Mar
Ex Member
|
Hi Sally,
I think you’d be surprised to know that all of what you’ve explained to us so far, sadly we see and hear quite often. Yes the technology could have detected Katie’s MMD over the years, but unfortunately the knowledge about this disease is not out there and still to this day it’s often misdiagnosed or undiagnosed. Delay in treatment is the particular pitfall we see because of the lack of experience and understanding of this disease in the medical community and delay in treatment is dangerous and risky without a MM expert. Even if a patient is lucky enough to be diagnosed with MM before a stroke occurs, we often see many doctors tell their patients to wait for treatment or they tell them not to have surgery or that surgery is too risky, but what many new patients don’t know is, although you may have a very good neurologist/neurosurgeon, many times they just aren't educated enough about MM “the disease itself”, which makes the "risk" more about their lack of knowledge of MM, rather than actual risk to the patient, and what’s important to know is, this is a progressive disease, it gets worse over time and surgical management is the ONLY treatment for MMD.
You are very wise to contact either Dr. Steinberg @ Stanford or Dr. Scott @ Boston for their expert opinion. They are the best MM experts in the country and have done hundreds of surgeries for this disease and they treat this disease on a daily basis. It’s quite easy to get a second opinion and it’s usually free. You simply mail a copy of your daughter’s films for their opinion and they contact you after reading them with their expert opinion, and then you’d know if you’re on the best path for Katie’s particular case. No two cases of MM are alike because of all the individual factors involved, but that’s where the experience of an expert is so important. All the contact information is here on the website or anyone here would be happy to help you.
I can’t emphasize enough how important it is that you have a doctor with real MM experience. I think it’s vital because of the many important factors involved with this disease. Perhaps if I explain briefly what happened in our family, you’ll understand what I mean a little better. In our case, my 20 year old niece had a stroke and they sent her from our local hospital here (outside Philly) to the University of Pennsylvania where she was diagnosed with MMD, and they told us that we had some of the best neurosurgeons in the country there, and that they knew all about MMD, BUT they told us she didn’t need surgery at this time, so naturally we believed them. So, long story short, she had 4 devastating strokes that left her in a coma, on a feeding tube, paralyzed, incontinent, etc and fighting for her life. Thank God I found this website. DJ told us to get a second opinion with a MM expert, so we contacted Dr. Steinberg, at Stanford. We overnighted a copy of her films (MRI/MRA & Angiogram) for his expert opinion, and we heard from him the next day. He said she needed surgery immediately, so we had her medically air lifted from Philly to CA and Dr. Steinberg saved her life.
Please don't feel as though you're rambling. This is all so scary at first, but the more you learn the less scary it is. If you arm yourself with knowledge and get well informed the road gets easier. Don't be affraid to ask lots of questions. If you need any help, please don’t hesitate to ask or feel free to contact me or any other member here.
You, and Katie will be in my thoughts and prayers. Warmly, Mar
|