How would you positively use a negative experience to built awareness?!

Number One:

I was told "inoperable" by 2 local neurosurgeons. One was cold and harsh, one was very nice. What they both had in common is that they both told me "there is no way you can ever have surgery" So i took that and went home. I was told it was not a matter of if but when it would bleed again and i would lose quality of life or die, and having surgery would just most likely kill me.
I joined this forum and quickly learned that inoperable often means that "they" cant do it. When I was in Arizona, not once did I meet someone who was not referred by their own neurosurgeon who admitted HE could not do it! I am sure my neurosurgeons are not the only ones that do not refer people but they cant be that naive? do they just dont want to admit it or what? What would be the best way to address this with them? or is that useless and i have to focus on the patients....

Number two;

In February, I was rushed to the ER because all over sudden, without any crisis etc i could not breathe, swallow and could not move. I was in the hospital 3 days and one by one, 2 doctors and 1 neurologist told me that my symptoms had nothing to do with my medical condition (Cavernoma in the brainstem) Only when i got home i found out brainstem control breathing and even just pressure without bleeds can cause trouble!! They gave me a CT and it showed no bleeding or stroke, so they ruled out everything. THey told me I was having anxiety attack and sleep deprivation. I told them I was not a anxious person at all and i could not sleep because i could not breathe duh!! I was sent home despite me telling them It was hard to breathe.
The next night, I would wake up gasping as soon as i would fall asleep, like if i forgot to breathe when i was aware of it. My husband took me to another hospital, one that has a neuro wing, at 3am. When i got there, i was sweaty, chills, my mouth was totally dry and i could hardly walk. We told them what happened a few days earlier and they got my CT scan results from the other hospital despite me nicely telling them CT wont show microscopic bleeds. Being in a Neuro hospital I assumed they would give me proper testing.. well guess what... after spending 5 hours in the ER room with my husband holding me up because i couldnt breathe laying down and i was falling asleep because i had not slept in 4 entire days, 4 neurologist residents came back (they assessed me earlier) and 2 neurosurgeons (1 resident, 1 not) and they told me "anxiety attack"... I told them at this point i did not care what it was from to just help me!!! By that time, my husband had been on the phone for 5 days with Dr.Spretzler office and the next day we had my march 1 surgery date. I truly believe i could be dead by now. Dr. Spetzler assistant that my symptoms were 100% consistent with a microscopic bleed and it does not take much in the brainstem to cause serious problem and breathing was a very very bad sign. They told me to get down there and even tho they never saw me and i was 2000 miles away, I had a surgery date less than a week away!

You know the rest of the story, but my husband and i were so mixed up and we had to put all our faith in people we had never seen just by talking to them on the phone and who had not run tests, against 8 more Dr who told us my problems were not related?!?! we decided to trust the ONE best specialist in the brainstem (Dr.Spetzler) against the 8 ones that did not specialize in it but have seen me. I even started to question myself if it was not "just" anxiety! When i got to Arizona, Dr. spetzler assisstant confirmed it was NOT anxiety and he didnt put my local neurologists down but you could tell he was in awe and repeated to me that it was not anxiety and i came to the right pace.

What would you do so this does not happen to someone else? I cant be the first and am not the last. If it was not from my husband knowing hhis wife does not have anxiety, we would of gone home and what i would of had a major burst and die a few days later?!

I dont want to "sue" anybody. I want to be pro active in a positive manner? Do i go back to these Dr. and say "remember me???" haha I want to help and i want to change the way they do things. but how?

Hi...i read ur post..... can visualize what the scene would have looked like for both u n ur loved ones.......i get your point.... when common man trusts the doctor n then at the end of it doctors have conflicting or varied diagnosis... which is why in most AVM cases ppl r never satisfied or feel safe surrendering to one doctor..they take multiple opinions...unless & otherwise u r in the hands of the best in medical industry...

with regards to being pro-active to avoid emergencies....guess its the routine precautions....ur family must be groomed to be reacting swiftly in shifting u to hospitals even when small attacks or symptoms reflect inspite of the patient claiming that he/she can manage the pain...

lastly the feeling one goes thru....after experiencing such helpless conditions....i can imagine that feeling of insecurity in medical diagnosis n feeling void....but i personally feel common man can do very little in influencing how the medical industry reacts to such emergencies...its WE who need to be pro-active n try to insist on emergency consultations the minute we suspect something is fishy about the way our body responds...

Bangalore, India

totally agree!! Well my husband try to be insistent and they were about to start a verbal confrontation about it. Its not worth it. It just showed us how easy it is and i cant imagine the number of people out there that this has happened to and t hey just gave up. I didnt give up...

Wow, what a frustrating, scary story. A similar (less serious) thing happened to me. My doctor wouldn't listen when I said I was allergic to the NBCA he had put in my head. I got sicker and sicker for 2 months until I went and solved my own problem. I plan on taking all of the objective proof that I have gained over the past few weeks back to them. Not because I am mad, or want to sue them, but so that this wont happen to someone else. I was lucky that the glue was on the outside of my brain. But what if someone with an AVM inside their brain started presenting with similar allergy symptoms and were treated like I was?? They would be in for BIG problems! I don't want my experience to be for nothing.
I have learned that doctors have a really hard time admitting to themselves that something is beyond their expertise. And instead of admitting it, they just try to solve the problem...and that doesn't work!

This type of story is very common for AVMers. Doctors offer opinions based on their own experience, which is sometimes very limited. The best way to help is to stay active here on the website and help other patients advocate for themselves, as most doctors do not want to hear that they were mistaken.

I have had experiences too, where they were not looking out for my best. I have a rare esophageal condition called achalasia. For two years the gastrointestinal dr. continued to misdiagnose until finally I could not eat or drink. In the nick of time, I went to a doctor who told me what was wrong and sent me to an excellent surgeon. After my surgery, one of the interns called for a follow up to check on me. I told him that by the time I had surgery. I was to a point of needing to go to an emergency room and I said I wonder what would have happened to me if they had not known of this condition. He said, they would have cut on you anyway and botched it. He said, we see it every day!
Now, with my son's avm, it has been similar, the doctors here wanted to put him through from five to ten embolizations and then surgery. My husband asked the surgeon how many avm's he had done. His answer, "I've done a fair number." Evasive answer, huh. It goes on, other doctors wanted to do other treatments. Then I started thinking back about a teacher friend I had who died after surgery one summer. She had been in a car accident and when she returned to work, I asked her if she was ok. She said, yes, but they found something that needs to be addressed this summer. That was seven or more years ago but I knew how to get in touch with her father. I called and asked him what the surgery was about. He said she had an AVM, no bleed, no symptoms. I then learned it was done at the same hospital my son had gone to, I don't know who the doctor was, I don't know if it was his makes you wonder.

That is scary!!! I am glad you pursued your instinct!!
I am new to the being your own advocate world! i was never sick and always trusted my Doctors so much!! I now have such a different view...

:) THat is exactly what i have been thinking!! Its only after i came here and read that started to wonder!! Being told on here that Inoperable sometimes just mean HE can do it and went from there

wow so scary.... i really think that more people die than we can imagine that could of been avoided... its sad :( That is such a sad story!! I guess I need to be glad the Doctors at the ER didnt want to touch me!

Hi Dandelion,

Your story, your experience is why we have to be our own advocates. It's very sad that we can't trust the drs. who say they know something. When in truth, very few of them do when it comes to AVMs. I was misdiagnosed by 3 local dr.s when my symptoms first appeared (in 2007). I called the AVM specialist myself, whom I met 16 years prior. He diagnosed me over the phone. He told me, over the phone, that I had all of the symptoms of my brain ready to bleed. We did an angiogram and scheduled the GK within a month.

He very politely gave one of my drs a slap in the face. He wrote him a letter thanking him for sending me to him. Which he knew the dr. did not. And explained to him how lucky I was to get to him in time. I was given a copy of the letter and when I read it - I couldn't help but, to laugh.


I couldn't help but, to read your story again. I'm still amazed at all you've been through with the other drs. I just wanted to say that I believe you have the right attitude. We do need to see that drs are better educated about our condition (for lack of better wording). How we go about that - I don't know.

Perhaps you could write a polite letter to the head of the hospital (the one you first went to). Explaining all that you've been through and what you would like to accomplish.
As long as you word things politely and respectfully (which I'm sure you would) - I am certain you will get a reply. Maybe even some suggestions. The trick to that is -- Compliment the drs. you did see. Even though they misdiagnosed you, compliment them for trying or, something. Make them believe that you are on their side. It will get you farther in the long run. I've dealt with higher ups before.... It works (wink).


Hi dandlelionswishes ,
so happy to read your post ,you just keep getting better..My brother had a Shunt put in after 6 weeks in rehab and was not going nowhere, we could not understand why he was so good when they had the drain in and the doctors were going to do the Shunt and one weekend they took the drain out and 4 days later off to another hopital closer to his family and in a matter of 2 days He was confused his balance was no good could not walk and stay liked that for 6 weeks in Rehab and we are a close family and said to the doctors why didnt they do the Shunt ...finally after 6 weeks he had the shunt put in and by the next day he knew what his address is and who we were and that is 3 weeks ago and tomorrow he is leaving the hospital, good as knew walking out with no aid and our brother is back he is 99%... wants to go back to work and have a big party ... I hate to think that someone that didnt have family and they were put in a nursing home, our brother was 24 hours care in that 6 weeks .... now you cant stop him .... god bless

All I can say is that you & your family know yourself better than any doctor does. My parents ignored the paramedics who were ‘supposed’ to know what they were doing & instead told my parents I was ‘fine’ and just had the flu. People who are proactive in their health and how they are feeling will find problems and get taken care of faster than people who agree with doctors etc. just because they are supposed to know what they are doing…

What a scary story!

With just an initial reading of your note, here's what I would do:

If Dr Spetzler gave you a written report of what he found in your case, and what he did to fix it, I'd copy that report. Then I'd write a personal letter to each of the local Drs who saw and "treated" you. In this letter I'd say "I was a patient of yours on _________. I complained of these symptoms: _________. You found nothing wrong with me and offered a diagnosis that was completely WRONG. Please read the medical report attached from Dr Spetzler to see what the correct diagnosis and treatment SHOULD HAVE BEEN in my case. If you would like further information about this or care to discuss the matter with me, please contact me."

I would stop right there and let them stew over whether you were going to sue their A$$es off or not. At the very least, they owe you an apology for their incompetence.

My two cents,
Ron, KS

Thank you for sharing your story. You are soooo brave. What a leap of faith. I wish I could say that I am shocked. IT just seems like this stuff happens all of the time! All we can do is fight when we know something is wrong. Keep fighting. Every doctor has their limitations. We can only fault them when their ego is too big to admit it and send us onto someone who can help. The first time a doctor told me "I don't know' I was shocked, but then I was glad that they could at least admit it! And be honest. Because then I knew I had to find someone else.

Yes, send the full report to the head of Neuro at the hospital, cc: all of the doctors that you can remember. Also send it to your original doctors in AZ. They can all learn! So many doctors become stagnant and fail to keep up with advances in their own field. And some are just not skilled enough to deal with the most difficult of cases. It would have been nice if they could have admitted it instead of saying it wasn't treatable!!!

Also those doctors will now know the name a doctor that can handle your type of case. This is not the first time I have heard of doctors leaning too much on imagining rather than doing a clinical exam. (My friend was in the recovery room after having her appendix removed because it burst when her doctor called to tell her that her MRI was normal and her appendix was fine.) She said "I have something to tell you!"

Hope you are feeling better!

Thank you Ben!!
I agree with you 100% and that is the way i do it too hahaha I have not yet written a letter as i focus right now on encourage people to NOT settle for a "inoperable" verdict!! We cant change the way Dr. are, but we can encourage others to be their own advocate.

Thank you! You are so right, and its only when we have something serious going on, especially something rare, that we realize they dont know it all like we thought they did! becoming proactive is everything!

WIlliam, I am so glad to hear this about your brother!!! I was thinking of him the other day and was wondering how he was doing! I am really happy!! 3 months ago you would of never thought you say that!! 99% back, YAY!!

Thanks dandelionwishes, how are you going now ?

Every day i am tempted to show up with my walker and show them my head scar and say "look, i had another anxiety attack!! hahahahahaha