WOW!!! You really tossed a "hot potato" into the ring with this one!!! ;
We chose to go to one of the specialists for many reasons, even though the nearest one is 1400 miles away. Our thought process/decision making went something like this:
1. Even though we have a LOT of faith in the neurologist and neurosurgeon 30 miles from home, they have NO experience with MM.
2. The intensivist who has been in on almost every procedure done on Sean throughout his life recommended a specialist. (We were told that Univ. of Iowa ... a great facility 150 miles away ... had only done one MM surgery on an adult. Our doc said, "no way is Sean going there!" We checked Mayo (240 miles)website and found no references to MM there. Then we found this site!)
3. We decided that we wanted a surgeon/anesthesia team that had performed at least 50 MM surgeries. For most procedures our threshold is 100 procedures performed; since MM is rare, we cut our expectations in half.
4. We contacted BCH with our request for a referral for someone who had done at least 50
pediatric MM surgeries ... they could find no one in the midwest who fit our requirements outside of BCH. They did invite us to contact Stanford to verify what they were telling us.
I have heard the argument used by surgeons that the first one "in" should be the only one "in" to a given patient. That does make a certain degree of sense, I suppose. But in the case of MM, they like to wait 4 to 6 weeks after the most recent stroke event to do surgery anyway, so IMHO the argument "that it would be of Cara's best interest to use him than to use one out of state in case of emergency after the surgery is long over." is moot.
Let me share an example:
We used to have a foster son who weighed only 11 oz. at birth. He had multiple surgeries on his torso/trunk when he was a newborn. One year later while living with us he was at risk of incarcerated hernia. We, working with his bio parents, chose to use a local internist to do the hernia repair AGAINST the advice of the surgeon 150 miles away who had "been in his gut and knew his plumbing".
With todays imaging techniques and the ability of hospitals to share information electronically, it was simple to get good pictures of the little guys plumbing (liver in the wrong place, etc.) into the hands of the local surgeon. Everything went well, the child just turned 3 and he is back with his bio-family!
From what I have learned about MM in the past month, I have trouble comprehending the advice some have received from their local neuro docs .... not ready for surgery yet; let's try to treat with blood thinners only; not a candidate for surgery; etc. I know that each case is different and that my research has focused on what applies to Sean specifically, but some of you appear to have really been through the wringer when it comes to getting what you need! We are lucky to have a local neurologist who truly wants to learn from the pros and has asked us to keep good notes to share with her!
To answer your question ... communication between the "out of state doc" and your primary care physician is of paramount importance. Do all you can to get those relationships started as soon as possible. Do whatever you can to help facilitate those lines of communication. Don't stop 'til you get what you need.
This post was so long, I didn't think two cents would be enough.
Hope this helps more than it muddies the water!
Steve
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Using Out of State Surgeon (Read 3268 times)
