Comment

Comment by Ksucat on January 28, 2013 at 2:33pm

Where are you sending yours? I was going to send them to Barnes-Jewish like you suggested but they will not even look at them until I had my appt. That is crazy. Why would I drive 12 hours if they can do nothing. They charge for looking at them anyway, why do I have to meet with them first? It upset me because I read the paper that Dr. Darcy did on staged embolization and radiation for successful avm cure.

I called Barrow Clinic and have number and address of Dr. Spetzler if you don't have it. I am also doing Stanford and Mayo. I have no idea how I will afford this financially but I see no other choice right now but to travel far.

I am not even looking at the surgical route. Embolization and radiation was the suggested treatment. Would love to do just radiation but think the size it too large. I have no effects except one seizure while I was sleeping.

Comment by just call me jules-babe on January 28, 2013 at 12:45pm

Hi EWillis - I personally think that including a cover letter with your medical records is a fantastic idea.

Like a cover letter to a resume, for example, in which you can feature your particular strength to the each particular employer need, you can do so in the same brief fashion with your medical records.

Instead of a "match", in this case, your recap of your AVM story, previous diagnosis, symptoms, etc...good luck with making that brief. For me, that would be a great challenge :)

Comment by ewillis on January 27, 2013 at 10:05pm

Hi JoAnn, Thanks for replying to my post. I have copies of my neuro history and CD's that have my BMRI, Brain angiogram, and other imaging tests as well. I am sending the letter below as it is expensive to mail each package and paying $100.00 for a review for some of them means I can't send as many as I would like. So, I'm hoping this cover letter will increase my odds for finding the right doctor.

Comment by JoAnn on January 27, 2013 at 6:04pm

Hi Elizabeth,

I think sending a cover letter along with your medical records is an excellent idea. One of the members suggested I send my medical records to a surgeon and I immediately thought of sending a cover letter highlighting my experiences with AVM. Sending a cover letter will give brief details about your experience with AVM which I think is important because the neurosurgeon and his staff gets to hear your frustrations of dealing with your AVM upon reviewing your medical records. Do you have your medical records on compact discs (CT Scans and MRIs) and hard copies of your reports? I asked this question because I was wondering if a neurosurgeon would need the CDs or will hard copy reports be enough? Keep me updated and best of luck finding a neurosurgeon.

RSS