Get this!My mom just got my old medical records, and in them they knew I had the avm. It was found in a mri scan when I was 17. They sent me to a neurologist and he sent me home saying "Nothing was wrong" We were never told about the avm. So 11 years later I have a stroke. Wow, such crazyness! We have over ten years of records of problems associated with the avm. No layer will touch the case because it is pass the statue of limitaions
Every time I look at this discussion…it infuriates me. What that so called neurologist did is inexcusable. This is why I tell members to get more than one opinion. Not every doctor is a good doctor. How are you recovering from your stroke?
The general problem is AVM's are so hard to see. I had all the tests that should have found it too. Radiologyst need better training....
I've posted this before: When we were first treated at Mass General with radiation, there was a man there about our age going through the same treatment. He had some stroke like symptoms at work, was sent to a DR, who pronounced it "stroke" and treated him as a stroke victim for TWENTY YEARS!
It was only after that Dr retired, and a new younger DR took over the practice, the man, on his first trip to the DR, said "I don't think you had a stroke, but you do have an AVM."
Twenty years, wow! Doctors are human also, and can/do make errors. 2nd opinions are required for us.
Ron, KS
Hi Melissa. I’m sorry you had to go through this. Unbelievable! I didn’t know I had an AV Fistula until it bled, causing me to have a stroke. I always say I could have done without the stroke. I had migraines my whole life. Ive had Many MRIs and head X-rays, but they didn’t find it. Mine was only found when they did an angiogram, which is an invasive procedure.
Melissa....I'm so sorry..When my AVM was found, I went to a neuro doc who told me to do nothing. Quite a few neuro doc's don't know about AVM's. I then researched it online and found a doctor that specialises in AVM's. Even though I was treated, I had my brain bleed 6 months after the treatment. Every situation is different that's the strange thing about having an AVM. Hang in there!
The first Neurologist I saw knew I had an AVM & he said that it was "no problem" and don't have the surgery!!! Meanwhile, I am falling over all the darn time and having small bleeds...if I had not listened to my Neurosurgeon, I wouldn't be here!! Yes, every situation is different, which is why it is a good idea to have more opinions!
I'm so sorry you have had to go through this!
Thank you all for the support! It was hard hearing that the radiologist found the avm, and the doctor did not investigate. For myself I am letting go. It will not help me to be angry about the past, nor will it change what has happened. I am planning on writing the doctor. I am not going to harass him. I’m just going send one letter. I am going to send; the radiologist report about the avm in my basal ganglia, the report from him saying I had nothing wrong, and my current record of a bleed/stroke from an avm in my basal ganglia. I am going to ask him to please pay more attention to his future patients. I hope I will be able to make a difference in someone else’s future! I am counting the blessings I have, for how well I have fared through this whole ordeal. I have grown as an individual and spiritually. The stroke has not destroyed me. It has given me an opportunity to grow
Super Hurrah! Good for you!!
Great idea Melissa,
I'd include a nice photo of yourself, so that he will put a face to your name. I bet it will affect him, hopefully for the better.
Ron, KS
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That’s a great idea. You have a positive attitude which should serve you well. Please let us know if the Dr responds.
Great idea, Melissa & I hope your letter has a positive impact! :)
I have multiple Cavernous Malformations, CM's (in same vascular malformation 'family' as AVM) & a similar thing happened to me. A sm town ER dr. & a rural neurologist passed off the need for an MRI after having a seizure. After my insistence for an MRI, it was concluded I'd had a bleed requiring surgery.
I too wrote letters & while I did not receive responses, I felt better in speaking up for myself & hopefully making a difference for another pt.
Best wishes! :)
The funny thing is that the radiologist found it. The neurologist that said nothing was wrong. My heart goes out to you and all of us who could have caught this earlier!
Yes, Barbara I agree with you! Not only is a second opion importtant, but to get a copy of your own record. I have been been going through each record, and there is so much stuff they never told us!
Yes, they are very much human and expected to makes mistakes. With the positions they hold it is important they remember to take the time with each patient, and investigate further into possible diagnosis. A second opinion is very important!
Wendy, I am sorry you had to go through this too!
Oh, yes! We might all have the same condition, but we all have a diffrent story! I am glad you were able to find a doctor, even though you had a bleed! Did you have Radiosugery? I'm heariing alot of people haveing a stroke after that treatment. I will be having that treatment after a few embolizations. My doctor said that the embolization is more dangerous than the radiation. I haven't not found anything to support that! I wish you luck in the future!
Thank you,Lesley! I am glad you found a Neurosugeon that was able to help you!
Thank you!
I had a friend say the same thing. I will definitely add a picture. I hope it will effect him for the better too. It is not my intent to harshly make him feel bad, just a little wake up call. To take the time that the patient is paying for!