Of course. I agree completely and apologize for giving the impression that I advocate haste and inexperience. Had I been less hasty with my first procedure, I would probably still have feeling in my skull, although the neuroradiologist who did the first procedure is highly regarded and very experienced. My points, hopefully better expressed this time, were that Mary 1. should not ignore the diagnosis, just because of finances and 2. IF treatment is indicated, she should seek alternatives if the first surgeon she talks to won't treat her because of her financial situation. Every AVM is different and every patient's situation is different. Many decide not to treat and live long and healthy lives. I just don't want her to give up aggressively addressing the situation, thinking nothing can be done but hope for the best.
Thanks for clarifying, Susan -- I completely agree. :)
And, Mary, I hope the Affordable Care Act can help you get insured:
You poor precious young lady...my heart goes out to you. Is so horrible that you're suffering by having an AVM and is an absolute tragedy that money prevents you from having the much needed surgeries/treatment.
I was "blessed" because we have health insurance and no serious money problems, but it has wiped out all of our savings and future investments gone having to pay medical bills that just never end. But most of all my fist sized AVM was intestinal...but it did cause me 2+ yrs medical nightmare before it was found and fixed...all by accident. Was an intestinal AVM that ruptured and healed over numerous times, but each rupture caused me catastrophic bleeding.
Being severely anemic, w 5.1 hemoglobin was a nightmare having weekly blood transfusions and hundreds of needle pokes...I'm needle phobic....just the smell of alcohol sends me into a panic. But thank God that nightmare is over.
If we were wealthy, I'd offer to pay for your surgeries...but we're just lucky to take care of ourselves as my husband suffers tongue cancer. He was 35 yrs old when his nightmare began. Doesn't touch tobacco or alcohol like what causes that type C.
I don't understand some wealthy people spend their money on jewelry, cars, vacation villas they rarely visit....but wouldn't even think of helping a fellow human being.
They will have to answer to God on Judgment day for their spending on self, not helping others.
Lets pray you will find a way to have the surgeries and treatments needed to live thru this...not just survive, but live life to its fullest.
There are many doctors who will offer their services at no cost...perhaps you can get
help thru one who has compassion and willing to help you.
You're young and healthy otherwise, you've got your whole life before you!
If I could take on your AVM on myself, I would...I'm 62 and ready to "go home", I mean if someone's got to have this AVM, let it be someone old and tired, like me. I don't have any loved ones who will miss me or even care. Just my dear husband who's also suffering catastrophic illnesses...we both want to just be done with this life as its been filled with too much pain, suffering.
I will pray that you will find a way.
Be well! Cheryl Rae Young, Boring Oregon
Crytears, please call the Hotline if you need to talk: 1-800-273-TALK (8255)
I also suggest you seek counseling. When times are tough, sometimes it takes a professional to help us fight the blues.
Thanks...some days just seem to be overwhelming. I know I should be very thankful that my AVM was "just" in my small intestine....but that's only half of my medical issues and I feel like life has handed me a raw deal...my real initials are CRY...and I've done a lot of that since I was born, unwanted and suffered serious abuse, physical, mental, sexual abuse was an every day occurrence. Is like God hates me as well.
But when I feel sorry for self, I feel ashamed when I read sad stories like here.
I have so much to be thankful for and truly am blessed with so much.
But it would be better not having one moments peace.
We seem to go from one blunder to the next...the shoe is always falling off the foot on daily basis...people who know us always wonder what we must have done to piss God off, many say we're cursed....that because my father cursed me for my ruining his life by my being born....anyway...if/when I call talk to counselors, is hard having to repeat the tragedies I suffered to explain why I feel the way I do.
I wish there were a way for me to forget all this heartache and move on...sadly, I've never been able to forget the bad stuff as there's not many bright spots or good things happening to me and my husband.
Its like we're in a bad game of "Whack'a'Mole"
Thanks for caring/sharing the hotline #...I'll give them a call later today.
CryTears
Stay away from the folks who suggest you are "cursed" and are being "punished by God," Crytears. That doesn't sound particularly Christian to me.
Life has suffering, yes, and many of our members have had more than their fair share of it. But it also has joy. Seek out joy, and hold on to it. Surround yourself with others who do the same, and stay away from negative, hurtful people.
I am 58 years old and AVM was discovered in February, hope it helps
Dear Mary....Since most of us have had AVMs since birth, I can attest to 59 years with a brain AVM 5 x 6 in size. I have never knowingly had a bleed. I did have symptoms with balance and blindness in the right sides of both eyes. Stress or overworking causes problems. So please research and find the foods that will best benefit you and get plenty of rest. The body can do amazing things to heal itself if we take care of it. I wish you the best! I was a teacher and coach! Now enjoying retirement. By the way you look like my granddaughter Chantay! Best of life!
This post made me cry. There is always something to be thankful for. We live with these darn AVMâs but we choose happiness as a way of life. Donât give up. I am older than you and each day wake up glad to be here. Having lost my twin sister two years ago to brain cancer, I do not take. Single breath for granted. Find joy. It is there waiting for you.
I had my AVM embolized three years back I become paraplegic after that there was not even sensation below my waist. But thing improve over time now I can feel my legs and walk without support on flat surface. I got inspiration from âBhagavat gitaâ an Indian sacred text. In that lord Krishna advise Arjuna on an occasion. Think of time as a straight line, you donât know when it started and when it is going to end. You know only small part of it (between a point your life started and a point it is going to end) it will go on with or without you. What really important is the karma, do what you are destined to do. (Even if you worry about your life tomorrow you are going to worry about how much you worried about it, it just doesnât make any sense.)
These words help me overcome my depression (still partially) hope this will help you. May god bless you.
I am from India. My Nephew was working as Programmer at Virginia and had a AVM bleed at 10:30 PM (10th November 2010). His friends called an Ambulance. The local clinic doctor detected symptoms of hemorrhage and called for helicopter Ambulance and he was rushed to Critical Care Hospital at Richmond,VA. At Midnight a expert Neuro Surgeon was waiting and performed surgery immediately to stabilize the patient. He was in ICU for 3 months and luckily recovered. 25th March 2011 he had a Gamma knife surgery at Baltimore hospital and we flew back to India. It is now 3 years and he is 98% Ok. Right eye vision partially affected because of damaged brain cells. He had worked in US for 12 months + 1 week and so his AETNA Insurance covered his full expenses. (Probably $15,000 x 120 days . He also got Long term disability payment by AETNA for a period of 12 months till he started working again. Thanks to Helicopter Ambulance, Dr. John Reevey Cantwell : Director Critical Care Hospital - NeuroSurgery Richmond,VA. Today Giridhar Raghothaman an Indian is breathing and leading a normal life. Emergency treatment in US is best. No questions asked. They ask for insurance details only later. If Insurance does not pay then Government pays to the Hospital. No patient is pushed to the streets.
Even at India we have NIMHANS - National Institute of Mental Health and Neuro Sciences at Bangalore where Free treatment is given for the Poor. Are there no such Government Health Hospitals specialized in Head Injury cases who provide Free treatment for poor with AVM in Phillipines? Please talk to doctors in Government Health centers at Philippines. You should get a solution and meet Neuro surgeons at Government Hospitals who can treat you free. If you have severe headache and vomiting you should be rushed to emergency Immediately.
Stay with close friends and inform them that if you have severe Headache and vomiting then they should rush you to Emergency in a Neuro Surgery Hospital. Take preventive medicines for Epilepsy by consulting a Neurologist.
Kindly please please go and meet:
Gerardo Gap D. Legaspi, MD
Neurosurgery
24 years in practice
Clinics:
â˘
Philippine General Hospital, Manila, Metro Manila
http://www.thefilipinodoctor.com/doctor-details.php?doctor=MjAwMTE1NjQ0
Also : meet Neurosurgeons at : http://pghneuro.wordpress.com/staff/
www.pgh.gov.ph - Philippine General Hospital
http://en.wikipedia.org/wiki/Philippine_General_Hospital
The Hospital will have Foundations who provide Financial Assistance. Talk to authorities there and explain to them your Financial difficulties.
Hope to hear from you after you have got help from Neuro departments at Government Hospitals at Philippines.
Hy Mary I hope your day is better today, I have a 4.5 AVM and radio has been suggested but I can decide what to do I am very worried if I should or leave it be, mi headackes are not to bad, the AVM have been found by change, I know that I have the option and still cant decide, but do wish you that you can make the best decision and yes we live long . so in a way it looks like that God does provide and he will help us to decide the best option, hope it is of some help to you, very best wishes
Hi sandeepg, you are very courageous in your thinking, you become paraplegic after been embolized that is why I am holding back on radio, I am also having depression which I believe all of us AVM sufurers will understand, all of us worrie but you give good advise
I am glad you are doing well, I am also 58 and never had a bleed and leave on my own, have you had any treatment? but I do have headackes specially when I refer to the AVM I am trying to handle depression without medecines and cant make my mind to have radio treatment or as neurologist say I can try to forget about it as I have less of a risk because of my age, you talk about foods, can you please advise me how to so research on them and which are to you knowledge more helpful, as I cant decide my headackes get worse, the AVM is on the left on top of the ear and 4.5 cm. I am very interested to know how you are handling it. Hope to get your advice, regards and thanks for your knowledge.
Hi
I have an AVM and a VM in my brain. I am 28 years old, I have had 2 ruptures, the first the hen I was 15 and the second when I was 16. After the second one I was hemiplegic, with loss of sensation in the whole right half of my body... half of my face, half of my lips..etc. I started walking again after a few months. About 6 months after the second bleed I went for radiosurgery... It is now 13 years later and I haven't had a bleed again...
I am glad to see that other AVM survivors have problems with depression as well.. Does any of you struggle with short term memory loss?
It is not that I become paraplegic after embolization, I can walk slowly when I went to see doc but I have to wait till evening to get his appointment. by that time my legs begin to become numb. I was taken in a wheelchair when my chance came. I had my embolization 2 days later. I was lucky it didn't burst.
Hi
Yes I do struggle with short term memory loss, but if I insist It comes back little by little by I have to retrace my steps, but I have not had radio as yet as I am so worried that it will be worse as I had no bleeds. Are y feeling better?
Marina, I'll just toss out my experience with embolization for your consideration. I had had no bleeds prior. I had mine done during an angio. They inserted a coil and Onyx in a large fistula and (NIR's words) "scrambled" the balance of the AVM that he could reach. More AVMs and another large fistula were found and removed surgically later, but the initial embolization probably prevented a serious rupture, according to several docs. The only negative I had occurred because of the "scrambling", during which he severed a nerve root affecting feeling in part of my skull. It's aggravating, but not debilitating in any way. (Mainly have to be careful when drying my hair or I'll burn myself unwittingly.) All of this is scary. Just get all of the input you can and make an informed decision. I would absolutely do mine again.