I feel so helpless about helpless people...does that make sense?

I so dont want to sound pessimist here.. but I have been struggling with making sense of all that happened here in my local hospitals. Because of what I have been thru, I keep thinking of how many people died that were put in same position as me but quit too soon just because we are not the doctors... when they tell us there is nothing else to do, we believe that! I did when i was first told "inoperable". I was deteriorating, not doing anything about it, because i really thought there was nothing I could do... but how did i "thought" so if all it was, was believing blindly what i was told?

I can totally understand that at the time, these Doctors truly believe it was inoperable...
I was told I had a Cavernous Malformation in the brainstem and a deep brain AVM in the thalamus. I was told by my neuro surgeon that it bled twice, another one told us it never did. When all over sudden I couldnt move, swallow or breathe and was overcome with the most painful feeling ever last February, I was taken to a hospital that doesnt have a neurology wing. I just needed to be brought up to the closest hospital... Long story short I had all the signs of a mini brainstem stroke, or a bleed. They did a CT. They saw nothing. They told me my symptoms were not related to my conditions. They told me it was caused by anxiety (I do not have anxiety, if anything, i wont worry enough!) They sent me home.

I was blessed to have found a amazing neuro surgeon that without seeing me told me I was having a bleed, a bleed that didnt show up on CT. I traveled very sick and had the "inoperable" surgery. After the surgery, Dr.Spetzler went in the waiting room to explain the surgery outcome to my husband. He removed the cavernoma in the brainstem, in the Pons (something i didnt know the exact location) and it was NOT a AVM that I had in my thalamus but a certain other type of malformation of surrounding blood vessel that he decided to clip. I didnt even know this information until later. It was also confirmed that I was having a very small bleed. It had caused such devastation in me because of the location of the bleed.

What amazes me is all the conflicted opinions I got... and the lack of information. Do Doctors purposely dont tell us all just to send us home? I cant believe that. I struggle with guilt because I was blessed to not only live but have no loss of permanent quality of life (I do now but i am still recovering) and so many people trust in their doctors, as we know how, and it scares me to think if that is just what happened to me... how many thousands out there , that were not as fortunate, not just AVM's but all kind of illness.

This is a pointless post. I just needed to express this I guess.

I feel helpless... like i want to do something about this, but dont know how. I do the best I can to talk to people into trying more , asking more, researching more... but isnt there more I could do?

This just shows how important it is for each of us to take charge of our own health. Seeking other opinions is necessary when one is dealing with a rare condition. Thank you for sharing this!

If your local paper has a health news section, you might tell the editor about your story and ask if they would run a feature on you. Many people have been helped with a diagnosis or treatment because they remembered reading a story in the newspapers...

Hello
I agree with both Trish and Dancermom
My area has an online city blog where anyone can post a story etc.
whether its something as serious as an AVM or a skin rash that wont go away. I always have kept pushing my doctors.There is an article in this months AARP magazine that talks about a doctor who had a young patient who had tongue cancer and the patient asked how the treatment would impact her ability to have children...the doctor said look I am not concerned with your ability to have children I am concerned whether you are going to live....well the patient would not take this lightly and got fertility doctors to take to the surgeon etc and decided to freeze her eggs> also she pushed the doctor to do creative surgery so she would not loose her ability to speak. The doctor said this patient made her a better doctor and still keeps in contact and 12 years later the woman is married and has 3 kids. Hopefully some doctors read this- I have fired plenty of doctors
when you are feeling better you might also look into becoming a patient avocate. That is my plan if I loose my job.
Angela

You are spot on! We have been told to not act up!Knowledge will stop the pain and screaming it out to the top of your lungs.

Someone at the University of New Mexico has submitted a Bill to have a one stop shop place for patients and physicians. It is bill BAI13475. There is also a website called International Angioma Alliance. The World looking at this disease!

We have to work collectively in order to move forward with accurate knowledge, treatment, options. It took us 8 years to get accurate information and treatment of this disease, some die before they ever get there. We all on this site are the lucky ones. Knowledge is power and collectively we can change this together! We must!

You couldnt be more right!

I know the media is a great tool to use! I am just not sure I would like that kind of attention, but if it could help someone, i guess so! I just dont think my story is that much different than so many others out there. I was just more fortunate and lived to see the outcome .

WOw that is a great story. That is the perfect example of someone who informed herself and did everything she could. We should ALL do that! I think in the end, the most positive we can do is really to build awareness on the importance of knowing every single aspect, big and small, of our own medical condition. To not just be satisfied by blindly listen what we are told.

I have a friend who has a lot of friends in the media industry... it wouldnt be too hard for me to do something liek that if i really wanted to.. i just.. dont want to attract any attention on me! I dont want this to be about me! but i know how powerful the media can have.

I think in the end ,that is how we change thing... one person at a time! We have to insist to people that they have to educate themselves on their condition, every little aspect of it!

My name is Dave and my wife does most of the typing and her name is Barbara. We've been married 43 year, have 3 married children and 6 grandchildren and twins (granddaughter and grandson) on the way any day now.

We have been in this fight for a long time, sometimes it is so very hard, other times the day feels perfect. More importantly any pain I'm going through or not I know that someone out there just got diagnosis and doesn't know who to trust or where to turn. They are alone in the dark, collectively we are the light. We share our pain and sorrow our bad days and good, we understand there is no cure and only surgery controls this disease of our brain bleeding out and stroking or worse yet dying.

That is exactly why we do care so much for those that feel helpless and sorrow for those that have been told things like it is all in your head, your fine, or go fish'in,or inoperable! BS This is what several Neurosurgeon, Neurologist have told me and my mother( who pass away at the great age of 83 of natural causes),myself and daughter and son. Sorry I get fired up sometimes! Pay it forward, is how you can help the helpless. Go to the media tell your personal story, don't be afraid to call good care good and bad care bad. It is our life we are trying to save others. Teach, educate, empower! It was Patti G. and Dr. Steinberg/Stanford and a amazing primary that was so instrumental in walking with us into the dark and reassuring us and working with Dr. Steinberg and coordinating my care. Collectively again I am alive today and so grateful and humbled and to pay it forward, so that you in turn can also share the light.

Dave and Barbara! :) You did tell me before. haha its ok, i get fired up too, you dont have to apologize! It just means we get passionate about the subject! That is so exciting about the twins! Everybody must be impatient to meet them!

I feel very bless that it was not years and years for me to live with this knowing it could give me a stroke or kill me any day. It was bleeding often and progressing very fast and i was told it would not be long , but I was fortunate to find a surgeon before it was too late. I wish everybody could say the same... :(

You and I got the Best of the Best I feel. Dr. Spetzler and Dr Steinberg know this disease like the back of their hand as the saying goes.

We are blessed, but now more people through these sites and blogs have the information too and can be saved and guided.

Oh here is the actual hyperlink to see the bill that is being presented to the Senate for review to bring all research, treatments, physician, hospital that treat, research on this disease, pass it on. I have reposted this info in our AVM Site. Here is the hyperlink regarding the Bill on pass it on!

CCM:http://angioma.org/documents/CCMBillToBeIntroduced2013June.pdf

O tottaly undesrtand and relate to your post. I also do my own reserach, which helps me a lot to advocate for my son but also add a dose extra of anxiety. I also talk to people into trying more and asking more, speccialy moms with sick children. Conflicted opinions and lack of experience in avms, it happens all the time. I am glad Dr Dr.Spetzler got the avm. He is a very special man like Dr Atos, who performed my son second surgery. Lots of love !! xoxox Erica