@chrystaltree wrote:
You are right, she has had a tough time. There isn't much you can do except put one foot in front of the other and keep moving forward. I won't wish that you find "nice" people; my wish for you and your daughter is that you find smart, experienced and knowledgeable medical professionals who can provide the medical care your daughter needs. Living in the Boston area, I think I'm spoiled. We have our choice of top knotch specialists and world class hospitals and forget that it's not like that everywhere. I think it's not a matter of specialists not wanting to see your daughter. That isn't the case. Specialists usually have long waiting lists because they are specialists and there are so few of them; they reserve the earliest appointments for people who are seriously or critically ill. I am confused as to why YOU had to find the specialists and then try to get an appointment. I would have thought that the since the rheumatologist was recommending a neurology and a consult, he or she would have recommended a neurologist and perhaps even had his office make the appointment. That's the way it's done here. But it's fortunate that you knew someone who could help you. Hopefully, your daughter's team of doctors will come up with a diagnosis and treatment plan that will get your girl back on her feet again.
I must say I agree with everything you have said, from personal experience. When my SIL started experiencing very strange symptoms, he went to a specialist in CT who was supposedly top in his field. He suspected a tumor in his brain stem, and he guessed a rare tumor which is always fatal. Way too much time spent with team of experts trying to reach agreement on how best to get sample.
Enough was enough. He contacted Mass General, and he was immediately seen by a TOP neurosurgeon, who said he disagreed with the original diagnosis. He spent a great deal of time explaining his procedure to get a sample, etc. We all went up to Boston, staying at a hotel close to the hospital, even with discounted rates. The procedure lasted 5&1/2 hours, with another specialist assisting the neurosurgeon, to get a sample. Diagnosis was a benign growth, treated with a drug, which seems to have entirely disappeared. All check-ups since have been normal.
I have no words to describe the expertise, care, and concern SIL received from this doctor, as well as how well Mass General treats families. Even therapy dog visit for all folks in the waiting room, as well as updates for all families waiting. We would have routine things treated locally, but we will go to Boston right away for anything serious. We will always ensure we get coverage for out-of-state medical care.
I do do hope and pray this girl will receive top care.
Blogs & Forums
