call me & let me know who to give info. (their phone numbers,email,application,etc.) to.Then it will be up to you to follow through with this process.I hope there are people on this site that are open and willing to share their stories to give a chance for us to help people become aware of the problems & difficulties that we all have gone through, or are going through.Even though things aren’t well with me I still have hope that someone is out there that may be able to change things for the better not just for me, but others too!They just don’t know it yet!
Wow! This is really cool. So sorry to hear that you are having a rough time and geez the fundraising for funeral cost is pretty freakin eye opening. That sucks! I mean, I’m glad you are able to be so on top of it and forward looking…but still that must be a really hard thing to prepare for.
We have a member who is going to be involved with something similar over in the UK. And I’ve seen a few shoes on Discovery and TLC and such previously as well. It’s great when we can get on things like this cause it really DOES help spread awareness. The average Joe will totally watch the show, and that is the audience that is so great to reach.
Feel free to pass along my info to Leah. I pretty much have all my info out on my website. https://sites.google.com/site/shalonsavm/
If there is anything I can do to help them out with the show or even needed info, I’m game.
Good luck with everything. And I hope you are feeling as well as possible. Stay strong!!!
We ALL need to help get the information out there to the public… to the (medical and non-medical) ‘professionals’!!! The goal of this support group (as well as any support group) is to give and gain support; therefore, to idlely sit by and not ‘speak up’ is unjustifable and extremely contradictive! Here’s a chance to inform people and improve the ‘odds’ for all fellow AVMers, AVFers, CMers, VMers, etc. now and to come!!! (What a ‘legacy’ that would be… to be involved in such a profound and perhaps historical ‘break thur’ / change for the humanitarian good that potentially reaches not only now but later on as well!) Come on people, let’s show the world what we’ve had to endure and what needs to be ‘corrected’ or instituted! We survived for a reason that is so much bigger than each one of us individually and goes beyond each one of us, so now we must tell the world the story and begin to correct the wrongs that so many of us have felt deep inside… the loneliness, the isolation, the misdiagnosis, the run-around, etc.! We (ANY person on this support site) has it within them to do this because you’ve survived and are working extremely hard to reclaim your life from this ordeal. Always remember: you are NOT alone now and you won’t be alone in doing this either! We are here.
Jessie: You are such a wonderful, considerate, compassionate human being and I pray to God that he does not take you away from us all, as you are absolutely needed here on Earth!!! I beg that God allows us to keep you with us… I beg that God will heal you and restore peace, laughter, and happiness in your life!!!
I am sorry to here of your prognosis. I do agree that we need to let people know about avm’s. My 2 yr old was diagnosed in Jan and the doctors where we live said we need to wait until she is much older to try any procedures. We could tell she was declining daily, so we contacted a doctor in Phoenix, once we got there she was in heart failure, they said she may have lived 6mos-3years at the most. Even doctors need to be more educated on AVM’s. I watch that show a good bit. Good luck with it. If they need more people, feel free to tell them about my daughter! God bless you!
I’m really sorry to hear about you! I give you all my prayers and blessings 
I am only thirteen, I know so much about AVM’s, since I’m thirteen i read this over with my parents and I would love to be on Disc. Channel! Plus i would really love to meet you. I think i would be good to be on the show to talk about people as young as my age could get this too. I’m about the youngest on this site. Just putting my word in. My parents are on full throttle to go on the Disc. Channel because the world needs to know about all kinds of people it could affect.
Hello Jessie & Jason,
I’m so sorry the doctors news wasn’t what you were hoping for, yet I deeply admire your fighting spirit and cheer you on for it!!
Like yourself and so many other VM patients, I too have experienced the oversight for the need of surgery multiple times in my local medical community and would be most happy and grateful to contribute to this important and long-time-coming series.
I am a cavernous malformation (CM) patient presently recovering from my 4th craniotomy. My recent surgery was for the resection of a CM in my right thalamus. This surgery was the deepest (near brainstem), so it’s been quite a challenge!
This can’t be an ‘easy’ project for you, but again my cheers and applause for your ongoing spirit and to be heard!
Take care,
Patti
http://www.aans.org/Patient%20Information/Neurosurgical%20Patient%20Stories/Patti%20Gilstrap.aspx
Cindy,
Well said!!! You go girl!
Patti
HI, AS SAID BEFORE SORRY TO HEAR ABOUT WHAT THE DOC. HAD TO SAY, U WILL BE IN MY PRAY’S. NOW AS TO WHAT U ARE DOING, I THINK THAT WILL BE GREAT I WATCH THAT SHOW ALL THE TIME AND I DID MAKE THAT SUGGEST A FEW WEEKS AGO THINKING WHAT COULD WE DO TO MAKE DOC. AND SSI MORE AWARE OF OUT CONDITIONS, NOW U WILL I HOPE U GET A LOT OF SUPPORT FROM EVERYONE ON SITE THAT HAS HAD THE SAME TROUBLE AS YOU. I WAS TALKING WITH A LAWYER THE OTHER DAY AND SHE REALIZE HOW RARE OUR CONDITIONS IS AND HOW MUCH TROUBLE WE HAVE GETTING SSDI BENFITS. I WILL FOR ALL THE BEST
Thank you, Patti. I read your article that you listed below. So proud of you!
Likewise Cindy.
We’re all survivors doing the BEST we can. Being active, supportive and advocating patients on this website is one of the BEST things we can do for ourselves and for others.
Patti
Thank you for helping get the word out about AVMs. You are making a difference in this world by your willingness to help our whole community. You will be in my prayers. My story probably won’t help, but I’m willing…started having migraines at age 6, bleed this past April was the first time I ever had a CAT scan to discover the AVM at age 49. Fortunately, after several miracles, I survived and am recovering.
i wish your situation isn’t so helpless…but i pray for you and i know you you will make a difference
i’m new here & my story is long but i dont wanna bore everyone one with it.i was 15 and 6 months pregnet when i went to c my obgyn.i told him about my head ache getting worse & how i cant eat or sleep or if i move my neck the pain gets unbearable.the blood vessels in my eyes & lids were broke from being sick.i couldn’t stand upright from the pain.the doctor told me “i dont have time for you anly your baby”.so i went home & every got really bad.i went 2 the ER. i waited 9 hrs to see a doctor.no one came .i went to another ER.they gave me 15 mins to live that night.i made it though that night but they my head bleed for weeks and they just keap telling my mom i was going to die.then again a few years agao thay found another a.v.m in the middle of my brain.they cant take it out.
For patients wishing to directly contact the Discovery Channel regarding this important topic of vascular malformations, Discovery Channel’s Mystery Diagnosis’ Casting can be contacted @ 1-866-■■■■■■■■ (toll free) or @ ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■.
I went to my Doc. when I was 20 years old and told of headaches, they said it came from the fumes in my job. I went and told of my numbness in my right hand, it is my job and probly carpal tunnel. For years I would mention my ailments and at first the responce was my job and later my age. Thank God I feel and had to get stitches at the ripe ole age of 49!
I’m 51 years old and was diagnosed with a AMV in my brain in May of 2009. I’ve had symptoms all of my life, starting as far back as 7 years old. I would be sent home from school often due to intolerence to hot weather, I would become faint. I passed out at age 13 and the doctors couldn’t find out what was wrong. I’d been seen for headaches diagnosed migrains, then it was blamed on depression in my teens. I had mild seizures that started during my first pregnancy, diagnosed as epilepsy. Luckily I had a c-section with both pregnancys or I might not be here. I’ve had bouts of vertigo, I’ve been to the doctor because the pounding sound in my left ear caused me to loose sleep, and bothered my hearing. It was brushed off. It took me going from my GP to my ENT and back again a couple of times from early 08 to mid 09, then finally my GP sent me to a neurologist because I kept complaining of numbness in my face in addition to pressure in my head. I literally told my doctor that I felt like there was something in the left side of my brain that was going to implode. The neurologist did a MRI with contrast and was suprised by what he found as he first thought it was trigeminal neuralgia. I was treated at Loma Linda in September of 09 with proton beam radiation. My first MRI after this was in Feb of this year, no changes had occurred. I just had a second MRI/MRA done a month ago and I go this December 5th to see the results. We will see. I do not feel normal by any means. I have sharp pains in my head, I’m light headed and dizzy sometimes and I still suffer with facial pain and numbness. The neurologists are not very responsive when I tell them this. I feel as though I’m just a subject to study. I know and appreciate how blessed and lucky I am to have received the treatment at Loma Linda, but as I said I still don’t feel myself. I’ve changed and I don’t think I will ever be the same. But I will not give up. I’m so happy that someone is taking notice of this condition. It needs to be studied even more than it is.
My name is james I too had headaches for years, but in 98 I passed out at work dr. sent me to minor emergency. After A cat scan they spoted something and sent me to a nuero surgeon. I had several MRIs. Dr. said I had A AVM, it was to deep to operate they would do to much damage. I was sent to a oncolgist. She told me I was 1st person she had seen that had not stroked out. I had X knife proceedure. A few mos later I started having memorey problems that I still strugle with today. I found out a few mos. ago my AVM was gone . The new Dr. I have now says my AVM is gone and i am cured but I still have alot of memorey problems I can take a few steps and forget what I was going to do.
it is called lymphangio -hemangiomatous lesion with arterio-vnous malformation and shunts with less likely differential of Klippel -trennaunay syndrome/parke -weber syndrome vs maffuci and macrodystropia lipomatosa around my right knee .
it is complex and rare type of vascular malformation
My problem can be treated by embolotherapy combined with sclerotherapy ie embolotherapy.
other is transcatheterembolosclerotherapy .This are best option for treatment for my problem .It is quite expensive and needed really need one of competent team to deal with this advance AVM.
It's really very common for misdiagnosis of AVM's. I had migraines since I was six, fainting spells and a speech impediment - no one ever thought to give me a CT scan. Without warning, mine burst and I came very close to dying.
I'm sorry to hear that yours is not treatable. I will keep you in my prayers. I also had a near death experience when my massive brain hemmorhage occurred. I will tell you that it is magnificent on the other side - so please have no fear. I appreciate what you are trying to do for the AVM community in getting the word out.
I am also being interviewed for a show on the BIO channel called "I survived, beyond and back". Doing it for the same reason you are - to get the word out about AVMs.