Hi Michele,
Jenn here again. I understand the hardship of living with the uncertainty and fighting for every little bit of progress you make in getting your child the care he needs. At the risk of sharing TMI, here goes:
When I first brought up MM to my daughter's neurologist, he would not even entertain the notion that she could have MM even though she exhibited EVERY symptom. He said she was in "too good a shape to have it" and he told me that I was just being a worried, over-anxious mom. Not until I reached out to Dr. Scott at BCH and requested that my daughter's neurologist review all the correspondence Dr. Scott & I had, would he even begin to consider ordering the diagnostic testing. And even then he did not make it easy for us - he refused to accept the correspondence between Dr. Scott & me by email, citing patient privacy laws as the reason for his refusal. It didn't seem to matter that Dr. Scott had been willing to correspond with me via email about my daughter's case. Ruby's doctor knew he was in trouble at that point and was trying to avoid the entire situation by choosing to hide behind the privacy law ruse. He kindly told me I could put all the correspondence in the U.S. mail and that he'd look at it "when he got around to it." I was at his office the next morning when they opened with the correspondence in hand and called every day thereafter until I got him to agree to order the diagnostic testing. Even then, he wouldn't follow the protocol of tests recommended by Dr. Scott, b/c even though this neurologist knew nothing about MM, he thought he knew better than Dr. Scott, so he ordered a CT angio instead of the MRI/MRA recommended by Dr. Scott. Of course, after the CT angio confirmed the MM diagnosis, then he ordered an MRI so he could compare it to the 2007 MRI for any new lesions - of course they were there b/c Ruby had had several strokes at that point that he had misdiagosed as seizures. I was so furious that she had to be anesthetized twice, when if the neurologist would have just followed Dr. Scott's recommendation, we could have gotten thru the testing with one round of anesthesia. Needless to say, I have contacted an attorney to protect my child's legal rights due to this neurologist's gross incompetence. However, what I have learned is that he has hired himself out as an expert witness to so many law firms in so many malpractice cases, that it is difficult to find an attorney in our city of 2M+ people who can even have a conversation with someone interested in learning whether it might be appropriate to pursue a claim against him.
My second battle was an insurance battle. I am employed by a hospital and the insurance offered didn't permit us to access any surgeons outside the hospital's own doctors. The first surgeon we saw thru my insurance claimed to have studied under Dr. Scott, told me he had performed the procedure "about 6 times" and typically referred any MM patients to Dr. Scott in Boston, even though there is an excellent pedi neurosurgeon with a lot of experience with pial synangiosis (who ended up being Ruby's surgeon) across town at their "rival" - the only other childrens' hospital in town, which has a rich history (100+ years), is affiliated with a major medical school and has a stellar reputation, unlike the children's hospital of my employer, which has only been in existence since 2002. However, that surgeon had marching orders from my employer that he was not under any circumstances to refer us to anyone - that he would be the one to perform the surgery in order to save $$$. Well, with little to no experience, I knew there was no way that this surgeon would be doing the indirect bypasses that my child needed, so I fought tooth and nail for 3 months to be able to get my daughter to the other surgeon. During those months, I was crazy with worry that she would have a major stroke before the surgeries and every day that passed without answers seemed like a year. Thank God I finally won the insurance battle, but at a high price to my pocketbook (I now owe LOTS more $$ than I would have under my original insurance), my sanity-it was difficult for me to focus on anything other than my daughter's medical issues & ensuring that I could get her to the right surgeon, & possibly even my career (that remains to be seen - I believe that my employer will now be looking for any reason to eliminate me &/or my position, due to the fact that I was so vocal about who I would allow to care for my daughter and that it would not be "our" hospital/surgeons). No matter - my daughter was able to have the surgery with the RIGHT doctor and that is all that really matters. She just shouldn't have had to wait so many months after diagnosis to have her surgeries. One of the first things Ruby's surgeon said to me after her first surgery was how thankful she was that she was the surgeon who had been able to take this case. She said that Ruby's right STA had vessels branching from it that could have spelled disaster for her in the hands of a surgeon with little to no MM experience.
Finally, I have had huge issues getting her reintegrated to school after surgery. I think we are finally on the right track, but a school official violated her civil rights last week by refusing to allow me to request an evaluation to determine if she qualifies for special education services under Other Health Impairment so now I'm faced with the decision whether to pursue a legal battle with the school system......
The fun just never seems to end, and I have to tell ya, I'm one worn out single mom....but I am so glad that *I* was chosen by the China Center for Adoption Affairs to be this child's mom back in 2004. It is an honor & privilege for me to be able to fight these battles on my daughter's behalf, and I will fight for her to my last breath if necessary. Anyone who doesn't realize that about me, will learn it soon enough, as school officials are about to find out.
Please know that you are not alone Michele.....many of us have battled obstacles to getting the care our children need. It shouldn't be this way, but for some reason that seems to be par for the course. We are here to support & encourage you every step of the way. GO MICHELE - you are a great mom!!!
Jenn